After years of inaction, the needs of NHS patients who have learning difficulties are at last being addressed in an independent investigation. Simeon Brody looks at what it should include
The government reacted quickly to last week’s Mencap report accusing the health service of “institutional discrimination” against people with learning difficulties.
The report, Death by Indifference, details the cases of six people with learning difficulties who it says died unnecessarily because of a “fundamental lack of understanding and respect towards people with a learning disability”.
Health secretary Patricia Hewitt announced an independent inquiry into the six deaths and any wider national implications on the day the report was launched.
The government says the terms of the inquiry are still being drawn up but national director for Valuing People Rob Greig (pictured right) is keen to make sure it is outcome-focused.
Mencap has welcomed the government’s speedy response. Its head of external relations, David Congdon, says the inquiry must first consider the six deaths identified by the report and establish why they occurred and whether there are common factors.
Congdon is particularly keen to establish evidence of “diagnostic overshadowing” in which all health symptoms are attributed to a person’s disability while their real cause is ignored. He suggests this is a particular problem in terms of identifying pain in people with learning difficulties and not listening to the views of parents or carers.
Congdon says the inquiry should also identify the scale of the problem. “How many people with a learning disability are dying in hospital and elsewhere and how many [deaths] could have been avoided?” he asks. He believes the inquiry must be the wake-up call the health service requires to properly help people with learning difficulties.
Into the gap
The need to address the problem has been known for years but no one has yet got to grips with it, Congdon argues. This is illustrated, he says, by the government’s response last week to the Disability Rights Commission’s 2006 Closing the Gap report on the health inequalities faced by people with mental health problems or learning difficulties.
This found that people with learning difficulties were less likely than other people to receive important health checks. In its response, the government says it is committed to “regular” checks but Congdon insists it needs to go further and specify annual checks.
Greig says, although the policy commitment is for regular checks, he would view annual checks as being an “appropriate interpretation” of that.
In 2004 the government promised to bring forward proposals for offering all people with learning difficulties such a check in its strategy Building on the Best: Choice, Responsiveness and Equity in the NHS but this hasn’t happened. Alison Giraud-Saunders, co-director of the Foundation for People with Learning Disabilities, believes they must now be prioritised by the inquiry.
“If only people had health problems identified early an awful lot of these very tragic situations would be avoided,” she says.
Giraud-Saunders also suggests the inquiry considers existing good practice, such as the employment of liaison staff to act as a bridge between learning difficulties specialists and hospitals. And she believes there should be a senior member of staff in each primary care trust who is responsible for tackling the health inequalities faced by people with learning difficulties.
People First self-advocacy director Andrew Lee says the training of healthcare staff is at the heart of the problem. He says doctors are in the habit of talking at people with learning difficulties rather than to them. He suggests people with learning difficulties deliver training for people entering healthcare professions.
“For a person with learning difficulties who communicates with pictures or body movement or sounds, what training is given to help individuals identify whether there is a medical problem?” he asks. And Lee says the training must extend to the presentation of medical information in formats people with learning difficulties can understand.
Greig says he would be “highly surprised” if training were not included in the remit of the inquiry and admits the paucity of relevant training is a “matter of concern”.
Doctors lend support to probe
A college spokesperson said the cases seemed to indicate that standard good practice that should apply for any patient was not being adhered to and said she did not disagree with any of the report’s recommendations.
The BMA’s head of science and ethics, Dr Vivienne Nathanson, said: “People with learning disabilities and/or mental health problems have every right to the same level of healthcare as the rest of the population and, as doctors, we believe it is unacceptable for their needs to be ignored.”
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