The short answer
- Aged 14 or over and on the GP registerThe check is free and once a year. The person or the family can ask the practice to add them to its learning disability register.
- No diagnosis letter is needed to joinNHS England says being identified by a GP is not a clinical diagnosis, and the GP can decide from a conversation.
- It looks at physical health and medicinesWeight, blood pressure, possibly a blood test, a medicines review, vaccinations, and conditions that are more common with a learning disability.
- Ask for adjustments, and leave with a planA longer appointment or a quiet time of day are yours to ask for. The check should end with a health action plan.
This page is written for whoever is reading it: a parent, a brother or sister, a support worker, or the person the check is for. Where it says the person, read it as yourself if that is who this is about.
Who can have one
Who can have an annual health check, and how to get on the register
The check is for anyone aged 14 or over who has a learning disability and is on their GP practice's learning disability register. Being on the register is what brings the invitation, so that is the first thing to check.
The words you will hear
- Learning disability
- A reduced ability to understand new or complex information and to learn new skills, which started before adulthood and affects everyday life. It is lifelong.
- Learning difficulty
- Something different, such as dyslexia or dyspraxia, which affects one kind of learning. NHS England guidance keeps the two apart, and the register is for a learning disability.
- Learning disability register
- The list a GP practice keeps of its patients who have a learning disability. It is how the practice knows whom to invite, and whose records need a note about adjustments.
- Health action plan
- What the check produces: the things the person, the family and the practice agree to do about the person's health over the coming year.
- Reasonable adjustments
- Changes a service makes so a disabled person can use it as well as anyone else. The Equality Act 2010 requires GP surgeries to make them.
A person can have a learning disability and not be on the register, for example if nobody has ever asked for them to be added. The practice cannot invite someone it does not know about. If the person has not been invited to a check in the last year, ring the surgery and ask two questions: is this person on your learning disability register, and when is their annual health check due? For health, money and support more widely, the family guide to learning disability is the place to start.
A formal diagnosis letter is not needed. NHS England's guidance to GP practices says that identifying a patient as having a learning disability does not constitute a clinical diagnosis, and that a request from the patient or a carer can prompt the practice to consider adding them. The GP can decide from a conversation about how the person manages day to day, together with anything the family already has, such as school records or letters from a learning disability team. Mencap's page on the register says the same in plain words, and its letter builder writes a short letter asking the surgery to add someone, which you can print or email.
Being on the register brings other things too. People on it are among those offered a free flu vaccine each year, and so are the main carers of a disabled person. The register also helps the practice make the adjustments the person needs at every appointment, not only this one.
The check begins at 14, and one reason is to help with the move to adult services at 18. If your son or daughter is still at school, the transition at 18 sets out what else changes in those years.
What the check covers
What the doctor or nurse looks at
The check is done by a GP or a practice nurse. The NHS describes what it includes, and it is broader than an ordinary appointment because some health problems are more common with a learning disability and easier to miss.
A physical check-up
Every check
Blood and urine tests
If needed
Epilepsy, constipation and swallowing
Asked about every time
Eyesight and hearing
Checked or referred
A review of medicines
Every check
Vaccinations
Brought up to date
How the person is feeling
Their own account
The full list is on the NHS page about annual health checks. Nothing in the check is compulsory. The NHS says plainly that the person can choose whether to have one, and each test needs their consent. If the person cannot make a decision about a particular test, even with help, the doctor must follow the Mental Capacity Act and act in their best interests. Making decisions for a grown-up son or daughter explains how that works and what a parent can and cannot decide.
Before, during and after
The check from the invitation to the health action plan
Most of what makes a check useful happens outside the appointment itself: the preparation before it and the follow-up after it. Here is what the person and the family do at each stage, beside what the practice does.
Before
When the invitation comes, or two to four weeks ahead
The person, and whoever supports them
- Check the person is on the learning disability register. If no invitation has come, ask the practice to add them and to book the check.
- Fill in the pre-check questionnaire together if the practice sends one, and send it back before the day.
- Ask for the adjustments that help, such as a longer appointment, the first or last slot of the day, or a quiet place to wait.
- Talk with the person about what they want to ask, and who they would like to come with them.
The GP practice
- Keeps the register and invites everyone on it aged 14 or over for a check once a year.
- May send a questionnaire first, so the appointment starts from what matters to the person.
- Should record the adjustments the person needs and make them, which the law requires.
On the day
At the surgery, with a doctor or a practice nurse
The person, and whoever supports them
- Bring the medicines or a list of them, glasses and hearing aids, and any notes about the last year.
- Let the person speak for themselves as far as they can, and fill in only what they cannot remember.
- Remember that the person can say no to any part of the check, a blood test included.
The GP practice
- Checks weight, heart rate and blood pressure, and may ask for a urine sample or a blood test.
- Asks about epilepsy, constipation, swallowing, eyesight and hearing, which can be more common with a learning disability.
- Goes through the medicines, checks vaccinations are up to date, and asks how the person is feeling.
After
In the weeks that follow, and through the year
The person, and whoever supports them
- Take home the health action plan, and ask for an easy read copy if that would help.
- Follow up what was agreed: test results, the optician, a hearing test, the dentist.
- Share the plan with whoever supports the person, and keep it with the hospital passport.
The GP practice
- Writes up the health action plan, which sets out what will be done about the person's health over the year.
- Makes any referrals and deals with the results of tests.
- Invites the person again the following year, when the plan is looked at again.
A year later the practice invites the person again, and the next check looks back at the health action plan from this one.
The pre-check questionnaire is worth the time. Practices use their own versions, some of them in easy read, and they ask about the things the doctor will cover, so the appointment starts from what the person and the family already know. To help the person know what to expect, read Mencap's easy read guide to annual health checks together beforehand. If the practice does not send one, write a few lines yourself: any change in the last year in weight, sleep, eating, toilet habits, mood or behaviour; any falls or seizures; any new medicine; and what the person would like to ask. Pain or illness can show as a change in behaviour, so a change is worth writing down even when the reason is unclear.
Take a copy of the health action plan away with you. It should say in words the person can follow what will happen next, who will do it, and when. If it is not offered, ask for it before you leave the room. Keep it with the hospital passport, so that anyone treating the person in hospital can see what the GP already knows. The NHS page on going into hospital with a learning disability has a passport you can fill in.
If the person has a carer who writes visit reports on PrimeCarers, those reports can be downloaded as a PDF for a chosen range of dates, which is one way to bring a record of the last few months to the check.
Making it easier
Reasonable adjustments to ask for, and who comes with them
GP surgeries must make reasonable adjustments for disabled people under the Equality Act 2010. You do not need to know the law to ask. Say what makes an appointment hard for the person, and ask what the practice can do about it.
| Ask for | Why | |
|---|---|---|
| A busy waiting room | The first or last appointment of the day, or waiting outside until the doctor is ready. | The NHS lists an appointment at the beginning or end of the day as an adjustment you can ask for. |
| Needing time to answer | A longer appointment. | The person has time to say what they want to say, and nothing in the check has to be rushed. |
| Finding words or letters hard | Pictures, large print or simpler words, and letters in easy read. | The person can follow what is happening and agree to it, rather than having it explained to someone else. |
| Communicating without speech | Time to show how the person says yes, no and that something hurts, with their communication passport if they have one. | Pain and worry can be shown rather than said, and the doctor needs to know how to read them. |
| A fear of needles or of the surgery | A visit beforehand to see the room, or the blood test on a separate day once the rest of the check is done. | Several short, calm visits can be better than one long one that ends badly. |
| Meeting someone new each time | The same doctor or nurse each year, if the practice can arrange it. | Someone who saw the person last year can notice what has changed since. |
A busy waiting room
- Ask for
- The first or last appointment of the day, or waiting outside until the doctor is ready.
- Why
- The NHS lists an appointment at the beginning or end of the day as an adjustment you can ask for.
Needing time to answer
- Ask for
- A longer appointment.
- Why
- The person has time to say what they want to say, and nothing in the check has to be rushed.
Finding words or letters hard
- Ask for
- Pictures, large print or simpler words, and letters in easy read.
- Why
- The person can follow what is happening and agree to it, rather than having it explained to someone else.
Communicating without speech
- Ask for
- Time to show how the person says yes, no and that something hurts, with their communication passport if they have one.
- Why
- Pain and worry can be shown rather than said, and the doctor needs to know how to read them.
A fear of needles or of the surgery
- Ask for
- A visit beforehand to see the room, or the blood test on a separate day once the rest of the check is done.
- Why
- Several short, calm visits can be better than one long one that ends badly.
Meeting someone new each time
- Ask for
- The same doctor or nurse each year, if the practice can arrange it.
- Why
- Someone who saw the person last year can notice what has changed since.
Adjustments listed by the NHS include pictures, large print or simpler words, a longer appointment, having a carer with you, and an appointment at the start or end of the day. NHS England also lists quiet waiting areas.
Ask for the adjustments when you book, not on the day, and ask the practice to record them on the person's notes. NHS England runs a Reasonable Adjustment Flag, a marker on a person's record that shows the adjustments they need to other NHS services as well, so it is worth asking whether the practice uses it.
The person can bring someone with them, and the NHS lists having a carer present as an adjustment. That might be a parent, a brother or sister, a friend, or a paid carer or support worker the person knows. It should be someone the person wants there and trusts. A good supporter helps the person say what they want to say, remembers the things they may forget, and writes down what the doctor says, while the person stays at the centre of the conversation.
PrimeCarers is an introductory service. We introduce self-employed carers and do not provide or manage care. Before a carer appears in a search we check their identity and their right to work, confirm an enhanced DBS check (or PVG in Scotland, Access NI in Northern Ireland) issued within the last 18 months, and interview them online. Carers are insured while they work. We do not check qualifications, training or references, and there is no way to search for carers by learning disability experience. What a carer says about it is their own account on their profile, so ask at interview, and questions to ask a private carer has a list to work from. A carer who comes to the check is there to support the person, not to consent for them or take on clinical tasks, and what carers are not allowed to do sets out where that line sits.
If it goes wrong
What to do if the check is not offered or is done badly
Sometimes the invitation never comes. Other times the check is so short that the medicines are not reviewed and no plan is written. There is a clear order of things to try, starting with the practice itself.
- 1
Ask the practice first
This weekAsk whether the person is on the learning disability register and when the check is due. If they are not on it, ask for them to be added, in writing if you can. - 2
Ask for what was missed
Soon after the checkIf the check felt rushed, or parts of it did not happen, ask for a follow-up appointment and for the health action plan in writing. Say what was missed. - 3
Ask the learning disability team for help
If the practice does not offer checksYour local community learning disability team can help you get one. Mencap suggests asking whether another surgery in the area provides the check. - 4
Make a complaint
Normally within 12 monthsComplain to the practice or to the integrated care board that pays for it, but not both. A free NHS complaints advocate can help you write the complaint and come to meetings. - 5
Go to the Ombudsman
If the answer is not good enoughIf you are not satisfied with how your complaint was handled, the Parliamentary and Health Service Ombudsman looks at NHS complaints independently.
NHS England sets out the complaints route, including the 12-month time limit and when it can be extended, on its page about making a complaint. Your local Healthwatch can point you to an advocacy service near you, and the Parliamentary and Health Service Ombudsman is the last step if the complaint is not resolved.
If the person's health changes between checks, you do not have to wait a year. Book an ordinary appointment and ask for the same adjustments. If the person also has epilepsy, epilepsy care at home covers who may give rescue medication and how the training is arranged with the clinical team, and can a private carer give medication? covers the everyday medicines.
For older parents who have organised every appointment for decades, it is worth thinking about who will do this when you cannot. Writing the health action plan and the hospital passport down, rather than keeping them in your head, is a large part of that. When the parents can no longer cope looks at that wider question, and care at home for an adult with a learning disability covers the support that can sit around the rest of the week.
Questions
Questions families ask about the annual health check
No. NHS England's guidance to GP practices says that a GP identifying a patient as having a learning disability is not a clinical diagnosis, and that a request from the patient or a carer can prompt the practice to consider adding them. The GP can decide from a conversation about how your son manages day to day. Any letters or school records you have will help, but they are not required. Mencap's page on the register explains how to ask.
It can. The NHS says the doctor or nurse may ask for a urine sample or a blood test. It depends on the person and what the doctor wants to check. The person can say no to any part of the check, and if a blood test is frightening you can ask for it on a separate day, with time to prepare. If the person cannot decide about a test, the doctor must follow the Mental Capacity Act.
Mencap publishes an easy read guide to annual health checks, with pictures beside each point, and a guide for parents and carers. The pre-check questionnaire comes from the GP practice, which uses its own version, so ask the surgery for theirs. If they do not have one, a few written lines about what has changed in the last year will do the same job.
Yes, if the person wants them there. The NHS lists having a carer with you as a reasonable adjustment. The carer is there to support the person to take part, to remember what was said and to help follow things up afterwards. They do not consent to anything on the person's behalf.
Not for that reason alone. Dyslexia, dyspraxia and ADHD are learning difficulties, which NHS England guidance treats as different from a learning disability. The annual health check is for people on the learning disability register. If you are unsure which applies, ask the GP to consider it; the practice can use a screening tool to help decide.
The main carer of a disabled person is among those the NHS offers a free flu vaccine each year, so tell the practice that you are a carer. You can also ask the council for a carer's assessment, which looks at the support you need to keep caring.