Jim Blair is unequivocal about why the welfare of people with learning disabilities warrants attention. "It is really important that we look at this as a human rights issue," he says. "A joint parliamentary committee report on human rights in 2008 effectively found this country guilty of violating the human rights of people with a learning disability. And [a year later] you had the [health] ombudsman saying that, at best, services were patchy and, at worst, an indictment of society. That's incredible."
After a 20-year career in the NHS working with learning disabled patients, Blair is familiar with the catalogue of problems they have faced, from sub-standard care to serious neglect leading to premature deaths. As a result, the consultant nurse has made it his mission to spearhead innovative improvements to care, including a "patient passport" that allows medical professionals to instantly access vital patient information.
Cognisant of recent revelations about abuse of adults with learning difficulties at Winterbourne View hospital near Bristol, and a series of reports from the charity Mencap about avoidable deaths in the NHS, Blair speaks with a visceral urgency about what he and others are doing about the longstanding failures of the healthcare system to provide for people with learning disabilities.
Massive improvements
There are no justifiable reasons for the ongoing inequality of healthcare experienced by so many vulnerable people, Blair says. By doing something as simple as "really listening" to people and their carers and "directly involving" them in the shaping of care, "massive" improvements can easily be made, he insists. The first big mistake is to regard the 1.5m people with learning disabilities in the UK as a marginal group. They are more likely to visit hospital each year than the wider population, he points out.
Blair thinks it is a "mindset" of a system that has traditionally been reticent to acknowledge the value of direct patient involvement. "If we don't involve carers and the people themselves, we do people a disservice; they have poor care," he insists.
Blair makes changing the system sound surprisingly simple. That, he says, is exactly the point. He reels off a long list of adjustments he has helped introduce at St George's since he was appointed the first acute care nurse consultant in the UK for learning disability at the south London hospital around three years ago. The list ranges from making sure visiting hour restrictions are waived for carers, to implementing strict pre-admission protocols, improving routine co-operation between doctors and other staff, and making sure staff comply with the "reasonable adjustments" for vulnerable groups required by legislation.
The creation of a nurse consultant has proven especially effective, he says, because it comes with real authority. "My role here is around the accountability and responsibility and leading the clinical direction of a patient's journey. So I will be involved in protecting a bed in advance of an admission and blocking discharges if I deem them unsafe."
The patient passport – a document carried by people with learning disabilities and their carers that contains information useful to medical professionals – has been a particular success. He gives an example of a young man with Down's syndrome who the admitting physician instructed should be "nil by mouth". When Blair checked the reason, the doctor explained that the passport mentioned the man sometimes regurgitated food. "Absolutely perfect. Here's the essence of the change and why the passport is so important," says Blair. "He and his carer have written that in. They are involved in the care and treatment by the fact that information is in the system. The doctor might well have missed that."
What inspired Blair to help bring about decisive change in care provision was a landmark Mencap report, Death by Indifference, in 2007, which highlighted shocking cases of patients with learning disabilities dying in hospitals because proper protections were not in place. The report exposed a "lack of leadership, responsibility and accountability in hospitals around the country", Blair says. Mencap did "a very brave thing", launching the report, he adds. "I was there. The mood was that this was a revolutionary moment."
Five years on, Blair, now also a senior nursing lecturer who holds a range of advisory posts, including one on the Care Quality Commission panel for investigations into care homes, says that while there have been noticeable improvements in the NHS "a lot more" remains to be done – as demonstrated by the latest Mencap report, published on Wednesday.
There continues to be a failure of training, shortsighted management of hospitals, and a "lack of leadership" on learning disability at a national level, he says.
"Nursing education has failed nurses, and it has failed the public … we haven't got to grips with making sure it should be mandatory that all nurses have a significant amount of training in working with people who require safeguarding issues. I think the lack of training of nurses – and other health professionals – has led [them] to feel not confident, ignorant to some extent. So it's easy to see how things can go wrong."
Big impact
Specialist learning disability nurses can have a big impact on the quality of care by "challenging poor practice, and guiding and supporting colleagues", he says. Yet, there is a reduction in the number being trained. "If nothing is done in the very near future to remedy this, the health inequalities experienced by people with learning disabilities are only going to get worse," he warns.
Managers in many hospitals are wrongly fearful that appointing a dedicated consultant nurse to oversee treatment for patients with a learning disability and introducing programmes such as passports, will prove expensive. But Blair points out that it is the opposite. "What isn't cost effective is not having someone [in that role], and having [to have] investigations all the time. You lose your reputation. But that's nothing compared to the loss of someone's life or quality of experience. Why should people suffer poor care just because they've got a learning disability?"
Blair says there is a growing impetus for change in the health system and within communities, and that the government should concentrate on recommending pragmatic initiatives such as having a national panel for learning disability that includes people with a disability and their carers.
He believes a "tipping point" has been reached for advocates and for people with learning disabilities. "We are getting a bigger voice. We are getting listened to more – and that's a very good thing."