Joint Forward Plan Appendix 9

Appendix 9: Detailed Live Well Domain Plans – Stay Well

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1.1 Stay Well – Supporting adults with health or care concerns to access support and maintain healthy, productive, and fulfilling lives

1.1.1 Elective Care and Diagnostics

Why is this important for people in Suffolk and North East Essex?

The best planned treatment and care, when and where people need it, is essential if everyone in SNEE is to live well.

The Covid-19 pandemic had a fundamental impact on our ability to deliver the expected waiting times of 18 weeks from referral to treatment and 6 weeks from referral to diagnostics for routine elective care. During that period resources were prioritised on the most urgent patients and those with cancer, patients were not coming forward to their GPs and referrals slowed. The impact of this was a significant growth in patients waiting longer and, in some areas, a catch up in referrals, most notably in cancer which diverted resource from the longest waiters.

We are striving to recover the waiting times through managing demand through targeted population health work, increased activity, and productivity and a focus on the longest waits. We are working closely with the independent sector to maximise the total capacity within our system. We will support people who are waiting through our waiting well schemes and seeking to address any inequalities in the elective care system through close monitoring and positive action if needed to close gaps.

All of the above is subject to us managing the risks we have in the system, specifically:

• workforce: improving recruitment, retention and wellbeing are critical to our success
• physical capacity: we have several major capital programmes planned that we need to deliver on time, for example: the elective orthopaedic centre in Colchester (2024); the Community Diagnostic Centre (CDC) in Newmarket (2024); and the new hospital in west Suffolk (2030), which will bring step increases in capacity
• funding: the rate at which we are able to improve is, in part, dependent on the financial settlement we receive over the course of this plan

What do we know about people’s local experiences?

• Location, convenience, and familiarity of services is important to people; positive past experiences influence future decisions
• People are willing to travel to another hospital within the east of England to reduce their waiting time
• Honest, open communication is important to people, particularly surrounding wait time for treatment
• People find communication and information inconsistent, and this leads to miscommunication. Appropriate, accessible information supports mental and physical wellbeing

In August 2022, Healthwatch Suffolk published a report on its findings in relation to peoples Experiences of Elective Care Delays in Suffolk. The Healthwatch report highlighted:

• 55% of respondents said their ability to take part in community life had been impacted upon
• 51% of respondents would be willing to another hospital within the region to reduce their waiting time
• 39% felt they had access to the right help and information to manage their condition whilst they waited for treatment

The report identified the following areas that could have been better whilst they were waiting:

• holistic management of people waiting for care
• information and communication
• inequality and data transparency

How we plan to make a difference

Our strategy has been built on the information available to this date. We will strive to continually improve our strategy through incorporating ongoing feedback from patients and the public, including co-production of our plans wherever appropriate; using information gathered from our developing demand and capacity forecast models; and utilising data about specific groups of patients using PHM intelligence.

As an ICB we will ensure:

• people have access to the right treatment and support to prevent, treat and manage conditions
• people have planned and non-emergency treatment and surgery when they need it, and in the place of their choice
• people have the best experience of planned and non-emergency care

People have the right treatment and support to prevent, treat and manage conditions

Improve our understanding of need: PHM is about using data from a range of sources to form a more precise picture of the health needs and determinants of health in our population. It enables us to target and focus our resources in a more tailored way to those who need it most. We will combine this intelligence with the views of patients and public to improve our ability to offer patient centred elective care.

During this five-year plan we will:

• significantly increase our capacity to undertake PHM by investing in additional posts and expertise (see section 7.6 Population Health Management and 8.5 Intelligence)
• implement our plans for a system wide Intelligence Function which brings together and develops the expertise we have across our system to enable more focussed and informed interventions that make a positive difference for patients (see section 8.5 Intelligence)

Improving access to diagnostics

In order for patients to access care in a timely and effective way it is important we have faster access to the most appropriate diagnostics. We will:

• implement new technologies to improve our targeting of diagnostic capacity and to prevent the use of unnecessary invasive investigations. For example, we have implemented colon capsule Suffolk and North East Essex Integrated Care Board – Joint Forward Plan 3 technology which reduces the need for an endoscopy and will look to expand this further
• use our collective capacity across our hospitals and independent sector providers to ensure waits are broadly comparable across the system, our aim being to reduce diagnostic waiting times to six weeks for all the main modalities by April 2025
• continually analyse our patient pathways to reduce inefficiencies and bottlenecks that slow down progress to treatment. For example, through the extended use of Faecal Immunochemical Tests (FIT) to ensure we only scope patients who need it
• continue to increase access to CDCs within SNEE ICS, opening a further facility in Newmarket in 2024; thus, supporting the intention to ensure our whole population is covered by 2028

People have access to services that will support maintenance and optimisation of health whilst waiting for treatment:

In response to the increased waits for outpatient appointments and long waiting patients the Together We Are Better Workstream was established with several initiatives taken forward.

As an ICB we recognise the impact of the COVID-19 pandemic has led to people waiting an extended period of time for surgery. We will therefore continue to work with wider system partners and third sector providers, such as Turning Point, Feel Good Suffolk, and the Essex Wellbeing Service to ensure patients remain as well as possible whilst waiting for treatment. The ICB has launched a system level wellbeing website.

In early 2022 WSFT undertook a “Waiting Well” pilot, engaging with 100 patients who were waiting for orthopaedic elective surgery. The aim of this pilot was to ensure people waiting for surgery were supported and had access to information. Of those involved 45 were referred on for additional support and seven were removed from the waiting list as they had received treatment elsewhere. 85% of those involved felt they had benefitted from the initiative. The ICB is further developing this workstream. Similar initiatives were carried out by ESNEFT. We will:

• build on the concept of a “Surgery School”, ensuring those who have a date for surgery are prepared, thus reducing the risk of cancellation whilst also improving recovery time and treatment outcomes. Maintenance of the activities of daily living will be encouraged, patients reminded to drink, eat and mobilise
• engage with the CQC’s peri-operative pilot project, in particular in relation to fractured neck of femur and benign hysterectomy and look to implement, a visit planned for March 2023
• provide enhanced prehabilitation by developing “Fitter for Surgery”, a programme that offers holistic support to those waiting for surgery by Quarter Three, 2022/23
• continue to develop the North East Essex Pre-surgery wellbeing programme
• respond to Healthwatch Suffolk’s findings relating to elective delays by ensuring services communicate effectively and support mental health and social and emotional needs as well as offering symptomatic support
• implement an integrated Waiting Well pathway for people on the trauma and orthopaedics waiting list in West Suffolk. We will use patient feedback to iterate and improve it, then use the learning to create similar pathways for other long-wait specialties

People have planned and non-emergency treatment and surgery when they need it, and in the place of their choice

Reducing the time from referral to treatment by continuing to monitor and refresh our plans for the recovery of waiting times following on from the increases experienced in the pandemic aiming to eliminate waits of more than 18 months by the end of March 2023 aiming to reduce the maximum referral to treatment waiting time to 65 weeks by the end of March 2024 and then to 52 weeks by the end of March 2025 creating sustainable capacity to enable waiting times to fall. The purpose of the Elective Care Programme is to be a platform that sets out the delivery plans to provide sustainable elective services across systems for our population. Our plans will enable us to do things differently, creating additional capacity and changing for the better the way services are delivered, while giving patients more control over their experiences in the NHS. We will:

• reduce the times patients are unnecessarily called to outpatients by offering more advice and guidance to referrers, offering virtual appointment options, and developing opportunities for patients to only initiate their follow up if they require it
• implement areas of good practice within specialities as detailed within (Get It Right First-Time initiatives) to achieve not only cost efficiencies but also increase patient and staff satisfaction
• ensure high volume, low complexity procedures are carried out as efficiently and effectively as possible
• ensure our operating theatres are fully utilised as far as possible by starting on time, fitting in the optimal number of procedures and minimising delays between patients
• working with the clinical and operational teams, deliver the Synopsis at Home pilot at Colchester allowing the patient to complete the pre-assessment form in their own home rather than during a “face to face” appointment with the clinical team by 2023/24
• aim to increase our capacity on 2019/20 levels by 30% by 2024/25
• encouraging further system wide collaboration by:
  • continuing to support our main acute hospitals in Bury St Edmunds, Colchester, and Ipswich to work together to reduce gaps in waiting times between localities and learn from each other
  • forming an acute care collaborative to maximise opportunities in this area – see section 7.5 Collaboratives for further details
  • continuing to work closely with our partners in the independent sector and other hospitals in our region to utilise any capacity they have available that can support the system to reduce waiting times. For example, in orthopaedics in 2022 our independent sector providers provided between 126% and 172% of the activity they did in 2019 continuing to support this while waits are above18 weeks and the resources are available
  • Conducting service specific reviews and joint working: we have undertaken service specific reviews in musculoskeletal and ophthalmology services. This has provided an opportunity for clinicians across the system to join together to share ideas and solutions to improve patient experience, to implement best practice on productivity, to share physical capacity to reduce inequalities in our system and to plan future pathway developments such as the Elective Orthopaedic Centre in Colchester (due to go live in 2024) and improving the North East Essex eye care pathway
  • We intend to build on our learning and replicate this approach in other services – general surgery has been identified as our priority

People have the best experience of planned and non-emergency care

• Reducing health inequalities by:
  • having a specific focus on improving access to care for patients in the most deprived communities; ethnic minority communities; inclusion health groups; people with a learning disability and autistic people; coastal communities with pockets of deprivation hidden amongst relative affluence; people with multi-morbidities; and protected characteristic groups
  • developing and fully utilising new CDCs in Clacton and Newmarket to enable people in those communities to access care closer to home
  • continuing to ensure people are reviewed to ensure any clinical harm as a result of extended waiting times is identified and responded to
  • The ICB is committed to ensuring clinical harm is identified and appropriate action taken and therefore we will learn from regional and national experience to develop a digitally driven proactive process for the delivery and management of clinical harm assessments, aligning this programme with the national mandate to undertake administrative and clinical validation of those waiting over 26 weeks for treatment and identifying those who are suitable to be treated at another hospital where waiting times are less
• Continue to support mutual aid across our ICS: We have demonstrated over the last two years a strong ability as a system to be able to improve waiting time equity through hospitals supporting each other’s workload and through using the independent sector. As an ICB we will:
  • continue to pool resource to mitigate the risk extended wait times pose to those who require treatment, prioritising those who are the most clinically urgent
  • reduce unwarranted waiting time variation within specialties due to capacity limitations between sites, through use of our collective clinical resources

We will know we are making a difference because we will see:

• 18 month waits from referral to treatment eliminated by March 2023 except for patient choice and clinically complex patients
• no patient will have waited more than 65 weeks for treatment by 31 March 2024, aligned to the NHSE mandate
• 12 month waits from referral to treatment eliminated by March 2025 except for patient choice and clinically complex patients
• diagnostic waiting times for 95% of patients reduced to six weeks by March 2025, supported by our infrastructure, staffing and adequate capacity
• theatre utilisation increasing towards best practice levels of 85%
• greater choice in outpatient clinics through increasing advice and guidance to 16%, patient initiated follow ups to 5% and virtual clinic options at 25% by March 2023
• throughput to reach 130% of 2019/20 levels by 2024/25
• no differences in the amount of time people wait for treatment between the most deprived 20% of our population and ethnic minorities to the rest of the population
• 10% reduction in on-the-day cancellations due to being unfit for surgery
• 5% reduction in length of stay for total hips and knees
• a reduction in complaints pertaining to extended wait times

Case Study

In October 2022, WSFT implemented a clinical harm review pilot, utilising a methodology developed within the Norfolk and Waveney ICB. To test the pathway a questionnaire was sent to the 100 longest-waiting patients within General Surgery. Respondents were asked to provide detail on their current health, highlighting any deterioration in condition as well as their general physical and mental, wellbeing. They were also asked whether they had engaged with their GP or other health or social care providers whilst waiting for surgery. 46 responses (46%) were received, 34% (18) requiring clinical review.

The team is now working with informatic colleagues to determine which digital platform is most suited to host a further roll-out to all patient who are experiencing prolonged waits for treatment.

1.1.2 Urgent and Emergency Care including Community

Why is this important for people in Suffolk and North East Essex?

The best urgent and emergency care, when and where people need it, is essential if everyone in SNEE is to live well.

What do we know about people’s local experiences?

• Provision of services have been extremely challenging over the past couple of years primarily because of Covid-19 pandemic and workforce challenges
• Our population have experienced significant delays in accessing urgent and emergency care with our hospitals not able to meet the required ED standards and ambulance response times also falling short
• Since 2010, the number of older people asking for council help has increased, but fewer now qualify for support in their own home or in care homes, with the average weekly cost of care being significantly higher in SNEE compared to the rest of England. Someone struggling to cope on their own is more likely to have a fall or neglect themselves, meaning they end up requiring emergency care services. Then, when they are ready to leave hospital, a lack of social care in the community can lead to a delay in being discharged from hospital
• It is important for our population to understand what an emergency is and what requires urgent care as well as when to attend the ED or call for an ambulance, with clarity as to when alternative services such as NHS111, urgent treatment centres and pharmacies should be used
• It is important for all urgent care services to have access to relevant and appropriate patient information to enable timely and effective interventions
• It is important that all urgent care services have the right level of infrastructure to enable effective delivery of care. Enhancing the use and confidence in new ways of working such as, telephone triage and treatment from other practitioners such as pharmacists, advanced health, and paramedic practitioners
• Some people are concerned about the quality and effectiveness of alternative services like 111 and are frustrated by the time call handlers take to answer their calls

How we plan to make a difference

We plan to make a difference by meeting a number of ambitions and aspirations:

• We will make it easier to access the right care, first time, every time. We will ensure people are signposted to the most appropriate service for their needs first time, every time and are treated in the right care setting, at the right time, by the right person
• People in need receive timely emergency ambulance care and conveyance, with minimal delays. We will ensure our ambulance service is as efficient as possible to meet the demand, ensuring those in an emergency receive the care they need
• Within the ED, patients with an emergency are managed in a timely manner. Our hospital will have a well-led and proficient ED, with direct access pathways to other services and an in-reach approach for clinical specialties
• Clinical care and treatment are delivered on time – aligned with best practice, where safety is never compromised. We will ensure that no clinical harm is caused due to delays in treatments
• Staff are in the right place, at the right time with the appropriate skills to care for people and keep them safe. We will commit to growing our workforce by introducing new roles, freeing staff up from unnecessary burdens, allowing staff to work more flexibly and return to work initiatives as well as concentrating on our staff’s health and well-being needs
• People with urgent and minor ailments/illnesses are managed outside of the ED, by urgent care services, every time, first time. We will expand and integrate our new types of care outside of hospital settings
• We will work jointly with all system partners to strengthen and improve discharge processes
• ICBs take responsibility for oversight of urgent and emergency care recovery, improvement, and transformation through the implementation of robust governance arrangements across the ICS and place-based systems

We will make it easier to access the right care, first time, every time

Our Alliances are committed to the development of our urgent and emergency care services through co-production and collaboration with service users, our system partners, and staff. They will continue to develop integrated care offers to minimise the need for people to access urgent care, via an effective and clear education and communication strategy, with a focus on early intervention and prevention to avoid people reaching crisis.

We will do this through ongoing targeted communications and social media promotion of alternatives to ED, including services available via extended GP hours, self – help, pharmacists, social prescribing and through Think 111 First, Think 111 Online and primary care screening.

People will have equal access to care regardless of their circumstances or their location. Equality of access for marginalised groups and more isolated communities will be supported via our
Urgent Treatment Service at Clacton and satellite unit at Harwich, and Ipswich and West Suffolk Urgent Treatment Centres once operational in the next five years. Our Alliances will focus on the most vulnerable of our population identifying people, who may also be high level users of these services, to provide wrap around care and alternative services by ensuring bespoke personalised plans through schemes such as social prescribing and cooperation with the voluntary sector organisations, as well as empowering our population to self-care and make better life choices.

We will continue to develop our Directory of Services ensuring all providers of urgent and emergency care understand available pathways to support patients accessing the right care first time and improving outcomes.

We will ensure our public-facing workers are encouraged when contacting people, they see it as an opportunity to support, encourage or enable health behaviour changes to improve health and wellbeing.

Access to clinical advice through NHS 111 will underpin UEC planning to assess and direct patients to the most appropriate point of care either through self-care, pharmacy, GP, advice from a paediatrician, mental health crisis, Urgent Treatment Centres (UTCs) or another setting. We will ensure a comprehensive review of 111 and incorporate learnings aligned to priorities for primary care including community pharmacists as well as GP recovery plan and mental health support universally accessible using NHS 111 with plans to have 24/7 crisis text lines integrated into local open access crisis pathways.

Our Alliances will continue to improve the support of people living with frailty and their carers, including working in partnership with our care homes and people living with dementia, as well as continue to develop the model of care co-ordination to ensure that people with care needs are supported closer to home. We will take a PHM approach to improve the health of the local population and minimise the need for urgent care.

By working closely with ambulance services, the system will develop an approach to advanced alternative pathways for some category 2, 3, 4 and other calls, to be provided with care not requiring conveyancing, therefore increasing the ambulance performance times for emergency calls. This will primarily be achieved through the further development of the integrated urgent community response model of care.

We will continue to develop Same Day Emergency Care (SDEC) model across all our acute providers to cover a minimum of 12 hours a day 7 days a week by March 2024. Delivering emergency care on the day, avoids the need for an overnight stay, relieves pressure elsewhere in the hospital and frees up beds. Our SDEC services will look to develop open access criteria and system partners will be encouraged to discuss their patients and adopt a ‘trusted practitioner’
approach.

We will continue to work to align to care market provision to ensure people have care services provided in a planned way.

People in need receive timely emergency ambulance care and conveyance, with minimal delays

We will ensure as an ICS, we have a clear understanding of all accessible capacity to support the needs of our population; reduce the need for unnecessary conveyancing to the EDs; maximising use of alternative services such as Urgent Community Response, frailty services, mental health, SDEC and UTCs.

We have developed a system control centre, which monitors system pressures and flow across the system with clear escalations aimed at reducing any excessive patient handover delays including the use of hospital ambulance liaison officers in all our acute hospital sites.

We will continue to implement schemes of work to improve ambulance service performance ensuring the ambulance services offer the most clinically and operationally effective response. Skilled paramedics will continue to treat people at home or in a more appropriate setting, as well as, working with primary care, community and social care services in an integrated way.

Within the Emergency Department, patients with an emergency are managed in a timely manner

All EDs have a comprehensive streaming and redirection model so all non-emergency patients are directed from the ED with a structured competency programme. We will continue to improve this model so that it is optimal by March 2025.

All hospitals will have in place by December 2023 agreed professional standards to ensure patients access the right expertise in a timely fashion to support the right outcomes for patients.

We will continue to develop the concept of frailty services and in particular direct access to these services, with an increased focus on clinical frailty scores, which will facilitate the early identification of those patients requiring specialist frailty care. We will continue with the development of therapy and social work teams at the beginning of the acute hospital pathway so that people have an agreed care plan within 14 hours of admission, with expected date of discharge.

We will improve pathways for people who have serious illness/injury such as major trauma, stroke, heart attack, severe asthma attack or sepsis and these improvements will reduce the risk of death or disability.

We will ensure that adults and CYP with acute mental health needs receive prompt assessment and care when arriving within an ED. Enhanced mental health care in emergency settings 24/7 will ensure people receive the right support at the right time in an integrated way. This will be in place across all three of our acute hospital sites. See section 5.5.3 of the main JFP for further information.

We will develop the concept of a peripatetic team to support improved outcomes for mental health patients requiring support within an acute urgent care setting.

Clinical care and treatment will be delivered on time – aligned with best practice. Safety is never compromised

We will commit to growing our workforce by introducing new roles, freeing staff up from unnecessary burdens, allowing staff to work more flexibly and return to work initiatives as well as concentrating on our staff’s health and well-being needs.

See section 7.2 of the JFP Workforce

Patients with urgent and minor ailments/illnesses will be managed outside of the ED by urgent care services every time, first time

The UTC model ensures all localities provide consistent out-of-hospital urgent care, with the option of appointments booked through a call to NHS111. The ICS has successfully opened UTCs in Harwich and Clacton as well as co-located with the ED at Colchester Hospital during 2019/20 and intends to open a co-located facility at Ipswich Hospital in 2024. Plans to develop UTC at West Suffolk will be an integral part of the new hospital build plans looking towards 2030.

We will improve our urgent community response services, so that we are consistently meeting or exceeding reaching 70% of patients referred within two hours, operating for at least 12 hours a day. This includes scaling up falls and frailty services, based on previous learning, ensuring these services are joined up with ambulances and other system partners.

We will continue the transformation of community mental health services and build on the recent expansion of community-based crisis services.

The virtual ward model launched supports safe and time efficient discharge outside of the traditional hospital setting, with patients remaining under the care of a physician and receiving health monitoring remotely from their home, ensuring they continue to receive care and treatment. By April 2024, there will be 450 virtual ward beds in our ICS, for a wide range of clinical pathways.

We will use technology to support excellent communication as well as empowering direct communication between clinicians using Consultant Connect and dedicated advice lines for clinicians to support decision making in the community.

We will work jointly with all system partners to strengthen discharge processes.

We will ensure people are referred onto the appropriate support when they are discharged from hospital and that there are no delays in acquiring this support by identifying their need early into their admission.

We will continue to build the existing discharge to assess models to ensure assessment and reablement opportunities are available at home and in the community to ensure people do not stay any longer than needed in a hospital bed.

We will continue to ensure no decisions about long term care are made in an acute setting, with all assessments happening outside of the hospital.

People and their carers will be fully involved in planning to leave hospital-based care. Involvement in care planning increases choice and control and helps the smooth transition between hospital and home.

We will continue to develop the Trusted Assessor model to be a key link between our hospitals and care homes to ensure safe and timely discharge by March 2024.

We will develop a new approach to intermediate care, working with local authorities and voluntary and community partners. This expansion of ‘step-down’ care is designed to help people move from hospital into more appropriate settings for their needs, with the right wrap-around support for their rehab and reablement.

ICBs take responsibility for oversight of urgent and emergency care recovery, improvement, and transformation through the implementation of robust governance arrangements across the ICS and place-based systems

The ICB will ensure robust governance processes are in place to oversee the delivery of urgent care services on an ongoing basis.

We will develop an Urgent Care Committee with delegated accountability and responsibility for effective delivery of urgent care services across the system by March 2023. The Urgent Care Committee will pull on the accountability of partners through statutory health organisation and newly formed alliances.

The ICB will develop its operational resilience arrangements ensuring the system can react to urgent care pressures and respond accordingly. The latter will largely be achieved through the development of a system control centre.

The ICB will set its ambitions and ensure the right level of data and intelligence is available to ascertain how well services are being delivered with the right outcome, namely:

• Number of emergency admissions
• Ambulance response times
• Delays in patient handovers at EDs
• Ambulance conveyance rates
• Number of delayed discharges linked to no criteria to reside measures
• Length of time spent in EDs and access to right care
• Measure of any mental health care access delays
• Number of patients managed through SDEC
• Urgent community response times
• Opel levels and monitoring of actions

We will know we are making a difference because we will see:

• people experiencing an integrated single point of contact model of care, choosing which services are most appropriate for their immediate needs. This will be a single system-wide approach to managing integrated urgent care, to guarantee same-day care for patients and a more sustainable model for services
• an improvement in A&E waiting times so that no less than 76% of patients are seen within 4 hours by March 2024, with further improvement in 2024/25, building to 95% by March 2028
• an improvement to category 2 ambulance response times to an average of 30 minutes across 2023/24, with further improvement towards pre-pandemic levels in 2024/25
• a reduction in adult general and acute (G&A) bed occupancy to 92% or below
• fewer people cared for in EDs as more are supported in Urgent Community Response Services and integrated urgent care services
• fewer emergency admissions and a reduction in the rate of emergency inpatient hospital admissions for people aged 65 and over and a reduction in the average number of patients without a criterion to reside in a hospital bed
• an improvement in quality and timing of ambulance responses, performance, and patient handovers
• an increase in the capacity and quality of mental health support in emergency care 24/7
• an improvement in the quality, capacity and health outcomes of frailty assessments, therapy, and social work services in emergency departments

Quote: “This JFP plan outlines ways that SNEE can develop and improve urgent and emergency care provision for our communities. It gives clear guidance on the advancements for 23/24 including reducing category 2 ambulance response times and ambitious targets for A&E waiting times. Whilst bringing together the many services already striving for patients to receive the right care, at the right time, in the right place, every time.”
Neill Moloney Managing Director, ESNEFT
Nicola Cottington, Executive Chief Operating Officer, WSFT

Case Study

Co-ordination of Care for Mr A

Mr A, an elderly gentleman, who lived independently alone in his family home, called 999 after having a fall in his kitchen and was unable to get himself up. The ambulance call handler assessed his clinical needs and made a referral to the urgent community response team, who were able to respond quickly, with a therapist and a nurse attending the patient. Using dedicated lifting equipment, he was picked off the floor and then have full holistic assessment. In agreement with Mr A, it was deemed that there was no need for any further emergency treatment. As he would struggle with personal care for a few days, a support worker came in for the next week to assist him, as well as help with some
exercises to regain his mobility.

The team noticed that Mr A had been struggling to maintain his home and this was also the second fall he had had in a short period. Equipment to help around the house and prevent further falls was added, along with a digital device that he could wear around his neck to obtain help if he needed. Mr A was referred to strength and balance classes at his local leisure centre and was visited by a social prescriber, who arranged some cleaning and shopping support from a local volunteer service. Once Mr A had recovered, a social care worker made a visit to discuss any ongoing support with care

1.1.3 Cancer

Why is this important for people in Suffolk and North East Essex?

We know that one in two people will develop cancer in their lifetime and that almost four in ten cancers could be prevented with even more cancers being avoidable in our most deprived populations.

The NHS LTP for Cancer (2019-2028) aims to save thousands more lives every year by improving how we diagnose and treat cancer. Nationally, by 2028 an additional 55,000 people each year in England will survive for five years or more following their diagnosis. Patients diagnosed at an early stage (Stage 1 or 2) have the greatest chance of curative treatment and long-term survival. The ambition is that by 2028, 75% of people diagnosed will be at stage 1 or 2. We will work to achieve this for the population of SNEE through improvements in earlier and faster diagnosis.

Earlier, and faster diagnosis with high-quality personalised treatment and care for people with cancer is essential for people to stay well.

What do we know about people’s local experiences?

We have listened to our patients and communities and have heard what is important to patients, their families and carers and key objectives are shown in the figure below:

Figure 1: Feedback on Desired Requirements of Cancer Patients, Families and Carers

Patients Families and Carers:

• Excellent CNS Support
• Equitable Psychological Support
• Accessible support groups for all
• Holistic support from the point of referral – cultural and other needs accounted for
• Good quality of life
• Timely access to a GP
• Extended access for cervical screening
• Chasing for result/ appointments causes anxiety
• Prohibitive transport costs can impact care
• Clear navigation for patients
• Clear communication between health and social care
• Can be experts in their own health

We know that the total number of people living with cancer is increasing in SNEE as it is across England. However, the percentage of people with cancer in SNEE is higher than the England average (4% vs 3.3%). Therefore, it is important that we maximise opportunities to prevent cancer as much as possible.

In 2019, across SNEE there were over 21,000 people living with cancer. The largest proportion of people had a diagnosis of prostate, breast, colorectal or blood cancer and this number is increasing. Therefore, we need to be working to ensure that everyone diagnosed with cancer is well supported and has a good quality of life.

Screening is an important way that we can find more people with cancer at an earlier stage.

We are aware that there is variation across SNEE in the uptake of screening across the three National Screening programmes when viewed at GP practice level.

• Cervical Screening (for women 50-64 years), SNEE average 77.6% (range 67.7%-87.5%), Target ≥ 80 %
• Cervical Screening (for women 24-49 years), SNEE average 74.3% (range 49.4-84.4%), Target ≥80%
• Breast Screening (for people 50-70 years), SNEE average 64.5% (range 22-76.3%), Acceptable target ≥ 70% and Achievable ≥80%
• Bowel Screening (for people 60-74 years), SNEE average 73.6% (range 57.5-81%), Acceptable target ≥ 50% and Achievable ≥60%

As screening is a vital part of the drive to finding cancers earlier it is important, we address this.

In 2019, the percentage of cancers diagnosed at an early stage (stages 1 and 2) was above the England average (55%)

• West Suffolk 60.7%
• Ipswich and East Suffolk 58.7%
• North East Essex 58.8%

However, the NHS LTP ambition is to have 75% of cancers diagnosed at stages 1 and 2 by 2028 so we know that there is more we need to do across SNEE to achieve this.

• For SNEE this means that an estimated 814 more cancer diagnoses need to be made at stage 1 or 2 to meet the 75% ambition (information from the cancerdata website)

The percentage of people surviving for one year or more following their diagnosis of cancer in SNEE is 73.7% which is similar to the national average (73.9%).

The percentage of people surviving for five years, or more is 54.7% which is similar to the average for England 54.6%. The NHS LTP expects an increase in the number of people surviving for 5 years or more by an extra 55,000 people in England. In SNEE we are keen to contribute as much as possible to this by improving our number of people diagnosed at an earlier stage where longer term survival is more likely.(Cancer survival: index for Clinical Commissioning Groups, 2002 to 2017)

We know that across SNEE, there are differences in levels of deprivation and that deprivation is a factor in people’s life expectancy. Across our local authority areas, the levels of mortality for people under 75 years old with cancer are similar to the average in England. However, they could and should be improved.

We know that in Tendring the under 75-year-old mortality rate from cancer considered preventable for women is significantly lower than the England average which means more women are dying from cancer.

We will strive to reduce the difference between under 75-year cancer mortality in deprived and less deprived communities showing improvements each year through delivery of the actions described.

Since the NHS LTP was published, the world has experienced the Covid-19 pandemic which has had a significant impact on many aspects of people’s lives and widened health inequalities. We are aware that we need to continue to work compassionately and collaboratively to address these inequalities to ensure people in all aspects of the community can have the equivalent high-quality personcentred and personalised care.

The pandemic presented huge challenges to our workforce. We know that we need to work hard to support and retain them as well as recruiting new people into our workforce. Working collaboratively, we will invest in upskilling our workforce and exploring innovative ways to work for effectively across SNEE.

We know that we are returning our urgent suspected cancer referrals to levels above those seen before the pandemic as more people coming forward to seek help. We are also returning our cancer treatments to levels to pre-pandemic levels. However, there are still delays for patients on suspected cancer pathways and people who might be on the incorrect pathway to fully address their needs. We need to look at best practice, research, and innovation to support us in resolving the ongoing challenges and to embed efficient, caring, high quality and sustainable services for the future.

How we plan to make a difference

• All communities are enabled to live healthy lifestyles, are aware of concerning symptoms and know how to seek appropriate help (Prevention)
• People have access to a wide range of high quality and timely services (including screening), which will lead to an earlier diagnosis (Access and Earlier Diagnosis)
• Workforce and infrastructure are in place to ensure faster diagnosis (Faster Diagnosis and Sustainable Capacity)
• Reduce variation in diagnosis and treatment by ensuring appropriate personalised support (Patient Focus / Personalised Care)
• Courageous approach to innovation and research to improve patient quality of life and survival (Innovation)

All communities are enabled to live healthy lifestyles, are aware of concerning symptoms and know how to seek appropriate help. (Prevention)

It is essential that all our communities are aware that by living healthy lifestyles they can reduce their risk of cancer. For example, stopping smoking / vaping, maintaining a healthy weight, exercising regularly, and enjoying the sun safely. We will do this by taking a collaborative approach with our communities to develop a series of targeted communication campaigns to raise awareness.

We will use a variety of communication tools including the use of social media to support this and we will evaluate the impact.

Through awareness raising with clinical services, we will highlight the importance of referring patients to the services available to support them optimise their healthy behaviours. This work aligns to the ambitions set out in the Healthy Behaviours section 6.6.1 of the JFP.

Studies (Forbes, L et al. Br J Cancer 111, 581–588 (2014)) have shown that the most common reason for delays in people seeking help is not realising the symptom was serious. Through a series of targeted communications campaigns, we will raise awareness so that people are aware of concerning symptoms that could indicate cancer and know how to seek appropriate help. We will use a variety of communication tools including social media to support this and we will evaluate the impact. We will work with all key stakeholders to identify areas of our communities which need dedicated support commencing in 2023.

National awareness campaigns with be amplified with tailored messages to our specific communities in SNEE.

During 2023, we will develop a pledge with our workplace leaders and the Chamber of Commerce to encourage them to commit to increased awareness of screening opportunities and support all staff in accessing their screening appointments. This will help create an environment where staff feel empowered to discuss screening and health appointments as well as ensuring they can attend potentially life-saving tests.

People have access to a wide range of high quality and timely services, which will lead to an earlier diagnosis (including screening). (Access and Earlier Diagnosis)

Through 2023, we will build on the work we have commenced with Suffolk Federation i.e., extended access times, literature in a range of languages including easy read, addressing cultural and religious beliefs. By taking conversations about screening into communities, we will ensure the access points and services meet the needs of our communities.

Our colleagues in mental health plan to increase the uptake of health checks for people with a SMI or a Learning Disability. These checks highlight whether the person is up to date with screening (breast, cervical or bowel). It is important to ensure that where these checks highlight the person is not up to date, reasonable adjustments are made so they are supported to attend. We will work to see that where a health check shows that health behaviours might be improved, a referral to the support services available will be offered. Learning from why people are not taking up screening offers will be used to further develop services to better suit the needs of these people.

We know that breast screening uptake was negatively impacted by the Covid-19 pandemic with services having to pause following national guidance. A large variation in uptake now exists across SNEE (from 22%-76%) which needs to be ddressed to ensure that everyone who wants to have breast screening can take part. During 2023, we will work with communities and PCNs in low uptake areas to understand the reasons why and revise services to address these reasons.

Following the LTP guidance we will extend the age of people who are eligible for bowel cancer screening to invite people from 50 years old by 2027.

We will work collaboratively with PCNs across SNEE to deliver the requirements in the Network Contract Directed Enhanced Service- Early Cancer Diagnosis which are updated annually.

Targeted Lung Health Checks (TLHCs) for people aged 55-74 years who are current or former smokers will commence with Clacton in 2023 and will expand across SNEE so that by 2027 all the eligible population has been invited. The aim is to identify people with lung disease and early-stage lung cancers, so they have the highest chance of survival.

We will develop an implementation plan to roll out Clinical Decision Support Tools to support our GPs in making timely, high-quality referrals into cancer services by 2023. We will explore how these tools could prompt referral to services to support health behaviour.

We will develop and embed self-referral pathways for people with concerning symptoms to ensure they are able to access specialist care as fast as possible. Starting with breast lumps in 2023, people will be able to refer themselves directly to seek specialist advice and treatment if required.

Workforce and infrastructure are in place to ensure faster diagnosis. (Faster Diagnosis and Sustainable Capacity)

We will achieve the Faster Diagnosis Standard of 75% for all pathways (including referrals for suspected cancer from GPs, the breast symptomatic pathway and screening) so that patients are diagnosed or have cancer ruled out within 28 days by 2024. To achieve this, we will;

• implement the national best practice pathways for skin, lung, and prostate by 2023 and the remaining best practice pathways by 2024
• ensure tele dermatology is in place across all our providers by 2023
• build on the success of the Clacton CDC to benefit the local populations with timely and local access to key diagnostic tests. A large new CDC will open in Newmarket in 2024 providing increased access to diagnostic tests to support people on a cancer pathway closer to their home
• ensure diagnostic tests undertaken in the community can be viewed by hospitals to reduce duplication

We will review the cancer workforce across the system in a patient focussed way. We need an agile cancer workforce, that meets the needs of patients including utilisation of pharmacists, development of self-referral pathways, developing specialist doctor roles and ensuring these are equitable across SNEE. To achieve this, we will:

• implement the health care science workforce strategy and the pharmacy workforce strategy in 2023. These are key areas of recruitment and will impact on the cancer pathways i.e., haematology and pathology workforce
• deliver two multistakeholder workshops on cancer and diagnostics in 2023 to scope the current issues and develop a workforce plan for delivery of the solutions
• work with HEE / NHSE to design and implement the medical workforce strategy which will look at the current needs and the future state in what is required for cancer patients
• work with ICBs across the East of England on a regional cancer workforce plan which will be implemented from 2023
• adopt the Aspirant Cancer Career and Education Development (ACCEND) Programme to ensure a robust career framework for cancer nurses by 2023

Reduce variation in diagnosis and treatment by ensuring appropriate personalised support. (Patient Focus / Personalised Care)

We want all our communities to have an outstanding experience of care. We will learn from our communities what outstanding means for them and work to achieve this by having conversations on the Lets Talk SNEE platform.

Complete the definition of what personalised supportive care means for SNEE and embed a common language so that all stakeholders know and understand what is meant and we work together to achieve it for everyone during 2023.

It is important that there is holistic support in place for every patient from the point of referral throughout their entire pathway to ensure they know who to turn to if they need further support. To achieve this, we will:

• embed a prehabilitation / rehabilitation service to support every patient diagnosed with cancer to improve post treatment outcomes by ensuring people are in the best health possible before treatment. This will lead to a faster functional recovery after treatment and a reduced incidence of complications
• complete an evaluation of multiple pilots in 2023 to enable a SNEE wide strategy to be developed to optimise service delivery of prehabilitation/rehabilitation for our communities
• offer psychological support for everyone who needs it across SNEE. Actions will include establishing psychological pathways for the prison population, armed forces, and veterans, palliative and end of life patients during 2023
• there will be basic communications and mental health training for all staff working in community and hospital cancer services during 2023
• during 2023, we will use the results of our scoping to develop services to ensure equity across SNEE. We will work with mental health NHS Talking Therapies long term conditions services (NSFTand EPUT) to develop pathways at point of need during 2023
• produce a directory of psychological services for professionals and patients available via a QR code to ‘Let’s talk SNEE’ website in 2023
• develop communication materials for patients on an urgent suspected cancer pathway about psychological support services available in 2023
• adapt the urgent suspected cancer referral form to include identification of those with a SMI in collaboration with East of England Cancer Alliance in 2023
• hold a public and professionals engagement event titled ‘Psychological support in Cancer ‘where are we now and where can we be?’ on 13th March 2023

We are working with Macmillan to embed the Improving Cancer Journey (ICJ) model which has been successfully delivered in Scotland. This proactive model ensures the patient has a support worker who can help them to access the support they need all along their journey. There is no time limit on the service so patients can access for as long as they need. The model will be codesigned with patients with cancer and communities to ensure it meets the needs of patients. It will be in place by 2025 across SNEE.

Macmillan voluntary sector project managers are being employed through our voluntary sector partners in Suffolk to work with communities to understand the support that is available for people with cancer and encourage people to feel confident having conversations about cancer. This will be particularly focussed on addressing the health inequalities and will commence in 2023.

Results of the National Quality of Life survey (QoL) and the National Patient Experience Survey (CPES) will be used to improve future patient pathways. The survey will be promoted to ensure as many people as possible give their views during 2023. A range of innovative services that are directly targeted on the QOL priorities from the survey will be introduced from 2024.

For patients who are receiving palliative care, we will ensure there is generalist palliative care for all, specialist support where required and advanced care plans in place if they progress to end of life care, aligned to section 6.9.1 End of Life of the JFP.

We will hold a series of five workshops with patients, their families, and friends to understand the experiences and learn what we need to do to improve during 2023. Topics will be prevention, early diagnosis and screening; receiving a cancer diagnosis and will cover pre-diagnosis, receiving a cancer diagnosis and breaking bad news; the treatment journey; living with and beyond cancer; palliative and end of left care for cancer patients, carers and families; the experience of patients diagnosed outside of a cancer pathway (for example via emergency prestation’s or upgraded from a routine pathway).

An equalities health impact assessment will be completed in 2023 to help us direct appropriate services and support to our communities. We will pay particular attention to tackling health inequalities and we will use existing data to target our efforts to hear from people who are currently experiencing the worst health outcomes.

The Cancer JSNA will be updated in 2023 by Public Health which will provide data and evidence to inform and tackle inequalities in cancer service access, diagnosis and treatment.

We will ensure there is an effective handover of care with our tertiary providers and seek to ensure that this is reciprocated so that care from a patient perspective is seamless. We will endeavour to ensure all pre-treatment and subsequent follow is as locally provided as possible where clinically appropriate. We will repatriate appropriate specialist treatments where this is support through NICE and through support of our system partners.

Courageous approach to innovation and research to improve patient quality of life and survival (Innovation)

We will robustly test out novel approaches, rapidly evaluate them and implement those that improve patient’s quality of life and survival into business as usual.

We will continue to roll out the NHSE GRAIL screening study across SNEE during 2023/24 for the benefit of our patients who are part of the study but also to contribute to the national evaluation which will influence the potential for national roll out.

We will roll out Colon Capsule endoscopy across all three acute hospital providers by 2024 so support the colorectal pathway and provide valid alternatives for patients on symptomatic and surveillance pathways.

We will roll out cytosponge services across SNEE by 2024 for people on surveillance for Barrett’s oesophagus and for patients who have heartburn.

We will evaluate and roll out tools to support pre-habilitation.

We will know we are making a difference because we will see:

• delivery of the Faster Diagnosis Standard so that people are diagnosed or have cancer ruled out within 28 days from referral by the GP or via screening by 2024
• an increase in patients diagnosed at an earlier stage so that 75% of patients will be diagnosed at Stage 1 or 2 by 2028 in line with the LTP
• in 2019, 57% – 59% of people were diagnosed at Stage 1 or 2 across SNEE. It is expected that the pandemic has negatively impacted this. Through the actions described we will demonstrate progress to achieve the national target by 2028.
• increased responses from across all communities and increased scores for the National Quality of Life (QoL) Survey and National Patient Experience Survey (CPES)
• the current response QoL response rate is 50% on average with a greater proportion of white people responding to the surveys. With data from a greater uptake across all communities and tumour sties, we will drive changes in our services
• for CPES we will demonstrate improvements each year until 2028 via annual review
• a reduction in the difference between under 75-year cancer mortality in deprived and less deprived communities. We will show improvements each year
• achievement of the national screening targets for breast, colorectal and cervical cancer across all the communities, considering deprivation and addressing pockets of worse performance. We will show incremental improvements each year until 2028

Quote: ‘’It is with great pride that we share our refreshed ICS cancer strategy for 2023-2028. Building on the foundations in our 2018-2022 strategy, we want to utilise every practical prevention opportunity to minimise avoidable risk of developing cancer. Similarly, when cancer is suspected or established, our goal is to deliver high quality, timely and person-centred care for the people of SNEE. Our workforce will be supported to deliver all elements of care in the most effective manner. We thank our current and pastatients and people of SNEE in helping us to shape our approach going forwards’’.
Dr Christopher Scrase, Macmillan Clinical Lead for Cancer SNEEICS

Case Studies

ESNEFT Pre-Diagnosis Cancer Service

The Pre-Diagnosis Cancer Service received a referral for a 79-year-old gentleman who had delayed having a colonoscopy and gastroscopy for two months due to a chest infection. These tests were requested after his CT scan which showed a suspicious lump within his intestine which could have been cancer.

A referral was made to the Pre-Diagnosis Service to discuss with the patient the outstanding investigations and how important they were. He was also offered practical and emotional support to enable him to attend. He had been referred initially by his GP into to the colorectal team on a suspected cancer pathway because he had rectal bleeding and a change in his bowel habits. The GP had performed a blood test which showed iron deficiency anaemia Faecal Immunochemical Test (FIT) which was raised.

The Pre-Diagnosis Cancer Nurse assessed the patients over the telephone and the conversation highlighted the following concerns: Rectal bleeding requiring incontinence pads, ongoing weight loss, reduction in appetite, recent blood transfusion for anaemia, fatigue, low mood, reduction in independence and quality of life. The Pre-Diagnosis Cancer nurse contacted the GP to raise concerns about the patient’s physical symptoms and general poor health. The GP subsequently made a same day home visit.

The pre-diagnosis Cancer team also made immediate contact with the Colorectal specialty team to flag concerns regarding symptoms and a possible bowel obstruction. The Consultant requested urgent admission to hospital for symptom management and further tests. The patient was diagnosed with cancer.

Several factors contributed to the delays in the patient being able to access the specialist help he required in a timely way. Through the work of the pre-diagnosis nurse, the patient was able to access the support he required, the diagnosis was made, and he could start his treatment. Without this service it is likely he would have presented to ED and his cancer diagnosis would have been delayed.

Non site-specific case study

A 75-year-old retired man Derek who is married, well and independent was referred to the Non-Site Specific (NSS) service with unexplained weight loss and some abnormal blood results. Derek has type 2 diabetes; he has never smoked and drinks little alcohol. Derek presented to his GP with an 11-month history of nausea in the mornings with intermittent episodes of vomiting that could occur at any time. The diabetes medicine was adjusted, and the nausea slowly resolved but he still vomited on occasions. Although he felt well and remained active, he noticed his weight was dropping sometimes very quickly.

Derek had moved house which he described as stressful and attributed the weight loss to this event. Following discussion with his GP, Derek agreed for an urgent referral to the NSS service; various investigations had already been performed such as gastroscopy, ultrasound that raised no concerns, but recent blood tests showed a raised white blood cell count and anaemia. The NSS doctor took a complete medical history and performed a full examination which didn’t raise any concerns. The case was discussed at the MDT meeting and the team agreed a CT scan would complete the investigations and a repeat Faecal Immunochemical Test (FIT test). The CT scan was performed in one week and showed an abnormality on the kidney which triggered an upgraded referral to the urology team for a suspected cancer.

Derek presented to the service with nonspecific symptoms, and the NSS pathway enabled him to have a faster diagnosis. The benefits for Derek are access to timely CT scanning, liaison with Urology specialists producing a swift diagnosis and then treatment. Derek completed the NSS experience of care survey and reported a high level of satisfaction and commented the staff were professional and kind.

West Suffolk Cancer Care Navigators

Based at WSFT, the West Suffolk Cancer Care Navigators offer regular practical and emotional support to cancer patients and their families. By building strong relationships with hospital and primary care teams, charitable and voluntary organisations the Navigators ensure each individual patient needs are met. The Navigators are a constant as the patient progresses through treatment. The Navigator tracks down the right person, support or service that will make life
that bit easier.

This is an example of how the navigators are able to support patients with regular phone calls, face to face appointments and referrals to other services, in this case over 15 months.

A newly diagnosed patient was referred into the Navigator service by the Clinical Nurse Specialist. The Navigator called the patient and after some discussion the patient decided she would benefit from some psychological support. The Navigator introduced her to the dedicated cancer counsellor to help her improve her mental health.

During the conversation financial concerns were also highlighted. With the patient’s permission, the Navigator completed a Macmillan Benefits referral and a Macmillan grant form to try and alleviate some of the concerns. The Navigator and the patient continued with supportive calls every two weeks. During one of the calls the patient raised concerns about her husband. The Navigator suggested contacting Respite on Prescription for support, which is a service that can help carers have respite time. Suffolk Family Carers offer this service. They also provide emotional support for carers.

On another call, the patient raised concerns about needing to access the toilet urgently when out shopping. The Navigator sent out the Macmillan Toilet Card to allow her to have urgent access to toilets. The patient was also recommended to attend the Health and Wellbeing, Dream on Day which she found incredibly useful. Following surgery, the patient was referred to the Macmillan Counselling Service as she needed extra support. Following the 6 sessions of counselling, the patient has been recommended the Hope course in the New Year. In December she was also referred to the Christmas Wreath Making Class to further support her wellbeing.

The Navigator and patient discussed a return to exercise and the navigator referred the patient to the Social Prescriber at the GP Surgery. The Social Prescriber recommend the patient to the local gym and she received free gym membership for 3 months. The patient regularly attends the Navigator face to face clinics at the community hub and she knows she can contact the Navigator at any time.

1.1.4 Diabetes

Why is this important for people in Suffolk and North East Essex?

The best care and quality of life for people living with, or at risk of, diabetes is essential if everyone in SNEE is to start well and live well.

Diabetes is a major public health problem with diabetes diagnosis in the UK having risen from 1.4 million to 3.8 million since 1996. One in ten people aged over 40 now has type 2 diabetes. It is estimated there are around 4.7 million people (including those that have been undiagnosed) living with diabetes in the UK and this is estimated to rise to 5.5 million by 2030. In the UK, around 400 people are diagnosed with diabetes every day. Diabetes costs the NHS over £1.5 million an hour (or 10% of the NHS budget for England and Wales), and an estimated £14 billion a year treating it and its complications.

Every week in the UK diabetes leads to more than:

• 680 strokes
• 169 amputations
• 530 heart attacks and almost
• 2,000 cases of heart failure
• more than 500 people with diabetes die prematurely every week

Diabetes can shorten the average life expectancy by more than 20 years for people with type 1 diabetes and more than 10 years for people with type 2 diabetes. The pandemic has significantly impacted many long-term conditions, including diabetes. People living with diabetes were more likely to go on and develop complications if they caught Covid and had a higher risk of mortality.

Many cases of type 2 diabetes could be prevented or delayed by healthy eating, being more active, and losing weight if overweight (including medical and surgical treatment for obesity). An ageing population and high obesity rate mean that, if the costs of treating a patient with diabetes stay the same, the overall costs of diabetes are set to grow over the next 20 years, when it is projected to account for 17% of the entire NHS budget.

Many people with long-term health conditions are already taking control of managing their condition themselves, supplemented with expert advice and peer support in the community and online. The King’s Fund has called this ‘shared responsibility for health’. The NHS LTP has outlined a commitment to increase NHS support for people to manage their own health and has prioritised diabetes prevention and management.

There are certain factors that can increase the risk of type 2 diabetes in individuals. Some are potentially modifiable (like being overweight, eating a healthy diet and having high blood pressure) and some are non-changeable (such as age, ethnicity, and family history). More than half of all cases of type 2 diabetes could be prevented or delayed if risk factors are identified early and acted upon. In some cases, diabetes can be reversed (put into remission), for example with a very low-calorie diet programme or with surgery for the treatment of obesity.

The NHS LTP and the 2019 Green Paper ‘Advancing Our Health: Prevention in the 2020s’ both detail the commitment to double the number of people using the NHS Diabetes Prevention Programme and introduces a digital version that gives the same advice on healthy eating, exercise, and weight management as the face-to-face programme, but through wearable technologies, apps and websites. It is designed for those at risk of type 2 diabetes who find it difficult to attend sessions because of work or family commitments.

NHS Health Checks is a national programme commissioned by local authorities that also play a role in early diabetes diagnosis and prevention. Health Checks offer people aged 40 to 74 a free check-up of their overall health, every five years. The results can tell people whether they are at higher risk of developing certain health problems such as heart disease or diabetes and allow for preventative action to take place.

What do we know about people’s local experiences?

In 2020/21, over 60,000 (7.1%) people registered to a GP practice had been diagnosed with diabetes in SNEE, with an estimated 12,600 people who have the condition who have not yet been diagnosed. The observed to expected ratios range from 77% for Ipswich and East Suffolk CCG, to 92% for West Suffolk CCG and 83% for North East Essex CCG.

The percentage of people living with diabetes receiving all eight care processes in SNEE ICS dropped from 70% in 2019/20 to 52% in 2020/21 and then recovered to 62% in 2021/22. The percentage of people living with diabetes achieving all three diabetes treatment targets in SNEE ICS dropped from 42% in 2019/20 to 39% in 2020/21 meaning an estimated 27,700 patients did not achieve their three treatment targets that year. HbA1c is consistently the least well achieved treatment target.

There are inequalities associated with diabetes management as practices in deprived areas have significantly higher proportion of people living with diabetes.

In SNEE, males with type 2 diabetes are at greater risk of mortality, and the male / female risk ratio has increased in 2019/20. Risk factors of diabetes include poor diet, low physical activity and obesity.

Childhood obesity levels are generally slightly lower than the England average, but variation is seen within Suffolk and Essex. There are clear inequalities within childhood obesity – the level of obesity at year 6 for the most deprived decile of children is almost double that of the least deprived across Suffolk, this is over double compared to the least deprived across Essex, and over five times as high for severe obesity prevalence. North East Essex has a slightly higher proportion and Suffolk a slightly lower proportion of overweight or obese adults aged 18+ than England and the East of England region.

How we plan to make a difference

As an ICS having listened to our population and health care professionals, we will ensure that:

• people at risk of diabetes are supported to prevent developing the condition
• people living with diabetes have access to the best possible care and support they need to live well with diabetes
• people living with diabetes can monitor and self-manage their condition effectively
• we will reduce health inequalities for people living with diabetes, and increase our use of Population Health Management (PHM) data to help us do this

People at risk of diabetes are supported to prevent developing the condition

People at risk of Type 2 diabetes, in particular those in high-risk populations such as ethnically diverse communities, have support to prevent developing the condition. We will enable this by:

• increasing the number of referrals of diagnosed pre-diabetic people into the NHS Diabetes Prevention Programme (NDPP) year on year, which now includes a digital (app based) option. Completing this lifestyle programme helps reduce the risk of going on to develop type 2 diabetes. The digital option widens choice and helps target inequality. Our NDPP Engagement Leads will continue to support primary care and attend BAME community events to promote this prevention programme. So far between December 2021 and September 2022 there have been 4,300 people attending their first class
• improving information, advice, and support on weight management such as the Digital Weight Management programme for people who are overweight and obese and their carers and families. Information will be made available in a range of ways and formats, including online, apps, and when accessing health and care services. Weight management programmes can improve health and reduce health inequalities
• continuing to work alongside our Public Health teams to develop community-based services and support to help people change to healthier living. This would include projects such as community food growing, cookery classes, Couch-to-5K and park runs. In one area we are developing a Community Diabetes Prevention Service known as the “Shotley” project which supports pre-diabetic and overweight people in remote parts of the county through highly tailored local interventions

People living with diabetes have access to the best possible care and support they need

care and support they need People with diabetes have access to the community-based support they need to live as well as possible with their condition We will enable this by:

• using best practice from each of our Alliances to ensure improving equality of access to primary care whilst tackling any existing health inequalities. This will include case finding undiagnosed people living with diabetes especially within care homes, implementing the West Suffolk recovery plan and the new Ipswich and East Suffolk Diabetes Enhanced Service, working more closely with poorer performing practices, and identifying a diabetes lead for each PCN
• ensuring as many people living with diabetes as possible receive their Care Processes (diabetic annual health checks). Following that we will support people living with diabetes to achieve their three NICE treatment targets. We will use data to identify and aim to drive down unwarranted variation in these services thereby minimising the risk of future health complications for people living with diabetes.
• increasing the availability of testing within NHS health checks. Widening access to testing, including at point-of-care (making every contact count), helps people to monitor their condition more easily
• offering people living with diabetes, Structured Education classes recognising that both type 1 and type 2 conditions require differing information, advice, and support. People living with diabetes, local communities and the wider public, should understand what diabetes is and why it is important. We will also aim to increase the uptake of Structured education places using face-to-face learning as well as digital (app based) solutions

Improving the footcare pathway for those living with diabetes and reducing clinical risk. We will do an analysis (deep dive) in this area to
understand the root issues and resolve them.

Aligning to national guidelines and offering greater access to new technologies and support from teams experienced in their use to help people take greater control of their diabetes for patient groups such as:

• adults with type 1 diabetes will be offered a choice of real-time Continuous Glucose Monitoring (CGM) or intermittently scanned CGM
• adults with type 2 diabetes and on multiple daily insulin injections meeting set criteria will be offered intermittently scanned CGM
• CYP with type 1 diabetes will be offered real-time CGM
• offer intermittently scanned CGM to CYP with type 1 diabetes aged 4 years and over who are unable to use real-time CGM or who express a clear preference for it setting up local pathways for the gradual introduction of Hybrid Closed Loop (HCL) and ensuring adequate staffing to run these services safely

Recognising that mental health plays a key part in living well with a long-term condition. People can be offered a referral to mental health services such NHS Talking Therapies to seek support in managing their condition as well as gain access to mentors or buddies (peer support) which is an important tool in living well with a long-term condition. These psychological and emotional support services will also include support for those with for instance a Learning Disability or Severe Mental Illness.

We will undertake a workforce review and explore whether we can make more use of Health Care Assistants (HCAs) to provide support for the diabetes Care Processes and how we can improve our succession planning to ensure we can provide continuity of care as health care professionals leave the service.

Supporting a Type One Disordered Eating Service in the near future after NHSE have developed their long-term strategy Identifying a nominated healthcare professional in each acute trust to receive training and support for a national project to improve referral rates and identification and treatment for genomic testing for monogenic diabetes (MODY).

People with diabetes will be supported during their inpatient specialist care hospital stays

We will continue to provide access to multi-disciplinary foot care teams (MDFT) and diabetes inpatient specialist nursing (DISN) teams for seven days a week along with streamlined care pathways, and access to the latest technologies to improve inpatient diabetes control. Better access to these services in hospital and regular quality audits will help improve recovery, reduce length of stay, reduce future re-admissions, and improve patient experience.

People living with type 2 diabetes have equitable access to services to manage their condition or even achieve remission

We will aim to provide more local weight management services to support people living with type 2 diabetes such as for those patients transitioning from children to adulthood services. These services have been shown to improve health and reduce health inequalities.

Continue to offer type 2 structured education which has elements of nutritional advice and signposting in line with national guidance.

We will implement the national Very Low-Calorie Diet (VLCD) in quarter three of 2023-24 for those patients who meet criteria and are aiming to put their diabetes into remission. This is a robust evidence-based programme accessed via referral from primary care and funded at national level. Such nutritional support helps to prevent worsening of people’s condition, reduces the likelihood of complications, and can improve people’s health, leading to better quality of life.

For people with established type 2 diabetes who are obese and at high risk of complications, improved access to specialist (Tier 3 and 4) weight management can reduce their risk and even reverse (cure) their diabetes. Current services are based a long way from our populations, and rates of access are very low compared to other areas. People living in areas with higher levels of deprivation are less likely to access these services. Improving the equity of access to these services will improve the outcomes for those who have most to gain from these treatments.

Children and Young People with diabetes have access to high quality care

We will provide high quality treatment and care for children living with diabetes by providing early interventions in order to help children manage their condition and for those with type 2 avoiding the need for more invasive treatment in the future.

Supporting young people to transition from children to adult diabetes services. Tailored support helps young people maintain their health and wellbeing through their transition to adult services. Using population health data to identify variations in services, and groups and communities who need targeted support.

SNEE are one of several pilot sites testing a transition from child to adult service on behalf of NHSE from which we hope to look at innovative ways of engaging our young people living with diabetes by working in partnership with local youth services to develop a service that is best suited to our young people’s needs. Further details on priorities for CYP are in Section 6.4.2.

Carers of people with diabetes have support to stay well

Carers will receive information and support. Supporting carers helps them in their role and also helps them maintain their own good health
and wellbeing. Where appropriate alongside people living with diabetes, carers are also invited to participate in our face-to-face
diabetes Structured Education classes.

Carers will be signposted to national support such as Diabetes UK e-learning for carers and relatives of people living with diabetes.

People living with diabetes can monitor and self-manage their condition effectively

People with diabetes will have the support they need to self-manage their condition

We will expand access to digital self-management tools (apps) such as MyDESMOND and the free national tools such as Healthy Living, Digibete and MyType1Diabetes as well as restore our face-to-face Structured Education classes to pre-Covid levels.

We will seek to understand what our diabetic population needs in the way of materials to suit their various circumstances to ensure that we have an equality of education. Education and information will be tailored to the needs of different groups and communities. Adapting information to the needs of different cultures, communities, and communication needs, helps ensure it is understood and meaningful to people. Engagement with groups such as the Caribbean and African Community Health Support Forum and Bangladeshi Support Group is already underway with further plans to work with other groups.

Improving information on symptom response. Improved information enables people to seek support promptly. An ICS wide website is being considered for diabetes which can provide advice and support for patients on their condition and which services available.

Pregnant women with Type 1 diabetes can monitor their glucose levels more effectively

We will continue to ensure that continuous glucose monitoring is available for all pregnant people living with type 1 diabetes. The improved monitoring of pregnant people living with diabetes helps to improve maternal health and neonatal outcomes. We have a programme of work to improve the monitoring, advice and guidance given to patients with gestational diabetes and during their aftercare.

We will reduce health inequalities for patients with diabetes

We recognise that Covid 19 has had a disproportionate impact on many who already face disadvantage and discrimination which has resulted in a general widening in health inequalities. We will act to add additional resources to supporting these groups

We will use PHM data to help us identify where there are gaps and variation in services, and additional needs in the population, to ensure resources are targeted in the most effective way. This will include the use of the CORE20+5 approach and inclusion of this data in our dashboards. This data is also being used to drive performance dashboards to help us monitor and the aim to level up service performance across SNEE.

We will run a project in nursing, residential and care homes to case find opportunities for de-escalation, offer support to avoid admission to hospital and expand on our insulin delegation project. This will be achieved through utilising technology and facilitating closer working between our community neighbourhood nursing teams and diabetes teams.

We will undertake a system wide diabetes GIRFT review to review our services against national best practice and implement any findings.

We will know we are making a difference because we will see:

• increase in referrals to the National Diabetes Prevention Programme (NDPP) in-line with contractual requirements
• an increase in the diabetes diagnosis rate from 6.1% to 7.5% to support those living with undiagnosed diabetes
• a reduction in the rate of people developing type 2diabetes
• an increase in the number of people putting their diabetes into remission via introduction of the planned Low Calorie Diet programme
• an increase the number of people accessing specialist (Tier 3 and 4) weight management services and improving the equity of access to these services
• a levelling up in the completion of national diabetes care processes to pre-Covid levels (60% completion by end 2024/25)
• levelling up in the achievement of the diabetes treatment targets with an aspiration that all practices reach 45% achievement by end 2024/25
• improved access to and uptake of structured education classes by a further 10% from current baseline figures for both newly diagnosed and established patients
• improved access to continuous glucose monitoring technology for:
  • pregnant type 1 people
  • adult type 1 people
  • adult type 2 people
  • type 1 children and young people
• fewer cases of type 2 diabetes in people who are of minority ethnic origin
• increased access to mental health services for people with long term conditions
• 5% reduction in diabetic emergency admissions and re-admissions (Hypo and Hyper) by 2025/26
• fewer diabetes-related amputations (above/below the knee – Major/Minor)
• a reduction in diabetes mortality rates
• all three alliances achieving their “outstanding” NHSE performance rating for diabetes services once again
• performance rating for diabetes services

Quote: ““All Alliances in our ICS have previously been rated as outstanding in the Improvement and Assessment Framework reports from NHSE. The ICS remains outstanding for delivery of the eight Diabetes Care Processes and Outcomes. We should rightly feel proud of this however, we aim to do better as there is still so much more we can do. The proposals outlined in this JFP will deliver significantly better services for those of all ages and ethnicities, living with type 1 and type 2 diabetes in SNEE as well as reduce the growing number of people developing type 2 diabetes. Our ultimate aim is to improve the lives of our population of people with diabetes and their families, as well as those at risk of the condition.”
Professor Dr Gerry Rayman ICS Diabetes Clinical Lead Consultant Physician at the Diabetes and Endocrine Centre, East Suffolk, and North Essex NHS Foundation Trust

Case Study

Enabling patients to understand how to keep themselves healthy – structured education

People who have Diabetes live well with it and are able to manage their condition. Structured Education improves patient outcomes by enabling patients to understand what they need to do to keep themselves healthy. However, take-up among patients newly diagnosed with diabetes is very low. As a system we were able to bid for funding from NHSE and SNEE was awarded NHSE Transformation funds of £955k to transform Diabetes Management (including DESMOND and DAFNE selfcare programmes). We developed ICS wide governance and appointed a clinical lead to provide steering and oversight. We have:

• Recruited and trained DESMOND and DAFNE educators
• Increased the number of DESMOND and DAFNE places and venues available.
• Central referral and booking service
• Introduced a diabetes lifestyle navigator role in North East Essex
• Developed and implemented the ‘Big Impact’ campaign
• Commissioned a digital diabetes Structured Education provide to offer an alternative method
• Promoted better glycaemic control.

As the full expanded Structured Education service did not come into place straight away and year end data is still not available, it is still early days in terms of fully evaluating the outcomes of the service. However, in the last three years the expanded Structured Education service has so far almost doubled the numbers of people attending the programme.

1.1.5 Respiratory

Why is this important for people in Suffolk and North East Essex?

We know respiratory disease affects one in five people in England and is the third biggest cause of death. Incidence and mortality rates for those with respiratory disease are higher in disadvantaged groups and areas of social deprivation, where there is often higher smoking incidence, exposure to higher levels of air pollution, less green spaces, poor housing, conditions, and exposure to occupational hazards.

We know that:

• earlier detection and diagnosis for people with respiratory conditions is essential for people to stay well
• communication between all aspects of health and social care need to be seamless to ensure that the patient, their families, and carers receive the highest level of care
• people are more likely to quit smoking through access to a smoking cessation adviser for psychological support and pharmacotherapy i.e., nicotine replacement therapy
• respiratory patients may have been waiting longer to be seen by specialist services due to impact of the pandemic and these services are in the recovery phase
• environmental factors i.e., housing, smoking, and air quality impacts on people with respiratory conditions including those at higher risk of respiratory infections. This would involve a wider system partner approach to tackle air quality issues and reduce the pressures on the NHS emergency services and primary care

The NHS LTP for respiratory disease (2019-2028) aims to:

• ensure more patients have access to testing, such as spirometry testing, so that respiratory problems are diagnosed and treated earlier
• ensure patients with respiratory disease receive and use the right medication, including educating patients on the correct use of inhalers
• expand rehabilitation services, including pulmonary rehabilitation and digital tools so that more patients have access to them and have the support they need to best self-manage their condition and live as independently as possible
• improve the treatment and care of people with pneumonia.
• the NHS will work to reduce air pollution from all sources. Specifically, to cut business mileages and fleet air pollutant emissions by 20% by 2023/24. SNEE ICB is aiming for 40% reduction in air pollutant emissions from 2024 onwards.

Chronic respiratory disease is one of the top five clinical areas of focus in the Core20PLUS5 approach, recommended by NHSE to inform action to reduce healthcare inequalities by targeting population groups at local level especially in the most deprived areas. The ambition is to focus on increasing uptake of COVID, flu and pneumonia vaccines to reduce infective exacerbations and emergency hospital admissions due to those exacerbations of respiratory conditions. Smoking cessation positively impacts chronic respiratory disease and is aligned to the NHS Tobacco dependency treatment programme that is being delivered in collaboration with our system partners including but not limited to local hospital trusts, local stop smoking services, community pharmacies and Public Health.

What do we know about people’s local experiences?

Chronic Obstructive Pulmonary Disease (COPD) is a common disabling condition with a high mortality. There are two main forms of COPD: Chronic bronchitis and emphysema. Most people with COPD have a combination of both conditions. More than 1.17 million people in England have a diagnosis of COPD. Smoking is the main cause of COPD and is thought to be responsible for around 9 in every 10 cases, therefore the most effective treatment for COPD is to stop smoking. Based on prevalence estimates in 2020/21 (NHS England – tobacco dependency programme)

• 2.1% of SNEE residents registered with a GP practice had COPD
• 7.1% of SNEE residents ages 6+yrs registered with a GP practice has asthma, the second highest in the East of England region
• hospital Admissions in SNEE residents <19 years for asthma is 238 per 100,000 – significantly worse than England at 172 per 100,000

Respiratory diseases are also greatly associated with health inequalities. Someone from the most deprived section of society is two-and-a-half times more likely to have COPD, and nearly twice as likely to develop lung cancer, as someone from the least deprived section of society. Smoking is the most important factor in the development of respiratory diseases. In England, one-third of all deaths from respiratory disorders are attributable to cigarette smoke and current smokers are twenty-six times more likely to die from lung cancer compared to those who have never smoked. The Global Burden of Disease ranks tobacco as the top modifiable risk factor that drives deaths and disability, with 96,058 avoidable deaths associated with its use in England in 2019. Smoking tobacco is linked to just over 500,000 hospital admissions each year, with smokers being 36% more likely to be admitted to hospital than non-smokers.

Lung disease is one of the top three causes of mortality in the UK and lung cancer is the most common cause of cancer death in the UK. Lung cancer occurs when abnormal cells form into a tumour in the lung. Anyone can develop lung cancer but around 85% of cases occur in people who smoke or who used to smoke.

Passive smoking over a long period and environmental factors, such as exposure to asbestos, can also increase the risk of developing lung cancer.

• 115,000 people a year die from lung disease
• mortality figures are roughly the same as 10 years ago, yet heart disease has fallen by 15%
• 1 in 5 people in the UK have been diagnosed with a lung disease Every day, 1,500 new people are diagnosed with a lung disease

Asthma and Lung UK recognise air pollution is an urgent threat for the twelve million people in the UK who live with a lung condition, such as asthma, COPD, and bronchiectasis. Polluted air has a very real effect on their health as breathing can become more difficult and symptoms become worse. Breathing polluted air is particularly dangerous for children and can cause irreversible damage to their growing lungs and hearts. Evidence of child brain function/development and associated with other diseases dementia etc.

Tackling air pollution will reduce the number of diseases associated with it, such as respiratory conditions (Local Government Association (2017). Air Quality A Briefing for Directors of Public Health. A report by the Local Government Association, DEFRA, and Public Health England). Improvements to air quality are also an important co-benefit of interventions targeting other health outcomes, such as active travel and increased physical activity. Working with our wider system partners, we can help prevent future illnesses rather than just treat them. Making small changes can make a big difference – just a small change in activity to reduce pollution (1µg/m3 reduction in PM2.5 concentrations) could prevent 9,000 new cases of asthma by 2035 at national level. In 2020 a coroner recorded the first instance of air pollution as a cause of death in the UK (Ella Adoo-Kissi-Debrah: Air pollution a factor in girl’s death, inquest finds – BBC News).

SNEE ICS has developed a Green Plan which sets out our holistic strategy towards climate change and carbon reduction. It represents a shift in emphasis to address wider sustainability goals that we want to achieve as a system:

• tackling the causes and effects of health inequalities and poverty
• reducing the impacts of air pollution on health
• reducing and mitigating the impacts of climate change on the system and population health
• delivering the NHS LTP (value for money, staff development, embracing digital and doing things differently)
• providing leadership through actions, partnerships, engagement, and transparency to transition towards a net zero NHS before the 2040 NHS target.

See section 8.8 Sustainability for further information on our Green Plan.

Although air quality activity tends to focus on outdoor air pollution e.g., car use, the other approach is indoor air quality (IAQ) which also impacts population health. IAQ is dependent on many factors including ventilation, moisture levels, activities, levels of dust and other pollutants present including burning fuel, chemicals, and smoking. Through the NHS tobacco dependency treatment programme, we are tackling a primary source indoor air pollutant. Working with our wider system partners including but not limited to Public Health, sustainability, and environmental leads) we will support and contribute to activity such as research, education, and public engagement where we can support tackling air quality through our Green Plan.

How we plan to make a difference

As an ICB we will ensure that.

• people with respiratory conditions are supported to live well
• people at higher risk of respiratory infections have access to high quality care and support
• people with respiratory conditions or at risk of respiratory infections have better health outcomes from reduction in air pollution
• people with respiratory conditions and other long-term conditions are empowered/supported to make decisions to reduce risk of worsening respiratory symptoms through a collaborative approach between prevention and population health management

People’s respiratory conditions are diagnosed early

People living with breathing problems will have their respiratory problems detected and diagnosed earlier

Implementing and expanding quality assured spirometry and FeNO (Fractional Exhaled Nitric Oxide) training to support the workforce to deliver a locally accessible asthma and COPD diagnostic service and ensuring local access to diagnosis & monitoring of these conditions, by 2026.

Increasing the uptake of respiratory training educational programmes including ARTP (Association for Respiratory Technology and Physiology) training. Educating health and care staff to recognise the symptoms and signs of respiratory conditions, to highlight patients that may require further assessment or intervention.

Increasing by 60% the number of people diagnosed with respiratory conditions within four months, by 2028.

Collaborative working with voluntary organisations to ensure that we target protected characteristic groups, and they have equal access to spirometry services via their existing support systems. i.e., homeless organisations. We will work with the services to ensure they are upskilled and competent to undertake spirometry testing where clinically appropriate.

People with respiratory conditions are supported to live well

People with respiratory conditions will receive the right medication to manage their condition

We will engage people in the decisions about their care, using shared decision-making conversations to ensure that people are informed of the different treatment options available and ensure decisions are made which take account of an individual’s preferences and priorities.

Healthcare professionals will follow national and local prescribing guidelines to optimise inhaled therapy and will teach people the correct technique for their type of inhaler device. The new medicine service delivered by community pharmacies will support patients in optimising use of new respiratory medication.

Patients’ medication usage will be regularly reviewed, and we will work with patients to optimise their therapy in line with current guidelines.

We will build on our existing thriving system-wide respiratory network to support integrated working, to improve equality of access and health outcomes.

We will work collaboratively with our wider system partners and identify new opportunities for pathway redesign to promote and maintain good health, supporting effective use of medication and spotting signs of 13 Consensus pathway for management of uncontrolled asthma in adults – Oxford early deterioration or exacerbation. There is currently a community pharmacy advanced smoking cessation pathway developed for patients who require support to continue to quit smoking once discharged from hospital.

Annual face to face reviews are important; and this will include review of long term or recurrent antibiotic use to support antimicrobial stewardship. We will continue to support the prescribing of rescue antibiotics and steroids where clinically appropriate for patients with frequent exacerbations along with self-management education to allow for early intervention.

People with respiratory disease will be better able to manage their condition through high quality support

Integrating skilled health and care services providing personalised care. Integrating primary and secondary care, mental health and physical health, and health and social care services across respiratory pathways.

Improving, where appropriate, access to approved specialist treatments. Evidence-based treatments include biologics for severe asthma, anti-fibrotic therapy for pulmonary fibrosis, lung volume reduction for COPD, and NHS Talking Therapies for people with long term conditions.

Support local asthma clinics to manage patients with severe asthma and work towards an established tier 3 specialist secondary care service delivering care closer to home (Consensus pathway for managing uncontrolled asthma in adults-Oxford Academic Health Science Network).

Ensuring support for respiratory patients by involving them and their family/carer representatives where appropriate to make informed advanced care planning decisions at the right time and enable right treatment and right location where care needs can be delivered.

Exploring group consultation approaches within primary and community care, with clinicians working alongside non-clinical roles e.g., Health and Wellbeing Coaches and Social Prescribing Link Workers to address wider societal and environmental determinants of health which may be impacting on the extent of an individual’s condition.

Considering the use of “one-off” PHBs to support personalised care choices linked to individuals personalised care and support plan. Develop personalised care and action plan with patients including regular reviews to support management of exacerbation of asthma/COPD therefore reduce the risk of hospital admission where clinically appropriate.

People with respiratory disease will be better able to manage their condition through high quality rehabilitation

Ensure that pulmonary rehabilitation services are supported with the recovery phase of service delivery since the pandemic.

We will increase awareness of, and access to pulmonary rehabilitation services, and ensure these are coproduced with our patients.

Develop personalised digitals tools to support self-management.

We will focus on reducing health inequalities by engaging with our voluntary and community sector groups and health coaches to target most deprived areas or patient groups where there is high prevalence of respiratory conditions.

We will ensure by 2027, pulmonary rehabilitation services across the ICS are accredited and meet quality assurance national standards.

We will use PHM approaches to identify eligible patients with diagnosed respiratory conditions and refer them to pulmonary rehabilitation by 2028.

We will ensure that there is continued follow on exercise programmes available for people with respiratory conditions once discharged from the NHS pulmonary rehabilitation programme. We will work in close collaboration with leisure centres, councils and other system partners

People with respiratory conditions receive the best hospital and community based respiratory care

Structured hospital admission with prompt assessment by specialist teams and systematic discharge planning using COPD/asthma Discharge Bundles. We will ensure all people with COPD are assessed for suitability for an Early Supported Discharge Scheme. This will include discharge medicine service referrals to community pharmacy.

Having personalised ‘what matters to me’ conversations and where necessary using personalised care and support planning to engage people in activities and support offers which best meet their personally identified health and wellbeing goals. This will be in collaboration and not limited to our voluntary sector groups and social prescribing link workers.

Establishing a COPD extended service to support early discharge for other respiratory patients in close collaboration with the respiratory virtual ward pathway.

Ensuring implementation of the pneumonia and asthma right care toolkit.

People at higher risk of respiratory infections have access to high quality care and support

People with respiratory conditions know how to prevent risk of worsening health

Supporting the delivery of the tobacco dependence treatment programme for all inpatients, pregnant people and those in long term mental health services by 2023/24. This will include behavioural and pharmacotherapy support. These services will be in addition to, and delivered in conjunction with, where relevant, local authority Stop Smoking Services and the NHS community pharmacy hospital discharge stop smoking service. They will support delivery of the
government’s Tobacco Control Plan and the ambition to go smoke-free in England by 2030.

Smoking history will also be routinely identified in outpatients with current smokers being offered referral to the local authority Stop Smoking Services. This will include parents of CYP patients. Improving public awareness of respiratory conditions. This helps people with respiratory conditions to self-care and implement reasonable adjustments to reduce modifiable risk factors. Health and care staff recognising exacerbations in people’s conditions early. To enable access to robust pathways of care providing prompt treatment and support.

Engaging people with available education, groups, and activities to increase their knowledge, skills, and confidence in the supported selfmanagement of their condition in order to enable them to remain well.

We will use PHM to identify at risk groups of worsening respiratory symptoms and ensure timely asthma or COPD reviews. Promoting recommended vaccinations for eligible respiratory patients e.g., flu, covid and pneumonia vaccinations to reduce the risk of hospital admissions.

Collaboratively working with local councils and system partners to support environmental and healthy homes projects. Identifying suitable respiratory patients who would benefit from advanced care planning and communicating with primary care and other system partners to ensure continuity of care. We will work collaboratively with the ICS End of Life Group to ensure best practice is delivered.

People with respiratory conditions or at higher risk of respiratory infections have better health outcomes from reduction in air pollution

People with respiratory conditions or at risk of respiratory infections have awareness of the impact of air pollution in health and are supported to reduce health deterioration associated with air pollution

Demonstrating leadership and empowering our workforce and our communities to help them understand how they can protect themselves by making practical improvements.

Working with ICS partners to prevent, mitigate and avoid air pollution and improve health outcomes. Reviewing air pollution data and targeting key pollution hotspots to improve health outcomes.

Digitise, connect, and transform services safely and securely to improve the outcomes, experiences, and safety of our citizens whilst reducing patient travel-related carbon emissions where clinically appropriate.

Implementation of the ICS Green Plan strategy with wider system partners approach to achieve the best health and social care outcomes for our population.

People with respiratory conditions and other comorbidities are empowered/supported to make decisions to reduce risk of worsening respiratory symptoms through prevention, health promotion strategies and population health management collaborative approach.

We will work with our system partners including but not limited to primary care, learning disability leads, Public Health, mental health trusts and local councils to undertake in depth focussed reviews of patients with learning disabilities who have died from respiratory conditions and identify any learning and gaps in service provision. We will continue to link with the regional NHS East of England Community acquired pneumonia steering group to share learning and understanding of best practice.

We will develop education awareness raising campaigns for pneumonia/flu vaccines uptake and engage in patient engagement forums with voluntary services to understand how we can support patients with learning disabilities and autism that have respiratory conditions to ensure they have access to health promotion.

We will know we are making a difference because we will see:

• reduction in number of people smoking to below the England average by 2027
• decrease in number of people smoking at time of delivery
• decrease in number of people smoking who have a SMI
• reduction in emergency respiratory admissions in adults and children by 2027 to below England average compared to the 2023 emergency respiratory admission rate
• 70% of respiratory patients have completed a pulmonary rehabilitation exercise programme as per quality improvement national recommendation by 2027
• an increase in the number of patients accessing pulmonary rehabilitation for a start assessment and endeavour to complete the 6–8-week course
• 85% of patients with respiratory conditions are starting a pulmonary rehabilitation programme within 90 days of referral as per national target
• an increase in the number of patients who have switched to a dry powder inhaler, where clinically appropriate
• 78% uptake of flu and pneumonia vaccinations in people with respiratory disease including among groups with protected characteristics by 2027
• 100% of PR services across SNEE accredited by 2027
• a reduction in business mileage and nitrogen dioxide and fine particulate matter (PM2.5) pollution levels by 2028 compared to 2023 and England average
• an increased public awareness of air pollution and practical strategies to improve health outcomes and reduce air pollution from 2025
• an increase in the number of learning disability annual reviews undertaken that includes full assessment of respiratory symptoms, vaccinations status, and swallowing assessment compared to 2023

Case Studies

Patient coproduction -inhaler switching

“I was asked to join a group of clinicians as a patient rep to discuss how to promote the use of dry powder inhalers in place of MDI inhalers to reduce harmful emissions. I was extremely sceptical as my inhalers are critical to my wellbeing, especially “Fostair”.

Anyway, we discussed the design of a leaflet which shows a clear comparison of emissions between MDI inhalers and powder inhalers and that leaflet has since been published. After some deliberation I decided to try the powder inhalers and discussed with my consultant who was all for it as a trial meaning I could change back if I didn’t feel that the powder inhalers gave me as much relief. So back in August 2022 I switched from “Salamol Easy Breathe” to “Ventolin
Accuhaler” and from “Fostair” to “Fostair Nexthaler” I have not noticed any detrimental effect and continue to use the powder inhalers.”
Phil Gladwell – Patient representative from Breathe Easy.

Presquip award – Rachel Belton Deputy Chief Pharmacist, SNEE won the PrescQIPP 2022 Annual Awards

“SNEE ICB won the PrescQIPP 2022 Annual Awards – Sustainability category – this award category is for medicines optimisation projects that support the NHS ‘Net Zero’ ambitions. We won the award for our ICB approach to supporting practices to reduce the carbon impact of inhalers.

In the project so far, we have:

• ensured the respiratory guidelines and formularies support practices in choosing lower carbon options.
• developed an ICB guideline on the reduction of the carbon impact of inhalers. This guideline includes practical advice regarding the reviewing, switching, and monitoring of inhalers.
• run ICB wide training sessions to ensure that primary care clinicians are trained and confident to prescribe the most appropriate, lowest carbon containing inhaler for their patients.

We have done this by utilising the expertise and support of secondary care respiratory specialists, local GP leads for Greener Prescribing, LPC representatives, contacts within our training hub and local respiratory networks.

Our project is ongoing and now we are working on:

• patient focussed communications, publicity and resources developed through co-production to raise awareness of the carbon content of inhalers and the work being carried out by our practice teams.
• development of additional resources to support practices in the conversations they are having with patients. ”

1.1.6 Long Covid

Why is this important for people in Suffolk and North East Essex?

Latest ONS estimates (published on 7July 2022) suggest there are around 1.6 million people in England experiencing symptoms following COVID-19 for more than four weeks: 685,000 of whom for over 12 months. An estimated 336,000 people in England report that long COVID is significantly impacting on their day-to-day activities. Long COVID includes both ongoing symptomatic COVID-19 (4–12 weeks) and post COVID syndrome (12 weeks or more and are not explained by an alternative diagnosis) and can be a debilitating multi-system condition affecting an individual’s physical, psychological, and cognitive health, their daily life and ability to work or attend education.

The long covid commissioning guidance published in July 2022 sets out the following requirements:

• to address the unwarranted variation in waiting times around the country, triage should be offered if waiting time to first assessment is longer than six weeks
• be available if required following primary care or other clinician referral to all affected patients from four weeks after the start of acute COVID-19 illness, regardless of whether or not they were hospitalised
• provide a coordinated whole pathway of assessment, treatment and multifaceted rehabilitation and psychology support with direct access to required diagnostics
• include clinical leadership from a doctor with relevant skills and experience
• consider face-to-face assessments where helpful, dependent on the patient presentation and clinical judgement
• be able to interpret or have access to clinical support for interpretation of diagnostic test results
• be able to refer onto specialist services, including mental health services, as well as the VCSE sector as needed
• provide information to patients on how to re-access services on discharge from treatment or rehabilitation services, given that patients can experience relapses in their illness
• ensure that post COVID services are accessible to people from communities and sub-populations who experience health inequalities
• have an internal and external communication plan to help raise awareness within the clinical community and key stakeholders including: ‒ people living with long COVID, their parents, family or carers ‒ employers and schools.

SNEE Long Covid Assessment Service (SNELCAS) launched in 2020 and has received a total of 2029 referrals as of November 2022. Predominant treatment pathways used by the SNELCAS include but are not limited to: – Chronic fatigue services – Improving access to psychological therapy (IAPT) / wellbeing services – Respiratory physiotherapy services – Musculoskeletal physiotherapy services 1:1 therapy (MSK) – Speech and language therapy (SLT) – Dietetics -Occupational therapy – Vocational support / employment advice.

What do we know about people local and lived experiences?

We have listened to our local population and communities and have heard:

• specialist fatigue management is important but access to the chronic fatigue service is variable and there is a long waiting list
• there is not always equitable access to other specialist services. SNELCAS has given patients the ability to focus and feel listened to by clinicians
• the SNELCAS service evaluation report in July 2022 indicated that patients truly value the treatment, care and support provisions received from the service and has positively impacted their perceived recovery and management of long covid

We also know that:

• an individual personalised care plan is one of the most important aspects of supporting recovery for people living with long COVID. Actively listening to people and asking, ‘what matters to you?’ supports planning and shared decision-making based on what matters most to individuals
• shared decision-making conversations, where clinical expertise, patient preferences and values come together, can enable people to help themselves through supported self-management approaches
• integrated care planning across multiple agencies including joined up health and social care is important so that patients benefit from seamless pathways

The SNELCAS service has received positive feedback. A friends and family survey undertaken in February 2022 had a response rate of 36
people – 55% found the service very good while the remaining 45% found it was good.

How we plan to make a difference?

As an ICS we will ensure that:

• eople in all our communities can access SNELCAS. We aim to reduce health inequalities through close collaboration with VCSE teams, community pharmacy teams and social prescribers to ensure everyone can access the service
• people have access to a wide range of timely, appropriate specialist resources whilst they wait to be seen by the service (e.g. widespread access to Your Covid Recovery – Supporting Recovery for Long Covid NHS website).
• we take a proactive, courageous approach to innovation and research which could improve patient quality of life and self-management
• we will ensure patients receive appropriate personalised support throughout their entire pathway and have access to digital resources to review their progress
• we will consider the use of “one-off” PHBs to support personalised care choices linked to individuals personalised care and support plan by working closely with our personalised care team

We will know we are making a difference because we will see:

• 80% of patients triaged and seen within six weeks by 2025
• 100% of patients continuing to be assessed within 14 weeks of referral as per the national target. In SNEE we have consistently met this standard
• 60% of patients reporting improved outcomes from national quality of life tool EQ-5D-5L
• 70% of patients waiting no longer than three months for inhouse rehabilitation support. As inhouse rehabilitation expands, we would expect a reduction in onward referral to specialist rehabilitation services
• the SNELCAS service capturing more activity metrics in the next year, such as MDTs and self-management, to ensure the whole offer of local services is tracked for continuous improvement

Quote: “I would like to say a big thank you. This is the first time I’ve felt heard in a long time. It was so refreshing to see that we were talked to as individuals, and next steps catered to our individual requirements. Sarah couldn’t have been more perfect for this role!

I felt heard, calm and for once didn’t waste my energy on having to get my thoughts and feelings heard. This is a big step, which is very much underestimated in preventing anxiety and depression. So thank you.

I whole-heartedly wish this approach was taken for FND (Functional neurological disorder), as there are a number of similarities in how patients can have similar or different symptoms. It was nice not to be labelled, put in a box, and forgotten about. Thank you to all.”
Mel – Service user

1.1.7 Myalgic encephalomyelitis and chronic fatigue syndrome (ME&CFS)

Why is this important for people in Suffolk and North East Essex?

ME&CFS is a complex, long term, disabling disease which can have a devastating impact on function and quality of life. Many systems in the body are affected including the brain, muscles, digestive, immune, and cardiac systems.

• 80% of those affected are women and it is believed that prevalence may be higher in ethnic minority groups
• it is the greatest cause of long-term sickness absence from school
• it affects everyone differently for some people symptoms still allow them to carry out some activities for others (about 25%) symptoms mean that they are unable to leave their home or their bed
• diagnosis can be made after symptoms have been present for three months
• full recovery is rare (less than 10%), but many improve, especially with early diagnosis and careful management and support. However, some do not improve or continue to deteriorate even with careful management and support
• it is classified by the World Health Organisation (WHO) as a neurological condition and under disorders of the nervous system
• there is no cure for ME&CFS, but symptom control, stabilisation, and management (including of co-existing conditions) is complex and needs to be done with support from wider multidisciplinary team with expertise in ME&CFS. Fully effective symptom control, stabilisation and management is sometimes not possible, especially for the severe / very severe

There are estimated to be a total of 5,085 patients (adults and children) diagnosed with ME&CFS with a prevalence rate of 0.46% across SNEE in 2021/22. Approximately 21% of patients age ranges 50-59 are diagnosed with ME/CFS, 19% age ranges 40-49, 17% age ranges 30-39. It is estimated 3% under 19-year-olds have diagnosis of ME&CFS.

However, we know that due to waiting lists and the impact of the pandemic there could be significantly more patients undiagnosed. It is not yet known of the impact of Long Covid, and the prevalence of this patient group later diagnosed with ME&CFS.

What we know about peoples’ local and lived experiences?

We continue to have regular engagements with our service users through surveys and co-production process. We have listened to the following points that have been made:

• there needs to be more GP awareness of early recognition, early diagnosis, and the support services available for the ME&CFS community
• that it is not always possible for patients to access a GP appointment in a timely way
• there should be resource easily available to patients once suspected of ME&CFS whilst waiting to be seen by specialist service
• there should be clinic access nearer to home
• symptoms are variable for the individual and can be perceived by others, including some health and social care professionals that the symptoms are not real due to lack of awareness of ME&CFS. There continues to be stigma surrounding ME&CFS
• limiting a maximum of six support sessions is inadequate and not personalised care especially for CYP and those severely affected with ME&CFS. It should be recognised that this is a long-term condition and needs long term support
• home assessment visits and or virtual appointments including domiciliary care should be offered for patients with severe/very severe ME&CFS
• the biopsychosocial graded exercise therapy (GET) and cognitive behavioural therapy (CBT) model should not be offered because this has worsened individuals ME&CFS symptoms and reduced function
• it is important to have a named person/ consultant with expertise in ME&CFS
• there should be a commissioned ME&CFS service for CYP and severely affected

We also know that:

• communication between all aspects of health and social care need to be seamless to ensure that the patient, their families, and carers receive the highest level of care
• there has been increased number of referrals into the ME&CFS services due to Covid generating increased waiting lists; a proportion of people with long covid also meet the criteria for ME&CFS
• clinical leadership is paramount including greater integration with other services
• GPs may not have the capacity to diagnose all ME&CFS cases accurately and in a timely fashion and that pathway design will require consideration to how the specialist ME&CFS service, including AHPs and the wider MDT will enhance the diagnostic screening process
• a consultant led service model in Suffolk had been previously developed in 2018 and received positive patient feedback based on the Public Health JSNA outcome Report and the Feasibility assessment of the Implementation of a ME and CFS Consultant-led Service for Norfolk and Suffolk, The challenge during this period was to recruit a specialist Consultant to continue to deliver this service

In October 2021, the rewritten ME&CFS NICE guidance was published. This has generated a review into the current service provision and to undertake an analysis and exploration of opportunities within SNEE ICS in the new landscape. In August 2022 Department of Health and Social Care have undertaken further research into ME&CFS with wider key stakeholders which focuses on key themes engagement, research, attitudes, and education and living with ME&CFS working groups.

A survey by SNEE ICB on ME&CFS was coproduced with a group of service users to understand the current needs of our population and how we can drive positive change as a system. 58 responses were received: 44 from a Suffolk GP registered patient and 14 were from North East Essex GP registered patients.

Key themes in the survey responses included the need to:

• reconsider delivery of a consultant led service
• educate GPs to recognise symptoms of ME&CFS and arrange/refer for prompt diagnosis
• improve access to support / information / advice – including when discharged from the service and benefits
• acknowledge coexisting conditions
• move away from graded exercise therapy (GET)”

How we plan to make a difference?

As an ICS we will ensure that:

• adults and children with suspected ME&CFS are diagnosed early within three months by 2028
• people with ME&CFS and their carers/families are supported to live well
• people with ME&CFS have access to high quality care and addresses health inequalities and inequity (NHS long term plan – stronger action on health inequalities)

Adults and children with suspected ME&CFS are diagnosed early within three months by 2028

We will continue our longstanding commitment to work collaboratively with key system partners18 and service users to review and coproduce pathways for adults and CYP with ME&CFS and explore new models that meet the needs of our local population.

We will review and coproduce current education materials for health care professionals with system partners and service users and ensure it is updated in line with NICE guidance.

We will utilise digital platforms to raise awareness of ME&CFS for healthcare professionals and patients.

We will aim to establish a specialist ME&CFS service with direct lead commissioning oversight by SNEE ICB by late 2024.

People with ME&CFS and their carers/families are supported to live well

We take a proactive, courageous approach to innovation and research which could improve patient quality of life and survival e.g., self-management apps and activity monitors. We will embed successful initiatives into standard care including encouraging peer support in a personalised constructive manner.

We will work with our system partners to support people with ME&CFS to improve their quality of life by:

• supporting financial independence through benefit claims and/or making reasonable adjustments in training and employment
• ensuring access to aid and mobility equipment
• supporting the development of reasonable adjustments in education to optimise learning
• ME&CFS information and evidenced based quality guidance and will be made available to the public, focussing on key messages to raise awareness, promote early intervention and encourage selfcare
• facilitate content coproduction in collaboration with service users and not limited to Public Health and voluntary services for use on websites, social media, leaflets, and poster
• consider key topics, best suited to public health messaging, including similarities and overlap between ME &CFS and Long COVID, common symptoms, epidemiology, early intervention, pacing during post-viral recovery and guidance for employers and employees

People with ME&CFS have access to high quality care and addresses health inequalities and inequity

We will ensure that patients with moderate/severe/very severe ME&CFS are offered home visits and/or virtual appointments.

We will ensure that care is delivered by health and social care professionals who understand the specialist needs of this patient group. If the patients with ME&CFS are unable to attend their appointments reasonable adjustments will be made to ensure they are involved and have suitable representation from family/carer member when required.

Access to virtual group clinics at the triage stage to support self-management and opportunity to further enhance a peer support network with other patients with ME&CFS will be offered.

This will ensure that patients are not waiting longer than six weeks after referral to be contacted by the specialist service.

We will ensure a personalised care and support plan is holistic and assessment ongoing care is undertaken by a health care professional with expertise in ME&CFS.

We will ensure that there is clinical leadership to support the ME&CFS service. We will promote career opportunities in ME&CFS services to attract talented healthcare professionals and highlight the desirability of these roles.

We will know we are making a difference because we will see:

• 60% of patients with ME&CFS reporting improved outcomes from national quality of life tool EQ-5D-5L
• an increase in the number of patients with ME&CFS diagnosed within 3 months as per national guidance by late 2024
• an increase in number of patients/carers report satisfaction and confidence in their care plan as part of newly commissioned services by 2025
• the ME&CFS e learning training programme established and accessible by health and social care professionals by 2024

Case Study

Coproduction driving ME&CFS Service Redesign and Development

A robust feedback process is in place across Suffolk which empowers people to provide commentary via platforms such as ‘Let us Talk’ and ‘Have Listened’. In 2018, this coproduced approach resulted in a new Consultant led ME&CFS service for Suffolk people to better cope with unmet demand for services.

The voices of the ME community are being listened to, enabled by the coproduction process that SNEE has in place with our people and communities. We are now beginning to break down barriers, stopping stigma and bringing ME&CFS into the wider public lens.Transformation Programme Manager, Alexis Johnys, has empowered this process and all those involved, so that clinicians, healthcare practitioners, social care professionals and local authority education staff can work together with the ME&CFS community.

Improving the understanding of complex unmet needs and current inequalities of care for those with ME&CFS and treating them according to their needs ensures the best, most cost effective and highest quality of life outcomes for people and carers. This also better enables health quality prospects for their future.

Quote: “Patient Groups would like to thank NHS Suffolk for their long-term support, together with the Local Authority Norfolk & Suffolk Health Overview Scrutiny and Joint HOCS Committees, who have been crucial to chances of resolution and success.”
Barbara Robinson and Tina Rodwell – Suffolk Youth and Parent support group ME&CFS.

1.1.8 Cardiovascular Disease

Why is this important for people in Suffolk and North East Essex?

The best care and quality of life for people with cardiovascular disease (CVD) are essential if everyone in SNEE is to live well.

CVD affects around 7.6 million people in the UK and is a significant cause of disability and death. Although there has been a substantial reduction in deaths from cardiovascular disease in the past 20 years, it remains the second highest cause of death in England and is the largest cause of premature mortality in deprived areas. It is the single biggest area where the NHS can save lives over the next 10 years.

Circulatory conditions make the largest contribution to the overall difference in life expectancy between men (Essex 24.9% and Suffolk 23.8%), and the second largest contribution between women (Essex 17.9% and Suffolk 13%) living in the most and least deprived communities, therefore targeting CVD would have the biggest impact on reducing inequalities in SNEE ICS.

Poor cardiovascular health can cause heart attacks, strokes, heart failure, chronic kidney disease, peripheral arterial disease, and the onset of vascular dementia and will account for around 1 in 4 of all premature deaths before the age of 75. A close link exists between diabetes and cardiovascular disease, which is the most prevalent cause of morbidity and mortality in diabetic patients. CVD is also closely associated with health inequalities and is also more common where a person is male, older, has a severe mental illness, or ethnicity is South Asian or African Caribbean.

Risk factors associated with CVD such as smoking, physical inactivity, poor diet, hypertension, high cholesterol and obesity are more common in more deprived areas, so the burden of CVD is experienced disproportionately by the most deprived communities where you are almost twice as likely to die prematurely than those in the least deprived. CVD risk factors are common in patients with diabetes, placing them at increased risk for cardiac events. Therefore, targeting these risk factors in patients with diabetes is critical to minimise the long-term cardiovascular complications of the disease. The incidence of diabetes continues to rise and has become one of the most prevalent and costly chronic diseases in the UK.

The NHS LTP outlines the intention to improve care for patients nationally by preventing 150,000 heart attacks, strokes and dementia cases over 10 years (2019-29) by improving the detection and management of Atrial Fibrillation (AF), high Blood pressure and Cholesterol, together called the ABCs.

Early detection and treatment of CVD can help patients live longer and healthier lives. Improving the effectiveness of services such as the NHS Health Check will enable people to know their “ABCs” and allow those identified with any high-risk conditions to be rapidly treated. This is aligned to public health priorities to reduce health inequalities and reduce the gap in CVD deaths between the most and least deprived areas, including achieving the targets below:

Atrial Fibrillation (AF) targets:

• 85% of the expected number of people with AF are detected by 2029
• 90% of patients with AF who are already known to be at high risk of a stroke to be adequately anticoagulated by 2029

High Blood Pressure targets:

• 80% of the expected number of people with high blood pressure are diagnosed by 2029
• 80% of the total number of people already diagnosed with high blood pressure are treated to target as per NICE guidelines by 2029

Finding and treating people with high blood pressure is arguably the most effective way to prevent heart attacks, strokes, cognitive decline and premature death and disability.

Cholesterol targets

• 75% of people aged 40 to 74 will have received a formal validated CVD risk assessment and cholesterol reading recorded on a primary care data system within in the last five years by 2029
• 45% of people aged 40 to 74 identified as having a 20% greater 10-year risk of developing CVD in primary care are treated with statins by 2029
• 25% of people with Familial Hypercholesterolaemia (FH) are diagnosed and treated optimally according to NICE Guidelines by 2024

It is estimated that 40% of an adult population are eligible for high intensity statin therapy. Many of this population are not on any statin therapy, potentially as much as 85%. Taking true intolerance into account, 35% of eligible patients need to be switched to a high intensity statin to meet the NICE lipid optimisation recommendations. In SNEE we are in the 10th decile (worst 10%) for switching from low and medium intensity stains to the newer high intensity versions.

There are three classes of lipid management medicines in the clinical pathway: high-intensity statins (HISTs); Ezetimibe; and PCSK9 inhibitors. Two further medicines have recently been added to the pathway: Bempedoic acid and Inclisiran. Current data shows the number of patients in Suffolk benefitting from PCSK9s is broadly in line with predicted prevalence. However, the number of patients in north east Essex amounts to only 27% of the predicted prevalence showing a significant shortfall in this area.

Heart failure is often the final common pathway for almost every cardiovascular disease, and it is now described as an epidemic that will get worse as the population increases. There are an estimated 920,000 people living with heart failure in the UK. Due to an ageing population and increased survival from acute cardiac events, such as heart attacks, the burden of heart failure in the UK is rising.

Hospitalisations account for the high cost of treating heart failure, at almost 2% of the NHS budget. 80% of heart failure is currently diagnosed in hospital, despite 40% of patients having symptoms that should have triggered an earlier assessment. People living in our most deprived areas have also been shown to have consistently worse outcomes than the most affluent groups.

Cardiac Rehabilitation (CR) is a programme of care to help recovery from a heart attack, cardiac surgery, and other interventions for people with heart disease and is recommended by NICE and the British Society for Cardiac Rehabilitation (BACPR). It can save lives, improve quality of life, reduce the chances of further problems, and reduce hospital readmissions. Cardiac rehabilitation for people with HF has also been shown to be effective and is recommended by NICE. However, a recent National Audit of Cardiac Rehabilitation (NACR 2015) report, of the total number of patients accessing cardiac rehab services in England & Wales, showed less than 5% had a primary diagnosis of “heart failure”.

What do we know about people’s local experiences?

As of March 2022:

• 2.73% (males 2.73% and females 2.21%) of SNEE patients registered with a GP practice had Atrial Fibrillation (AF) which is an increase year on year. The age group 65 – 85 years has the highest prevalence of AF
• 16.55% (~162,177) of SNEE patients registered with a GP practice had Hypertension which is an increase year on year

Hypertension: Although standards are in place that describe good control of hypertension, it is estimated that only four in ten adults in SNEE with high blood pressure are both aware of their condition and are managing it properly.

Table 1: Hypertension across Suffolk and Nort East Essex

Area	Total estimated undiagnosed hypertension	Total diagnosed but not achieving optimal blood pressure management
SNEE	83,032 (34%)	44,821 (28%)
Ipswich & East Suffolk	35,800 (35.8%)	16,727 (26%)
West Suffolk	18,999 (31.8%)	11,864 (29%)
North East Essex	28,233 (32.9%)	16,230 (28%)

Diabetes: In 2020/21, over 60,000 (7.1%) people registered to a GP practice had been diagnosed with diabetes in SNEE, with an estimated 12,600 people who have the condition who have not yet been diagnosed. The observed to expected ratios range from 77% for Ipswich and East Suffolk CCG, to 92% for West Suffolk CCG and 83% for North East Essex CCG.

Heart Failure: In SNEE, there were 11,800 patients with a Heart Failure (HF) diagnosis in 2020/21 (1.1%). Only 31% of HF patients are receiving an annual review in SNEE (2020/21) though this is better than England average.

How we plan to make a difference

The ICB will ensure that:

• people have the information and support they need to reduce the risk of developing cardiovascular disease
• people with cardiovascular disease have the right treatment and support to manage their condition
• people have the best treatment and care for survival and recovery from cardiovascular disease.
• we will reduce health inequalities for patients with cardiovascular disease

People have the information and support they need to reduce the risk of developing cardiovascular disease

More people will receive prevention services that are based on best clinical practice

Provide more awareness of CVD and risk factors particularly in communities at highest risk of CVD.

Improve the occurrence and effectiveness of physical Health Checks. People will know their level of risk of developing CVD and if necessary, can access early treatment to prevent developing CVD. A range of checks are available for people with specific needs such as mental health or learning disabilities.

We will work with partners, including the local authority public health teams, to increase the uptake of healthy behaviours that protect against cardiovascular disease. Support will be offered to both those with and without cardiovascular disease. We will look to do this systematically in general practice, in hospital outpatients and hospital inpatients by offering referral to support services for those wishing to address smoking, excess alcohol intake, excess body fat and physical inactivity.

Improve opportunities for people to check their health provided by the voluntary sector, community pharmacists and GPs.

More people will routinely “know their numbers”, the ABCs (Atrial Fibrillation, Blood pressure and Cholesterol) and will have their management optimised

More people at higher risk of AF will be detected earlier through the optimisation of new technologies, such as the Fibricheck app, the Kardiamobile device, and the Zio XT patch

More people with a diagnosis of AF will have their treatment optimised according to treatment pathways to prevent complications such as stroke.

Reduce geographic variation by focussing on areas with lower-thanexpected prevalence and treatment rates of AF.Increase the detection of patients with hypertension through case finding interventions including home blood pressure monitoring and PHM tools.

Increasing primary care awareness and adoption of the NICE- endorsed lipid management pathway which supports uptake and optimisation of lipid lowering therapies for eligible patients. Implementing additional support to reduce inequalities in CVD, for example in those people with Learning Disabilities and Serious Mental Illness.

More people will know they know if they have a genetic risk of Familial Hypercholesterolaemia (FH)

Increasing the detection of FH via a PHM approach, and for example supporting digital family history tools.

Developing and embedding FH pathways in primary, community and secondary care.

Implementing new approaches to testing, for example the FH child-parent screening pilot in which children are tested for the condition in routine immunisation visits to their GP.

People with cardiovascular disease have the right treatment and support to manage their condition

People with CVD will be supported to improve their ABCs (Atrial Fibrillation, Blood pressure and Cholesterol)

Improve blood pressure optimisation by introducing digital and non-digital self-management pathways.

Improved management of lipids by identifying and increasing the number of patients reviewed with suboptimal lipid control in SNEE

Identify patients eligible for newer treatments such as PCSK9i therapy and those with possible Familial Hypercholesterolaemia and ensure appropriate referral for genetic cascade screening.

Develop a community-based lipid service in north east Essex, providing a tiered approach to lipid management, incorporating the principles of improved patient education, medicines optimisation and treatment closer to home.

Encouraging the use of the Accelerated Access Collaborative (AAC) pathways to simplify lipid management and encourage adherence to national guidance for optimal management of patients at high risk of CVD and reducing the incidence of heart attacks or strokes.

People experiencing breathlessness will have better access to tests for heart failure and heart valve disease

Improved access to echocardiography in primary care. 80% of heart failure is diagnosed in hospital, despite 40% of people having symptoms that should have triggered an earlier assessment. Greater access to testing will improve the early detection of heart failure and heart valve disease.

Exploring access to wearable technology to test and monitor conditions.

Work with the East of England Cardiac Network via the CPIP programme to evaluate the breathlessness pathway and embed its principles into pathways within SNEE.

Rapid access to heart failure nurses for patients not staying on a cardiology ward. People will receive the support they need regardless of the function of the ward they are admitted to.

People with CVD will receive the best hospital-based specialist care and advice and have personalised support, receiving the right treatments and leaving hospital as soon as possible. Better personalised planning will reduce nights spent in hospital and reduce drug spend.

People with heart failure and heart valve disease will be supported by integrated community services

Multi-disciplinary community-based teams which bring together acute and community clinicians will work together with PCNs. Integrated working will provide more co-ordinated services, improving diagnosis and treatment.

People have equality of access to cardiac care services, in locations that are accessible to all our communities. People living in deprivation or marginalised communities should have equal access to high quality cardiac care.

Improved access to mental health services such as NHS Talking Therapies for people with long term conditions. Integrating mental and physical health support for long term conditions supports self-care and improved quality of life.

Carers of people with CVD have support to stay well. Supporting carers helps them in their role and also helps them maintain their own good health and wellbeing.

Access to important services, such as rehabilitation and other relevant recovery and support services in primary care and the community.

Improved integration between acute and community-led services, to enable access to services and support they need. Support for patients through our ICS End of Life strategy will be provided for patients at the end stage of their treatment and care.

People with diabetes will have the support they need to self-manage their condition

Please refer to the Diabetes condition section (6.7.5) within the overall JFP document and 1.1.4 within this appendix.

Pregnant people with Type 1 diabetes can monitor their glucose levels more effectively

Please refer to the Diabetes condition section (6.7.5) within the overall JFP document and 1.1.4 within this appendix.

People have the best possible treatment and care for survival and recovery from cardiovascular disease

People who have a cardiac arrest have access to urgent treatment in their community

We will enable this by providing a network of community first responders and defibrillators. The chances of survival from a cardiac arrest happening outside hospital doubles if the person receives immediate CPR or defibrillation.

Educating the public including young people about how to recognise and respond to out-of-hospital cardiac arrest.Working with partners to harness new technology and ensure the public and emergency services can rapidly locate defibrillators in an emergency.

Mapping data on incidence of out-of-hospital cardiac arrests, and map data on survival using the British Heart Foundation’s national Outcomes Registry data. Mapping incidence will enable community services to be directed to where need is greatest. Using the Outcomes Registry will enable tracking of survival rates and targeting of unwarranted variation.

Develop improved and enhanced cardiac catheterisation and pacing suites including a new cardiology laboratory at WSFT. This will relieve strain on specialist services at Royal Papworth Hospital NHS Trust and reduce stressful and lengthy journeys to Cambridgeshire and elsewhere for patients.

People will receive high quality cardiac and vascular care based on best practice

Develop and use guidance and tools to support commissioning of cardiac services.

Develop and use specifications and clinical policies to improve the quality of cardiac and vascular services.

Work with royal colleges, General Medical Council (GMC) and HEE to increase access to interventional radiology training.

Implement the recommendations of the Congenital Heart Disease Review. High quality services and care pathways enable good recovery and help improve people’s quality of life.

Work with the East of England Cardiac Network on the Cardiac Pathway Improvement programme (CPIP) in order to implement best practice pathways.

People have the best chance of recovery from heart attack, surgery, or procedure

We will scale up provision of the NICE recommended cardiac rehabilitation interventions as this is an evidenced based intervention supporting clinical guidelines and is offered across a range of cardiac diagnoses, including acute coronary syndrome, heart failure and after coronary revascularisation.

People will have a choice of community and acute based services to rehabilitate and recover. Local community assets such as leisure centres can provide a range of services to suit people’s preferences.

Future approaches to the delivery of cardiac rehabilitation need to align with the growing multimorbidity of an ageing population and cater to the needs of the increasing numbers of patients with cardiac disease who present with two or more chronic diseases.

Offering an exercise-based programme of cardiac rehabilitation to all adults with chronic heart failure when their condition is stable which will help to prevent the person’s heart failure from worsening, reduce their risk of future heart problems and improve their quality of life.

We will reduce health inequalities for people with cardiovascular disease

We will reduce health inequalities for people with cardiovascular diseaseaWe recognise that Covid-19 has had a disproportionate impact on many who already face disadvantage and discrimination which has resulted in a general widening in health inequalities. We will act to add additional resources to supporting these groups.

We will use PHM tools to help us identify gaps and variations in services, and additional needs in the population, to ensure resources are targeted in the most effective way. This information, such as CORE20+5 will be integrated into our committee dashboards in order to provide direction to our work including levelling up service performance.

We will know we are making a difference because we will see:

• more people with AF detected (85%+ of expected by 2029) and having their condition managed (90% of detected with AF who are already known to be at high risk of a stroke to be adequately anticoagulated by 2029)
• more people with high blood pressure detected (80%+ of expected by 2029) and managed (80% of detected to be treated to NICE guidelines target).
• 45% of people aged 40 to 74 identified as having a 20% greater 10-year risk of developing CVD in primary care are treated with statins by 2029
• A drop from the 10th (poorest) decile to at least the 8th lower decile by end 2025/26 in the use of high intensity statins over low/medium intensity stains resulting in more people having their lipids optimised.
• 5% reduction in acute admissions with a first presentation of heart failure
• 5% reduction in deaths from cardiovascular related disease
• a reduction in the gradient in cardiovascular disease mortality across different levels of deprivation

Quote: Patients have told us:

“The cardiac service and intervention is excellent giving me complete peace of mind when I was dealt with immediately”

“This year was two years post heart attack. I received a letter from my surgery inviting me to see the practice nurse for my coronary heart
disease annual check. I think it is an excellent idea for reassurance to have an annual check in the surgery, it was worthwhile having a BP,
urine and weight check.”

1.1.9 Stroke Services

Why is this important for people in Suffolk and North East Essex?

Stroke, a preventable disease, is the fourth single leading cause of death in the UK and the single largest cause of complex disability. Preventing strokes, providing high-quality treatment, care, and support to recover after a stroke, are essential if everyone in SNEE is to live well.

Over 100,000 people have a stroke in the UK every year. Stroke is the leading cause of disability and the fourth largest cause of death in the UK. Stroke incidence increases with age, however 1 in 4 stroke survivors are working age adults, resulting around 85,000 admissions for people to hospital with a stroke a year. A stroke is a serious lifethreatening medical condition and there are over one million stroke survivors in England, more than half of whom have a disability resulting from their stroke.

Stroke mortality, however, has halved in the last two decades. Without further action, however and due to changing demographics, the number of people having a stroke will increase by almost half (44%) and the number of stroke survivors living with disability will increase by a third by 2035. Currently someone in the UK is admitted to hospital with a stroke every four minutes (Headway UK).

Many people who survive a stroke, with appropriate and timely rehabilitation and support, can make a full and complete recovery. However, a third will be left with some form of long-term disability, affecting mobility, cognition, vision, psychological wellbeing, or communication. The NHS LTP outlines the intention to improve care for patients nationally by preventing 150,000 strokes and heart attacks over the next ten years (2019-29) by improving the detection and treatment of the high-risk conditions – Atrial fibrillation, Hypertension (high blood pressure), Hypercholesterolaemia (high cholesterol), together known as the ABCs.

Individuals with these high-risk conditions are more at risk of developing CVD which includes heart attack, heart failure, stroke, and many cases of dementia. Please see the CVD section (6.7.9) for further information.

80% of strokes can be prevented by the detection and effective management of:

• above high-risk conditions, for example, where 100 people are identified as having AF and receive anticoagulation medication, an average of four strokes are avoided, preventing serious disability or even death
• modifiable risk factors through behaviour and lifestyle change such as eat a healthy diet, exercise regularly, and avoid smoking and drinking too much alcohol and knowing your ABCs

If you have already had a stroke, making these changes can help reduce your risk of having another stroke in the future.

What do we know about people’s local experiences?

In SNEE there are 1,575 strokes per year (2020/21). Males are likely to experience their first stroke earlier than women: 68 is the mean age of onset for men compared to 73 for women.

In SNEE, we have 2% of patients registered with a GP practice recorded as having stroke or transient ischemic attack (TIA), this is higher than the England and the East of England Region (both at 1.8%). At least one-third of stroke survivors will have some form of depression within the first year, which may be as high as 60% in all stroke survivors.

Deprivation and Inequalities

People from the most deprived areas of the UK are twice as likely to have a stroke and more likely to die from stroke. People with lower socioeconomic status are also more likely to have strokes younger, increased comorbidities, worse outcomes, and less access to support services. Nationally, the incidence of initial stroke and subsequent major adverse outcomes are higher in women, and people living in socially deprived areas. Many of those who survive a stroke, with
appropriate and timely rehabilitation and support, can make a full and complete recovery. However, a third will be left with some form of long-term disability, affecting mobility, cognition, vision, psychological wellbeing, or communication

Prevention is the best way to help prevent a stroke including eating a healthy diet, exercising regularly, and avoiding smoking and drinking too much alcohol. These lifestyle changes can reduce your risk of problems including if you have already had a stroke, making these changes can help reduce your risk of having another stroke in the future. In SNEE, the impact of deprivation can have a significant impact on stroke risk. Physical health issues such as, heart failure, diabetes, atrial fibrillation, hypertension, high cholesterol, and obesity can lead to stroke and with age many of the risks are increase for these. Other modifiable risk factors such as smoking, exercise, diet and alcohol intake have an impact on these conditions and the risk of having a stroke.

As an example, in one of our Alliance areas, for two post code areas which are the most deprived in the population the smoking history is higher. The younger age cohort of 30-39 (males) with a history of stroke or TIA also has a much higher percentage of people requiring support for acute non elective medical care and this group is noted as more socially vulnerable, three times higher than in the wider Alliance population. The older age groups in these more deprived areas also require higher levels of social care funding.

The NHS LTP sets out a number of priorities to prevent thousands of strokes by identifying and supporting people with the high-risk conditions:

• the ABCs:
  • Atrial fibrillation
  • High Blood Pressure
  • High Cholesterol

As an ICS we will ensure more patients who have a stroke, get the best treatment by:

• improving access to ICT and MRI scanning
• effective use of clot-busting drugs
• increased use of clot extraction treatment
• train more NHS consultants to offer the latest surgical techniques
• ensure people have easy access to acute stroke care
• maximising workforce efficiencies

In the East of England these priorities are being delivered through an `Integrated Service Delivery Network’ (ISDN). Across the NHSE East of England Region we work together to ensure that there is a full range of services locally and more specialised pathways available, sharing resources and supporting joint on call rotas so people can have support 24/7. This collaborative approach ensures a patient-centre for better clinical outcomes, patient experience, and patient safety. These aims will cover the entire stroke pathway, from prevention, pre-hospital phase, hyper-acute stroke care, (TIA) services and rehabilitation. The key ambitions are:

• develop the best practice personalised stroke pathways configured and managed from pre-hospital care onward, including ambulance, thrombectomy, Early Supported Discharge (ESD) and six-month reviews within initial implementation, building to include the full pathway from prevention through to life after stroke
• to cover the entire pathway from prevention through to life after stroke; a flexible, future-proofed competency-based stroke workforce, supported by a skills and capabilities framework and toolkit; (Source: NHS Integrated Community Stroke Specification, 2022)
• develop a comprehensive dataset that meets the needs of clinicians, commissioners, and patients in capturing care quality and outcomes

As an ICS we will ensure (inclusive of the above ISDN framework):

1. Our early supported discharge services are fully developed by 2025 in line with the national service specification
2. Best practice stroke pathways are implemented by 2028
3. Thrombectomy services are available to all eligible stroke patients by 2025 with easy access to an accredited centre within our region
4. All stroke patients have a six-month review by March 2025. (Nationally under 30% of patients with stroke are recorded as having a review of their stroke care at six months (GIRFT report, 2022)
5. People have the best experience of recovery after a stroke, integrated care delivery in partnerships with voluntary and other care sectors to improve outcomes at six months and beyond
6. People are supported to stay healthy, through raising awareness of the risk factors to avoid a stroke
7. People receive the best quality treatment and care following a stroke
8. To complete the transformation of stroke services in the community for an integrated model of care across providers, in line with the SNEE model produced and issued for partial procurement in 2019. This was a five-year minimum programme of development of services
9. To increase the offer of vocational assessments, so that more people feel empowered to return to work post stroke and sooner

How we plan to make a difference

As an ICS having listened to our patients and health care professionals, we will ensure that:

• people know how to stay healthy to avoid a stroke and increase awareness of the risk factors
• people are identified as being at risk of stroke, by improving detection and treatment of the high-risk conditions: AF, high blood pressure and high cholesterol, working with other programmes such as CVD and diabetes
• people receive the best quality treatment and care following a stroke
• people have access to the best possible stroke services in the community following discharge from inpatient care by implementation of the Integrated Community Stroke Service (ICSS) Model
• people have the best experience of recovery after a stroke, integrated care delivery in partnerships with voluntary and other care sectors to improve outcomes at six months and beyond

People know how to stay healthy and avoid a stroke, increasing awareness of the risk factors

To increase public awareness of the risks of stroke, risk factors and keeping healthy will help avoid stroke as well as other related conditions, we will ensure people have a range of opportunities to identify their risk of stroke and long-term conditions so they can act early, we will:

• continue use the national `FAST’ symptoms awareness campaign and local awareness sessions
• in 2023 we will host a stakeholder event for primary and secondary prevention improvement and develop a stroke prevention plan with clear deliverables before the end of March 2024
• in primary care, we will improve the uptake of health checks and improve awareness of stroke for high-risk groups. For people at heightened risk every contact in primary and community-based care should encourage stroke prevention and healthy lifestyles.
• we will maximise training and education opportunities in acute trusts, community-based services and PCNs, with consideration of use of technologies such as the current screening for Atrial Fibrillation in community pharmacies
• people should have a range of opportunities to identify their risk of stroke and long-term conditions so that they can act early.

People identified as being at risk of stroke, by improving detection and treatment of the high-risk conditions; AF, high blood pressure and high cholesterol, working with other programmes such as CVD and diabetes we will:

• use PHM data to actively identify patients at risk of stroke, in the following areas: AF, BP and cholesterol and providing education and treatment. This will be in working with other programmes such as CVD and diabetes. By 2027/28 we aim to ensure that 75% of the adult population in SNEE have had their ABC recorded and reviewed within the last three years.
• across SNEE the diagnosed prevalence of AF is 2.5% and the estimated prevalence is 3.12%. We have a potential gap of 0.8% undetected AF; this equates to approx. 6,250 people across SNEE within undiagnosed AF. We will aim to analyse these estimations and bridge the gap by earlier detected through the optimisation of new technologies, such as Kardiamobile, Fibricheck and Zio XT patch and other PHM strategies.
• ensure more people with a diagnosis of AF will have their stroke risk assessed and treatment optimised according to treatment pathways to reduce the risk of stroke. In England 33.5% of stroke admissions who had a history of AF were not prescribed anticoagulation prior to their stroke. Across SNEE this varies from 17.8% (North East Essex) to 34.4% (West Suffolk). Geographic variation is reduced by focussing on areas with lower-thanexpected prevalence and treatment rates of AF.
• Maximise training and education opportunities in acute trusts, community-based services and PCNs and pharmacies.
• Increase the detection of patients with hypertension, high cholesterol and familial hypercholesteremia (FH) and optimising treatment pathways in line with the CVD programmes.

People receive the best quality treatment and care following a stroke

Early recognition of stroke symptoms, recognising when someone may be having a stroke and seeking urgent help will enable early treatment and improved recovery. To achieve this, we will:

• continue use the national `FAST’ symptoms awareness campaign and local awareness sessions
• utilise the mobile stoke unit which has the capability for on scene diagnosis to enable provision of safe, effective, and appropriate care therefore keeping people within the community wherever possible. The modified ambulance attends calls to suspected strokes allowing crews to carry out CT scans and other tests inside the vehicle. This is a research trial with a hospital, the ambulance trust and a university working together, and is the only service of its kind in the country
• enhance access to acute clinical care out of hours, using virtual technology
• thrombectomy services will be available to all eligible stroke patients by 2025 ensuring easy access to an accredited centre within our Region
• improving access to thrombectomy, currently the national position is 1.9% of patients have access, by 2026 it will be 10%
• meeting the NHS seven-day standards for stroke care and the National Clinical Guidelines for Stroke in all stroke units by end of 2023. Pathways will ensure people receive the right care for their needs in the right setting
• reduce health inequalities via a clear plan of deliverables by end of March 2024
• ensure by the end of 2023, as recommended int the national clinical guidelines, people will be offered a minimum of 45-minutes of appropriate therapy, either daily or at a frequency that will allow them to meet their rehabilitation goals. Therapy will continue for as long as the person is willing and capable and a measurable benefit from the treatment is evident
• achieve improvements in the national Sentinel Stroke National Audit Programme (SNAPP) metrics with trust action plans to reach/sustain a category A compliance by March 2023
• implement best practice stroke pathways 2028

People will have access to the best possible stroke services in the community following discharge from inpatient care by implementation of the Integrated Community Stroke Service (ICSS) Model. We will:

• provide intensive rehabilitation in accordance with people’s needs in a timely manner
• provide the ICSS needs-based stroke specific (not time specific) community rehabilitation commissioned pathway, aligning services to the specification of the ICSS model and that of the Integrated Stroke Delivery Network national and regional priorities
• improved support for people with dysphasia. Community-based care will be available to people in their homes and in care homes
• fully developed stroke early supported discharge services (ESD) by 2025 in line with the national service specification and ICSS

Patients deemed not eligible for ESD should be assessed within 72 hours of discharge from hospital and provided with treatment no later than seven days after their assessment, or earlier if based on clinical judgement and patient choice. The intensity of the community stroke rehabilitation intervention is typically lower than that offered to ESD patients (e.g., about three sessions per week) but should be established between the stroke specialist and stroke survivor based on clinical need tailored to goals and outcomes. This will be part of the wider ICSS model which is an integrated approach that builds on the Early Supported Discharge and the wider community provision

People to have access to carer support, community integration, participation with services they need to live as well as possible with their condition. We will enable this by:

• providing an integrated seven days per week service
• providing early supported discharge
• high-intensive and needs-based community stroke rehabilitation and disability management

The SNEE ICSS will work collaboratively with the VCSE sector and social care to ensure tailored patient centred care with provision of six months reviews, information, and longer-term support in the community. These community services could include blended model of remotely delivered rehabilitation or telerehabilitation and face to face rehabilitation for individuals

We will enable people post discharge from an acute inpatient setting to access services from one of the three main pathways of care:

• home with ICSS input (most patients)
• home with ICSS input combined with daily social care support
• discharged to a residential/nursing home

Through the Stroke Quality Improvement Programme (SQuIRe) by 2024 we will have started six-month reviews and created a coordination hub; we will then continue to deliver improvement across four priority quality initiatives:

• workforce planning and mapping:
• specialist stroke rehabilitation service delivered 7/7 by core MDT and links to MDT working:
• specialist stroke training for all disciplines based on Stroke-Specific Education Framework (SSEF)
• six-month reviews which will see an increase in reviews completed for people across the system. Patients entering the early supported discharge service receive a six-month review but many people that at non-early supported discharge patients do not currently receive and MDT review. Our aim will be that it is offered to 100% of people registered with a GP in SNEE who have been diagnosed as having had a stroke by a secondary care physician by 2025.

People have the best experience of recovery after a stroke, integrated care delivery in partnerships with voluntary and other care sectors to improve outcomes at six months and beyond

We will enable this through a patient-centred approach by:

• he use of key workers, personalised care and support planning and delivery (key worker plans and co-ordinates)
• personalised Information Provision (e.g., my stroke record, personal stroke record)
• NHS Talking Therapies for people with long term conditions
• use outcomes of the stroke association national Patient Reported Experience Measures (PREMs) questionnaire for stroke survivors four to eight months post stroke and will highlight positive patient experiences and where there are gaps and where improvement is needed across the whole pathway. This audit will inform further QI initiatives and develop pathways within SNEE
• people recovering from a stroke receive high quality integrated care to improve their rehabilitation. We will enable this by working with a range of organisations, including, ICANHO, Headway and Sue Ryder on new models of care of neuro rehabilitation with increased capacity for inpatient provision
• increase the offer of vocational assessments, so that more people feel empowered to return to work post stroke and sooner
• more unpaid carers identified and supported
• end of life care is a key part of the ICSS model, if a patient is dying, then effective and where necessary enable rapid processes for discharge should be in place, between the inpatient team and the community services, to meet the patient’s wishes, including their preferred place of care and death

We will know we are making a difference because we will see:

• improved optimisation of detection and treatment of high-risk conditions (Atrial Fibrillation, Blood Pressure, Cholesterol)
• achieving best results within SSNAP data for in patient and community care including post-acute organisational audits
• 24/7 availability of stroke physicians for effective decisions on thrombolysis or thrombectomy (the latter through networked arrangements within the Region).
• an increase in the number of people receiving thrombolysis or thrombectomy treatment
• increased usage of CT perfusion scans, MRI and other technology to assess impact of stroke on the brain
• an increase in the proportion of patients with a stroke who are directly admitted to a stroke unit within 4 hours, from 81.1% in 2023/24 to 83 % in 2027/28
• improved quality of care through implementation of seven-day standards stroke care where required and outcomes of SSNAP stroke audit
• increased capacity in the specialist workforce for stroke care, flexible, resilient with adequate training based on the StrokeSpecific Education Frameworko developed a robust, creative, and sustainable workforce plans
• which will deliver to the stroke service specification
• ensuring patient and carer views are embedded into our business
• increased access to NHS Talking Therapies
• improved support for care and nursing homes in terms of education and assessment skills
• increase access and provision of vocational rehabilitation by 2026
• an increase in the percentage of applicable patients who are assessed at six months, with a referral hub established and MDTs in situ. Teams to provide timely and appropriate rehabilitation to people in care homes post-acute treatment aiming to capture all surviving stroke patients in SNEE
• six-month assessment process to be in place by end of March 2024

Key Outcomes are:

• increase the number of people returning to work post stroke by 2026
• increase access and the intervals offer for therapies, so that by 2025 all patients will have access to 45 minutes of the appropriate therapy within an inpatient and community care setting. For 2023-2025 this will mean doubling our time periods
• reduce the mortality rates by 20% by 2028 in SNEE in particular for the under-75 mortality rate
• more patients discharged home and able to manage independently or with a carer
• we will have developed a flexible, future-proofed competencybased stroke workforce
• improved outcomes for the most complex Category A patients with a reduced risk of secondary complications

Case Study

George’s Story

A 60-year-old man had a left total anterior circulation stroke, he was thrombolysed and then discharged to the Early Supported Discharge Team (ESD) team, then referred to Icanho with assessment 5 months later. He had moderate-severe aphasia and mild dysarthria, resolved dysphagia, limited use right upper limb (reduced muscle strength/dexterity).

He had cognitive impairment – attention/memory, fatigue, depression/emotional lability and was avoiding social situations.

The team worked on his vocational rehabilitation to support his goals to improve right hand dexterity and writing, to get back to fishing, sailing and adventure sports. He needed to find strategies to manage fatigue, improve
speech and be able to drive again and most of all to return to work.

The Therapy Plan involved physiotherapist 1:1 sessions, occupational therapist/vocational rehabilitation 1:1 sessions, speech, and language therapist: 1:1 sessions, clinical psychology advice/review, a social worker – available for support to partner too…and then COVID lockdown but this resulted in periods of rehabilitation being offered via remote channels, demonstrating that technology can help in continuation of care.

Getting back to work and life involved workplace assessment and liaison with company managers, analysis of duties/roles alongside capability with practical assessment with observation of work tasks/use of equipment. Reasonable adjustments suggested based on grading hours and duties, then very gradual phased return starting 2 hours/twice a week non-consecutive day to build strength and general work tolerance. The success was he went back to work and most of all started to drive again.

1.1.10 Neuro Rehabilitation

Why is this important for people in Suffolk and North East Essex?

Rehabilitation improves health outcomes, reduces disability, and improves quality of life. In SNEE we aim to provide the best care and quality of life through a person-centred approach to rehabilitation that focuses on the impact that their health condition has on the person’s life, rather than focusing just on their diagnosis, so that they can continue to live well.

The WHO (2011) defines rehabilitation as: “a set of measures that assist individuals who experience, or are likely to experience, disability to achieve and maintain optimal functioning in interaction with their environments”.

Patients requiring specialist neurorehabilitation are those with complex disabilities. As well as requiring specialist medical input from consultants trained in rehabilitation medicine, neuropsychiatry and other relevant specialities, patients typically present with a diverse mixture of medical, physical, sensory, cognitive, communicative, behavioural and social problems. These require specialist input from a wide range of rehabilitation disciplines (e.g., rehabilitation-trained nurses, physiotherapy, occupational therapy, speech and language therapy, psychology, dietetics, orthotics, social work etc.)

Rehabilitation interventions therefore should be aimed at achieving broad objectives of preventing the loss of function; slowing the rate of loss of function; improving or restoring function; compensating for lost function and maintaining current function.

It is increasingly acknowledged that effective rehabilitation delivers better outcomes and improved quality of life and is essential to reduce health inequalities. The WHO states that:

• rehabilitation involves identification of a person’s problems and needs, relating the problems to relevant factors of the person and the environment, defining rehabilitation goals, planning, and implementing the measures, and assessing the effects
• educating people with disabilities is essential for developing knowledge and skills for self-help, care, management, and decision-making

People with disabilities and their families experience better health and functioning when they are partners in rehabilitation. Specialist Neurological Rehabilitation is required for patients with complex neurological disabilities or Acquired Brain Injury (ABI) from a variety of pathways: Traumatic Brain Injury, Cancer / Neurosurgery pathway such as brain tumours and other neurosurgical, neurology for people with complex progressive neurological conditions, strokes, specialist spinal rehab, cardiac pathways for patients who suffer anoxic brain injury and other conditions such as complex Functional Neurological Disorders. Rehabilitation services need to cover a broad range of complex conditions that mostly require bespoke care for patients’ individual needs. Patients typically present with a diverse mixture of medical, physical, sensory, cognitive, communicative, behavioural, and social problems.

In the East of England Region with a population of 6.2 million people, there are only seven consultants in rehabilitation medicine with only two Level One Specialist Units in Cambridge and Norwich. Within the SNEE ICS, there are no rehabilitation medicine consultants. It is therefore important that on discharge from these centres patients can access the comprehensive care they require back in their own system. The case study (see below) demonstrates how important good repatriation is locally.

The NHS LTP outlines the intention to ensure better care for major health conditions by:

• promoting a multidisciplinary team approach where doctors, nurses and other AHPs work together in an integrated way to provide tailored support that helps people live well and independently at home for longer
• giving people more say about the care and support they receive, particularly towards the end of their lives
• offering more support for people who look after family members, partners or friends because of their illness, frailty, or disability.
• developing more rapid community response teams, to support older people with health issues before they need hospital treatment and help those leaving hospital to return and recover at home e.g., REACT (The Reactive Emergency Assessment Community Team)
• offering more NHS support in care homes including making sure there are strong links between care homes, local general practices and community services

What do we know about people’s local experiences?

The overarching ambitions of SNEE ICB are to:

• extend the local capacity for complex access to Level 2b beds. Procurement will commence in 2023 for a block contracted service for a guarantee of six beds and continue to spot purchase from a range of market provision that meet the content service specification and are part of a provider framework
• conduct a workforce review, including specific focus on clinical psychology
• improve equity of access to MDT Specialist community neuro rehabilitation teams across the ICS
• develop clinical pathways in line with the Integrated Community stroke Specification (and National Stroke Service Model (2021) to support rehabilitative needs of Neuro and stroke patients
• reshape specialist clinical pathways for specific neurological conditions, ensuring equity of access across the ICS – with a specific focus on Motor Neurone Disease (MND, Functional Neurological Disorder (FND, and Vestibular Disorders
• continue transformation of Parkinson’s disease pathways across the ICS

How we plan to make a difference

• People requiring rehabilitation have support as early as possible
• People requiring rehabilitation are supported to live well
• People requiring rehabilitation will be better able to manage their condition through high quality support
• People with rehabilitation will be better support to manage their condition through a more integrated model of care and cohesive workforce
• People with rehabilitation requirements will have access to technology and the appropriate level of care when needed

We plan to support people requiring rehabilitation earlier by:

• identifying patients’ needs and referral to appropriate level of service and within a reasonable traveling distance, including increased home-based /domiciliary rehabilitation services for people who require them
• using established networks and systems for referral and funding to ensure that individuals can gain timely access to appropriate neuro-rehabilitation services outside their locality, where gaps exist in local service provision
• decreasing the length of stay (LOS) in acute hospital settings or facilitate earlier discharge of patients to their local environment
• more people having access to a specialist in-patient neurorehabilitation services led by a consultant trained and accredited in Rehabilitation Medicine (RM) by 2025.
• Improving the effectiveness and responsiveness of neurology services through the implementation of national specifications -National Stroke Service Model (2021) (including Integrated Community Stroke Specification (ICSS)) and British Standards for specialist Rehab for Community dwelling adults (2021) by scoping current services, gap analysis, and highlighting development plans required to meet the specifications.
• ensuring sufficient psychology support with recruitment to the additional 6.8wte roles that are required in SNEE and sufficient roles to support Parkinson Disease Services for equitable access across the ICS. We will undertake a review of psychology workforce across all main areas of neurorehabilitation but also, cancer, dementia, and critical care.
• establishing specialist clinical pathways for specific neurological conditions, ensuring equity of access across the ICS – with a specific focus on motor neurone disease (MND), Functional neurological disorder (FND) and Vestibular Disorders.
• improving equity of access and an increased level of provision for Parkinson Disease services across the system by 2026
• ensuring access to specialist neurological rehabilitation teams who operate within Level 1, Level 2a and Level 2b neuro rehabilitation inpatient units, specialist neuro rehab community teams, and wider stroke services, to deliver positive outcomes for patients with complex needs. As part of this, complete a procurement of Level 2b beds before December 2023

Quote: “A Parkinson’s forum hosted by Healthwatch, demonstrated the need for more Parkinson’s Nurse Specialists in the community, with increased open access and ability to prescribe.”

We plan to support people requiring rehabilitation to live well by:

• increasing access and provision of vocational rehabilitation by 2026, ensuring that all patients wishing to return to work have this support
• improving access for people with disabilities in developing knowledge and skills for self-help, care, management, and decision-making
• reducing the need for Continuing Health Care (CHC) which require complex support such as tracheostomy, patients with gastrostomies, cognitive and neuro-disability. This should be supported by access to comprehensive Level 2b support in a timely manner
• developing a community rehabilitation model in line with ICSS specification for patients which is inclusive of those meeting the Early Supported Discharge criteria based on diagnosis and those that do not but ensuring ongoing rehabilitation for all. The mapping of existing rehabilitation services has highlighted areas of inequity across the ICS, and the aim is to
• increasing short stay neurological rehabilitation available to all individuals and improved equity and service standards in line with national guidance
• standardising care pathways for all patients through development of agreed patient pathways from acute to community, focussing on Parkinson’s Disease, MND, FND and Vestibular pathways 2023-2025
• establishing new MND clinics in North East Essex by 2025
• completing service mapping for patients with FND and those with vestibular disorders by end of March 2024, optimum clinical pathways for patients with FND and those with vestibular disorders by 2025
• offering more generic community rehabilitation. Map existing rehabilitation services and highlight areas of inequity across the ICS, with an aim to improve equity and service standards in line with national guidance. We will focus on FND and MND to ensure that clear pathways of care are consistently available
• developing a `personalised care’ approach giving people choice and control over the way their rehabilitation and support is tailored and delivered around individual strengths, needs and ‘what matters’ to them

We plan for people requiring rehabilitation to be better able to manage their condition through high quality support by:

• ncreasing the level of provision of step-down rehabilitation provision if needed from level 1 services for patients requiring longer term rehabilitation and who can be appropriately managed with within a level 2 service
• increasing access to Level 3 provision to support care homes that provide to Category C physical disability patients with standard nursing care and Category C cognitive behaviour (CB) patients with only standard precautions
• increasing capacity of our community rehabilitation services with MDTs developed alongside specialist community rehabilitation to be delivered in a co-ordinated and integrated manner. Services will be delivered in a structured way and will ensure shared discussion and decision-making throughout the patient pathway from referral, assessment, rehabilitation interventions, to review, onward referrals or discharge for patients returning to their own home or other community setting (including care homes and nursing homes)
• improving data recording and collation. Information should be recorded through a standardised and consistent tool/platform where data can be collated at a local level for workforce planning and at national level to inform strategic decisions
• people having the best quality neurological services. In the past, services have often been focused on specific diagnostic groups (e.g., head injury, stroke, or Acquired Brain Injury (ABI)). We aim to move away from this to embrace a more open and flexible approach in which services are centred on patient needs and commissioned in networks to allow greater flexibility, so that patients can access the service that is more suitable for their needs, even if it is out of their local area
• having a patient centred coordinated approach to patient care. We will increase the use of the key worker system into as many services and pathways as possible so that at least 80% in active care
• standardising our assessment and improve our referral processes. This will build up a supporting infrastructure to deliver neuro rehabilitation to patients as required across the continuum of care

We plan for people with rehabilitation requirements to be better supported to manage their condition through a more integrated model of care and a cohesive workforce by:

• rehabilitation networks. Improve integration of agencies providing care, alongside patient and career engagement. We will align services to the specification of the Community Integrated Service model and have more workforce to support the demonstrably more complex caseload
• improving interagency working with social services and other agencies is crucial for effective rehabilitation. Each service should have an identified system for efficient and timely liaison with social services and all other relevant agencies such as mental health services
• improving information sharing, joint working, and uncomplicated processes for interagency referrals. The aim being to minimise repeated assessments for the patient and time taken to be assessed by any receiving team
• focussing on primary and secondary prevention to address health inequalities and equity. Rehabilitation services will be designed to deliver flexibility to best meet patient’s individual needs. Programmes will be designed around the patient and should not be diagnostically rigid but facilitate access to any specialist assessment, treatment, and rehabilitation they need. In SNEE, we will in 2023 identify any gaps in referral pathways. We will ensure broad and specialist neurological assessment
• making use of a wide variety of new and established interventions to improve outcomes e.g., exercise, technology, Cognitive Behavioural Therapy
• having a higher proportion of psychology/counselling staff by 2027/28

We plan for people with rehabilitation requirements to have access to technology and an appropriate level of care when needed by:

• increasing patient access to technology for online planning and review
• goal setting, rehabilitation intervention and review cycle, followed by outcome evaluation is essential to confirm that goals are continuing to be met and any changing needs reviewed
• developing a neuro rehabilitation level 2b service specification to increase efficiency and timely delivery of inpatient level 2b beds and through procurement acquire a provider who can provide a unit, guaranteeing six local beds. Local access means that patients and carers will no longer have to travel to out of county placements
• reviewing the local level 3 service requirements within each Alliance
• determining the availability of suitable services in a timely manner, within a reasonable travelling distance and be part of planned pathways of care and delivered within integrated rehabilitation networks. In particular for our rural areas, this may involve the establishment of satellite services, use of remote ways of working with investment in telehealth, remote assessment and telerehabilitation, and peripatetic teams
• Services should have processes in place to facilitate access for those who might struggle to engage initially (i.e., “groups at risk of disadvantage” ensuring there is access to interpreting services

We will know we are making a difference because we will see:

• Patient Centred Rehabilitation tailored to individual requirements with a person-centre approach
• people with neurological disabilities having a greater degree of independence and confidence. Higher rates of people returning to employment, training, or alternative meaningful activity
• reduction in long term care and support costs as people achieve more independence
• a decrease the numbers of people with ABI coming into contact with the criminal justice system by 8% by 2027/28
• a reduction of 10% in the numbers of people with ABI within the homeless population by 2028
• fewer numbers of people with ABI finding themselves in crisis services by 2026
• a reduction in the number of later complications by 20% by 2026
• a reduction in the risk of re-admission to acute hospital or mental health services by 30% by 2027/28
• each person having a sharable, personalised care and support plan which records what matters to them, their outcomes and how they will be achieved by 2028
• timely and Improved rehabilitation processes for the accurate assessment of individual needs and personalised goal setting to form the cornerstone of rehabilitation
• improved data recording, sharing and collation by 2026
• improved discharge planning and service integration across NHS, voluntary and Charitable organisations by 2025
• increased availability and quality of rehabilitation services by 2028.
• a reduction in disability levels on those with neurological conditions
• Patient Reported Outcome Measures / Patient Reported Experience Measures data indicating and assisting the involvement of the patient/carer voice at all stages of rehabilitation development by 2026

There is clear evidence that, shorter waiting times for access to specialist rehabilitation services correlates directly to improved patient outcomes and lessens the burden of disability. In SNEE we aim to:

1. improve access to specialist rehabilitation service
2. increase the range of services that assist individuals who experience, or are likely to experience, disability to achieve and maintain optimal functioning in interaction with their environments
3. deliver well planned, goal-oriented specialist rehabilitation at the appropriate intensity for the person
4. increase shared decision making (SDM) processes by which individuals and clinicians can work together to understand and decide what tests, treatments, or interventions are most suitable bearing in mind a person’s own circumstances
5. have an adequately staffed experienced workforce

Quote: “Rehabilitation after stroke requires a multi-professional, multi-agency approach to move forward and live well after the event. Stroke and Neuro Rehabilitation needs specialist rehabilitation delivered by skilled team members seven days a week to regain meaningful activities, lessen ongoing care needs and provide psychological support for survivors and their carers within their home’’.
Louise Dunthorne Physiotherapy Clinical Specialist (Stroke)

Case Study

Suspected Stroke, delayed discharge but returns to independent living

The patient was admitted to hospital with a suspected stroke but was diagnosed with autoimmune encephalitis. She had previously been completely independent as a family carer for her partner, attended a gym 3 times a week and spent time with her children and grandchildren. On admission she spent 2.5 months as an inpatient as there was no appropriate subacute discharge destination identified. She had poor sequencing of basic tasks, difficulty with planning and problem solving (cognitively and in terms of motor planning), a lack of problem-solving skills and was disorientated in time and place but once discharged with care in place she was walking independently and mobile after three weeks. Staged
discharge with afternoons at home with family prior to discharge.

She was discharged home with 24-hour care support (aided by social services) and twice weekly outreach by hospital therapy staff. Goals are now focused on getting the patient more independent in accessing community resources and caring for her husband more independently. Support for fatigue management and involvement from Icanho and Headway is in place for ongoing therapy for the patient and extended family. What worked to facilitate rehabilitation and support to live independently again was the flexibility with rehab options, which is essential in truly patient focused care. It was a great example for the team to accept neuro patients in their service model to allow neuro-specific rehabilitation within the home environment. There was recognition of the specialist support required to meet the demand identified in this case. If this was a more established pathway positive impact on length of stay and reduce the significant time required to establish discharge plan (reduced therapy time on the wards for rehabilitation)

1.1.11 Learning Disabilities and Autism

Why is this important for people in Suffolk and North East Essex?

The best care and quality of life for people with learning disabilities and autism are essential if everyone in SNEE is to start well and live well. The NHS has a crucial role to play in helping people with a learning disability, autism or both lead longer, happier, and healthier lives.

The NHS LTP aims to improve people’s health by making sure they receive timely and appropriate health checks, while improving the level of awareness and understanding across the NHS of how best to support them as patients.

More people with complex needs will be supported to live fulfilling lives at home rather than in hospital, while thousands will be offered a personal health budget, giving them choice over the type of support they need to live the life they choose.

What do we know about people’s local experiences?

In 2021, Suffolk County Council Public Health published its learning disability needs assessment. The following details of the local Learning Disability population is drawn from this work. It is of note that the needs assessment did not include individuals with a diagnosis of autism without having a learning disability. Working with system partners, Suffolk County Council and Public Health will be developing an All-Age Autism needs assessment in 2022/23. It is also to be noted that any references to Suffolk wide data in the needs assessment includes the Waveney area.

Key ICS wide headlines are:

• data held by GPs across Ipswich and East Suffolk and West Suffolk, records a total of 3,376 individuals with a learning disability aged 14 or over, on their registers in 2022, (2,175 for Ipswich and East Suffolk and 1,201 for West Suffolk)
• data held by GPs across North East Essex records a total of 2,284 individuals with a learning disability aged 14 or over, on their registers in 2022
• the gap between estimated and recorded numbers is likely to be due to many individuals having no diagnosis and GP recorded data being incomplete. The gap in the projected and actual numbers suggests that there is an unidentified and unmet demand
• the projected increase in the number of individuals with a learning disability is related to two factors:
  • improvements in neonatal care and
  • general improvements in health and social care provision which improve life expectancy
• improved life expectancy will lead to increasing numbers of older individuals with learning disabilities over coming decades with the largest increase expected in those aged 80 and over

In Suffolk, as part of the Suffolk Alliance Mental Health and Learning Disability and Autism Transformation Programme, priority four is developing four key Learning Disabilities and Autism models of care. These will address the national service model, the NHS LTP and the Learning Disability improvement standards for NHS trusts; “A Rights Base Approach”, the Learning Disability Strategy and the #averydifferentconversation Mental Health Strategy.

The four key areas are: Inpatient care; Intensive Support Team; Learning Disability and Autism Specialist Community and Forensic Support.

Through the transformation we have seen the Intensive Support Team expand to support individuals with autism spectrum disorder. This has led to Suffolk reducing its resilience on inpatient care and consistently performing with trajectory set by NHSE.

We have increased the health facilitation roles with a particular focus on supporting individuals who are high risk due to highly complex health needs, with co-ordination and additional support for those who do not attend annual health checks. The team will support those 14+ who will need health facilitation/liaison/co-ordination on the physical health dynamic support register or require health desensitisation.

A project has been initiated which will link specialist services and Primary Care, to employ an individual to take a deep dive into the learning disability registers at a practice-by-practice level. A granular list will be developed which will include when someone last had an annual health check, identify those who do not attend for annual health check (or GP/ Health appointment), ethnicity data, uptake of screening and flu vaccination. Individuals will be followed up, to understand their story at an individual level, providing the necessary support to improve access and enable delivery of the annual health check and provide targeted interventions to reduce risks.

This level of detail will give a very clear picture of the local population to identify those who are living with minimal support, uptake by 14–17-year-olds and those from ethnic minority groups. We will be able to identify those who require an enhanced level of care enabling local health services to better understand local need and develop pathways. This will help develop the Dynamic Support Register for physical health. This work will also facilitate a greater understanding for Primary Care Leads, of issues which may be faced by practices; impacting quality, performance and identify action to be taken.

The Peer Educator Network which began in 2018 continues to improve the awareness of annual health checks within the learning disability community, with a raft of information made available to support people to understand what to expect from their annual health check.

North East Essex Alliance delegates its commissioning of specialist health and facilitation of national LD programmes to the Southend, Essex and Thurrock (SET) LD Equalities Team who work closely with NEE Alliance to improve services of local NEE people. This includes identification of people who have not had an annual health check in the last year, improving uptake of health programmes, Learning Disabilities Mortality Review (LeDeR) reviews and STOMP. There are
local LD and STOMP forums with broad representation and local aims and objectives.

Autism only and crisis response for young people are being commissioned this year and healthcare assistants have been funded for hospital liaison nurse service. People with a learning disability are employed to work with their peers
on promoting and understanding what an annual health check is.

SNEE ICB funded a small project in Clacton with the aim of raising awareness of cancer screening programmes for adults with a learning disability. Providing group and one to one sessions the project tackled barriers to accessing cancer screening, provided easy read information and trained ambassadors with lived experience of learning disability to become appointment buddies. These buddies not only empowered their peers to understand the importance of cancer screening, but they also supported others to make and attend screening appointments.

How we plan to make a difference

As an ICB we will ensure:

• primary and / or community-based services are provided to keep people healthy in the community
• high quality services are provided to adults with learning disability and / or autistic adults
• we provide good quality health and care services that work in an integrated way to optimise outcomes. action is taken to tackle the causes of morbidity and preventable deaths in people with a learning disability and for autistic people
• the whole NHS will improve its understanding of the needs of people with learning disabilities and autism and work together to improve their health and wellbeing.
• investment is increased in intensive, crisis and forensic community support
• we focus on improving the quality of inpatient care across the NHS and independent sector

Primary and / or community-based services are provided to keep people healthy in the community

Improve community-based support by 2023/24 so that people can lead lives of their choosing in homes not hospitals; further reducing our reliance on specialist hospitals and strengthening our focus on CYP.

High quality services are provided to adults with learning disability and / or autistic adults

Make sure that the whole NHS has an awareness of the needs of people with a learning disability and autistic people, working together to improve the way it cares, supports, listens to, works with, and improves the health and wellbeing of them and their families.

We provide good quality health and care services that work in an integrated way to optimise outcomes

Ensure all NHS commissioned services are providing good quality health, care, and treatment to people with a learning disability and autistic people and their families by 2023/24. NHS staff will be supported to make the changes needed (reasonable adjustments) to make sure people with a learning disability and autistic people get equal access to, experience of and outcomes from care and treatment.

Reduce health inequalities, improving uptake of annual health checks by 2023/24, reducing over-medication through the Stopping the Over-Medication of people with a learning disability, autism, or both by 2023/24. Take action to prevent avoidable deaths through LeDeR by 2023/24.

Continue to champion the insight and strengths of people with lived experience and their families in all of our work and become a model employer of people with a learning disability and of autistic people.

Action will be taken to tackle the causes of morbidity and preventable deaths in people with a learning disability and for autistic people

We remain committed to extracting the learning from LeDeR reviews, implementing actions, and demonstrating change. There will be a continued focus on ensuring 100% in-scope review have been completed within six months. In Suffolk, the Peer Educator Network will continue to improve the awareness of annual health checks within the learning disability community. People with a learning disability are employed to work with their peers on promoting and understanding what an annual health check is.

The whole NHS will improve its understanding of the needs of people with learning disabilities and autism and work together to improve their health and wellbeing

The Oliver McGowan Mandatory Training will be rolled out across the SNEE ICS which aims to ensure the health and care workforce have the right skills and knowledge to provide safe, compassionate, and informed care to autistic people and people with a learning disability. The Oliver McGowan Training comes in two tiers and is designed so all staff working across all CQC registered services receive the right level of mandatory training.

Investment is increased in intensive, crisis and forensic community support

Work will continue to bolster the workforce through the transformation of specialist Learning Disabilities and Autism health services.

We will focus on improving the quality of inpatient care across the NHS and independent sector

For every one million adults, there will be no more than 30 people with a learning disability and/or autism cared for in an inpatient unit by the end of March 2024. We will continue to work with system partners in developing pathways for people in crisis for the use of the dynamic support register and care education treatment and reviews.

We will develop a 3-year plan to localise and realign inpatient mental health, learning disability and autism services in line with NHSE Inpatient Framework in 2023-24.

We will know we are making a difference because we will see:

• a minimum of 75% of people aged 14 and over with a learning disability on GP learning disability register will have had an annual health check by 2023-24
• a continued focus on achieving LeDeR reviews to ensure that 100% in-scope reviews are completed in 6 months
• the ICB ensuring people who have been referred to an autism diagnosis service will wait no longer than 18 weeks from referral to first appointment by 2024-25
• no more than 30 people in every one million adults with a learning disability and/or autism cared for in an inpatient unit by 2023-24.
• all Care (Education) and Treatment Reviews (C(E)TRS) Standards are met

Quote: “We are committed as part of the Suffolk Learning Disability partnership board and in partnership with the Southend, Essex and Thurrock Learning Disabilities Health Equalities Board in delivering through partnership and coproduction the ambitions set out in the JFP and NHS LTP”.
Lisa Nobes, Senior Responsible Officer for Learning Disabilities and Autism

Case Study

Alice’s Story

Alice is a 63-year-old diagnosed with a moderate learning disability and mood disorder. She lives in supported accommodation in a shared living placement. When unwell, Alice can display behaviours that challenge to herself, to the environment and to others.

In the past Alice has experienced frequent mental health crises resulting admissions to hospitals under the Mental Health Act. Alice’s mental health began to deteriorate and through the dynamic support register, the system responded. A care education and treatment review took place which identified key actions for the local system to consider. The local system increased community support and health support through the Intensive Support Team. Unfortunately, remaining in her home became unsustainable so Alice became a resident of Lavenham Place admission avoidance service.

She received individualised care, assessment and treatment from health and social care services. Following a short stay Alice was able to return home.