Health and Care services for people with learning disabilities
Easy read summary
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This Report is about research into learning disabilities. |
This research was paid for by the National Institute for Health Research. | |
This is the Easy Read Summary. | |
There is more information in the full report. |
Contents |
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Why is this report important? | Page 4 | |
Services | Page 6 | |
What the report says | Page 8 | |
Section 1 – spotting health risks | Page 8 | |
Section 2 – Keeping well | Page 12 | |
Section 3 – Staying safe and well in hospital | Page 20 | |
Section 4 – services supporting positive behaviour | Page 20 | |
Section 5 – Doing research with people with learning disabilities | Page 22 | |
Section 6 – What next? | Page 23 | |
Why this Report is important |
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This Report is important because health and care services have to do better for people with learning disabilities | ||
Over one million people in England have a learning disability. | ||
But many people with learning disabilities die around 20 years earlier than other people. | ||
Lots of people with learning disabilities have a bad diet and are overweight. | ||
Many people also have mental health problems. | ||
Sometimes doctors do not spot serious illnesses like dementia because they think it is part of having a learning disability. | ||
Lots of people with learning disabilities are given drugs to control their behaviour – this can damage their health. | ||
Services |
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Most people with learning disabilities use the same health services that everyone else uses. | ||
The law says services should make ‘reasonable adjustments’ to make sure they work well for people with learning disabilities. | ||
However, lots of research and reports show that this does not always happen. | ||
Health staff often do not have training to understand how to work with people with learning disabilities. | ||
Sometimes different services do not work well together.
For example, GPs do not talk to the hospital enough. |
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Sometimes health staff do not listen to the person with a learning disability or to the people who know the person best. | ||
Sometimes there are not enough specialist services for people who need more care. | ||
The NHS 10 Year Plan says all this must change. | ||
There is a lot to do if people with learning disabilities are to enjoy better health and better lives. | ||
This Report shows how we might start on making things better. | ||
What the Report says |
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Section 1: Spotting health risks |
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To make people’s health better, it is important to find health problems early. | ||
The Government pays GPs to do a special Annual Health Check for people with learning disabilities. | ||
The research says this is a good way to find health problems early. | ||
People who have a health check every year were less likely to need to go to A and E than people who did not get this check. | ||
Health Checks are good at finding problems with eyesight, hearing, diabetes, heart conditions, swallowing and breathing. | ||
Only just over half the people who have a learning disability get a health check (55%). | ||
It is important that more people get Health Checks. | ||
It can help if doctors: | ||
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What can you do? |
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Ring up your doctor and ask if you can have a learning disability annual health check. | ||
Ask the doctor to explain things slowly and in simple words. | ||
Ask the doctor to write things down so you can show someone you trust if you do not understand. | ||
Ask the doctor ‘am I on the learning disability register?’. | ||
Find out about health passports and health action plans | ||
Section 2: Keeping well |
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People with learning disabilities cannot always use services which help people to keep well. | ||
These services need to do more to make it easy for people to use them. | ||
It can help if people can see the same person every time. | ||
Swallowing |
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Many people with learning disabilities have problems with swallowing. | ||
Good support at mealtimes can prevent this. | ||
GPs need to ask about this at the Health Check.
GPs must make sure that if there are any problems, people get quick treatment. |
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Epilepsy |
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Lots of people with learning disabilities have epilepsy. | ||
It is important that nurses have the right skills to treat people with epilepsy and to support them and their carers to manage it. | ||
Healthy weight |
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Lots of people with learning disabilities are overweight. | ||
Some have diabetes which no one knows about | ||
We still need to find good ways to support people with learning disabilities to keep a healthy weight. | ||
Easy Read information and regular support will help. | ||
Staff who support people with learning disabilities with cooking and eating need to help them choose and prepare healthy food. | ||
Mental Health |
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Lots of people with learning disabilities have depression and other mental health problems. | ||
We do not know why. | ||
Good ways to support people include: | ||
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Managing anger and aggression |
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Some people get angry and aggressive. | ||
Researchers have tried different ways to help people manage their feelings. | ||
These have made some difference for some people, but none work for everyone. | ||
What you can do? |
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Find out what services there are to help you keep healthy in mind and body! | ||
Section 3: Staying well and safe in hospital |
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We know from research that hospitals can do more to prevent people dying early. | ||
This includes identifying people with learning disabilities when they are staying in hospital.
Not all hospitals do this. |
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A study of six hospitals showed many staff are not confident about working with people with learning disabilities. | ||
But learning disability nurses working in hospitals made a difference. | ||
We do not know what effect other recent changes, such as personal health passports, have made in improving care. | ||
Special aids might help hospital staff work with children with learning disabilities. | ||
What you can do |
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If you have to go to hospital ask to speak to the Learning Disability Nurse before you go | ||
Make sure you have a Hospital Passport and it is up to date | ||
Make sure the hospital knows if you want a friend, family member or carer to help you while you are in Hospital out-patients. | ||
Section 4: Services supporting positive |
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Lots of research looks at ways to support people whose behaviour challenges others, because it is violent or angry. | ||
A lot of this research looks at using Positive Behavioural Support.
This is a person centred method to help people change their behaviour.
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Positive Behavioural Support can be useful, but it does not always work. | ||
It is important that the whole staff team and the people who support the person work together. | ||
One study in over twenty group homes found things that staff could do differently to make care better. | ||
This led to less difficult behaviour in two thirds of people living there. | ||
Some research also found that being left alone or bored can lead to behaviour which challenges others. | ||
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We need more research into how people with behaviour that challenges can be well supported in the community. | ||
This research needs to last several years. | ||
Section 5: Doing research with people with learning disabilities |
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It’s important that health research includes people with learning disabilities as co-researchers and participants. | ||
Many of the studies included in this Review show how to do this well. | ||
Section 6: What Next? |
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This Report shows some good ways to help people with learning disabilities live longer and healthier lives | ||
It also points to more research we need to do. There are some examples here. | ||
Health Checks |
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We need research on how more people can have health checks. | ||
We need research on how to get doctors to do really good health checks. | ||
Stages of life plans |
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We need research into how care plans can help when young people move into adult services. | ||
We also need to know what older people with learning disabilities need. | ||
This includes support for families as they and their adult children with learning disabilities get older. | ||
Keeping well |
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We need more research with people living at home and in group homes in the community. | ||
This includes best ways to help people stay active, eat well and cope with feeling down or angry. |
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Self help and self-advocacy |
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We need research on how people with learning disabilities support other people with learning disabilities to manage their health better. | ||
Self-advocacy groups do a lot already. | ||
My Life My Choice run a Walking Group. | ||
Carmarthenshire People First have a healthy eating group. | ||
A Last Word from My Life My Choice |
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It is good to have this Report. | ||
There are some good things out there which support people with learning disabilities to have good lives. | ||
We also know that lots of people with learning disabilities are still not getting the right support and care that they need. | ||
Too many are dying too early and not having the best life they could. | ||
If we knew more about the reasons why and how things affected people, we could plan better for the future and make sure that people could enjoy good lives. |
Produced by the University of Southampton on behalf of NIHR through the NIHR Dissemination Centre