Joint Forward Plan Appendix 6

Appendix 6: Detailed Live Well Domain Plans – Start Well

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1.1 Start Well – Giving children and young people the best start in life

1.1.1 Preconception, Maternity and Neonatal Care

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

Preparation for pregnancy, healthy pregnancies, healthy births, healthy parents and a healthy first two years of life are essential if everyone in SNEE is to have a good start in life.

The national plan for improving maternity and neonatal services ‘Better Births’ (2016) highlights those healthier pregnancies, births, parents and a healthier first two years of life would have wider societal impacts for people living in SNEE. In SNEE we want to take this one step further to include being healthy during the period leading up to pregnancy (preconception), as this can also influence pregnancy, birth and beyond.

We aim to achieve:

• Healthy and supported parents, babies, and children, providing equitable outcomes, eradicating all inequity in clinical outcomes
• Strong attachments between parents and babies due to positive pregnancies and birth outcomes
• Expectant families making informed decisions about pregnancy, childbirth, and early parenthood, through easy-to-understand language used by professionals
• Improved emotional wellbeing for expectant families and post birth
• Fewer children who require special educational needs and disabilities (SEND) and continuing care input due to long term conditions/complex disabilities, because of pregnancy and birth complications
• Improved educational attendance and attainment due to fewer children with long term conditions/complex disabilities, because of pregnancy and birth complications
• Improved population health by supporting prospective parents to be as healthy as possible prior to and during pregnancy, and therefore their children to suffer from less long-term conditions

Get further information on Better Births.

What do we know about people’s local experiences?

Through regular engagement with pregnant people and new parents, we understand that:

• the most important factors for preconception, maternity and neonatal care are feeling safe, having a positive birth experience, choice, and support
• they want better sources of information, delivered through various types of media, which is accessible and enable them to make informed decisions about what they want for their care
• personalising care to their individual situation was essential for them to feel safe and to have a positive experience
• they were worried whether there is a sufficient proportion of midwives to provide safe and compassionate care, and for home births
• they want more flexible visiting times and overnight stays for hospital births, and birthing partners wanted to be more involved
• they want better communication with professionals using language which is easily understood and inclusive of their needs and concerns
• people want better awareness and recognition of perinatal mental health by professionals including midwives, health visitors, GPs, and other support postnatally such as infant feeding advice, and signposting to community resources

For further information, visit the Healthwatch Suffolk and Healthwatch Essex websites.

How we plan to make a difference

Following a consultation process with families, the Maternity and Neonatal Strategic Plan developed five outcome statements that we aim that our families will be able to say following their maternity and neonatal care pathway:

• we received excellent high-quality care that helped us to feel safe and be safe and well
• we knew what was happening throughout our pregnancy, childbirth, and early days of parenthood, we felt heard, trusted our care givers, and were involved in all decisions
• our care was tailored to our individual needs, culture, and circumstances, with our whole family involved in decisions and care
• we felt prepared to become new parents, knew how to care for our child, and knew where to go for help when we needed it
• care givers were kind, explained everything in clear and easily understood language, and were on our team, helping us to have a positive experience and outcomes

Therefore, these outcome statements will be achieved through several key priorities:

• all babies and families will receive high quality care based on the best evidence available
• women with heightened risk of preterm birth or a complex pregnancy will receive targeted care to keep them and their babies well during their pregnancy and birth
• fewer babies will be born to parents who smoke during pregnancy reducing the number of babies born prematurely and/or with low birth weight, miscarriages and neonatal deaths and babies who have long term health conditions such as respiratory conditions, CVD, and obesity
• families will have continuity of carer during pregnancy, birth, and the postnatal period. We will focus on ensuring continuity of care for women from minority ethnic communities and from most deprived groups, as aligned to the ambitions of the Core20Plus5
• families will be able to access services and information in a more convenient and efficient way. Digital technologies will help them make informed choices about their care, enabling them to have personalised care according to their needs and wishes
• families will have an enhanced experience during the worrying period of neonatal critical care. Families and their babies will receive high quality specialist neonatal care. Neonatal care will be safe, effective, co-ordinated, and based on best practice
• pregnant people, babies and families will be able to access joinedup antenatal care, birth facilities, postnatal care, mental health, specialist services, health visiting and social care services
• families will be better supported to feed using evidence-based best practice
• mothers, birthing people, and their partners will have improved access to high quality perinatal mental health care
• women will have improved postnatal physiotherapy to support them to recover from birth
• we will develop and support our workforce to offer high quality, kind and compassionate care for our service users and partners

All babies and families will receive high quality care based on the best evidence available

• Our clinically led Local Maternity and Neonatal System (LMNS) will continue to monitor the quality of care that our women receive, working in collaboration with NHSE to support systems when our services are having difficulty achieving the national expectations and/or evidence-based practice
• The LMNS will shape and lead maternity and neonatal transformation, ensuring we are implementing the National Maternity Transformation Plan, SNEE LMNS Strategic Plan and Equity Plan, regularly reporting our progress to the ICB, ICP and NHSE
• The LMNS will provide services that are targeted at reducing poorer outcomes for certain groups of families and will monitor all clinical outcomes to see if groups are at risk so that all children in SNEE have the best start in life
• The new Saving Babies Lives Care Bundle version three will be implemented in every maternity unit, embedded, and overseen by our clinically led safety forum. Independent evaluation has shown that the care bundle supports a significant reduction in stillbirth and preterm births rates
• The services across SNEE will continue to work together to review all serious incidents, share learning and ensure any changes in practice are embedded across the system. This will enable all services to learn from each other and collectively prevent incidents from occurring in different units
• Both Trusts in SNEE are active members of the National Maternal and Neonatal Health Safety Collaborative and have a Board level safety champion. This contributes to the national ambition of reducing the rates of maternal and neonatal deaths, stillbirths and brain injuries that occur during or soon after birth
• The Ockenden and East Kent investigations provided a significant number of recommendations for all maternity and neonatal units across the country to implement to increase the safety of pregnant people and babies. A single delivery plan will be published in spring 2023 by NHSE which will encompass the recommendations made. It will provide a framework to address the required actions and provide assurance that they are robustly implemented. Our units will be supported by the LMNS to be compliant with all recommendations. This will enable our services to demonstrate that they have the right processes in place to evidence and share their safety and outcome records, that they listen to families and act on feedback, that professionals learn and work together and provide high quality care. These were seen as the essential elements to safe care by the Ockenden review team.
• Maternity services will be rooted in, and respond to, what women and their families need and want. Service users will continue to be involved at the heart of improvements through Maternity Voice Partnerships, Healthwatch, and community leaders. All developments will be coproduced with service users and staff representatives to ensure services meet their needs and preferences and are continuously improved
• SNEE is a national early implementer of the Independent Senior Advocate role, as recommended in the Ockenden inquiry. The advocate will be available to families who have questions about their care and will support them during follow up meetings with clinicians where concerns are discussed, particularly where there has been an adverse outcome. The advocate is there to support the family, with the lessons learnt from the conversations shared across the three maternity and neonatal units to avoid future recurrence where possible

Women with heightened risk of preterm birth or a complex pregnancy will receive targeted care to keep them and their babies well during their pregnancy and birth

We will enable this by:

• providing preconception advice, support and intervention to women who are at risk of preterm birth or a complex pregnancy. People who have had a previous preterm birth, have a known medical or mental health condition, or people from certain communities who have heightened risks will be offered preconception support by 2025. Being as healthy as possible, taking medications that are safe for pregnancy, and having secure home circumstances can all reduce the risk of a complicated pregnancy and preterm birth
• reviewing our local preterm prevention and multiple birth clinics for women with heightened risk of preterm birth by summer 2023 to ensure they provide personalised care, are based on the most up to date clinical evidence, and that they participate in research programmes to assist national advancements in practice.
• for women with the most complex pregnancies, we have started working in collaboration with the East of England Maternal Medicine Network centres, providing joint assessment and treatment care pathways. This will avoid the need for people to travel outside of our region to gain the advice and support needed. Timely access to specialist advice and care improves outcomes for the pregnant person and baby
• working with public health teams, voluntary sector partners and community leaders to provide targeted support and advice for women from deprived and diverse communities who are at risk of poorer outcomes by 2025. Community voices will inform the way care is delivered so that it is inclusive and accessible to families, so that they feel safe and achieve equitable outcomes
• assessing people who have signs of premature labour within a clinical triage service and seeing a senior midwife within 15 minutes of arrival by sprung 2023. We will introduce the nationally acknowledged PeriPrem care pathway to ensure a robust care plan is devised with the pregnant person by summer 2023. This will enable us to support those at less than 27 weeks of gestation to give birth in a maternity service with an on-site neonatal intensive care unit (NICU) as this has been proven to reduce the risks of brain haemorrhage. It also supports the provision of magnesium sulphate and antibiotics before birth for people in or at risk of imminent premature labour. We will also delay the clamping of the umbilical cord, administer caffeine, offer early milk, monitor the baby’s temperature and oxygen levels once the baby is born. All these measures contribute to the health and development of the baby and reduce the number of pre-term babies born with cerebral palsy and other long-term conditions

Fewer babies will be born to parents who smoke during pregnancy

Fewer babies will be born to parents who smoke during pregnancy reducing the number of babies born prematurely and/or with low birth weight, reducing the number of miscarriages and neonatal deaths, and reducing the number of babies who have long term health conditions such as respiratory conditions, CVD, and obesity.

We will enable this by:

• educating communities about the risks of smoking and importance of healthy lifestyles prior to and during pregnancy by 2024
• working with public health teams in Suffolk and Essex to include being ready for pregnancy messaging within every contact with people who may be planning a pregnancy, including lifestyle courses by 2024. We will also run joint campaigns aimed at the public to raise their awareness of the changes people can make prior to, and during pregnancy, to improve their outcomes from early 2023
• providing specialist midwives and support workers to coach whole households to stop smoking for good commencing by spring 2023. This will be through a collaboration of specialist coaching, nicotine replacement therapy and/or vaping provision where clinically appropriate
• exploring the rollout of “Looking after my lungs” approach to family care givers of premature babies quitting smoking from 2024

Families will have continuity of carer during pregnancy, birth, and the postnatal period

We will enable this by:

• offering families, the opportunity to have the same midwife caring for them throughout their pregnancy, during birth and postnatally from spring 2023. People who receive continuity of carer are 16% less likely to lose their baby and 24% less likely to experience preterm birth

Families will be able to access services and information in a more convenient and efficient way

Digital technologies will help them make informed choices about their care, enabling them to have personalised care according to their needs and wishes.

We will enable this by:

• providing access for all pregnant people to a personalised care support plan and evidence-based information to enable them to make the right decisions about their care by spring 2024. This is currently provided through the “Mum and Baby” app which has been in use within SNEE for several years. However, by March 2024 all women will be able to access their maternity notes and information sources through their smart phone or other devices
• creating a single information hub for both service users and professionals by 2024. It will provide a centralised online source of trusted/evidence-based information on a wide range of subjects related to preconception, pregnancy, birth, and early parenthood. It will include self-referral points to access midwifery, specialist physiotherapy and other services provided in the area; and signpost to community support that parents may want to access. It will provide resources for professionals and service users for those who cannot access the internet. The information will be provided in several languages, in easy read and video formats. This will support families to make informed decisions about their care, and access to accurate advice, support, and signposting in a timely manner
• ensuring professionals communicate with families in an accessible way, by avoiding medical terms, acronyms, and complicated explanations on an ongoing basis. They will provide families with the facts and help them to make informed choices about their care. They will check that the family have understood the information they have been provided with and the decisions they have made
• when a family is experiencing a complex pregnancy or there are some difficulties predicted, the professionals will proactively discuss what might happen in an emergency. By talking with the family during a calmer time in their care they can explain all options available and allow the family to consider what interventions they may prefer in certain circumstances. If an emergency was to occur the family would again be offered the whole range of options but would have had a chance to make a considered decision

Families will have an enhanced experience

Families will have an enhanced experience during the worrying period of neonatal critical care. Families and their babies will receive high quality specialist neonatal care. Neonatal care will be safe, effective, co-ordinated, and based on best practice.

We will enable this by:

• improving maternity triage and accessing specialist care at the right time on an ongoing basis which will improve survival, safety, and the quality of outcomes for babies  care coordinators working with families within clinical neonatal networks to develop improved parent accommodation and support whilst their baby is in neonatal care from spring 2023.
• Psychologists will also be recruited to help families manage the trauma of their child being unwell and requiring neonatal care during this time  family Integrated Care being implemented across our units to enable families to become more involved in the care of their baby and enhance their attachment with their child, starting with an app and parent passport in spring 2023
• recruiting extra neonatal nurses and increasing the numbers of Allied Health Professionals (AHPs) supporting families by March 2024. Extending resources and expanding roles ensures the right skill mix to meet the baby’s care and support needs
• a neonatal Quality Improvement (QI) lead working across SNEE, supporting all three neonatal units to implement the Neonatal Critical Care Review recommendations and other national advances in care to ensure every baby has the best outcomes that they can achieve on an ongoing basis
• offering neonatal transitional care at all three hospitals by 2024, provided by midwives, neonatal nurses, and nursery nurses. It offers care for babies who require more support than normal but who do not require a neonatal unit, provides additional support for small and/or late preterm babies and their families, and helps ensure a smooth transition home from neonatal units. It enables the parent and baby to be kept together, allowing strong attachment and independent parenting skills to develop, as well reducing the need for the baby to be in the neonatal unit longer than is necessary, if at all

Pregnant people, babies and families will be able to access joined-up antenatal care, birth facilities, postnatal care, mental health, specialist services, health visiting and social care services

We will enable this by:

• family hubs continuing to be developed as ‘one stop shops’ for pregnant women and families. These hubs will provide a centre for midwifery, health visiting, mental health care and other care providers to meet with pregnant people and families and support them through their parenthood journey
• the most vulnerable babies and their families being offered targeted support on an ongoing basis. Integrated community-based support such as parent-and-baby groups within deprived and diverse communities, Family Nurse Partnership teams and Young Parents Pathways to support young parents during pregnancy and their first two years of the baby’s life. Collaborations with VCSE organisations will enable families to receive advice and support to help them with their parenting and provide safe care for their children, reduce social isolation, and improve wellbeing
• antenatal education being offered to families in several different ways on an ongoing basis. An online course has been made available to families so that they can either attend “live” sessions or recorded sessions at a time that is convenient to them and their partners. Online peer support sessions and question and answer webinars have also proven to be helpful to pregnant families. For some more vulnerable communities, targeted face to face education sessions will be provided alongside antenatal clinic appointments. However, the education delivered will be consistent so that families receive the same advice from professionals across the system
• families providing feedback that they would benefit from postnatal support, advice, and signposting. This would vary from help with feeding, accessing parent-child groups, colic, and social isolation so we will pilot providing postnatal education sessions on the most common areas of support, and postnatal one to one advice to families with individual needs. We will work collaboratively with midwives Community Action Suffolk and the VCSE sector to achieve this

Families will be better supported to feed using evidence-based best practice

We will enable this by:

• maternity, neonatal and health visiting services delivering the accredited infant feeding programme – UNICEF Baby Friendly Initiative on an ongoing basis. It aims to support families with feeding and developing close and loving relationships to understand the importance of this for their baby’s development. It can also support parents who are formula feeding by providing information on choosing milks and making up feeds, helping them to feed safely and responsively
• a SNEE infant feeding strategy supporting families to feed their babies, by providing information resources, workforce training, and care provision to ensure all professionals within the system offer consistent advice and support by 2024. Nationally, only 1% of babies are exclusively chest fed at six months. The health benefits of chest feeding will be shared with families, but they will be supported to make an informed choice about the way they feed their child
• increasing our number of peers feeding supporters who can help new parents (either in postnatal wards or in the community) to confidently feed their baby by 2025
• supporting mothers and birthing people to offer chest milk to their baby even if they are in neonatal care by offering chest milk on delivery and throughout their stay. The neonatal units will also advise on how to progress from tube feeding to oral feeding before or after discharge home on an ongoing basis

Mothers, birthing people, and their partners will have improved access to high quality perinatal mental health care

We will enable this by:

• specialist perinatal mental health services offering a range of mental health support including parent-infant, couple, co-parenting, and family intervention by March 2024. Evidence-based psychological therapies support parents’ wellbeing, and the care and wellbeing of their children
• pregnant people and new parents with moderate to severe perinatal mental health difficulties continuing to have access to specialist community care from pre-conception to 24 months after birth with increased availability of evidence- based psychological therapies
• a multi-agency bereavement team supporting families through pregnancy loss, stillbirth, neonatal death and/or sudden infant death by 2024. This will include specialist bereavement midwifery teams who will work seven days a week to support the family in the immediate period following their pregnancy related loss. A wider team including psychologists, nurses, counsellors, and health visitors will go onto offer specialist bereavement and psychological support, counselling, trauma care, pregnancy/birth reflections, counselling during future pregnancies and offering care of the next infant following any sudden infant death

Women will have improved postnatal physiotherapy to support them to recover from birth

We will enable this by:

• midwives and specialist physiotherapists working together to help pregnant people understand the importance of pelvic floor exercises, and how to avoid pelvic health problems in the future. They will use exercise apps, self-assessment tools and information to support pregnant people
• in line with NICE guidance, we have started offering rapid support, advice, and specialist physiotherapy interventions during and after their pregnancy for conditions such as pelvic pain and incontinence. A single point of access will allow people to access the service without the need for a referral, which will help them to receive care as quickly as possible  if physiotherapy cannot completely resolve the person’s difficulties, they will ask an MDT of professionals such as midwives, obstetricians, gynaecologists, urologists, and colorectal surgeons to work together to support them and to ensure they receive additional care for her needs with this in place by 2024

We will develop and support our workforce to offer high quality, kind and compassionate care for our service users and partners

We will enable this by:

• reviewing all essential staff groups and establishing plans to increase the number of people, skills gaps, and experience by 2024
• establishing how we can increase our number of qualified midwives by developing different routes into the profession, such as helping maternity support workers to enter midwifery training, establishing apprenticeship schemes, and hosting local student midwives by 2025. These lessons can be shared across other professional groups involved in pregnancy and early years provision
• supporting all staff who are currently working in our teams, so that they feel valued, invested in, and reach their professional potential. We will work with staff to explore what they would appreciate most, such as training and development, flexible working, salary sacrifice schemes on an ongoing basis
• senior clinical leaders within maternity and obstetrics attending the NHSE leadership academy leadership programme to role model a supportive, open learning culture within our services

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

Children having the Best Start in Life, and therefore:

• fewer children experiencing childhood obesity, asthma, cerebral palsy, and spina bifida
• fewer adults in future generations with heart disease, diabetes, asthma and COPD, cerebral palsy, and long-term disabilities such as spina bifida, ADHD, obesity, autism, and poor mental health
• more families living in conditions which help them to remain healthy

Every family will aim to have a healthy pregnancy, childbirth, and first two years of life, so that:

• more families can have a positive and memorable pregnancy and childbirth experience
• more people from different ethnic groups and/or deprived areas who have protected characteristics or who are vulnerable can easily access and trust our services to provide tailored care for their needs
• fewer people will have complex pregnancies and preterm births
• fewer people will experience mental health difficulties during or after their pregnancies

Improvement in morbidity and mortality

• Fewer stillbirths and maternal mortality – We aim to see a reduction in the neonatal mortality rate, from 1.28 per 1000 live births and stillbirths in 2016 to 0.96 in 2023/24
• A reduction in the rate of infants with a brain injury occurring during or soon after birth from 5.33 per 1000 live births in 2017 to 2.50 in 2023/24

Preconception Models of Care

• By 2024/25 there will be targeted models of preconception care for people with pre-existing mental health and medical conditions, and/or for people who participate in the riskiest behaviours (for pregnancy) such as smoking, obesity, drug, and alcohol use
• Families will be educated about the importance of the time in between pregnancies, and their health during this period
• Public Health will deliver public campaigns on key areas of health and wellbeing such as alcohol use, smoking, and healthy eating so that everyone is as healthy as possible prior to getting pregnant
• All system partners will be educated on the importance of being healthy and ready for pregnancy and provide advice through Making Every Contact Count. The VCSE sector and Alliance colleagues will embed this approach in their models of support

Personalisation, equity, and choice

• Midwifery Continuity of Carer will be implemented across the whole system as soon as the correct workforce mix has been recruited. There is not a national timeline for this but locally, the LMNS is aiming for this to occur by 2025/26
• By the end of 2023/24 an online information hub will be created to enable families to access accurate information about pregnancy, childbirth, and early parenthood
• By 2024/25, cultural awareness training will be conducted for all team members
• Voluntary sector partnership schemes to directly influence inequity of outcomes will be embedded by 2024/5, with learning shared across the whole system to ensure all families have the right support for their needs

Safety and Quality in specific clinical areas

• Implementation of a smoke free pregnancy pathway by 2023/24
• A new Bereavement and Loss Pathway will also commence during 2023/24
• The system will be compliant with the Neonatal Critical Care Review by 2024, with a QI culture embedded into our units and dedicated neonatal matrons in post
• A system wide Infant Feeding Strategy will be produced and rolled out by 2024
• The physiotherapy-based elements of the Perinatal Pelvic Health Service are already in place. Multidisciplinary clinics, midwifery prevention model, and digital solutions will follow by the end of 2023/24

Workforce

• A recruitment and retention plan will be developed in 2023/24 and fully implemented by 2027

Quote: “Maternity and neonatal services have a critical role in providing every child with the best start in life. The Local Maternity and Neonatal System will focus on ensuring our services are based on the most recent research and national guidance, will support our staff to provide compassionate and personalised care, and will work with System partners to reduce any health inequalities our families may face. We strive to provide excellent care and support to all families within SNEE.”

Frances Bolger, Director of Midwifery

Case Study

Anna’s Story

Two and a half years ago I had a traumatic assisted delivery at Colchester Hospital which left me with a beautiful healthy
baby boy, but a grade 4 tear and significant post-partum haemorrhage. It took me months to recover. We were told then that any future children would need to be delivered by caesarean section. I became pregnant again late last year.

When I arrived in triage for my pre-op, I was incredibly nervous to even be in the building again. I cannot convey to you enough how wonderful Denise (midwife) and the whole team were on that day, putting us at ease and explaining everything. On the day of our caesarean section, Denise and the whole team were wonderful and made our section and daughter’s birth so special, we felt safe and cared for throughout.

The continuity of having one main person care for us was the main factor in this, we completely trusted her, and she was wonderful! I was home within 24hrs after the lovely Zelia and the obstetrician had checked us over. A few days later we
had a follow up call from Denise to check I was fine and recovering well.

Working for the NHS myself, I am fully aware of the constraints placed on services, and I would therefore like to congratulate you on achieving what felt like gold standard care within what I am sure are very limited resources. We will be forever grateful to Denise and the Venus team for giving us a wonderful birth experience.

1.1.2 Children and Young People

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

We want to ensure that children and young people across SNEE have the best possible start in life and can have their physical and mental health supported as they grow and develop by reducing health inequalities and adopting tailored approaches where needed. Evidence suggests a long-term trend of deepening deprivation across SNEE; therefore, this plan is focussed on areas presenting the highest level of local need and support. This also links to national and regional strategic needs and outcomes.

What do we know about people’s local experiences?

Neurodevelopment services

The NHS LTP states that together with local authority, children’s social care and education services as well as expert charities, we will jointly develop packages to support children with autism or other neurodevelopmental disorders including ADHD and their families, throughout the diagnostic process. This is because of the following challenges:

• Longer waiting times for assessment, which causes anxiety for both parents/carers and children and young people
• A significant increase in referrals, which has caused a huge pressure on diagnostic services
• Families feeling that support is only available for successful diagnosis
• That a diagnosis of ASD or ADHD is required to access specialist intervention i.e., educational placement
• Inconsistency in the quality and quantity of services across the ICS, which leaves families confused
• Inconsistent communication with families during the diagnostic process, which leads to frustration and confusion
• Transition across services, both in terms of age and geography can be confusing and result in delays in assessment
• Gaps in the current commissioned offer, particularly around Tics and Tourette’s and Sensory needs

Mental Health

The NHS LTP states that the NHS will expand mental health services for children and young people, reduce unnecessary delays and deliver care in ways that young people, their families, and carers have told us work better for them. This is because of the following challenges:

• children and young people and families wait too long for assessment and treatment
• children and young people in crisis are not supported effectively and passed around services
• there is not enough focus on early intervention and prevention
• services and support can be a postcode lottery
• physical and mental health care is not joined up enough
• there are many handoffs with support, and it is not needs led with too many thresholds to get support/treatment
• there is a lack of awareness around mental health. The workforce has not been supported with the right training, the knowledge, the skills, and confidence to support children and young people and positive mental health and wellbeing
• there is not enough support to enable resilient communities. There is a need for more local support for service users and the people who care for them, to build wellbeing and resilience across the whole networks of support
• insufficient support for individuals to care for themselves – children and young people and families are not empowered to make choices, feel in control of their lives, and live well

SEND (Therapies)

Common issues in SNEE are:

• too much variation between geographical areas leads to inequality, inconsistency, and unacceptably long waiting times for services
• lack of collaboration between partners across the system
• families unable to access support in a timely way

Asthma

Key themes of asthma care for children and young people include:

• children and young people asthma provision is good but requires more ownership of young people’s care, especially cases of very severe asthma
• children and young people, schools and parents often do not realise how serious asthma can be and are not up to date with correct inhaler usage or best practice in cases on an attack
• different ethnic backgrounds may not be engaged in the support they can access for asthma. Language barriers and lack of trust result in incorrect management and education of the condition

Epilepsy

Common concerns for children and young people epilepsy care are:

• whilst there is some support in place for epilepsy across our age groups there is still a gap for specialist epilepsy care across SNEE. This leads to out of county support being needed
• there are some specialist epilepsy nurses in place to support children and young people including care planning, but more is needed
• whilst training is offered to families and education settings there are still gaps in how children and young people with epilepsy can be supported effectively through education on the condition and medication
• children and young people with epilepsy are known to have poorer academic attainment which impacts on opportunities and outcomes for those individuals

Diabetes

Children and young people diabetes care in SNEE is characterised by:

• children and young people diabetes health care professionals from across the region have been meeting as an informal network to share education and best practice for the last 16 years, which has demonstrated good joint working
• children and young people diabetes specialists operate out of our three local acute and within community settings supporting families and children and young people
• nine in ten children and young people with diabetes have Type 1. Type 2 diabetes is beginning to rise which can be attributed to an unhealthy diet from a young age coupled with a sedentary lifestyle with no exercise
• families need support with healthy eating and lifestyle. We continue to see increased rates of obese children and young people
• approximately one in three diabetes appointments are not attended by those aged up to 25 years old

Children and Young People Dynamic Support Register

We are required as local health and care services to develop a Dynamic Support Register (DSR) based on sophisticated risk
stratification of the local population in SNEE. Enabling local services to anticipate and meet the needs of those people with learning disabilities and/ or autism who display behaviour that challenges, or who are at risk of developing behaviour that challenges, ensuring local services plan appropriately and provide early interventions, including preventative support. This is important because:

• communication between different services is often uncoordinated and inefficient
• children and young people with a learning disability and/or autism with a co-existing mental health condition and/or who display behaviour that challenges
  • often work with numerous disciplines and organisations with several health/care plans that are not always co-ordinated and can conflict with each other
  • can struggle to engage with services
  • are at risk of being admitted to a specialist mental health hospital far from their home, with poor long-term outcomes
  • Are often referred to the DSR in crisis rather than when behaviours start to become more challenging
• parents/carers of children and young people with a learning disability and/or autism with a co-existing mental health condition and/or who display behaviour that challenges often become overwhelmed and stressed, often struggling to keep well-informed of all the different care plans and services they are working with
• lack of capacity in local mental health services and limited local provision across all services for children and young people with autism means that many children and young people and families/carers feel unsupported, and conditions can escalate into a crisis very quickly

Key working function

The Key Working Function (KWF) delivers on the NHS LTP that committed the NHS to implementing Dame Christine Lenehan’s recommendation in “These are our Children”, that by 2023/24 children and young people with a learning disability and/or autism with the most complex needs will have a designated keyworker. This is important because:

• some families/carers find navigating the system and ensuring their children and young people are accessing all services overwhelming and stressful
• ICBs are not always able to ensure that care treatment recommendations are actioned in a timely way
• children and young people and their families/carers do not always have a voice at the DSR review meetings

Short breaks provision

Short breaks are an essential resource that contributes to the NHS LTP ambition that by March 2023, inpatient provision will have reduced to less than half of 2015 levels (on a like for like basis and considering population growth). For children and young people, no more than 12 to 15 children with a learning disability, autism, or both per million, will be cared for in an inpatient service. This equates to two at any one time in Suffolk.

Short breaks provision in SNEE is characterised by:

• short breaks provide essential support to families who may be feeling overwhelmed caring for their children and young people with a learning disability and/or autism
• short breaks are a good resource that support children and young people with a learning disability and/or autism to lead lives of their choosing in homes not hospitals
• families report that is difficult to access short breaks if their child suffers from a mental health condition
• children and young people and families want more daytime activities and short breaks within the home rather than overnight short breaks
• current short breaks provided by Suffolk County Council are a jointly commissioned offer between SNEE ICB and the council:
  • are only available to children and young people on the council’s disabled children and young people caseload. This means that autistic children and young people without a severe learning disability are not eligible for a funded short break
  • provides very limited evidence of impact on health outcomes for children and young people with a learning disability and/or autism with a co-existing mental health need
  • cannot meet the needs for some children and young people with complex health needs

How we plan to make a difference

Our support for children and young people is focussed around seven key priorities:

• Neurodevelopment Services: children and young people and families have access to a care pathway that facilitates a standardised and improved ways of working across the system to achieve better outcomes
• Mental Health: children and young people and families will have access to excellent mental health and emotional wellbeing supporting everyone to get the right support, at the right time, from the right people, in the right place and in the right way
• SEND: children and young people and families can access appropriate therapeutic support promptly, with identification of need at the earliest possible opportunity
• Asthma: children and young people and families will be more confident in managing their long-term condition and get the correct interventions and support when needed with the hope of their asthma not worsening
• Epilepsy: children and young people and families will have access to epilepsy specialist nurses to support long term conditions. Those with learning disabilities or autism will have access in the first year of care
• Diabetes: children and young people and families will have access to diabetes teams to help manage their long-term condition through childhood and in the transition period to adulthood and related services
• Learning Disability and/or Autism: through a DSR, KWF and Short Breaks Provision – children and young people with a learning disability and/or autism with a co-existing mental health condition and/or who display behaviour that challenges, will not be admitted to a specialist hospital for treatment unless necessary. They will receive support that will enable them and their families to navigate the multidisciplinary system. They will have one holistic plan that meets their needs and all recommendations from their treatment plan will be actioned. Children and young people with complex health needs will have access to good quality, short breaks that meet their needs and support them and their family to sustain and bolster community care and avoid admission to a specialist hospital.

How we plan to make a difference: Neurodevelopment Services

• Development of a long-term plan for implementation by April 2023 that includes committed recurrent funding to address the diagnostic challenges across SNEE, which have resulted from a sustained increase in demand and staffing recruitment and retainment challenges
• Redevelop the Neurodevelopmental Disorders (NDD) pathway with the flexibility to incorporate services to meet newly identified needs e.g., tics and Tourette’s by September 2023
• The NDD pathway will be working effectively, ensuring system challenges are identified and early intervention support is provided for families to “wait well” irrespective of diagnosis by March 2025
• Continued to support the ‘step up’ and ‘step down’ of intervention at the appropriate time without the need for the statutory recourse of an Education Health and Care Plan wherever possible
• By March 2023, NDD oversight groups are the centralised point for all NDD discussions with representation across the system working together to meet the need of children and young people and families
• Through robust analysis of need and co-production, future commissioning intentions effectively address the NDD needs of children and young people and families, achieve agreed outcomes, and reduce future demand
• Develop processes to support the identification of needs within the wider workforce such as schools by March 2025
• Continue to support schools and early years settings so they are empowered and have the confidence to provide support when low level needs are identified via special educational needs coordinators (SENCos) and mental health networks

How we plan to make a difference: Mental Health (including eating disorders)

• Continue to implement across SNEE the new mental health model which focuses on early intervention and prevention, is locality based, integrates physical and mental health and is needs led
• Review services that support our most vulnerable children and young people – those in care and with learning disabilities and autism and implement recommendations accordingly by March 2024
• Continue to deliver system risk and crisis support for children and young people – supporting admission prevention, Care, Education and Treatment Reviews (CETRs), assertive outreach approaches, co-ordinated support for children and young people in acutes and consistent wrap around support via the VCSE and care sector organisations
• Continue to support and drive the investment and transformation of eating disorder services to deliver the waiting time standard and to maintain delivery of the 95% standard.
• Develop an intensive home treatment support model to prevent avoidable admissions and implement a new avoidant/restrictive food intake disorder (ARFID) pathway by March 2024
• Fully implement and monitor the new crisis risk support service and ensure pathways into all areas of crisis are fully accessible and supporting children and young people effectively
• Continue to develop the Coordinated, Help and Risk Intervention Service (CHRIS) to ensure children and young people are cared for closer to home and avoid admissions to hospital.
• Continue to work closely with all our schools and colleges to embed mental health and wellbeing support including the ongoing roll out of the Mental Health Schools Team (MHST) programme to meet 50% coverage across SNEE, with ambitions to have this type of support across all schools
• Develop stronger working relationships with the VCSE and make best use of their skills, experience and knowledge supporting children and young people
• Develop a more robust mental health collaborative framework across all partners supporting children and young people to ensure joined up strategy and decision making, commissioning, best practice, outcome, and performance management
• Continue to embed Thrive principles across all services supporting children and young people with mental health and emotional wellbeing needs on an ongoing basis
• Embed trauma informed practice across children and young people service areas
• Have an established DSR which identifies children and young people with a learning disability and/or autism at risk of admission and brings together system partners to engage support early and work together to support families
• Fully embed the KWF to support children and young people with a learning disability and/or autism and their families who are at risk of admission to a Tier 4 setting or in other vulnerable groups by September 2023
• Ensure our KWF is working effectively and embedded within the system to support children and young people with a learning disability and/or autism and their families who are at risk of admission to a Tier 4 setting or in other vulnerable groups
• Improve support for young people during a mental health crisis, 24 hours a day, 7 days a week. These will include specialist care at EDs, alternatives to hospital admissions, such as crisis and liaison teams and a single point of access to support through NHS 111 and intensive home/community treatment and places of safety

How we plan to make a difference: SEND

• We will implement a different approach for improving the commissioning and delivery of children and young people therapy services and benefits from an integrated approach to supporting children and young people at different levels (universal, targeted, specialist)
• Through effective monitoring and reporting via our three Alliances we will support and challenge the system to take responsibility to improve experiences for families and the achievement of positive outcomes for children and young people
• We will contribute to and influence localised SEND strategic and operational groups supporting the ‘step up’ and ‘step down’ of intervention at the appropriate time without the need for the statutory recourse of an Education Health and Care Plan  We will ensure that families who are waiting for a diagnosis “Wait Well”, ensuring they are communicated with, are informed of timescales, and offered support if required
• We will work alongside Family Forums to reverse the creation of dependency for individuals and families, empowering them and system partners with the skills, knowledge and understanding to lead fulfilling lives
• We will utilise public health data and PHM data to identify areas of need /development and provide targeted support where necessary to improve experiences and equity of outcomes for children and young people
• We will link into local networks to identify emerging needs within the wider workforce e.g., schools and early years settings
• Contribute to a system wide approach that avoids unnecessary costs and achieve better financial sustainability through placebased collaboration

How we plan to make a difference: Asthma

• Establish a dedicated children and young people Asthma Clinical Network across SNEE, led by newly recruited Asthma Clinical Lead by March 2023 and ensure this network supports the delivery of the programme
• Develop an education package to support managing asthma and supporting those with language barriers and our most deprived families who are not able to access support and struggle to engage with professionals
• Enable and support relevant staff in completing up to date asthma training. This can be monitored via workforce and training plans
• Develop several community spaces and routes to engage with a wider range of families and children and young people to share education and create networks for families. This would be supported by VCSE, churches, and the local system
• Use local data and information to target children and young people with severe asthma with specific interventions and action plans by December 2023

How we plan to make a difference: Epilepsy

• Redevelop and ensure pathways for epilepsy will meet all children and young people’s needs to ensure that all newly diagnosed or those with rescue medication have care plans and training from epilepsy nurse specialists
• Improve understanding and information/resources for children and young people and families about epilepsy and make this offer consistent and understood  Improve resources and training for schools to ensure children and young people can be supported effectively though better understanding and medication needs
• mprove understanding within education to support children and young people with epilepsy to continue to thrive and achieve in their attainment
• Implement the NHSE bundle of support and make best use of any pilot funding

How we plan to make a difference: Diabetes

• We will demonstrate high quality treatment and care for children with diabetes by providing early interventions to help children manage their condition and for those with type 2 avoiding the need for more invasive treatment in the future
• We will provide tailored support for young people to maintain their health and wellbeing through their transition to adult services. Using PHM data to identify variations in services, and groups and communities who need targeted support
• We will work with our young people to co-design future services and particularly focusing on engaging those who are frequent nonattenders to understand their needs and issues. Seeing a drop in those who do not attend appointments will showcase the different this work makes over the next 6 to 12 months
• Build on already established partnership working across our ICS to join up children and young people diabetes colleagues – we will see this through joint meetings and working groups that are represented by key professionals
• Monitor engagement on developing technological support to those with diabetes. We will present options on technological options to the ICS and potential options for funding/support for SNEE
• We will include children and young people diabetes as part of the portfolio of a new dedicated children and young people Clinical Lead so that appropriate support and priority can be given to this area
• We will work with Ipswich Hospital who have been awarded funding for a transition pilot from NHSE to understand learning to share across the SNEE system to drive improvement
• We will encourage and support relevant staff to complete up to date training
• We will work with public health and the VCSE to work with families to support obesity and healthy living with their children and young people as a preventative measure

How we plan to make a difference: Children and Young People DSR

• Maintain a risk stratified register of all children and young people with a learning disability and/or autism with a co-existing mental health condition and/or who display behaviour that challenges and are at risk of admission into a specialist hospital and meeting regularly (every fortnight) with all providers to discuss progress for the children and young people on the DSR to ensure that:
  • there is a single, person-centred, care and support plan that incorporates a range of other plans, which supports the children and young people and their family so that the risk of admission is deescalated
  • Recommendations from CETRs are being actioned
    
  • Children and young people and their families are receiving all the care, treatment, and education available to them
• Encourage professionals to refer children and young people on to the DSR as soon as they become concerned that admission is a likely outcome for the children and young people
• Through early referral the ICB, social care, education and mental health services will be able to anticipate and meet the needs of this group of children and young people and will be able to plan services appropriately and provide early interventions, including preventative support

How we plan to make a difference: Key Working Function

The KWF will:

• work with children and young people and families to ensure that there is one holistic health/care plan that meets their needs
• support and empower children and young people and their families to navigate the system – develop and sustain effective, positive working relationships with children, parents and/or carers, sitting alongside them during times of crisis
• support children and young people and families to negotiate the system and to access all the support available to them
• represent the voice of children and young people and their family/carers when they are unable to do so themselves
• trouble shoot on behalf of family and the child or young person where required
• ensure there is a coordinated response from all partners when delivering services
• challenge partners when they are not delivering on CETR recommendations
• highlight gaps in services to commissioners
• work with 50% of children and young people up the age of 18 on the DSR red, amber, green (RAG) rated amber or red by the end of Quarter three in 2022/23 and 90% by the end of Quarter four in 2023/24
• work with 50% of children and young people with a learning disability and/or autism who are inpatients in a mental health care setting by the end of quarter three in 2022/23 and 90% by the end of quarter four in 2022/23
• work with vulnerable children and young people with a learning disability and/or autism up to the age of twenty-five. (Green on the DSR)
• work with children and young people identified as Red or Amber on the DSR or are in mental health inpatient care setting up to the age of twenty-five who have a named key worker

How we plan to make a difference: Short Breaks Provision

• From September 2023 the ICB will commission short breaks:
  • separately from Suffolk County Council but that complement the existing offer
  • that are targeted to the needs of children and young people with learning disabilities and/or autism with a co-existing mental health condition or a complex health need
  • that are delivered at home as well as in community settings
  • that support the mental health of children and young people
  • that can evidence a positive impact on the health needs of the children and young people
  • that facilitate children and young people with learning disabilities and autism with a co-existing mental health need to access mainstream short breaks
• SNEE ICB will be working with partners and families to coproduce a service specification and explore commissioning options so that a tender can be launched in the summer with contract/s in place by September 2023
• between April to September 2023 the ICB will work with Suffolk County Council under a new memorandum of understanding to ensure that no children and young people miss out on a short break

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

We will know we are making a difference as we will see: Neurodevelopment Services

• Staff vacancy rates are reduced to 4% by 2024
• Service providers undertake assessments and deliver the appropriate support within agreed timescales
• Services are commissioned and children and young people and families receive the support they need
• Children and young people and families are informed of decisions through clear reasonably timed communication that is appropriate for them
• Families report that they can confidently navigate the NDD system irrelevant of where they access support
• Children and young people and families report that they are happier and see effective change in the support they receive
• A broader range of interventions are available to families to address the gaps in current NDD offer
• The workforce understands the system wide offer supporting families to navigate the system
• Consistent reduction in ASD and ADHD assessment waiting times by September 2024 (18-month recovery plan)
• 95% have completed assessments withing 28 days
• 95% of children and young people in care under 25 commence treatment within 15 weeks of referral
• Increased conversion rates from pathway to ASD assessment by April 2024
• Consistent reduction in children and young people requiring ASD/ADHD assessment by April 2025

We will know we are making a difference as we will see: Mental Health (including eating disorders)

• That we are meeting access and waiting time standards in Eating Disorder Services with 95% seen within one week for urgent and within four weeks for non-urgent
• That we are reducing wait times for assessment and treatment in CAMHS services to meet access and waiting time standards. Four weeks for referral to assessment and 18 weeks for referral to treatment – we expect to see an improvement towards these standards in the next six months and meeting standards by December 2024
• We support children and young people in crisis effectively through our acute hospitals, 111 and psychiatric liaison working towards a 24/7 model
• Children and young people will report through outcome collated information that they are able to access quality support and treatment close to home in localities and that they are at the centre of support – that they have services and provision wrapped around them with fewer handoffs. The locality model will be in place in 2024
• Children and young people with a learning disability and or autism and their families having cohesive support to navigate the system
• Participation and co-production will be part of all new work/projects and pathways
• Children and young people will report that they are able to make decisions about the support they feel will help them to feel better through outcome reporting that will be in place in 2024 across core and VCSE support
• Schools and colleges will report that they feel supported to support their children and young people well through the implementation of MHSTs and Primary Care Mental Health Workers (PMHWs) supporting all schools
• Children and young people and families will tell us they able to access excellent resources and support online through feedback links on webpages and collated through our participation groups
• Professionals will tell us they are confident and have good mental health knowledge and understanding across the system – this will feed through internal surveys
• The VCSE system will tell us they engaged, and we will be able to demonstrate how they work alongside statutory services to support children and young people and families. We will see more VCSE leads working in steering groups and in the alliance structures
• Data will show us there is a reduction in crisis need and admissions over the next 6 to 12 months
• All staff will have access to relevant and effective training for their specific roles in mental health and access to wider learning to support their ability to work with all children and young people across our system. Portal data and feedback will be collated in 2024 to demonstrate this
• We will be able to demonstrate a reduction in crisis need and admissions to Tier 4 settings through system reporting standards

We will know we are making a difference as we will see: SEND

• Data will show us there is a reduction in waiting times for community based paediatric therapies over the next 6 to 12 months
• Families will tell us they are informed of decisions through clear and timely communication delivered in a way appropriate to them
• All parents and carers will tell us they are supported with information and resources to encourage their role as effective primary communicative partners
• Families and young people will tell us they are able to make proactive choices with respect to their child’s needs
• Children with therapeutic needs will tell us that they have their needs identified within appropriate timescales which leads to effective outcomes
• The wider children’s workforce will tell us they feel empowered to make effective decisions and reduce the reliance on clinical input where appropriate

We will know we are making a difference as we will see: Asthma

• Data will show there are less emergency admission to acute services due to asthma
• Data and feedback will show that young people will have regular reviews on their condition, prescriptions, and education
• Parents, families, and schools will tell us that they have built knowledge and feel confident in supporting children and young people with asthma
• Staff across the ICS will work together in a collaborative way around the needs of children and young people, demonstrated through joint planning and treatment plans
• The National Bundle of Care for children and young people Asthma released in 2021 also generated a few deliverables that are reported on bi-monthly to NHSE. These reports help us map our progress and work with regional teams to improve provision

We will know we are making a difference as we will see: Epilepsy

• Children and young people and families will report that there is a clear pathway for support and information/resources are readily available directly via primary care, community paediatricians or via specialist nurses
• Children and young people will report that they have access to a specialist epilepsy nurse or a community paediatrician within first year of care
• Care plans and rescue medication will be in place for all children and young people as part of the package of support
• Training and support will be offered to all families who have a children and young people with epilepsy
• Increased support and understanding within education settings supporting achievement and attainment

We will know we are making a difference as we will see: Diabetes

• High quality treatment and care for children with diabetes is in place and children and young people and families feel supported
• Tailored support for young people to maintain their health and wellbeing through their transition to adult services is factored into care plans
• Children and young people are engaged in co-design of future services and particularly focusing on engaging those who are frequent non-attenders to understand their needs and issues. There will be a drop in DNAs over the next 12 months
• Established partnership working across our ICS to join up children and young people Diabetes colleagues through joint meetings and working groups that are represented by key professionals
• Technological support is developed for those with diabetes
• The Diabetes Transition pilot findings are reviewed and embedded in the ICS approach moving forwards

We will know we are making a difference as we will see: Children and Young People DSR

• Fewer children and young people will be admitted inappropriately into specialist mental health hospitals for treatment. (NHSE Key Performance Indicator (KPI) of two at any one time – based on no more than 12 to 15 children with a learning disability, autism, or both per million, will be cared for in an inpatient service)
• Fewer children and young people will attend EDs in a mental health crisis
• Fewer children and young people on the DSR will be rated as red (at risk of immediate admission) demonstrating that professionals are referring children and young people at the first signs that their behaviour becomes more challenging so as to put the children and young people at risk of admission
• No CETRs undertaken outside of 28 days of admission, demonstrating that the risk of admission has been considered at an earlier stage with plenty of opportunity to avert admission
• No Local Area Emergency Protocols (LAEPs) will take place, demonstrating that the risk of admission has been considered at an earlier stage with plenty of opportunity to avert admission
• Children and young people and their families/carers will tell us that they feel listened to, contained, and supported by services
• Families/carers will tell us they feel:
  • Better informed and more listened to about the care and treatment their children and young people is receiving
  • less stressed and more able to manage the care of their children and young people

We will know we are making a difference as we will see: Key Working Function

Children and young people will report that they:

• feel safe and happy
• feel more listened to informed
• feel involved in their plans, care, and support
• receive timely access to the right personalised support

Families and/or carers will report that they:

• experience a reduction in stress and uncertainty
• experience an increase in stability
• feel listened to informed, and involved
• a reduction in the number of children and young people who escalate into crisis
• the number of children and young people admitted into mental health or specialist learning disability settings is reduced
• the number of Emergency CETRs and LAEPS carried out is reduced
• there will an improvement in the quality of care
• Assessments, care, and support are integrated across education, health, social care and VCSE services
• Transitions are well planned and well managed

We will know we are making a difference as we will see: Short Breaks Provision

Families and carers will report that:

• they can maintain their caring role because of a short break
• they are confident that children and young people are receiving a quality experience that meets the needs of children and young people when on a short break

Children and young people will report that:

• they are enjoying the short break
• they feel well supported when attending a short break
• there will be a reduction in the number of children and young people who escalate into crisis
• the number of children and young people admitted into mental health or specialist learning disability settings is reduced
• the number of emergency CETRs and LAEPS carried out is reduced.

Case Study: Coordinated, Help and Risk Intervention Service

Adam is a 16-year-old male who was referred to the Coordinated, Help and Risk Intervention Service (CHRIS) following several visits to ED. Adam was seen in hospital five times during the same week prior to the CHRIS referral being received. He had tried to end his life by taking tablets, tying a ligature around his neck, and was found by police at the top of a railway bridge where he said he intended to jump.

The formulation indicated that Adam’s crisis could be attributed to him being ‘stuck in the belief that he would only be safe in
hospital, and the only action available to him was to be admitted. CHRIS work was mainly focused in helping Adam to shift from that belief and start to ‘see and accept that he can be better supported in the community.

CHRIS practitioners held consistent professionals’ meetings to ensure that the same messages were being conveyed to Adam – that he would no longer be admitted to hospital and that, as an alternative, his needs would be met by the community. CHRIS offered individual work with Adam (based on acceptance, value-based goals, belonging) and systemic work with the parents and the wider system.

When closing the case, a structured and planned ending was provided to support the change being sustained. Adam spoke of the ending being “sad but good sad” which was massive step forward in his ability to tolerate emotions, something he could not do before. At the time of discharge, Adam had no incidents requiring him to attend Emergency Department (ED) for over a month. He has acquired a gardening job and starting to spend more time with his friends and was starting college in September 2022.