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Better Health and Care for All - Easy Read

Health and Social Care Services Research

06.02.20

doi: 10.3310/themedreview-04328

Health and Care services for people with learning disabilities

Easy read summary

 

 

 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
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
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
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.
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

Section 1: Spotting health risks
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:
  • Know the person really well
  • Have special training
  • Visit people at home if they prefer
  • Include family, friends or carers when they do the check
  • Phone people to remind them when the Check will be
  • Explain what they are doing, and why
  • Link the check with a Health Action Plan if there is one

What can you do?
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
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
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.

Epilepsy
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
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
Lots of people with learning disabilities have depression and other mental health problems.
We do not know why.
Good ways to support people include:
  • Offer interesting things to do
  • Train therapists to adapt their approach to suit people with learning disabilities.
  • Help regular carers to support people to take exercise, sleep better and solve problems.
  • Support people when someone close to them dies.

Managing anger and aggression
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?
  Find out what services there are to help you keep healthy in mind and body!

Section 3: Staying well and safe in hospital
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.
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
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
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.

 
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.
  • Only 1 in 3 people in staffed houses get consistently good support to do the things they want to do.
  • On average people spent three quarters of their time alone.
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

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?
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
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
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
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.

Self help and self-advocacy
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
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

NIHR Evidence is covered by the creative commons, CC-BY licence. Written content and infographics may be freely reproduced provided that suitable acknowledgement is made. Note, this licence excludes comments and images made by third parties, audiovisual content, and linked content on other websites.

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