Welcome to the Transition to Adulthood Toolkit for supporting young people with life-limiting illness for Herefordshire and Worcestershire. Here you will find a collection of resources and information to support the transition of young people with life-threatening or life-limiting conditions from children's services to adult services. (Please note that we cannot be held responsible for the content of third-party links).
If you are a young person, parent, carer or partner, you are welcome to explore all sections of this website, but please be aware that some of the content is designed for professionals; you may wish to discuss what you find with one of your care team, for example your GP, district nurse, specialist nurse or care provider.
Herefordshire and Worcestershire Integrated Care Board (HWICB) successfully bid for NHS England funding to ascertain the needs and aspirations of young people who have palliative or end of life conditions (PEOL), and their families as they transition from children’s to adult’s services and to improve their experience of transition.
A local needs assessment indicates that numbers of young people aged 14-25 (transition age) in Herefordshire and Worcestershire are very small but, owing to medical advances, they are growing, and this group of young people are surviving into adulthood with increasingly complex needs often requiring the involvement of multiple health teams and agencies and therefore transition itself is complex.
Collaboration with partners in Health, Social Care and Hospices highlighted an ad hoc approach to transition and limited contact with adult services prior to transitioning at 18 years of age. A YP may have multiple transitions occurring at different ages (e.g., financial transition at 16, transition from paediatric ward to adult A+E at 17, transition to adult team/district nursing at 18, educational transition at 19 but these are not definitive ages and so transition is often complex and requires a personalised approach.
Engagement with young people and their families highlighted a fear of transition and a nervousness about leaving familiar children’s services where they had built relationships over many years and moving to unknown services where it may be unclear whether/how all their current needs will be met. Young people don’t feel listened to when transition is being planned; they want to be communicated with and involved as early as possible. They want to be treated with respect, to be listened to and their feelings understood. Young people want to be involved in decision making about their care in hospital/at home and want to be in control of their life.
Families want the process of transition to be clear, they want to understand what adult services can offer and when they will move to these services and who to contact; they believe that having a single key person to support them through the transition journey; to speak with about their concerns is the best way to support them through the complex transition journey.
The project bid was divided into two phases, phase one has involved a local needs assessment and development of a bespoke digital Transition Toolkit to provide resources that can support young people, their families and providers of services through the transition journey. Phase 2 forms part of a bid for further funding to build upon the foundations of Phase 1. This will include mapping the service provision for young people with PEOLC needs across H&W (which was determined out of scope for Phase 1) and the development of a recognised pathway for transition.
The key findings from the local needs assessment and more information have been compiled in a project report, along with the other research conducted to create the transition toolkit.
The digital toolkit contains content that was coproduced with the young people, families and health and care professionals from across the two counties that are using our services. Interviews were conducted to gain insight on the experience of transition along with regular steering groups to review the toolkit and develop 7 principles of transition. Based upon feedback, the toolkit was divided into 3 main sections, with resources specifically selected for; health and care professionals, young people; and family, carers and loved ones.
Advocate: Someone who can support you by advocating on you or your child’s behalf to improve quality of life. Your Local Authority should be able to tell you what advocacy services are available in your area. This information should also be available on your Local Offer website.
CAMHS: Child and Adolescent Mental Health Service. CAMHS are NHS services delivered locally that assess and treat children and young people with mental health difficulties.
CCC: Children’s Continuing Care. A package of care for children and young people under the age of 18 who have very complex health needs, which may be the result of congenital conditions, long-term or life limiting or life-threatening conditions, disability, or the after-effects of serious illness or injury.
CCN: Children’s Community Nurse - a paediatric nurse who supports children at home.
Commissioning – You may hear this term in conversations about funding. The NHS defines commissioning as: “the process of assessing needs, planning and prioritising, purchasing and monitoring health services, to get the best health outcomes”. Commissioning is essentially the buying of services and equipment to make sure people’s health needs are met.
Community health care – A term used to describe health care that does not take place in a hospital, including care at home. The team of professionals who provide care to children whilst they are at home are sometimes referred to as the community team.
CHC – Continuing Healthcare (for adults). A package of ongoing care for adults that is arranged and funded by the NHS. A Continuing Healthcare package may be given if an individual over the age of 18 has been assessed and found to have a ‘primary health need’ as set out in this National Framework. Such care is provided to meet health and social care needs that have arisen as a result of disability, accident or illness.
CYP – Children and Young People, or Child or Young Person. Sometimes used by professionals instead of the terms “child” or “young person” to describe people under the age of 18.
CYPCC – Children and Young People’s Continuing Care– In England and Wales, children and young people may be eligible for a Continuing Care package “if they have needs arising from disability, accident or illness that cannot be met by existing universal or specialist services alone”. More information is available on the NHS website here >>
EHCP or EHC Plan – Education, Health and Care Plan. This is a legal document that describes a plan agreed by you, your Local Authority, and clinical commissioning group. Your child’s EHCP will allow them to access education. You must ask your Local Authority to carry out an assessment if you think your child needs an EHC plan. The plan contains a description of your child’s education, health and social care needs. It also describes what should be put in place by the Local Authority to make sure your child’s needs are met and they can achieve as much as they can.
End of Life – End of Life care is support for people who are in the last months or years of their life. End of Life care should help them to live as well as possible until they die and to die with dignity.
ICB: Integrated Care Board (formerly know as a Clinical Commissioning Group or CCG): your local ICB is led by clinicians and assesses the health needs of the local population, decides which services to prioritise for funding, and then buys services which are provided by clinics, hospitals and other healthcare providers.
LA – Local Authority – This refers to your local council. They look after social care and education, and you will be in contact with them about your child’s EHCP.
LD – Learning Disabilities.
Life-limiting condition – This phrase is often used to describe conditions for which there is no cure.
Life-threatening condition – This phrase describes conditions for which there are treatments, but there is a chance that the treatments will not work.
Local Offer – Your Local Authority must make a list of services available to children with special educational needs and disabilities in your local area. This is called the Local Offer. Local Offers are usually available on your Local Authority’s website.
MCA – Mental Capacity Act. A law passed in 2005 designed to protect and empower people who may lack the mental capacity to make their own decisions. This might include people who have a severe learning disability, a mental health illness or a brain injury. The act applies to people aged 16 or over. When you child reaches 16, they may receive a Mental Capacity Assessment. For more information about the Mental Capacity Act, visit the NHS website >>
Paediatrician – A doctor who is a specialist in children’s medicine.
Palliative care – Palliative care means providing the best possible quality of life and care for children and young people with a life limiting or life-threatening condition. Palliative care may focus on making sure children can spend more time at home, pain management, emotional support, or a combination of all of these.
PALS – Patient Advice and Liaison Service. Each NHS trust will have a related PALS, which offers confidential advice, support and information on health-related matters. PALS can help you resolve concerns you might have about your child’s care, or provide you with information about the NHS complaints procedure.
PHB – Personal Health Budget. In some areas of the UK, your ICB may offer you a personal health budget. This budget is paid in direct payments to you, which you use to hire carers for your child as they are living at home.
SEN –Special Educational Needs. Sometimes this is expanded to Special Educational Needs and Disability: SEND. This term is used in Education and sometimes by healthcare professionals to describe a child whose needs affect their ability to learn or otherwise access education.
SENCO – Special Educational Needs Coordinator. Every school will have a teacher who acts as the SENCO. The SENCO is responsible for ensuring that students with special educational needs are able to get the support they need at school.
Social worker – Usually employed by your Local Authority, social workers will talk to you about the needs of your family and can support families through difficult times. A social worker will carry out a needs assessment and help your family access social care services provided by the Local Authority, including short break services and care at home.