It has taken five reports and four years, but the government has finally agreed to provide annual health checks to people with learning disabilities in England, although there is still no date for a launch.
Action on the ground in England has been slow despite a series of hard-hitting research reports showing that people with learning disabilities are more likely to develop health conditions, and die of them more quickly, than the general population. Checks have been provided in Wales since 2003 but are not available in the rest of the UK.
Back in 2001 Valuing People proposed annual health checks and the initiative was then promised in the Department of Health 2004 strategy document Building on the Best: Choice, Responsiveness and Equity in the NHS. Finally, in September health secretary Alan Johnson announced the commitment to providing annual health checks. The proclamation emerged as part of ministers’ response to a damning government-commissioned independent inquiry into healthcare for people with learning disabilities published in July, carried out by Jonathan Michael, former chief executive of Guy’s and St Thomas’ NHS Foundation Trust.
The inquiry found people with learning disabilities were suffering unnecessarily and in some cases dying because of failings by the NHS in England. The subsequent report, like the documents before it, highlighted health checks as one way to tackle this inequality.
Michael’s investigation was triggered by Mencap’s 2007 Death by Indifference report, which highlighted six cases of people with learning disabilities who, the charity argued, had died partly because of poor healthcare. It also came after the Disability Rights Commission threatened legal action against the government under disability equality laws after carrying out a major piece of work in 2006, Equal Treatment: Closing the Gap, uncovering widespread discrimination by the health service.
Mencap has long campaigned for the annual checks and the charity’s head of campaigns and policy David Congdon describes the announcement as a victory.
“All evidence shows that health checks uncover a lot of unmet health need and the experience in Wales shows that a second check a year later uncovers even more [undiagnosed conditions], which means that problems start to get dealt with,” he says.
Research from the Welsh Centre for Learning Disabilities backs this up: it shows health checks are highly valuable, uncovering problems ranging from poor vision and hearing to more serious conditions such as post menopausal bleeding. It also found that more than just a one-off check needs to take place.
The English scheme is expected to be similar to that in Wales where health checks have two parts. Practice nurses first go through basic healthcare questions with patients concerning issues such as their weight and diet and then carry out checks including blood pressure and listening to patients’ chests. Doctor then carry out physical examinations.
Liz Neal, director of Mencap Cmyru, says overall the scheme has gone well, but it took some time to bed in. Not all GP surgeries were enthusiastic from the outset, she adds.
“In the first year some people said they got a letter entitling them to a health check but then the surgery didn’t seem to know about it. But other people had good experiences,” she says.
GPs in England will receive £100 for each check they carry out but, as in Wales, they will be able to opt out of providing the service. Some are disappointed with plans for it to be voluntary. Andrew Lee, director of People First Self-Advocacy, a group run by and for people with learning disabilities, says: “Because it’s optional some GPs will think they don’t actually have to do it. I would push for this to be a requirement.”
But Congdon is confident the checks will take place. Instead, he sees a greater challenge: that of changing the negative attitude towards people with learning disabilities in the health service.
“We have to get across to all 1.3 million health service staff that they need to value the lives of people with learning disabilities. They need to be aware of the fact that it is not only wrong, it’s also against the law to discriminate against them,” he says.
The issue of diagnostic overshadowing, where health professionals incorrectly attribute symptoms to people’s learning disability rather than a medical problem, is another major issue. Because 80% of diagnoses are based on what people tell doctors, this is most prevalent among those who are unable to communicate verbally.
Health professionals need to be more aware that they may need to intervene earlier when someone can’t communicate verbally, because often by the time they’re diagnosed it’s too late, says Congdon. He adds that they also need to be more aware of indications of distress.
“If someone is clawing at their face it’s most likely that they’re in pain and has nothing to do with the fact that they have a learning disability,” he says.
It is not yet clear if newly formed health and social care regulator the Care Quality Commission will build the scheme into its inspection framework.
Congdon sees this as essential and says Mencap has been assured next year’s annual operating framework for the NHS will “contain messages for primary care trusts to get their act together”.
The annual health check pledge is set to be included in the forthcoming learning disability policy document Valuing People Now along with ministers’ responses to Michael’s other nine recommendations. The government is expected to act on them all, so it looks like health inequalities for people with learning disabilities could finally be tackled.
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