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For young people with special educational needs or disabilities (SEND), planning for adulthood begins in Year 9 (the school year in which a child has their 14th birthday), and in some cases will continue until their 25th birthday.  We often call this phase in life 'transition' or a 'transition to adulthood'.

This phase of “preparing for adulthood” is when professionals will consult with you and your son or daughter to consider if they may need specialist support during transition and into adulthood. 

Where to go for healthcare help

Your pharmacist, GP, or NHS 111 can help you get treatment quickly.

You can find out more on the NHS website or on the link at the bottom of the main Health page.

Services by age group

0 -16 years

Children aged 0-16 will access children’s services, usually through their GP, health visitor or paediatrician, and usually led by their parent carer or guardian. 

14 years plus

If you are aged 14 years or over, you and have a learning disability you are entitled to a free learning disabilities annual health check from your GP (link to the page)

16 years plus

If you are aged 16+ years old and up, then you will start to access some adults’ services and take the lead in making decisions about your health. If you are under 18 with a learning disability, then you will still be able to access children’s services, but will also have more of a say about your care. You are also entitled to a learning disabilities annual health check (link to the page).

18 years plus

If you are 18 + you will access adult health services.  

The changing role of the parent carer or guardian

A parent carer or guardians role changes as children take legal responsibility for their health, but many will still need help and support to do so. The Preparation for Adulthood Parent’s Guide has lots of information to help support those who have a child aged 14 years plus.

GP Services

As an adult most of your health services will be accessed through your GP. 

Things to think about:

  • Do you know the telephone number and email address of your local health surgery? 
  • Do you know how to make an appointment? 
  • Did you know some surgeries can make online appointments and you do not have to phone? 
  • Do you know the range of health services available at your surgery?

You may need help to make the appointments with health services and may also need support to get to your appointments.  

  • Who would you ask for help? 
  • As you move into adulthood it is important to have a circle of support? 
  • Which people are in your circle of support? 
Moving to adult health services

Hospital care for young people with a learning disability. Moving from children’s services to adult services

The information in this guide is for people who will soon be adults. This guide will help young people with a learning disability to understand more about moving from children’s services to adult services. 

You can find the details in an Easy read document Hospital care for young people with a learning disability.  The document is produced by Mencap.

Learning disability annual health check

What is an Annual Health Check?

The Annual Health Check scheme is a free, yearly appointment with your doctor (GP) or Practice Nurse, usually near to where you live. In this appointment your doctor or nurse will ask you questions about how you keep yourself well and whether you need any extra help with this. With your consent they will also check your physical health such as your weight, heart rate and blood pressure. They may ask for a urine sample or a blood test and will also look at any medication that you take to make sure that this is still right for you.

The Annual Health Check is a really good time to ask your GP or nurse any questions or worries that you may have about your health.

Who can have one?

Anyone aged 14 and over who has a learning disability is entitled to have an Annual Health Check. You must be on your GP’s ‘Learning Disability Register’ to get an invite through the post. You can check with your GP if your name is on the register and ask to be added if your name is not on there already.

Why do I need an Annual Health Check?

It is important as you are growing up to stay well and look after yourself and be healthy.

Sometimes children and adults who have a learning disability have poorer physical and mental health than other people, but this shouldn’t always be the case.

Most health problems are simple to treat once you know about them. Your GP can help stop you getting a serious health condition. This is better than waiting until you're ill. Most people have their health check when they are feeling well.

The doctor or nurse can help you to plan how to keep being healthy and can give you information and advice about different things such as diet and exercise.

What if I already see another doctor or nurse who is not at my GP Practice?

You may see other doctors and nurses who help you to stay well, such as at the hospital or in different health clinics. When you are under 18 you may see a Paediatrician (children’s doctor) or another specialist team.

Annual Health Checks are different from appointments at the hospital or other health clinics. They are offered from when you are 14 to help you to get to know your local GP as you are growing up. They help you get used to seeing someone each year to support you to stay well as you become an adult. 

Your parents or carers can go to the Annual Health Check with you especially if you are feeling worried or anxious about going to the doctors.

Do I have to have an Annual Health Check?

No, the Annual Health Check is voluntary so you can choose whether or not to have one.

More information about Annual Health Checks can be found on NHS Choices.

Why annual health checks are so important for people with a learning disability.  Information from Mencap.

alth Check is voluntary so you can choose whether or not to have one.

Self advocacy/helpful information

Sometimes people with a learning disability or autism are given medicines they may not need.

This is sometimes called STOMP (Stopping the over medication of people with a learning disability, autism or both)

Here is an Easy Read version explaining what STOMP is.

Helpful resources for preparing for a hospital stay

The SpeakOut Council: VoiceAbility | Speak Out Cambridgeshire held a consultation called: Important issues for young people; many people with learning disabilities and/or autism did not knowing about hospital passports, or the role of Learning Disability Nurses and how hospitals can make reasonable adjustments to support people well in healthcare settings. Young people did not always know where to get support. You can see VoiceAbility/SpeakOut also have useful pages on: Support me when I am at hospital: VoiceAbility | Support if you're in hospital how to complain about NHS Care; VoiceAbility | How to complain about NHS care; how to stop over-medicating: VoiceAbility | How to stop over-medication.

Mencap have also produced some helpful resources as part of Treat me Well Health Campaign.

Preparing your child for hospital stays

Pinpoint have some really helpful information on their information hubs here on preparing for hospital visits, here: Preparing your child for hospital stays: Hospitals - Pinpoint (pinpoint-cambs.org.uk)

This NHS video is to help parent carers know what to expect.  The Evelina Children’s hospital also have a useful information that would apply to all hospitals. Mencap also offer several booklets to help parent carers prepare.  The BBC have a guide for parent carers too.

The Charity What?Why? also have a range of videos to help you including this one for parent carers. They also have free printable colouring activities which feature hospital.

This NHS video is to help parent carers know what to expect.  The Evelina Children’s hospital also have a useful information that would apply to all hospitals. Mencap also offer several booklets to help parent carers prepare.  The BBC have a guide for parent carers too.

The Charity What?Why? also have a range of videos to help you including this one for parent carers. They also have free printable colouring activities which feature hospitals.

What is a reasonable adjustment?

Under the Equality Act 2010, all disabled people have the right to reasonable adjustments when using public services, including healthcare. These could be small changes that really help if a person has an additional need. Mencap have produced a helpful guide for health workers on what reasonable adjustments could look like: Treat me well top 10 reasonable adjustments.pdf (mencap.org.uk) as well as another helpful link here: A4 REASONABLE ADJUSTMENTS final version.pdf (mencap.org.uk)

What Is a Hospital Passport?

A hospital passport is a document about you and your health needs. It also has other useful information, such as your interests, likes, dislikes, how you communicate and any reasonable adjustments that you might need: Download the Cambridge University Hospitals Patient Passport and Download a general Healthcare Passport here.

Mencap also have a helpful page on Hospital passports, reasonable adjustments and registering on the Learning Disability register, here: Health Guides: Hospital Passports, Summary Care Records And Flu Jabs | Mencap

What is a learning disability nurse/advisor in hospital?

Most of our children will be treated locally and the local hospital’s Learning Disability Nurse / Advisorwill be able to offer help and answer questions.  

Learning Disability Nurses understand the needs of people who have a learning disability and/or autism and understands how hospitals work.

Nurses/Advisors can work with the hospital to help your young person get the care, treatment, and tests they need. 

Learning Disability Nurse Easy read document includes more information and contact details. 

 

Moving to adult health services - Mental Health

Transitioning to adult health services

When young people transition to adult health services the aim is to ensure that any assessment of need is completed as early as possible and enable a seamless move to appropriate universal and specialist healthcare. Importantly, this includes identifying services that may no longer be available once someone reaches 18 and putting in place alternative healthcare support for young people, and their families, to achieve identified outcomes. 

Those who may have a greater need within health service transitions could include:

  • young people in receipt of children’s continuing care funding that move to adult continuing healthcare services and funding;
  • young people accessing child and adolescent mental health services moving to adult mental health services; and
  • young people with an Education, Health & Care (EHC) Plan that identifies other health service in order to meet assessed needs and outcomes.

Mental health difficulties are very common, one in four of us will have problems with our mental wellbeing at some time in our lives. More information can be found on the Mental Health page.

Young people aged 17 and over will be referred into the Adult Mental Health Services via their GP.

Transitions - Mental health

When young people transition to adult health services the aim is to ensure that any assessment of need is completed as early as possible and enable a seamless move to appropriate universal and specialist healthcare. Importantly, this includes identifying the different services available once someone reaches a certain age and supporting the young person to access alternative healthcare and support for that young people, and their families, to achieve identified outcomes. 

Those who may have a greater need within health service transitions could include but not limited to:

  • young people in receipt of children’s continuing care funding that move to adult continuing healthcare services and funding;
  • young people accessing child and adolescent mental health services moving to adult mental health services; and
  • young people with an Education, Health & Care (EHC) Plan that identifies other health services in order to meet assessed needs and outcomes.

Mental health difficulties are very common, 75% of adult mental health needs commence by the age of 14 years and 1 in 4 adults will experience issues with their mental wellbeing at some time in their lives.

Young people aged 17 can access Adult Mental Health Services either via their GP or through self-referral to the services, depending on the service and support required.

National-level guidance from the National Institute for Health and Care Excellence (NICE), published in 2016, is not focused specifically on mental health conditions but highlights that transition support in any health or social care service should:

  • Involve the young person and their family or carers, primary care practitioners and colleagues in education, as appropriate.
  • Address all relevant outcomes, including those related to education and employment; community inclusion; health and wellbeing, including emotional health; independent living and housing options.

SEND Transitions - Mental health

For young people with special educational needs or disabilities (SEND), planning for adulthood begins in Year 9 (the school year in which a child has their 14th birthday), and in some cases will continue until their 25th birthday.  We often call this phase in life 'transition' or a 'transition to adulthood'.

This phase of “preparing for adulthood” is when professionals will consult with you and your son or daughter to consider if they may need specialist support during transition and into adulthood. 

Moving to adult health services - Life limiting conditions

Transition with life-limiting conditions

Together for Short Lives offers transition support for young people with life-limiting or life-threatening conditions which sets out a pathway for moving from child-centred to adult orientated health care systems.

It sets out a number of key standards and goals across healthcare, social care, education, work and housing.

0 to 18 years with life-limiting conditions

East Anglia’s Children’s Hospices (EACH) supports families and cares for children and young people, 0-18 years, with life-limiting conditions. 

EACH offers care to families with children and young people who: 

  • live in North, Mid and West Essex, Norfolk, Suffolk, Peterborough and Cambridgeshire

  • have a condition with no reasonable hope of cure and from which they may/will die in childhood or early adulthood 

  • have a condition (or are diagnosed with a condition in the antenatal period) for which curative treatment may be feasible but can fail, such as children and young people with cancer and for babies born where intensive care has been deemed inappropriate and those with post-natal conditions which result in the baby experiencing unbearable suffering in the course of their illness or treatment. 

Over 18 years with life-limiting conditions

Sue Ryder Thorpe Hall Hospice is the only specialist palliative care inpatient unit in Peterborough. They provide care and support for people over the age of 18 who are living with life-limiting conditions, as well as supporting their families.

Transition Co-ordinator

In 2019 National Lottery Community funding was awarded for a Transition Co-ordinator for young people with life limiting conditions.

Further details can be found on the Sue Ryder website

What to do if you are not happy with health care

If you have concerns or complaints about health services you can contact the PALS team

Need to include details of all the PALS teams across Cambridgeshire.

Myhealth App

A new app has launched to help residents across Cambridgeshire and Peterborough to find local NHS services available to them.

The ‘MyHealth Cambridgeshire & Peterborough’ app will locate the nearest appropriate NHS service for you which includes local GPs, pharmacies, minor injury units and dentists. 

More information about the app is on the Cambridgeshire and Peterborough NHS website.

Resources

Easyhealth website

There are over 500 easy read leaflets on the Easyhealth website providing a fantastic resource for anyone looking to access clear, practical and easy to understand health information.

Better Health

Public Health England has launched a major new adult health campaign to seize the opportunity for a national reset moment. 

COVID-19 has affected the whole country; for almost everyone, life has had to fundamentally change. But it has also prompted many people to reflect and think more seriously about their health. 

Nearly two thirds (63%) of adults in the UK are overweight or living with obesity. Gaining weight is often a gradual process that takes place over a number of years and modern life doesn’t always make it easy. This extra weight causes pressure to build up around vital organs, making it harder for the body to fight against diseases like cancer, heart disease and now COVID-19. By reducing your weight within a healthy range, you can help cut your risk of being critically ill with COVID-19.

You can get access to the Better Health website

The better health website has access to lots of ideas to help you get started on your health improvement journey

Healthy You

Healthy You are a free service for Cambridgeshire and Peterborough residents who are looking to make changes to their lifestyle.

Whether you want help to quit smoking, lead a more active lifestyle, lose some weight, or simply take advantage of the NHS Health Checks they offer, Everyone Health – alongside Cambridgeshire County Council and Peterborough City Council – can help you.

Services include:

  • Adult weight management
  • Health trainer
  • Health checks
  • Stop Smoking
  • Alcohol reduction
  • National child measurement programme
  • Alive and kicking
  • Falls prevention

Healthy You website

Contact: 0333 005 0093

email:  eh.healthyyou@nhs.net

NHS App

Owned and run by the NHS, the NHS App is a simple and secure way to access a range of NHS services on your smartphone or tablet.

The NHS App is available now on iOS and Android. To use it you must be aged 13 and over and registered with a GP surgery in England.

Use the NHS App to:

  • get advice about coronavirus – get information about coronavirus and find out what to do if you think you have it
  • order repeat prescriptions - see your available medicines, request a new repeat prescription and choose a pharmacy for your prescriptions to be sent to
  • book appointments - search for, book and cancel appointments at your GP surgery, and see details of your upcoming and past appointments
  • check your symptoms - search trusted NHS information and advice on hundreds of conditions and treatments, and get instant advice or medical help near you
  • view your medical record - securely access your GP medical record, to see information like your allergies and your current and past medicines
  • register your organ donation decision - choose to donate some or all of your organs and check your registered decision
  • find out how the NHS uses your data - choose if data from your health records is shared for research and planning

Find out more here.

Videos

How to get a learning disability annual health check
Health is everybody's responsibility - Annual Health checks

Related Pages

  1. Health
  2. SEND Health Services Overview
  3. Universal Health Services
  4. Specialist Health Services
  5. Common Health Concerns
  6. Preparing For Adult Life

Related Services

  1. Kooth
  2. Young Minds
  3. Keep Your Head (Adults)

External Links

  1. Useful apps for teenage anxiety
  2. Easyhealth website

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