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Learning disabilities

A learning disability affects the way a person learns new things throughout their lifetime. Find out how a learning disability can affect someone and where you can find support.

A learning disability affects the way a person understands information and how they communicate. This means they can have difficulty:

  • understanding new or complex information
  • learning new skills
  • coping independently

Around 1.5 million people in the UK have a learning disability. It's thought up to 350,000 people have a severe learning disability. This figure is increasing.

A learning disability can be mild, moderate or severe.

Some people with a mild learning disability can talk easily and look after themselves but may need a bit longer than usual to learn new skills. Other people may not be able to communicate at all and have other disabilities as well.

Some adults with a learning disability are able to live independently, while others need help with everyday tasks, such as washing and dressing, for their whole lives. It depends on the person's abilities and the level of care and support they receive.

Children and young people with a learning disability may also have special educational needs (SEN).

Some learning disabilities are diagnosed at birth, such as Down's syndrome. Others might not be discovered until the child is old enough to talk or walk.

Once your child is diagnosed with a learning disability, your GP can refer you for any specialist support you may need.

You'll begin to get to know the team of professionals who will be involved in your or your child's care.

The right support from professionals – such as GPs, paediatricians (doctors who specialise in treating children), speech and language therapists, physiotherapists, educational and clinical psychologists and social care – helps people with a learning disability live as full and independent a life as possible.

A learning disability happens when a person's brain development is affected, either before they're born, during their birth or in early childhood.

This can be caused by things such as:

  • the mother becoming ill in pregnancy
  • problems during the birth that stop enough oxygen getting to the brain
  • the unborn baby inheriting certain genes from its parents that make having a learning disability more likely – known as inherited learning disability
  • illness, such as meningitis, or injury in early childhood

Sometimes there's no known cause for a learning disability.

Some conditions are associated with having a learning disability because people with these conditions are more likely to have one.

For example, everyone with Down's syndrome has some kind of learning disability, and so do many people with cerebral palsy.

People with autism may also have learning disabilities, and around 30% of people with epilepsy have a learning disability.

A profound and multiple learning disability (PMLD) is when a person has a severe learning disability and other disabilities that significantly affect their ability to communicate and be independent.

Someone with PMLD may have severe difficulties seeing, hearing, speaking and moving. They may have complex health and social care needs due to these or other conditions.

People with PMLD need a carer or carers to help them with most areas of everyday life, such as eating, washing and going to the toilet.

With support, many people can learn to communicate in different ways, be involved in decisions about themselves, do things they enjoy and achieve more independence.

Read more about caring for children with complex needs.

You can also find out more about all aspects of being a carer, including practical support, financial matters and looking after your own wellbeing in the Care and Support guide.

People with a learning disability often have poorer physical and mental health than other people. This does not need to be the case.

It is important that everyone over the age of 14 who is on their doctor's learning disability register has an annual health check.

An annual health check can help you stay well by talking to a doctor or nurse about your health and finding any problems early, so they can be sorted out.

You do not have to be ill to have a health check – in fact, most people have their annual health check when they are feeling well.

If you are worried about seeing a doctor, or there is anything they can do to make your appointment better, let the doctor or nurse know.

They can make changes to help you. These are called reasonable adjustments.

Watch this video about annual health checks on YouTube.

Find out more about annual health checks in this easy read leaflet from Mencap (PDF 2.72MB).

Anyone aged 14 or over who is on their doctor's learning disability register can have a free annual health check once a year.

You can ask to go on this register if you think you have a learning disability.

Check with your doctor's practice if you or the person you care for is on the register.

You will get to know your doctor better. The doctor will also be able to spot any health problems sooner so that you get the treatment you need to stay well.

You can ask your doctor questions about your health and tell them how you are feeling.

You can also talk about any treatment you are having or medicine you use.

Adults and young people aged 14 or over with a learning disability who are on the doctor's practice learning disability register should be invited by their doctor to come for an annual health check.

During the health check the doctor or nurse will:

  • do a physical check-up, including weight, heart rate and blood pressure
  • they may ask you to pee in a small pot for them to check your urine, or ask you to have a blood test
  • talk to you about staying well and if you need any help with this
  • ask about things that can be more common if you have a learning disability, such as epilepsy, constipation or problems with swallowing (dysphagia), or with your eyesight or hearing
  • talk to you about your medicines to make sure you are being given the right medicines when you need them
  • check to see if your vaccinations are up to date
  • check how you are feeling if you have a health problem such as asthma or diabetes
  • check to see if you have any other health appointments
  • ask if your family or carers are getting the support they need
  • help make sure that things go well when children move to adult services at the age of 18

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).

Find out more about STOMP in this NHS easy read leaflet (PDF 480KB).

You will be asked if you are ok (give your consent) with sharing your health information with other health services to make sure you get the right support if you go to a hospital, for example.

Your parents or your main carer may be able to do this for you if you are not able to.

The doctor or nurse can give you health information, such as advice on healthy eating, exercise, contraception or stopping smoking.

The NHS has to make it as easy for disabled people to use health services as it is for people who are not disabled. This is called making reasonable adjustments.

Ask your doctor if you need any reasonable adjustments, such as:

  • using pictures, large print or simpler words to say what's happening
  • booking longer appointments or having a carer with you
  • putting an appointment at the beginning or end of the day, if you find it hard to be in a busy waiting room

The reasonable adjustments you need should be written down in a health profile or health action plan that the doctor or nurse can use.

Watch a video about reasonable adjustments and how they can help you on YouTube

No. You can choose if you want to have an annual health check or not.

You can ask the doctor or nurse for more information about annual health checks before you decide.

You will be asked if you are ok (give your consent) with having any tests or procedures before you have them.

Most doctors offer annual health checks to people with a learning disability. But they do not have to offer this service.

If your doctor's practice has not offered you an annual health check, you can ask them if you can have one. If they say no, ask your local community learning disability team to help you get one.

Find local learning disability services

No. The NHS Health Check programme is for all adults aged 40 to 74.

It assesses their risk of heart disease, stroke, kidney disease, diabetes and dementia every 5 years.

Find out more about the NHS Health Check.

Being diagnosed with a learning disability can come as a shock. It is not always clear what the learning disability is or what caused it.

Some children are late reaching developmental milestones, such as talking or walking. This is usually nothing to worry about.

Developmental difficulties can sometimes have a definite cause, such as a problem with eyesight or hearing, or a condition such as a learning disability or autism.

Speak to your GP if you're worried about your child's development.

The needs of children and adults with disabilities or long-term health conditions are assessed to ensure they get the right care, health treatment, support and, if still at school or college, education or training. Where people have more than one type of assessment, they should be joined up.

Children and young people

Under the Children and Families Act 2014, and other laws, health, education and social care services must assess and plan for the needs of children and young people with special educational needs and disabilities (SEND) from birth to 25 years old. In some cases, extra help through Education Health and Care Plans must also be provided.

GOV.UK has more information about special educational needs and disability for children and young people.

If you think your child has an undiagnosed condition, your GP should be able to help you get the advice you need. The charity Scope's expert forum includes advice for families who can't get a diagnosis.

Adults

Adult social care assessments happen under the Care Act 2014 and other laws.

The assessment establishes the needs of the person with a disability and which services would be best for them. The purpose of the assessment is to draw up a plan of action for the person being assessed.

Each local area should make it clear how to get an assessment and the care that's needed. It's important for people to be assessed as early as possible to help them have the best life outcomes.

Read about how to get your care and support needs assessed.

If you have any concerns, talking about them with family, friends or the staff of an organisation like Mencap may help.

Healthcare providers, social services, schools and colleges all have a duty to make sure people get the right care and support.

There are also many community learning disability organisations who may be able to provide the help and support you need.

Find learning disabilities services near you.

You may also find these apps to help people with a learning disability useful.

If you're unhappy with the standard of healthcare you receive and are unable to resolve it with the staff or the service, you may want to make a complaint.

NHS England with other organisations also provide further information to help people with a learning disability and families give feedback, raise a concern or make a complaint about any aspect of their healthcare, social care or education support.

Going into hospital can be a worrying time for anyone. But it can be particularly worrying and stressful for someone with a learning disability.

If you or the person you care for needs help or advice while in hospital, ask a member of staff or contact the hospital's Patient Advice and Liaison Service (PALS), or the Mencap Direct helpline on 0808 808 1111 (Monday to Friday, 9am to 5pm).

The following advice will help to make a hospital stay go smoothly.

Before the hospital stay, make time to talk about what will happen so that you or the person you care for understands as much as possible.

The hospital or GP may have given you printed information to go through, but simple explanations such as this easy read description of what happens when you go into hospital (PDF, 846kb) can also help.

Before going into hospital, make sure the hospital staff know about your disability and what reasonable adjustments you need.

This should be something the GP includes in their referral letter – ask them about this to make sure.

You or your carer can ask the GP if you can see all the letters written about you.

Find out about accessing medical records on someone else's behalf.

If you're being referred to hospital by your GP, you can ask the GP to check whether the hospital has a learning disability liaison nurse.

This is a specialist nurse who supports people with a learning disability while they're in hospital to make sure they get the care they need.

It may be possible to choose a hospital that has learning disability liaison nurses if other hospitals do not have this service.

It's important that the nurse meets you, and your carer if appropriate, as soon as possible after you arrive at hospital or, ideally, before a hospital stay.

This is so the nurse can find out as much as possible about you and understand the help you may need while in hospital.

A healthcare passport is a document about you and your health needs.

It also contains other useful information, such as your interests, likes, dislikes and preferred method of communication.

Healthcare passports can be very useful if you have to go into hospital. As well as giving hospital staff details about your health, the other useful information can help staff make you feel more comfortable.

You may be able to get a healthcare passport from community learning disability teams, your GP or your hospital.

Easyhealth has more information about healthcare passports.

In 2016, the Accessible Information Standard was brought in for health services to help people with a disability to communicate their needs.

It's important to make sure all staff involved in your care know how to communicate with you.

Hospital staff should ask you or your carer how you prefer to receive information – for example, through talking, or in easy read format. They should make a note of your choice and let other staff know, so you get information in the right format.

You or your carer should also tell the nurses if you need help with eating or drinking, or if you're in pain.

If you find it hard to understand what the doctors or nurses are saying, ask for help.

Carers can help make sure that doctors and nurses know about communication and that it's written in the person's medical notes.

It may be possible for carers to stay in hospital overnight with the person they care for.

While in hospital, the doctors will need to have a consent (permission) form signed before they can perform an operation on someone.

If you're over 16 years old, you can usually give consent yourself. If you're under 16, consent is usually given by a parent or someone with parental responsibility.

The doctor must explain what's involved in the treatment, why you need it, how it will help and if there might be any problems with it. This is so you have all the information you need to decide.

The doctor should explain everything in a way you find easy to understand, and you can ask as many questions as you like. You can also ask a carer or friend to help you.

Lack of capacity

A person who cannot understand what they're consenting to may lack capacity to make decisions. They may still be able to make decisions at other times.

A deputy is a person who helps someone make decisions or makes decisions on their behalf. A deputy is appointed by the Court of Protection if the person concerned lacks the capacity to make a decision. A deputy can be the person's family member, friend or member of staff.

A deputy can make decisions on health and welfare, as well as on financial matters. They'll come into action when the court needs to delegate an ongoing series of decisions, rather than one decision.

But deputies cannot refuse consent to life-sustaining treatment.

No one can legally give consent on behalf of another adult who has capacity. But doctors may treat an adult without consent if they lack capacity, provided the treatment is necessary and in the person's best interests.

Lasting Power of Attorney

In this case, someone who knows the person best may be consulted by the doctor or another healthcare professional, particularly if they have Lasting Power of Attorney to help make medical decisions on the person's behalf or if they're their "deputy".

Young people or adults with a learning disability may never have had capacity and are therefore unable to agree to a Lasting Power of Attorney.

If the person already has a Lasting Power of Attorney appointed, they normally will not need a deputy as well.

Read more about being a deputy on GOV.UK.

Asking questions for the person you care for

You may want to ask the following questions on behalf of the person you care for:

  • What will the treatment involve?
  • How will the treatment improve the person's health?
  • What are the benefits of this treatment rather than others (if there are any)?
  • How good are the chances of success?
  • Are there any alternatives?
  • What are the risks, if any, and how serious could they be?
  • What happens if the person does not have treatment?

Read more about consenting to treatment and the Mental Capacity Act.

GOV.UK also has more about making decisions on behalf of someone.

Lots of people are afraid of needles, and needles may cause added distress for someone with a learning difficulty.

With blood tests, intravenous fluids and medication injections, needles can be hard to avoid in hospital.

If the person you care for gets upset by needles, ask if the hospital has anaesthetic cream that can be used to numb the area where the needle will go in.

There should be a plan in place for when the person with a learning disability is discharged from hospital.

It could include transport from the hospital and helping the person settle in once they arrive home. It may also include details of medication and an ongoing care plan – for example, from their GP or social services.

Read more about being discharged from hospital.