People with Learning Disabilities

Lord Rix Excerpts

Thursday 12th June 2014 Lords Chamber

[Lord Rix (CB)]

I very much welcome the opportunity to speak in this important debate. As my noble friend Lady Hollins said, it was almost a year ago that we were here debating the appalling health inequalities faced by people with a learning disability. Of course, that was in the context of the Government’s response to the Confidential Inquiry into Premature Deaths of People with Learning Disabilities.

In that debate I told the House the fact that,

“over a third of those investigated died due to poor healthcare is nothing short of an outrage and should be front-page news”.—[Official Report, 18/7/13; col. 968.]

It never has been and the fact that a year on there has been little progress from the Government on this, and no Statement made on the subject in Parliament, should also be considered newsworthy. Would the media have such a blind eye for any other group in society?

As someone who has worked in the world of learning disability for many years, and indeed as president of Mencap, I am only too aware of the long-standing and pervasive health inequalities that exist. Mencap’s Death by Indifference, to which the noble Baroness, Lady Hollins, referred, is perhaps the organisation’s most powerful campaign and captures a number of distressing but important stories of people who have lost loved ones due to poor quality of care, neglect or indifference. In short, their lives have been valued less than those of others.

The campaign is as important today as when it was launched back in 2007, as is Sir Jonathan Michael’s inquiry which followed. Over the years Mencap has supported many families who have lost sons, daughters, brothers and sisters due to poor-quality healthcare. In 2012 Mencap published Death by Indifference: 74 Deaths and Counting, which showed the number of families who had reported deaths by indifference since 2007. Sadly, this number is now over 100. Many of those family members were in the Public Gallery at the debate last year and I know that many will be watching today on television as well. We owe it to them to make urgent progress on this. They are not standing alone. As my noble friend Lady Hollins said, Mencap will shortly hand in to the Department of Health a folder of nearly 3,000 personal messages from family members and campaigners urging the Government to take action.

I am, of course, fully supportive of the recommendations from the confidential inquiry. They take us a long way towards equality in healthcare for this vulnerable group of people. In particular, the central recommendation on an overseeing national body, described by my noble friend Lady Hollins, is critical. As my noble friend also mentioned, I understand that NHS England has committed to establishing a national mortality review by March 2015. That is one step forward but it is hugely disappointing that it has taken so long to agree this. People with a learning disability are still dying prematurely from this institutionalised indifference.

Mencap called for a number of commitments to bring about the basic right for equal healthcare. Annual health checks are available but not promoted by many and often conducted far too casually. This needs to change and should be a permanent part of the GP contract. All health professionals should of course act within the law and receive training around the Equality Act so that people with a learning disability get the reasonable adjustments they may need: longer appointments, easy to understand information, proper diagnosis and so on. Mencap has done some great work through the Getting it Right programme which provides training for healthcare professionals up and down the country, co-delivered by people with a learning disability themselves. Furthermore, we have great examples of standardised hospital passports working very effectively. These should be routine. I encourage the Government to consider this.

There are many more issues and suggestions that I know other noble Lords will cover but, essentially, this is about attitudes. People with a learning disability are simply not as valued by the health service or general public as others. That needs to change. It is not hugely dissimilar to progress on moving people from institutions such as Winterbourne View, that ghastly place where horrific abuse was uncovered a few years ago by the BBC’s “Panorama”. Progress, or lack of it, on that has been abysmal and it will come as no surprise to your Lordships that I also sought a debate on that subject as well.

People with a learning disability have suffered second-rate healthcare for far too long, resulting in premature and painful deaths. We owe it to the families who have lost loved ones to stop the need for debates like this and show the bereaved—and those about to go through the same heart-rending experience—that the NHS has learnt its lessons and that health inequalities for people with learning disabilities are indeed a thing of the past.