Learning disabilities

A learning disability affects the way a person learns new things throughout their life.

A learning disability is different for everyone. No two people are the same.

A person with a learning disability might have some difficulty:

• understanding complicated information
• learning some skills
• looking after themselves or living alone

What having a learning disability can mean

A learning disability is different for everyone. Lots of people who have a learning disability can work, have relationships, live alone and get qualifications.

Other people might need more support throughout their life.

Support for people with a learning disability and family carers

Doctors and other health workers might be able to tell if a person is likely to have a learning disability before they are born or when they are very young. But some people get a diagnosis later in their lives. This can be when they are adults.

If you are diagnosed with a learning disability, you might be referred to other health professionals to get the support you need. There is also help available for families, parents and carers, including support from charities.

What causes a learning disability?

We do not always know why a person has a learning disability. Sometimes it is because a person's brain development is affected, either before they are 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
• genetic changes, sometimes passed on from the baby's parents, that make having a learning disability more likely
• illness, such as meningitis, or injury in early childhood
• certain health problems, such as spina bifida, that affect a baby's development

There are some health conditions where you may be more likely to have a learning disability.

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

Some people with epilepsy also have a learning disability and so do many autistic people.

Profound and multiple learning disability (PMLD)

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 a profound and multiple learning disability might have difficulties seeing, hearing, speaking and moving. They may have complicated health and social care needs due to these or other conditions.

People with a profound and multiple learning disability need support to help them with some areas of their life, such as eating, washing or personal care.

Lots of people with a profound and multiple learning disability can still be involved in decisions about themselves, do things they enjoy and be independent.

Some people who struggle with talking might be able to use other ways of communication, like sign language, Signalong, Makaton, or digital systems like picture exchange communication systems (PECS).

 Annual health checks Learning disabilities 

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.

Who can have an annual health check?

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.

How will an annual health check help?

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.

How do you get an appointment?

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.

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.

You can also ask your doctor if there's another GP surgery in your area that provides health checks.

What happens during the annual health check?

During the health check, a 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.

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.

Together you can agree on any actions and next steps. These should be written down in your health action plan, or health profile.

Making reasonable adjustments for you

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.

Do you have to have an annual health check?

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, vaccinations or procedures before you have them.

 Getting support Learning disabilities 

Being diagnosed with a learning disability is helpful. This is because it can help you to get the support you need.

Every learning disability is different. Having a diagnosis can be really important and helpful. But some people may feel that they do not need a diagnosis.

A learning disability diagnosis might happen at different ages.

Getting support for children and young people with a learning disability

Some children start doing things like walking or talking later than other children their age. This is nothing to worry about.

But, if you think your child is learning to do things later than other children because they may have a learning disability, speak to a doctor (GP) or your health visitor.

Health, education and social care services will work together with you and your child to find out what support they need. They will then put a plan in place for them.

This plan should support children from birth to 25 years old.

Find out more:

Getting support for adults with a learning disability

If you have a learning disability you might need some support when you are an adult.

The adult social care department of your local council will work with you to find out what support you need. Your family, carer or support worker can help you with this if you need them to.

This is called a needs assessment.

Find out more about getting a care needs assessment.

 Support if you are going into hospital Learning disabilities 

Going into hospital can be a worrying time for some people with a learning disability. But there is extra support you can get while you are in hospital.

Getting ready to go into hospital

If you know you are going into hospital soon there are some things you can do to help yourself feel ready. You can:

• talk through what might happen with family, friends or a health professional
• read through any information the hospital or doctor has given you – you might need someone to help you with this
• have a hospital passport ready – this will help you tell the hospital staff what reasonable adjustments you need
• make sure the hospital know what reasonable adjustments you will need before you go there

Find out more:

Learning disability nurses

If you're being referred to hospital by your doctor (GP), you can ask them to check whether the hospital has a learning disability nurse. You can also ask your social worker, or the patient advice and liaison service (PALS) at the hospital.

A learning disability nurse supports you if you have a learning disability while you are in hospital. They make sure you get good care.

You might be able to choose a different hospital if the one you are going to does not have a learning disability nurse.

It is important that the nurse meets you and your carer as soon as possible after you arrive at hospital or before you go into hospital.

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

Hospital passports

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.

Making reasonable adjustments for you

Reasonable adjustments tell people who will look after you in hospital the support you need. We are all different, so it is important you talk about this.

Some examples of reasonable adjustments are having:

• a carer stay in hospital overnight with you
• information in easy read or plain English
• a longer appointment
• time to meet your learning disability nurse before you go into hospital
• more time and support to make sure you understand what you need to at the hospital

You or your carer can include in your hospital passport any help you need with eating or drinking, or how to tell if you are in pain.

Questions about your treatment

You or your carer might want to ask some questions. You should be given time and support to understand what you are being told.

These questions may include:

• what will happen when I get the treatment?
• how will the treatment improve my health?
• how good are the chances of success?
• are there any other treatments I could have and why should I have this one?
• what are the risks, if any, and how serious could they be?
• what happens if I decide not to have treatment?

You or your carer may have other questions you might want to ask. You can ask the doctor or nurse to explain something again if you need them to.

Deciding to have treatment or not (consent)

While you are in hospital, the doctors will ask you if are OK (give your consent) with having some treatments. This includes things like operations.

If you are over 16 years old, you can usually say you are OK to have treatment yourself. If you are under 16, or over 16 but not able to do this, your parent or carer can do this for you.

The doctor must explain what's involved in the treatment, why you need it, how it will help and if there might be any risks with having a treatment. This is so you have all the information and understand what you need to know about the treatment before you make a decision.

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.

If you are not able to agree to a treatment yourself

If you are not able to understand what you are saying OK to, you can ask someone else to make decisions for you.

This is called having a lack of capacity to make decisions. You will still be able to make decisions about your life at other times.

Some people will have something called a deputy. Other people will have someone who has lasting power of attorney. If someone is a deputy or has lasting power of attorney, they can make important decisions for you if you are not able to.

A deputy

A deputy can make decisions on health and welfare, as well as making decisions about money. The court will tell them what kinds of decisions they can make. This usually happens when lots of decisions need making, not just one.

Deputies are not allowed to say you cannot have treatment that will keep you alive.

Lasting power of attorney

Someone who has lasting power of attorney is someone who knows the person well. They will be able to make decisions for a person whenever they are needed. They do not need the court to tell them they can.

If you want someone to have lasting power of attorney for you, you need to be able to agree to this. This means that if you cannot give consent to having lasting power of attorney you might have to get a deputy instead.

If you have someone with lasting power of attorney, you do not usually need a deputy as well.

No one is allowed to give consent for an adult if they have capacity to make their own choices. But doctors may sometimes treat an adult without consent if they do not have capacity and the treatment is necessary, and in the person's best interests.

Find out more:

• Consent to treatment: assessing capacity
• The Mental Capacity Act

Leaving hospital

There should be a plan in place for when you leave hospital to make sure you continue to get all the support you need.

This plan might have in it how you will get back home, the support you might need once you are at home, the medicine you need to take and how to take it.

It should also include a care plan to support you after you are settled at home.