Transition in healthcare

Explore the topics on this page:

What transition means

Changes to be aware of

Family

Transition programmes

Parents and carer support

Learning disabilities and/or autism

SEND

Reasonable adjustments

Consent, confidentiality and finances

Hospital passports

Useful organisations

Information for young people

It is important for young people to be involved in their transition. Young people can read more about transition on our website. Or for a summary version you can download the PDF.

Understanding your transition in healthcare

Transition checklist for young people and parent and carer toolkit

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Where now booklet

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Easy Read Transition Information Photosymbols

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What transition means

Transition is the process of preparing to move on from children's to adult healthcare services. Transition should happen gradually. This can help to give your child and those involved in their care time to get ready to make the move. Families should be supported to prepare for their changing role.

Adolescence can be a challenging time, with extra challenges for those with a long term health condition. Parents can support the transition process by helping the young person to take more responsibility for their healthcare and in developing their independence. Starting this early will mean they are more confident with managing their healthcare in adult services.

Some young people will continue to need the care and support of their parent or carer into adulthood. If you are caring for a young person with a life limiting condition, the move to adult healthcare may be a confusing time with lots of mixed feelings.

Transition should involve you as a parent or carer. It should ensure you are prepared for the changes in your rights as your child reaches adulthood and in how services may be organised and delivered differently.

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Changes to be aware of

Young people with long term conditions may not have seen a General Practitioner (GP) very often or know the team at the GP practice, as care is provided by a paediatrician or specialist paediatric teams.

It is a good idea for the young person to get to know a GP as they approach transition. The GP will help to link the young person with other adult health and social care providers to make sure they are getting the right care.

GP practice teams provide a range of services, and are often involved in long term condition management. A GP can provide confidential care, independently from a parent or carer. Visit the GP practice website to understand how to make an appointment in the future.
Young people may have been supported by their local community children’s nursing team as a child. As they move into adult services, they will no longer receive care from this team.

Adult community nursing teams work differently to children's community teams. They usually provide care to people who are housebound due to ill health. Adult community nursing teams provide episodes of care.

Adult community nursing teams work with GP’s, acute hospitals to support discharges, adult social care and link with voluntary services.
Young people may have had open access to a children’s setting, but as an adult this will change. They will need to access emergency healthcare via A&E or by calling NHS 111.

Call NHS 111 if you urgently need medical help or advice, but it's not a life-threatening situation. You can also call NHS 111 if you're not sure which NHS service you need.

Call 999 if someone is seriously ill or injured and their life is at risk.

Having an emergency care plan in place might be useful. This will ensure the appropriate care in an emergency is received. An emergency might be something like a health condition suddenly getting worse or changing.

An emergency care plan is a way of recording the care and treatment preferences. These plans may be called Recommended Summary Plan for Emergency Care and Treatment (ReSPECT). ReSPECT plans help out-of-hours doctors, ambulance crews and hospital staff to make decisions about a person’s emergency care and treatment. The ReSPECT process is not legally binding but should be used to guide decision making by health professionals responding in an emergency to achieve the best and most personalised care possible.

They are useful to people with complex health needs, are likely to be nearing the end of life, or at risk of sudden deterioration or cardiac arrest. A GP may be able to help create this. Read more about making a ReSPECT plan.

For children and young people under the age of 18, preferences for care may be documented in a Children and Young Person's Advance Care Plan (CYPACP). There are versions with and without ReSPECT. For those aged 18 and over, preferences for care may be documented in a ReSPECT plan or Advance Care Plan (ACP). Children’s services will discuss changing from a CYPACP to an adult ReSPECT plan or ACP with the young person and their parent or carer as part of transition.

Your young person may wish to have a hospital passport. A hospital passport tells the hospital about your young person's needs, healthcare, how they like to communicate and how to make things easier for them. Read more about hospital passports.
The young person will usually be admitted to an adult ward after the age of 16 years.

The ward may feel and look different to a children’s ward. If the young person requires a carer to stay with them whilst in hospital, please talk to the hospital ward staff or transition nurse so this can be arranged.

If the young person has a long term health condition and needs to go into hospital for treatment or care regularly, they can ask to visit the ward they may have to stay on as part of their transition to adult care. They can have a look around and ask the staff questions about their stay.

Things for the young person to think about while in hospital
- Tell staff if they're going out of the ward or unit.
- Listen carefully to information about their treatment and medication.
- Ask staff to explain something to them again if they do not understand.
- Tell the doctor about any treatments they're already receiving or any allergies they have.
- Bring any medication they're currently using with them.
- Treat staff, fellow patients and visitors politely and with respect. Verbal abuse, harassment and physical violence are unacceptable and may lead to prosecution.
- Follow the rules of the ward.
Learning Disability Nurses

Learning disability nurses/advisors are available in hospitals near where you live. They provide support for people with a learning disability and/or autism. Read more about learning disability nurses.

The main carer for a young person or adult can contact the local hospital Carers' Advisor or Accessibility Team for advice during any hospital visit or stay. They can support carers by providing a carers passport.

North West Anglia Hospital - Carers' Advisor
- Call: 01733 673832
- Email: nwangliaft.carersadvisor@nhs.net
Cambridge University Hospital - Accessibility Team
- Call: 01223 256998
- Email: cuh.accessibility@nhs.net
Young people may have been under the Child and Adolescent Mental Health Services (CAMHS).

When they are aged 17 to 25 they will need to access adult mental health services (AMHS). Their CAMHS worker should talk to them about this move 3 to 6 months before it's due to happen. Read more about moving from CAMHS to AMHS.

GPs can make referrals for mental health assessments to the Primary Care Mental Health Service at Cambridgeshire and Peterborough NHS Foundation Trust.

Young people can also self refer to Centre 33.

Mental health crisis

Call NHS 111 and select the First Response Service. This is a 24 hour service for people in a mental health crisis. This service is for anyone, of any age, who is registered with a GP in Cambridgeshire or Peterborough.

Non urgent mental health support

Read our information on behaviour, emotions and mental health. You can also take a look at our information on behaviour, emotions and mental health advice for additional needs.

You can talk to a GP or read more about the helplines available at Mind.
Anyone under the age of 18 (or 19 if in full-time education) is entitled to free dental care. After this time you may need to pay for dental treatment. Read more about who is entitled to free NHS dental treatment in England.

Some dentists may be able to treat people with additional needs in their surgery. Or the dentist should refer the patient to a more specialised dental service. Specialised dental services are commonly provided by community dental services. Read more about dental treatment for people with additional needs.
Young people can talk to their teachers and tutors or employer about their health needs and how they might impact on their ability to access and perform their education, training or employment.

Useful resources:
- Cambridgeshire SEND Information Hub (Local Offer)
- National Deaf Children's Society - provides information and support when considering options for education beyond the age of 16 for those with a hearing impairment.
- Peterborough SEND Information Hub (Local Offer)
- Preparing for Adulthood: All Tools and Resources - National Development Team for Inclusion
- Royal National Institute of Blind People - offers information and transition guides for young people with visual impairments to assist planning for school life and beyond.
- Sense - offers tips to cope with transition for people with a disability and their parents.
At age 18, social care services will usually be provided by adult services. Local authorities must undertake an assessment for anyone who is likely to have needs for adult care and support as an adult.

The young person or someone acting on their behalf, has the right to request an assessment from the local authority. It’s a good idea to contact them before they turn 18 so that there is time to plan for their needs.

Council contact details:

Adult care needs assessment - Cambridgeshire City Council

Tel: 0345 045 52020

Email: careinfo@cambridgeshire.gov.uk

Adult Social Care Assessment and Care and Support Planning - Peterborough City Council

Tel: 01733 7474747

Email: adultsocialcare@peterbrorough.gov.uk
If a young person has complex healthcare needs that cannot be met by other services, they may be eligible, as a child, to receive support form Children's Continuing Care (CCC). The NHS National Children’s Continuing Care Framework, offers guidance on eligibility for young people up to their 18th birthday.

There are differences between children and adults continuing healthcare provision. Although a young person may be in receipt of a package of care, they may not be eligible for continuing healthcare (CHC) or NHS funded nursing care once they turn 18. Eligibility for continuing healthcare (adults) is determined by assessed need and not by the setting in which the package of support can be offered or by any diagnosis.

Read more about NHS continuing healthcare.

Other useful resources include:
- NHS continuing healthcare checklist
- NHS continuing healthcare - Cambridgeshire and Peterborough Integrated Care System
Palliative care is provided to people who have a condition that is likely to shorten their life expectancy. Palliative care can be provided at home, in hospital or in a hospice. Palliative care services help to manage the young person's symptoms, pain, social, emotional and spiritual needs for them and their family. The transition journey may involve moving on from children’s hospice care, or they may choose to have adult hospice care in the future.

Adult hospices and specialist palliative care services provided across Cambridgeshire and Peterborough:
- Sue Ryder Thorpe Hall Hospice - Peterborough
- Arthur Rank Hospice Charity - Cambridge
- Palliative Care Hub - A free phone service available to patients, relatives, friends and all healthcare professionals. Providing specialist advice and support to those with life limiting illnesses. Call 111 and select option 3 to speak to a specialist palliative care nurse who is available for advice, support and signposting to local services.
- Cambridgeshire County Council - End of life care
- Hospice UK - The national charity for hospice and end of life care. Providing information for professionals, patients and their family.
There is lots of information to support the young person's health and wellbeing as they move into adulthood. There is also support for parents and carers.
- Read our information on behaviour, emotions and mental health.
- Read our information on behaviour, emotions and mental health for additional needs.
- Bereavement - Mind
- CAMHS resources - Provides resources to help support mental health and wellbeing for young people, carers and professionals.
- Every Mind Matters - Information and resources about self-care and mental health.
- Get Support - Together for Short Lives - Provides a wide range of information, a helpline, live chat service and a Facebook support group.
- Let's talk about sex, intimacy and relationships - The Open University
- Spiritual, Religious and Cultural Wishes Factsheet - Together for Short Lives - Supports families in their discussions with professionals about meeting spiritual needs at end of life.
- Teen Sleep Hub - Provides information and advice for parents of teenagers and young people that are struggling to achieve a good night's sleep.
- YoungMinds - Offers free online and telephone support to anyone worried about the emotional and mental wellbeing of a child or young person up to the age of 25.

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Family

You and your young person may have questions about how their condition might affect adult life, like career choices, benefits, relationships or family planning. It is a good idea to discuss these with their healthcare team, who can provide information about other organisations that can help.

- Learning the names of the medicines, why they are needed, how much to take and how often.
- Seeing their doctor or nurse on your own, for part of clinic appointments or consultations.
- Your young person staying overnight in hospital without you sometimes.
- Keeping track of hospital appointments.
When talking to healthcare professionals and making choices about your young persons' healthcare you could ask 3 questions to help you think about any decisions you need to make.

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Transition programmes

There are 2 frameworks we use in the Children's Community Specialist Nursing Service. These can help support the young person and their family to gain the knowledge and skills to manage their health conditions into adulthood. Read more information on the commonly used programmes below:

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Parents and carer support

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Learning disabilities and/or autism

People with learning disabilities often have poorer physical and mental health than other people. This doesn’t need to be the case. Anyone aged 14 and over with a learning disability can have a health check every year with their GP surgery. A yearly health check helps them to stay healthy and provides an opportunity to talk to a professional about their health. If there are any problems they will make sure the right care is provided.

Your young person does not need to be unwell to have a health check. At the appointment the doctor or nurse will talk about staying well and offer support if needed. Read more about annual health checks.

If your young person is worried about seeing a doctor, or there's something they can do to make the appointment easier, they should let the healthcare centre know.
Mencap offer information on joining the Learning Disability Register in order to get more support from a GP. Read more about the Learning Disability Register.

NHS England have produced a leaflet to help people think about whether their child or someone they care for could be considered to have a learning disability and should be on their local GP practice’s Learning Disability Register, to help them get the help they need. Find out more about the Learning Disability Register.

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SEND

When a young person with a disability reaches 18 years old, the responsibility for providing their social care support transfers from children to adult social care and health services. The services provided may change. This could mean that they are no longer eligible for the same services, or that different services may be more suitable.

A transition plan into adulthood should be made before the young person's 18th birthday to reflect all their needs for education, training, leisure, employment, health, wellbeing and social care. The plan is to enable young people to live as independently as possible.

For more information please contact your local Adult Social Care Team:

Cambridgeshire Adult Social Care

Peterborough Adult Social Care

SEND Information Hubs provide children and young people with special educational needs or disabilities (SEND) and their families with information about support and services in their local area including:
- early years and childcare
- easy read information
- education
- getting help
- getting involved
- getting out and about
- health
- impartial advice and support
- money and benefits
- preparing for adulthood
- social care, early help and targeted support
SEND Information Hub (Local Offer) - Cambridgeshire

SEND Information Hub (Local Offer) - Peterborough

Reasonable adjustments

The NHS has to make it as easy for people with disabilities to use health services as it is for people who are not disabled. Making reasonable adjustments means ensuring people with disabilities have equal access to good quality healthcare. Ask a GP to add a reasonable adjustments flag to the young person's summary care record. Read more about sharing information about support needs.

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This information may be useful in helping young people understand the changes they might experience as part of adolescence. It can support them to be as independent as they would like.

Decision making and mental capacity

Children under the age of 16 can consent to their own treatment if they're believed to have enough intelligence, competence and understanding to fully appreciate what's involved in their treatment. This is known as being Gillick competent. Otherwise, someone with parental responsibility can consent for them in some circumstances.

We encourage young people to become as independent with their healthcare as they can be. Young people aged 16 or 17 are presumed to have the capacity to make decisions about their own medical treatment, and are entitled to consent, or dissent, to their own treatment, where they have the capacity to do so.

Read more about what the Mental Capacity Act 2005 means for you and your family.

The ability to understand and make a decision when it needs to be made is called ‘mental capacity’. The Mental Capacity Act (MCA, 2005) applies to everyone over the age of 16.

If someone is assessed to lack the capacity to make a decision on their own, then parents, carers and healthcare staff would be involved in a discussion to make a decision about their healthcare on their behalf.

Parents cannot give consent for young people aged 18 years or over, even if they cannot consent for themselves. However, decisions about care and treatment will be made involving parents, carers and professionals. These decisions are called ‘Best Interest’ decisions.

If someone’s liberty is deprived in order to enable care or treatment, the Deprivation of Liberty Safeguards (DoLS) will put the young person's rights and wishes at the centre of all decision making. Depriving someone’s liberty means taking away the free choice of a person to move about as he or she wants.

A lasting power of attorney (LPA) is a legal document that allows a young person to appoint 1 or more people to help them make decisions or to make decisions on their behalf, after they are 18, about their health and welfare.

Useful resources:
Young people and adults have the right to confidentiality. This means keeping information about them private.

If a young person is unsure or feeling worried, they can ask the person they're speaking to. They can tell the young person about the rules they have to follow, and what will happen with the information the young person gives them.

A young person can give permission or consent for information to be shared. Information can be shared if they ask someone to share it. For example, they can ask their doctor or teacher to share what they've told them with their parents, carers or guardians.

Or, if the young person agrees to their information in their records being shared with another service, this means they can be referred to other services for treatment or support. So if they see a different healthcare professional, they will know how to support the young person.

Healthcare professionals need to make sure everyone is safe. This means they might have to share information about the young person to help keep them safe.

We will only share information if it has to be shared. We might share information if we believe that the young person is a danger to themselves or someone else. This might mean telling their family, school or someone else.

Read more about Youth Rights in Healthcare.
Below are some resources about finances and benefits, that may make a young person feel more prepared for any upcoming changes they may face.
Grants and other funds may be available to the young person. Check with each charity to see if eligible. Some examples include:

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Hospital passports

A hospital passport tells the hospital about your young person's needs, healthcare, how they like to communicate and how to make things easier for them. Read more about:

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Cambridgeshire and Peterborough

Cambridgeshire

Peterborough

Transition in healthcare

Explore the topics on this page:

Information for young people

What transition means

Changes to be aware of

Family

Transition programmes

Parents and carer support

Learning disabilities and/or autism

SEND

Reasonable adjustments

Hospital passports

Need more information?

Who can help

Have your say

You must log in to save content

You must log in to save content

Transition in healthcare

Explore the topics on this page:

Information for young people

What transition means

Changes to be aware of

GP

Community Nursing Care

Emergency care

Hospital Care

Mental health

Dental

Prescriptions

Education, training and employment

Social care

Continuing healthcare

Hospices and palliative care

Emotional, psychological and spiritual wellbeing

Family

Topics that parents or carers could think about and discuss

Transition programmes

Parents and carer support

Local parent and carer support

What if something happens to a parent or carer

Learning disabilities and/or autism

Annual health check scheme

Learning disabilities register

Learning disability liaison nurses

Learning Disability Partnership (LDP)

SEND

Local Offer

Reasonable adjustments

Consent, confidentiality and finances

Independence, decision making and consent

Confidentiality

Finances and benefits

Hospital passports

Useful organisations

Need more information?

Who can help

Have your say

You must log in to save content

You must log in to save content