Government response awaited after review of NHS care for people with learning disabilities says services are not providing equal access.
eople with learning disabilities are “invisible” to the NHS in England, which is widely failing to meet their needs and deliver their legal right to equal treatment.
That was the damning verdict delivered last week by Jonathan Michael, the former NHS trust chief executive appointed last year by the government to lead a review of access to healthcare for people with learning disabilities.
His report, Healthcare for All, called for change at every level of the NHS. While examples of good practice were uncovered at 20 NHS trusts, the report found many frontline staff were unaware of the needs of people with learning disabilities.
It said inspectors did not focus specifically on services for the group, while managers failed to monitor performance adequately.
Mencap sparked the review with its 2007 Death by Indifference report, which highlighted six cases of people with learning disabilities who the charity argued had died prematurely because of poor healthcare.
Mencap and other campaigners, delighted that the issue is now on the government and NHS’s radar, are waiting for the Department of Health’s full response to the report’s 10 recommendations in the autumn. The early signs were that they would be largely acted upon.
Steve Bennett, acting chief executive of the NHS Confederation, said the NHS “completely accepts the need to urgently address” the problems highlighted by the Michael report. The confederation’s priorities would be to listen to people with learning disabilities and to improve staff training and awareness, he said.
Mencap chief executive Jo Williams particularly welcomed the call for mandatory undergraduate and postgraduate training for clinical staff about learning disability.
Improved training was also emphasised by Mike Ratcliffe, who will shortly become co-chair of government advisory body the National Forum for People with Learning Disabilities.
Williams warned, however, that the required shift will not be achieved for several years.
“The real challenge is how will existing staff, whether it’s nurses, doctors or receptionists, make sure what happens tomorrow follows the recommendations of this report,” she said.
The report found that people with learning disabilities were stereotyped and ignored, and their relatives and carers were sidelined. It called for both parties to be treated as “partners” in the delivery of care.
Williams said the lack of respect shown to carers was a mystery: “It’s almost inexplicable to me that a healthcare professional could be treating a person with learning disabilities and has mum and dad standing there telling them ‘it’s this’, while the doctor or nurse doesn’t listen. That has to change.”
She also agreed with the report’s conclusion that changes in attitudes and practice required effective leadership, and urged NHS trust boards to appoint a lead member to ensure the delivery of good services.
Above all, the report found it was vital that NHS organisations abided by existing legislation, particularly the Disability Discrimination Act 1995 and the Mental Capacity Act 2005.
At the report’s launch, Michael said: “The law is clear – we don’t need a new law. The challenge is for the NHS to work as effectively for people with learning disabilities as it does for everyone else.”
Since 1999, providers have been obliged to make reasonable adjustments for disabled people under the DDA.
The report found that while most services were aware of the need to install features such as ramps and hearing loops for physically disabled patients, few understood the need to make adjustments for learning disabilities – although the report claimed these were “not particularly difficult to make”.
Williams said the best trusts ensured that “information materials are in an accessible format, that receptionists are trained in helping people to get around the hospital, longer appointments are made, and there is a quiet area for people to wait”.
“It’s about taking the initiative to really think through what it might be like for a person with learning disabilities to experience these services,” she added.
To ensure recommendations were followed through, the Michael report said inspectors should ensure their assessments focused specifically on the provision of services to people with learning disabilities.
The Healthcare Commission has focused on the care of people with learning disabilities in specialist health services, through a national audit, which found significant institutional failings were depriving many people of their human rights.
However, the commission’s lead on learning disability services, Fiona Ritchie, said regulation “has a significant role to play” in driving up standards in mainstream services as well.
She said the commission will be publishing a review of how trusts were complying with equality legislation, including the DDA.
Meanwhile, the Equality and Human Rights Commission has called for the Equality Bill, which will come before parliament in 2008-9, to include a requirement for inspectorates to monitor compliance with all equality legislation.
The ultimate goal was not just to improve access to healthcare for the 1.5 million people with learning disabilities in the UK, according to Michael, a former chief executive of Guy’s and St Thomas’ NHS Foundation Trust in London. It was to ensure the NHS remained true to its founding principle, to “deliver universal, fair, equally accessible and effective healthcare to all those who are entitled to receive it,” he says.
● DH should immediately amend core standards against which trusts are judged to include requirement to make reasonable adjustments to provision for vulnerable groups.
● Undergraduate and postgraduate clinical training must cover learning disabilities.
● Inspectorates should develop their monitoring of general health services provided to people with learning disabilities.
● The DH should establish a learning disabilities Public Health Observatory to raise awareness of the risk of premature avoidable death.
● Better data collection to allow people with learning disabilities to be identified by the health service.
Related articles: NHS failing to treat people with learning disabilities equally
Carole Foster, 51, had a mild learning disability and the mental age of an eight-year-old after suffering brain damage at birth.
In May 2006 she was admitted to hospital with gallstones, but sister-in-law Wendy Edwards said that due to a “catalogue of errors” she did not receive proper treatment.
Information was not shared about the original diagnosis and there was confusion over her condition. Carole became frightened and, after suffering a relapse of manic depression and schizophrenia, was moved to a psychiatric unit.
She eventually underwent operations to remove the gallstones and subsequently a hernia. But over four months in different hospitals, Carole’s condition deteriorated and she died in October 2006 from pneumonia, septicaemia and multiple organ failure.
“We strongly feel that Carole died prematurely,” Edwards said.
“If the doctors had removed her gallstones at the outset, she would still be with us. She wasn’t able to explain the pain she was in, and by the end she was in agony. She wasn’t given any painkillers in five months, and never recovered from the trauma.
“I trusted the nurses and doctors but we were shown total disrespect. We felt helpless.” The support workers from the local authority knew Carole’s background inside-out, but they had no voice whatsoever.”
Edwards believes the Michael inquiry is a major step forward in preventing similar cases in future.
“I feel very hopeful about the steps that have already been taken by the NHS trusts in our area,” she said.