Health Care

The Health Care evaluation makes interesting reading. Our members were particularly concerned to note the question about the main cause of death being quite different for people with learning disabilities and from those who don’t. Even the type of cancers that lead to death were particularly different for people with learning disabilities from the rest of the population.
This did raise a question how much this was due to the high mortality rate amongst those who have more complex disabilities. We think further research is needed on the health profile of people with learning disabilities but that also includes more information of the range of needs of people with learning disabilities. It wouldn’t be right to treat everyone with a learning disability the same when there actually is a wide range of needs.
As a result we are in favour of
o Better information of the nature of health challenges faced by people with learning disabilities. Such information should be aimed at both people with learning disabilities themselves but also at professional staff so that they are better informed about what to look for. The use of personal health information “passports” should be standardised so that medical staff are better equipped to use them. Again this is a job for a central “Development Agency.”
o Better training for healthcare professional on disability awareness. We have often heard about doctors and other medical staff speaking over the head of the person with a learning disability even when they are well able to communicate their needs. The language used by medical staff is often jargonised and hard to follow. Some simple steps on how to communicate with people with learning disabilities would be a good first step.
o Liaison Nurses: Since the same as you, Fatal Accident inquires have recommended that Learning Disability Liaison nurses be employed to support individuals in hospital. The Health Scoping report comments on this only briefly. This worries us as for people with complex needs and that can include people with milder learning disabilities but significant health challenges, communication and negative staff attitude pose life threatening dangers. We are aware of the Lothian research which emphasises the importance of this role. We carried out a study a few years ago which showed that few health boards had taken this on board and of those that had many had employed so few Liaison nurses that it would be impossible to be effective. Many health boards simply declared their Community Learning Disability Team, the liaison body. This is completely inadequate and misses the point made in the FAI reports. An active Liaison nurse is needed upon entry to help diagnose and identify people with learning disabilities not just to help those already known. As with many things, the answers to good care is already known – what we are missing is someone to implement it and challenge those who fail to do so.

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