Understanding your transition in healthcare

Young people with a long term health condition will need to move from paediatric to adult services at some point. There can be a lot to think about when moving from children to adult services. Lots of different people may be involved in your care.

Adult healthcare can sometimes work differently to children’s services. Finding out about the changes will help you manage your healthcare well in the future.

You will be expected to take more responsibility for your own healthcare. We can help by providing information and offering support with this.

We understand that there is more to you than just your health condition. Becoming an adult is a challenging time, with lots of changes physically, emotionally, and socially. The aim of transition is to empower and support you through this.

If you need support from other people to manage your health needs, we will offer help to you and your parent or carer to manage this move.

There is no exact time that is right for everyone.

We will offer a discussion about transition from age 13 onwards. If you have an Education Health and Care Plan (EHCP), transition planning should start in Year 9.

It is usual for you to move to most adult healthcare teams between the age of 16 to 18. This will depend on the team that has been looking after you and the one you will move to, alongside when it's right for you.

If you are under the care of a community paediatrician and in special education, they will provide care to you until you reach 19 years old or leave school. The care will then be transferred to a GP and any other specialist services that are needed.

If you need to be admitted to hospital,  once you turn 16 you will usually be admitted onto an adult ward. You can talk to your healthcare team for support if you have any worries.

How it happens is based on your needs. We can help to think about things that might be important to you, and help plan what information you need and when. We can also tell you about other services and provide information and advice.

You will be included as much as possible in your transition. If your parent or carer is needed to help with decisions or to act on your behalf, we will work with you to make sure what you want is kept at the centre of the transition plan.

Specialist healthcare teams in hospital or the community may oversee the transition into adult healthcare, but we can support the process in the community.

The nursing team will offer to have a meeting to chat with you about your transition. We can offer these at home, school or in one of our community settings, wherever you feel most comfortable.

There are 2 frameworks we use to help support the transition in the Children's Community Specialist Nursing Service. They help you and your family gain the knowledge and skills to manage the condition into adulthood. Read more information on commonly used programmes below:

• Ready, Steady, Go
• A checklist to a good transition - Together for Short Lives

When talking to healthcare professionals and making choices about your healthcare, you could ask 3 questions to help you think about any decisions you need to make. Other questions you can ask include:

• What is the plan for my transition?
• When am I moving to adult services?
• Can I choose which adult service I move to? 
• Can I meet the adult staff before I leave children’s services?
• Can I look around the adult service before I transfer?
• What is different about the adult service? 
• What do I need to know before I move to the adult service?
• How might my condition affect my future, such as my education and employment?

Paediatric Services

• Your parent or carer will answer questions about you.

Adult Services

• Healthcare staff will ask you questions.
• You are expected to know about your health and any medical issues or treatments.

Helpful tips

• If you are unsure about your health, condition or treatment you shouldn't be afraid to ask.
• Write any questions down.
• Be confident and honest.

Paediatric Services

• Your parent or carer will book appointments for you.

Adult Services

• You can book your own appointments.

Helpful tips

• Book appointments well in advance. 
• Rearrange any appointments that can no longer be made.

Paediatric Services

• Your parent or carer may take you to appointments.

Adult Services

• You may need to travel on your own.

Helpful tips

• Allow plenty of time to get to the appointment.

Paediatric Services

• Your parent or carer will usually be present for the appointment.

Adult Services

• You can choose to be seen on your own.

Helpful tips

• It's your choice whether to be seen on your own, or if you want your parent present. You can speak to the healthcare team about this.

Paediatric Services

• Your parent or carer is told about your health information.

Adult Services

• Your health information and medical records are private (confidential). They can’t be shared unless you give permission. 

Helpful tips

• It’s a good idea to keep a parent or carer informed, but you have the right to confidential care.

Paediatric Services

• Your parent or carer may arrange things such as medications, consumables, and servicing of equipment.

Adult Services

• You will be expected to manage your healthcare and take responsibility for your own medical supplies.

Helpful tips

• It's important for you to strive to be independent. But you can also keep your parent or carer informed to a level that you are comfortable with.

Paediatric Services

• Doctors give information and use language that you can understand.

Adult Services

• Adult services may use language that you may not understand or have heard before.
• A different doctor may be seen each time.

Helpful tips

If something a doctor says doesn't make sense, ask them to explain it. Some questions that you can ask include:

• What are my choices?
• What is good and bad about each choice?
• How can I get support to help me make a decision that is right for me?

Be clear about how they can help.

Paediatric Services

• Your parent or carer can make decisions about your healthcare and treatments. 

Adult Services

• You can legally make decisions about your own healthcare and treatments.

Helpful tips

• Talk to the healthcare team to find out what options you have, and let them know if you need support in making any decisions. 

Paediatric Services

• You don't have to pay for medications if you are under 16 or are aged 16 to 18 and in full-time education.

Adult Services

• You will need to pay for prescriptions, unless you are eligible for free prescriptions.

Helpful tips

• Check to see if you can get free prescriptions.

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 you to get to know a GP as you approach transition. The GP will help to link you with other adult health and social care providers to make sure you 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 for yourself in the future.

You may have been supported by your local community children’s nursing team as a child. As you move into adult services, you 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.

You may have had open access to a children’s setting, but as an adult this will change.  You 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 that you receive the appropriate care in an emergency. An emergency might be something like your health condition suddenly getting worse or changing.

An emergency care plan is a way of recording your 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. Your GP may be able to help with creating this with you. 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 you and your 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.

You 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 you require a carer to stay with you whilst in hospital, please talk to the hospital ward staff or transition nurse so this can be arranged.

If you have a long term health condition and need to go into hospital for treatment or care regularly, you can ask to visit the ward you may have to stay on as part of your transition to adult care. You can have a look around and ask the staff questions about your stay.

Things for you to think about while in hospital

• Tell staff if you're going out of the ward or unit.
• Listen carefully to information about your treatment and medication.
• Ask staff to explain something to you again if you do not understand.
• Tell the doctor about any treatments you're already receiving or any allergies you have.
• Bring any medication you're currently using with you.
• 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 

You may have been under the Child and Adolescent Mental Health Services (CAMHS).

When you are aged 17 to 25 you will need to access adult mental health services (AMHS).Your CAMHS worker should talk to you 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 your 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.

Prescriptions will be free until you become 16 (or 18 if you are in full-time education). If you receive Universal Credit, you will have this up to the age of 20. 

Free prescriptions are available as an adult if you have certain health conditions or circumstances. Check what help you could get to pay for NHS costs.

You can talk to your teachers and tutors or employer about your health needs and how they might impact on your ability to access and perform your 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 after 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.

You or someone acting on your behalf, has the right to request an assessment from the local authority. It’s a good idea to contact them before you turn 18 so that there is time to plan for your 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 you have complex healthcare needs that cannot be met by other services, you 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 you to manage your symptoms, pain, social, emotional and spiritual needs for you and your family. The transition journey may involve moving on from children’s hospice care, or you 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 your health and wellbeing as you 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.

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• 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.

This information may be useful in helping you understand the changes you might experience as part of adolescence. It can support you to be as independent as you 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.

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 lets you appoint 1 or more people to help you make decisions or to make decisions on your behalf, after you are 18, about your health and welfare.

Useful resources:

• Children and young people - consent to treatment - NHS
• Make, register or end a lasting power of attorney - GOV.UK
• Mental capacity and planning for the future - Cambridgeshire County Council
• People making decisions for you PDF - Department of Health
• The Mental Capacity Act - Mencap

Young people and adults have the right to confidentiality. This means keeping information about you private.

If you are unsure or feeling worried, you can ask the person you're speaking to. They can tell you about the rules they have to follow, and what will happen with the information that you give them.

You can give permission or consent for information to be shared. Information can be shared if you ask someone to share it. For example, you can ask your doctor or teacher to share what you've told them with your parents, carers or guardians.

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

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

We will only share information if it has to be shared. We might share information if we believe that you are a danger to yourself or someone else. This might mean telling your family, school or someone else.

Read more about Youth Rights in Healthcare.

Below are some resources about finances and benefits, that may make you feel more prepared for any upcoming changes you may face. 

• Apply for or renew a Blue Badge - GOV.UK
• Benefits and finances - Marie Curie
• Check what help you could get to pay for NHS costs - NHS
• Getting a Motability car - Citizens Advice
• Personal Independence Payment - Citizens Advice

Grants and other funds may be available to you. Check with each charity to see if you are eligible. Some examples include:

• Disability Grants
• Grants and loans - Macmillan Cancer Support
• Grants and wishes - Together for Short Lives

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

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 you to stay healthy and provides an opportunity to talk to a professional about your health. If there are any problems they will make sure the right care is provided.

You do not have 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 you are worried about seeing a doctor, or there's something they can do to make the appointment easier, you can 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.

A learning disability nurse understands the needs of people who have a learning disability and/or autism. They also understand how hospitals work. They can work with the hospital to help get the care, treatment and tests that you need in a way that is helpful to you. Read more about learning disability nurses in hospitals near Cambridgeshire.

The Learning Disability Partnership can help and support people who have a learning disability diagnosis. They can also provide social care support if a higher level of help is needed. Read more about about the Learning Disability Partnership.