This site is intended for health professionals only

Better healthcare for people with a learning disability

Rosemary Frazer
Campaigns Officer
Mencap
123 Golden Lane London
EC1Y 0RT
T:020 7454 0454
F:020 7696 5540
E:information@mencap.org.uk
For further detailed ­information about the Treat Me Right! campaign visit: www.mencap.org.uk/treatmeright

People with a learning disability have poorer health compared with others who use health services and are more susceptible to certain conditions as a result of having a learning disability. That they are more prone to certain health problems would suggest that they need greater attention paid to their health than others, but research shows that they do not get adequate access to healthcare and that the healthcare they do receive often fails to address their health needs and in some cases can lead to premature death.

Health issues of those with learning disability
People with a learning disability are more likely to die before the age of 50 due to a range of health factors.(1) Research has shown they:

  • Are three times more likely to die from ­respiratory disease.
  • Have a higher risk of coronary heart disease.
  • Have higher rates of gastrointestinal cancer and stomach disorders.

There are other health issues affecting this group of people much more than in the wider population:(2)

  • Epilepsy - 22% of people with a learning disability have epilepsy, compared with 1% in the general population.
  • Dementia - 21.6% of people with a learning disability have dementia, compared with 5.7% of the general population.
  • Schizophrenia - 3% of people with a ­learning disability have schizophrenia, ­compared with 1% of the general ­population.
  • Thyroid problems - people with a learning disability have a greater risk of having ­thyroid problems, particularly those with Down's syndrome.

These are just some of the health problems more prevalent in people with a learning disability, but there are other important factors, such as being in a disadvantaged group with very low employment and therefore on a low income. Many people with a learning disability live in group homes or supported living and are less likely to be able to make the same choices about their diet or taking exercise in a gym as they are so much more dependent on others for their meals and which activities they can take part in.

Health experiences
The treatment provided for people with a learning disability has been less well researched than their health problems. The evidence that is available highlights certain areas of concern, which Mencap believes needs to be urgently addressed.
Lack of training among health professionals has been highlighted both by those working in the field of health and by people with a learning disability. There is a great lack of awareness on the part of health professionals of the additional health needs of people with a learning disability. This is coupled with a lack of awareness of what a learning disability is and how best to communicate with someone who presents themselves for treatment. Two examples taken from Mencap's Treat Me Right! report - see Case studies, overleaf ­- are good illustrations of how a lack of training and disability awareness can impact on the healthcare provided.
The need for better training of primary care teams was highlighted by the NHS Executive in 1999. Research carried out on behalf of Mencap of 215 GPs for Treat Me Right! found that 75% had been given no training at all to help them treat people with a learning disability.(4) The government set out plans for improving the health of people with a learning disability in Valuing People, stating that everyone with a learning disability should be registered with a GP by June 2004 and that Health Action Plans should be drawn up so that everyone responsible for an individuals healthcare should be aware of their needs and the appropriate treatment they should be given. The Health Action Plans would also give individuals a greater choice in, and control of, their own healthcare. However, with the training needs of health professionals not being addressed, it is difficult to see how the current situation is going to change unless the government puts pressure on primary care and hospital trusts to put in place comprehensive training that will meet the health needs and encourage better communication with people with a learning disability.

Good practice
There are many areas of the country were there are very good examples of how to provide better healthcare for people with a learning disability. Below are just a few Mencap has found as part of the Treat Me Right! campaign.

Access to healthcare
The British Institute of Learning Disabilities (BILD) is working with Sandwell Health Authority and the University of Birmingham to find out what helps people with a learning disability get access to good-quality healthcare. As a part of this work, Sandwell Health Authority is consulting with staff, service users and families before introducing changes that will make it easier for people with a learning disability to get the healthcare they need.

Going into hospital
"Let's Be Patient" is a video aimed at doctors and nurses. It explains how to treat someone with a learning disability who is going into hospital. There is a workbook that goes with the video. It encourages healthcare professionals, such as doctors and nurses, to think about the issues confronting a person with a learning disability in hospital.

Communication
"Can I Make an Appointment Please?" is a pack for people with a learning disability and primary care staff, like doctors and nurses. It aims to improve the health and wellbeing of people with a learning disability. It contains information about learning disability and how to communicate better.

The way forward
While it is encouraging to see so many positive examples of good practice, it is simply not enough. Good practice often depends on the efforts of individuals to implement procedures at a local level, and what often happens is that when these individuals move on to other jobs the good practice ends. Unless good practice is rolled out on a strategic basis, the efforts and valuable experiences of individuals are lost.
Mencap has made a number of recommendations to improve the healthcare provided to people with a learning disability, including:

  • Better training in learning disability for all ­healthcare staff.
  • Longer appointments to allow patients to explain their health needs.
  • Accessible information to be provided in all healthcare settings.
  • All health records should show that someone has a learning disability. It is vital that medical ­information should explain that someone has a learning disability.

Good health services should be available to everyone, especially if, like some people with a learning disability, there are greater health needs. There are clear policies in place to ensure this specific group are able to use mainstream health services such as those set out in Signposts for Success, Once a Day, All Means All and Valuing People. The challenge now is to ensure these policies and procedures are fully implemented across the health service if we are to avoid the tragic experiences uncovered in the Treat Me Right! report.

[[nip18_box1_48]]

References

  1. McGuigan SM, Hollins S, Attard M. Age-specific standardized mortality rates in people with ­learning disability. J Intellect Disabil Res 1995;39:527-31.
  2. Institute for Health Research at Lancaster University. Key highlights of research evidence on the health of people with ­learning ­disabilities. Lancaster University: 2002.Available from: www.valuingpeople.gov.uk/documents/KeyHighlights.pdf
  3. Mencap. Treat Me Right! London: Mencap; 2004. Available from: www.mencap.org.uk/
    html/treat_me_right/report.htm
  4. NHS Executive. Once a Day. London: DH; 1999. Available from: www.dh.gov.uk/
    assetRoot/04/04/27/79/04042779.pdf