Let down by the NHS

A new Mencap survey confirms that people with learning disabilities receive worse health care than others. But specialist posts are making a difference, reports Mithran Samuel

Mark Cannon died in August 2003, aged 30. After an operation to fix a broken thigh bone, he contracted an infection and suffered a heart attack. While his stated cause of death was bronchopneumonia, the local government and health ombudsmen found last year that the underlying cause was service failure, related to his severe learning disability.

Staff at Barking, Havering and Redbridge Hospitals NHS Trust did not make reasonable adjustments to meet his complex needs. His condition was inadequately assessed, monitored and recorded, and his pain inadequately managed.

The trust apologised for Mark’s treatment and paid compensation to his parents. But a Mencap survey of over 1,000 doctors and nurses, published this week, shows the problems his case illustrates remain.

Almost half (46%) of doctors and 37% of nurses say learning disabled receive poorer care than others.

And 35% of respondents had not been trained in making reasonable adjustments to support people with learning disabilities, such as extended appointments to help them communicate their needs.

Such adjustments have been required since 1999 under the Disability Discrimination Act 1995. The findings come despite four high-profile reports on the issue since 2006.

The Disability Rights Commission’s Equal Treatment: Closing the Gap study (October 2006) found people with learning disabilities were more likely than others to develop conditions such as obesity and respiratory diseases but less likely to receive adequate treatment or be offered health checks.

Mencap’s Death by Indifference report (March 2007) pointed to six people with learning disabilities who it alleged had died prematurely due to discriminatory care, including Mark.

Jonathan Michael’s inquiry for the Department of Health (July 2008), sparked by Death by Indifference, found health staff had very limited knowledge about learning disability and reasonable adjustments.

Its recommendations – accepted by the DH last January – included mandatory training for staff in learning disabilities, annual health checks for people with learning disabilities and action to ensure services made reasonable adjustments.

And last March, the ombudsmen published a review of the six cases highlighted by Mencap, which called for all health and social care organisations in England to urgently review their services for learning disabled people.

Against this backdrop, Mencap’s results appear disappointing, and the charity is using them to urge health bodies to sign up to a charter of good practice.

But chief executive Mark Goldring is optimistic about progress. He suggests Mencap’s findings reflect how the charity and others have raised awareness of discriminatory treatment among health professionals.

Anne Williams, the DH’s national director for learning disabilities, says the service reviews ordered by the ombudsmen last year indicate progress is being made in every region in providing healthcare for the client group, though “there is clearly more to be done”.

Goldring hails the introduction of incentive payments for GPs to carry out annual health checks for people with learning disabilities last year, as recommended by Michael, with a performance indicator to assess primary care trusts on take-up.

Williams says there was a 60% rise in checks from 2008-9 and 2009-10. But she says just half the money allocated for checks was used and that she expects to see further improvements in 2010-11.

Providing every learning disabled person with an annual check is part of Mencap’s charter, as is ensuring every hospital has a learning disability liaison nurse to support patients and their families and promote reasonable adjustments.

Ann Norman, the Royal College of Nursing’s nurse adviser for learning disabilities nursing, says they are becoming more prevalent, though it is not clear how many posts there are nationally.

St George’s Healthcare NHS Trust in south London has gone further by appointing a nurse consultant in learning disabilities (see box, previous page). Postholder Jim Blair says the DH should urge others to follow suit, adding: “This job would not have had the impact it has had if it was not at consultant level.”

Blair’s role includes training other staff in learning disability. Norman, who served on the Michael inquiry, says its recommendation on mandatory staff training is “work in progress” in nursing and that she would like to see “much more awareness about learning disability” in core training.

Williams admits it will be a “challenge” meeting the training needs identified by the Mencap survey, though says she has seen “excellent, tailored training” delivered by liaison nurses.

Goldring says government leadership on the issue will have to be maintained. Decisions for the coalition include whether to continue with the health checks scheme, due to expire in 2011. Williams says she wants to see checks “routinely offered” to learning disabled people and says the government will have to work out the “most sustainable” way of doing this.

Goldring says care services minister Paul Burstow supports the agenda but “very explicitly won’t make a commitment” on next steps.

In the current public finance environment, this is understandable. But Goldring adds: “We are urging that we take a long-term view. We’ve got to get better at saying ‘this is what works and this will make bigger savings over the long-term.”

Case study: Jim Blair, consultant nurse, learning disabilities, St George’s Healthcare NHS Trust, south London

Jim Blair’s response to Jonathan Michael’s damning 2008 report into the healthcare of people with learning disabilities was to tell directors at St George’s Healthcare NHS Trust that they needed to appoint a consultant nurse responsible for the client group.

At the time he was a senior lecturer at the adjoining faculty of health and social sciences at Kingston University/St George’s University of London. The directors were convinced and Blair was duly appointed to the position in October 2008. Trust director of nursing and patient safety Alison Roberston says the post has had a positive impact on the care and experience of learning disabled patients.

Blair has dealt with 375 referrals so far.

“I’m responsible and accountable for how people with learning disabilities are treated and ensuring they get the treatment they require.”

Blair, who is a qualified social worker and learning disability nurse, is a powerful figure at the trust. He can block the discharge of learning disabled people deemed medically fit to leave if he feels that would not be safe, and can reserve beds for patients in advance; he also presents regularly to the trust board.

Key to this clout, he says, is the fact that his post is at consultant level – unlike the learning disability liaison nurses more commonly found in hospitals.

Among the innovations he has introduced is the hospital passport, a document containing information on people with learning disabilities to enable staff to treat them appropriately and make reasonable adjustments.

It contains “red” information, on issues like how people express pain, important “amber” information and “green” likes and dislikes. People with learning disabilities are asked for their passport as soon as they enter the hospital; if they don’t have one, the trust provides one.

Blair is convinced it has saved lives.

“We had a lady who had written on her passport that she was allergic to eggs. This led to a nurse phoning the care home where she lived to check whether eggs would cause an anaphylactic shock, which could be life-threatening.”

His work also illustrates the importance of reasonable adjustments. He recalls a kidney patient with Down’s syndrome who was not complying with his dialysis, adding: “It was because of the noise of the dialysis machine. We arranged for him to listen to music through headphones and have his mother present through dialysis and he now attends happily.”

Blair’s work is backed by Lloyd Page, who serves on a user and carer panel set up to scrutinise the trust’s services for learning disabled people. “Doctors and nurses tend to speak to carers, not the person with a learning disability. But Jim listens to us.”

Case study: Brenda and Luise Ridout, Devon, England

When Louise Ridout, who is profoundly learning disabled, was rushed to the Royal Devon and Exeter Hospital in Wonford with a life-threatening bout of pneumonia in 2008, there were several barriers to her receiving the care that she needed.

Mother Brenda Ridout says: “She had no means of telling them what was the matter. There was no indication from her of what was the matter. She’s so terrified of things like blood tests, there was no way people could get near her.”

She says Louise’s medical team’s persistence was, however, key in ensuring that she received the treatment she needed.

“They just pressed on until they got the job done. She needed a catheter fitted and it took three attempts because she was fighting it. They kept doing tests until they knew what it was. They were very good to her.”

The pneumonia was finally diagnosed following a CT scan.

Another key factor was the fact that the hospital had a learning disability liaison nurse, who provided a link between Louise and her family and the medical team and helped make reasonable adjustments.

For instance, Louise was placed in a single room, not on a ward, as her lack of communication meant Brenda and the family had to be there around the clock.

“At one point, they said they needed the room,” Brenda says. “The nurse went and sorted it so that we moved to another ward but into another single room. That wouldn’t have happened had the nurse not been there.” She says the nurse kept her informed of what was going on at all times.

Thankfully, there have not been any repeat episodes since, and Brenda also praises the primary care received by Louise, who lives away from her family at a care home in Dawlish in Devon.

This article is published in the 24 June issue of Community Care magazine under the heading Let down by the NHS