“Even when all the other factors have been taken into account, the disparity in mortality between people with and without learning difficulties is alarming” – Bishop of Carlisle, 12/6/14
On 12th June, the House of Lords debated a motion from Baroness Hollins: ‘To ask Her Majesty’s Government what action they are taking to address the health inequalities found by the Confidential Inquiry into Premature Deaths of People with Learning Disabilities’. The Bishop of Carlisle, Rt Rev James Newcome, who is the lead CofE bishop for healthcare issues, spoke in the debate. He highlighted the need for greater monitoring of the causes of health inequalities for those with learning disabilities, better training for health professionals and improved advocacy and service design, especially to involve patients.
The Lord Bishop of Carlisle: My Lords, in this debate we are asking Her Majesty’s Government to do three things. The first is to recognise the situation that currently exists, as we have heard, with regard to people with learning disabilities. It has been pointed out that the situation is one of considerable inequality. Even when all the other factors have been taken into account, the disparity in mortality between people with and without learning difficulties is alarming. There does not appear to have been any significant change in this disparity over the past decade or more. The statistics speak for themselves. They have already been quoted more than once so I will not repeat them.
Of course, there have been some positive changes since the confidential inquiry, including some proactive adjustments and some sharing of best practice. However, as the main causes of premature mortality have been identified and are largely avoidable, there is a clear need for a change in healthcare culture—or, as the noble Lord, Lord Rix, called it, a change in attitude. The current quality and effectiveness of health and social care given to people with learning disabilities is deficient in various ways, including the provision made for attendance at clinic appointments and investigations. The issues are indeed complex, but not impossible. Recognising the problem must be the starting point for change at both national and local level.
Secondly, we are asking Her Majesty’s Government to collect some further information, not least through the central body that has been referred to. In particular, we need to know about the number and location of learning disability liaison nurses, who provide a wide range of vitally important services and support to people with learning disabilities. These nurses have been shown to make a huge difference, for instance by research done at St George’s Hospital, University of London. In some areas, they are key members of community learning disability teams. They provide advocacy and help to patients, advice to doctors and other healthcare staff, and assistance to carers and their families. One in 50 people in this country has a learning disability, but some trusts employ no learning disability nurses.
It would also be helpful to know why, as the noble Baronesses, Lady Hollins and Lady Andrews, observed, less than a quarter of those with learning disabilities in England are recorded as such on GP registers. That has implications for critical referrals to specialists, as well as to palliative care services. There seems to be no system at the moment to identify individuals with learning disabilities who have a life-limiting condition.
Thirdly, we are asking Her Majesty’s Government to take immediate action in certain areas. They include ensuring that healthcare staff are adequately trained in caring for those with learning disabilities—a point made by the noble Lord, Lord Ribeiro. As it happens, that is another potential role for learning disability liaison nurses and a further argument in favour of having as many of them as possible, and at least one per trust. It is vital to ensure that there is no discriminatory thinking about quality of life, and to provide those with learning disabilities with equal access to healthcare.
The second area for action is informing patients, carers and families about the existence of community learning disability teams where they exist. Many are currently unaware of the potential help that they so desperately need and which could be available to them.
A third area for action involves promoting advocacy of various kinds for people with learning disabilities not only by healthcare professionals but by the voluntary sector. I have recently been involved with the commission looking into the effects of welfare reform in Cumbria. One of our principal findings has been that advocacy—usually unpaid—for some of the most vulnerable people in our society is crucial to their mental and material well-being. I think that the noble Lord, Lord Ribeiro confirmed that the same applies to those with learning disabilities who are in need of healthcare.
A fourth area for action is inviting both clients and carers to be involved in the design and monitoring of services—the kind of services to which the noble Lord, Lord Rix, referred: patient passports and annual health checks. I know that NICE is already looking at providing that with its guideline development groups, and NHS England wants to do the same with consultative and participative care planning.
The Department of Health has already set several provisional goals, including closing the mortality gap between those with and without learning disabilities within three years. This is an absolutely excellent aspiration. A large part of the purpose of this debate is to encourage its delivery. As the noble Baroness, Lady Hollins, pointed out, updates involving data collection on premature mortality in those with learning disabilities have been promised, but they have not yet been produced. Further delay means more people with learning disabilities dying prematurely and, in some cases, avoidably, so I hope that we may soon see some tangible action in support of those who desperately need it.