People with Learning Disabilities

Baroness Warwick of Undercliffe Excerpts

Thursday 12th June 2014 Lords Chamber

[Baroness Warwick of Undercliffe (Lab)]

My Lords, I, too, thank the noble Baroness, Lady Hollins, for introducing this most important debate. She is a doughty advocate for those with learning disabilities, and I am glad to be able to support her in this debate.

Like many across the Chamber, I am deeply shocked and concerned by the findings of the confidential inquiry into premature deaths, but I am also shocked and concerned at the lack of action by the Government. The appalling statistics speak for themselves. I repeat just one: men with a learning disability die 13 years earlier than the general population, and women die 20 years earlier. This stark fact alone should focus all our minds in this House. I say I am shocked and concerned because I was expecting to come here today to discuss progress on this agenda, yet as far as I can see, very little has been done. It is not as if this is something new to the health service and policymakers.

Some 20 years ago, research by the noble Baroness, Lady Hollins, exposed these stark inequalities. It is worth repeating the litany the noble Baroness gave of the reports since then: the point was made again in 2001 in the Valuing People strategy, by Mencap through its Death by Indifference campaign in 2007, in the ensuing report from Sir Jonathan Michael and most recently by last year’s confidential inquiry.

Mencap has been mentioned several times in this debate. I thank it for its briefing and for its immensely important work. I agree with the noble Lord, Lord Rix, himself a staunch campaigner for those with learning disabilities, that Mencap’s Death by Indifference campaign is one of its most powerful and is as important today as it was when it was launched. It has worked tirelessly to support families who have lost loved ones and, most importantly, to tell their story. It has also striven to promote good practice through the Getting it Right charter, to which more than 200 hospitals have signed up. The charter was produced together with professionals and the royal colleges, and is a set of actions that hospitals and healthcare staff commit to in order to break the historical cycle of health inequality faced by people with a learning disability.

These actions include appointing learning disability nurses, ensuring that hospital passports are available, and making sure that staff are trained in learning disability awareness as well as ensuring that families, carers and, of course, people with a learning disability are respected and listened to. It is a list of commitments that, if followed through and adopted right through the caring professions, would make a huge difference. I hope that the Minister will commit the Government and NHS England to much more vigour in their promotion of the actions in the charter.

I will say a few words about training, and then something about the importance of annual health checks, which have already been referred to today. On training, medical and nursing students seem to be woefully underprepared to treat people with a learning disability. This seems hard to believe, considering that there are around 1.4 million people with a learning disability across the UK. However, a final-year student nurse who was about to graduate told Mencap that she had had only one lecture on learning disability on her three-year course. This appears to be woefully inadequate, particularly given that this group is much more likely to have long-term and multiple health needs, as well as specific needs around support. I wonder whether this lack of training will be the case for other groups. I rather doubt it. In fact, it seems to me to be a national scandal. I hope that the Minister will comment on the inadequate nature of training provision in learning disability and tell us what he, the department, NHS England and health education will do urgently to address this.

Annual health checks have been mentioned already. I agree with other noble Lords that they are essential in reducing premature mortality and preventing people ending up in acute care. People with a learning disability are more likely to have long-term medical conditions such as epilepsy and cardiovascular problems. In addition, people with a learning disability are more likely to have multiple health conditions. Indeed, the inquiry found that a fifth of those who died had seven or more medical conditions. Annual check-ups are therefore critical both for GPs and specialists to monitor progress but also to help people to manage their conditions.

However, it is not just about making sure that everyone has an annual health check: the checks must be of high quality. It comes back to training: it should undoubtedly be mandatory for all students. Unfortunately, while some annual health checks are carried out to a high quality, others are not. Mencap has been informed of examples where health checks have been carried out by nurses, instead of GPs as they should be. Other scenarios include GPs ignoring the patient and directing all questions to family members who are with them; I am reminded of the radio programme, “Does He Take Sugar?”. In other cases, patients or family members are asked simply to fill in a form, and the patient has not been examined at all. In the worst cases, some GPs assume that separate conditions are actually symptoms of a learning disability and therefore refuse to treat them, when in fact the conditions are easily treatable and nothing to do with a person’s learning disability.

So what must the Government do? The Government and Health Education England must set mandatory minimum standards of training and continuous professional development in learning disability. Ensuring that our health professionals have good-quality training and personal development will lay the foundations for at long last putting a stop to people with a learning disability dying needlessly. Furthermore, annual health checks must be carried out by suitably trained GPs, and completed thoroughly, with understanding and care. Like my noble friend Lady Andrews, I ask the Minister to update us on the use of data, not just to ensure that annual health checks are undertaken but to explore the care that people with a learning disability receive throughout the health system.

Mencap found that this was not about lack of money, active negligence, mistaken diagnosis or even due to accident, but because of indifference. It went so far as to describe the treatment in hospitals of people with learning disabilities as “institutional discrimination”. How can we accept that? Surely we must regard that as a call to arms from this House for dedicated and immediate action from the Government and the professions to restore the faith of those with learning disabilities and their families that the health service will treat them equally, fairly and with proper compassion. I look forward to the Minister’s response.