This section has questions that self-advocates often ask us.
We would like to thank the National Advisory Group and our Advisory group for their help with the questions.
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This is how Mencap describes a learning disability: 'A learning disability is caused by the way the brain develops.’
There are many different types of learning disability. Most learning disabilities develop before a baby is born or during their birth. Sometimes a serious illness or accident in early childhood can cause a learning disability.
A learning disability lasts for the person’s whole life. A person might have a mild, moderate or severe learning disability. This will affect the amount of support they need in their day-to-day life. People with learning disabilities generally find it harder than other people to learn, understand and communicate.
A learning disability is not a mental illness. It is also different from a learning difficulty like dyslexia (difficulty with reading and writing). But some people like to say ‘learning difficulty’ instead of ‘learning disability’.
A lot of local health services have easy read health information to give you too. It is good to ask your local health service if they can give you easy read information. They should do this because of a law called the Equality Act 2010.
There are some leaflets about asthma on the Easyhealth website.
Where can I find easy read information about healthy eating, exercise and being the right weight? There are some leaflets on the Easyhealth website. There are some leaflets on the Picture of Health website.
Health checks are important. They can help find out if you have a health problem. Then the health problem can be treated.
If you are over 14 and social services know you, your family doctor should offer you a health check. If you are not offered a health check, it may be because your doctor is not part of something called an Enhanced Service (ES for short). You can ask your doctor about this. If they are not part of the ES you can ask if another doctor can do your health check.
There is a story written by Tracey about how she supported her husband to get a health check. The story could be helpful for you and your doctor. The story is below.
You should have a health check every year. If you think you have a health problem now, do not wait for your health check. Make an appointment with your doctor to talk about it. Before you go to have your health check it is a good idea to think about what you want to say and what you want to ask. You can use this checklist to help you. Here is another checklist you can use if you like.
It is a good idea to get your sight and your hearing checked. It is a good idea to go to the dentist to get your teeth checked. Some people need to get their feet and toenails checked. Your doctor might talk to you about all these different checks when you have your main health check. Or you can arrange your own checks if you prefer. For example some people like to go to the optician used by other people in their family.
There are some national services to check for different kinds of cancer. Some are just for women and some are just for people in different age groups. Your doctor can tell you if you should take part in these. It is a good idea to take part if you have the chance.
When you have a health check the doctor should tell you what health actions are needed. The doctor may fill out a form. This should become part of your health action plan. The plan might say things you need to do, like take more exercise or stick to a special diet. The plan might say what other people need to do. For example your doctor might need to send you to the hospital for some more checks. Or the nurse might need to check your ears every few months for ear wax.
Your health action plan should fit with your person centred plan (or your Education Health and Care Plan if you are a young person). It is a good idea to show your health action plan to people who support you, like your family or support workers. They could help you stick to the plan. You can find examples of health action plans on the Easyhealth website and on the Picture of Health website. There is another one to look at here.
It depends where you live. In some places the community learning disability team or health facilitator can help you with a Health Action Plan. If you live in residential care or supported living, your support worker may help you. You can ask about how you get a health action plan where you live.
The Equality Act is a law that says services must make changes so that disabled people can use them as easily as everyone else. These are called ‘reasonable adjustments’. We wrote some guidance on reasonable adjustments. The easy read version is on our website.
Giving you easy read information is one type of reasonable adjustment. Another type might be giving you a longer appointment to see the doctor. Or showing you round the right bit of the hospital before you have to go for a check like an X-ray.
A personal health budget is money to pay for your health care. It is based on your health care plan. You decide your health goals with your local NHS team. This means:
you agree the best way to spend the money with your local NHS team. This could be your nurse, doctor or another health person
you know how much money there is for your health care
you have more say about your health care.
Hospitals should make reasonable adjustments so that you can get the care you need. It is a good idea for you to have a hospital book or hospital ‘passport’. This can help the staff in the hospital know how to care for you.
There is lots of information about going to hospital on the easy health website and on the Picture of Health website.
A lot of hospitals have a learning disabilities nurse. Their job is to work with the hospital staff so that they provide better care for people with learning disabilities. They are often called an ‘acute liaison nurse’. You can ask if your hospital has an acute liaison nurse. You can also look at this map.
A lot of hospitals have signed the Mencap Getting it Right charter. The charter says what the hospital has agreed to do to give better care to people with learning disabilities.
Mencap has written easy read guides about your rights to treatment and support if you have problems with your mental health. There is one guide about your rights at home and another guide about your rights if you have to go into hospital for your mental health. You can find the guides here.
If you are not happy with your health care, you should speak up about it and ask for things to be put right. You can ask for help from the Patient Advice and Liaison Service (PALS). You can find easy read information about PALS here. You can ask for the complaints policy. You can find a video and easy read booklets here. You can find some easy read examples on the Picture of Health website and some more here.
Each year the NHS and local councils do a ‘self-assessment’ on how well they think their local health services are working for people with learning disabilities. You can see the latest results here. People with learning disabilities and family carers will have a chance to talk about the results for their local services and to say if they agree or not.
In some areas people with learning disabilities and family carers have set up ‘quality checker’ schemes. Quality Checkers are people who:
are paid to check health and social care services
have a disability or a mental health need, or are family carers
have experience of using services themselves
know what to ask and where to look to find answers. Find out more here.
Every local council area in England has a Local Healthwatch. Their job is to help local people to use their local health and social care services and to comment on local services. They can give you information and advice, check local services and collect information about quality. You can find your local Healthwatch here. There is more information about Healthwatch in this easy read document.
A Clinical Commissioning Group buys (commissions) health services for everyone who lives in their area. Clinical Commissioning Groups should listen to people who use health services and the public, as well as health professionals, when they buy services.
NHS England is a national organisation that buys (commissions) some health services. These are services that are needed by small numbers of people each year.
People who have children often say that all parents have difficulties at times and need a bit of help from other people. Parents with learning disabilities say the same thing. You can find easy read information about being a parent here and here.
Some people with learning disabilities look after a partner or older members of the family like a parent or grandparent. The other person might need help with things like:
Personal care – getting washed and dressed or going to the toilet
Taking the right medicines
Cooking and cleaning
Doing things for fun, or just having company at home.
People who live together often help each other with different things. This is sometimes called ‘mutual caring’. It can sometimes be a bit of a struggle to get the right help for yourself and for the person you care for. It is good to know the right questions to ask. You can find an easy read guide here.