Health: Learning Disability and Autism Training

Lord Wigley Excerpts

Monday 10th February 2020 Lords Chamber

[Lord Wigley (PC)]

My Lords, I am delighted to follow that moving speech. I draw attention to my registered interest in the form of my links to Mencap, and thank the noble Baroness, Lady Hollins, for facilitating this debate. I also pay tribute to her campaigning zeal on these issues over so many years; we all admire it tremendously and are indebted to her.

This is not the first time that we have addressed these issues. I spoke in a very similar debate in 2014. I served on the special investigation under the Disability Rights Commission, chaired by David Wolfe. Our 2007 report highlighted many issues to which we are returning today. It is immensely depressing that, despite warm words, so little progress of substance has been made. However, I welcome the opportunity to speak in this debate on tackling the inequalities that people with a learning disability face in relation to their healthcare services.

The noble Baroness set out clearly why all health and social care staff should receive learning disability and autism training. I, too, pay tribute to the campaigning of Paula McGowan, without whose efforts we would not be debating these matters today.

For far too long, people with a learning disability have faced inadequate healthcare and social care advice and services because of the inability of those providing the services to do so in a manner that enables the person with a learning disability to access them fully. We have heard in this House of scandal after scandal involving people with a learning disability dying avoidable deaths, often in tragic circumstances. Mencap has campaigned on this issue for many years, and I would highlight their report, Death by Indifference. Through six case studies, it revealed the reality that people with a learning disability face when receiving care in the NHS. While it led to the confidential inquiry and, subsequently, to the learning disability mortality review, things have not moved on quickly enough.

The first annual report from that review revealed that women with a learning disability are dying 29 years sooner than women in the general population, and men 23 years earlier. We can all imagine how we would feel if we were told that we might expect to live much shorter lives for reasons that could quite easily be counteracted. One can but imagine the sense of fear and anxiousness, arising from seeing shocking cases on the news, as each time you go into hospital, you think it might be the last time you do so. That is why, since 2018, Mencap has been running its Treat Me Well campaign, to transform how the NHS treats people with a learning disability and bring about equal access to healthcare.

However, equality in healthcare does not necessarily mean treating two people the same way. It is about everyone receiving the right healthcare for their needs. The NHS and social care staff are overwhelmingly dedicated to their profession and seek to provide the best possible care for every person, but they need the appropriate skills to achieve this. We must not assume that all such staff have direct personal experience of engaging with people with a learning disability or, necessarily, positive attitudes when doing so.

The Treat Me Well campaign revolves around local groups working with their NHS Trusts and healthcare professionals in a positive manner, rather than simply criticising poor practice. It is our duty to ensure that all staff, existing and new, are equipped with the essential skills and tools to provide the best possible care, regardless of a person’s disability. That is why mandatory learning disability and autism training must be part of the curriculum.

This debate is primarily about England, but health inequalities are not bound by borders so it might be helpful to share the progress made in Wales, where almost all the relevant responsibilities are devolved to the National Assembly. There may be much that we can learn from each other. Actions to reduce health inequalities have been in place in Wales since 2014, when the Welsh Government introduced the learning disability care pathway. This was a direct response to the tragic death of Paul Ridd in Morriston Hospital, Swansea, in 2009. Paul’s family have worked tirelessly in partnership with Mencap Cymru to improve awareness of the needs of patients with a learning disability. I pay tribute to Jayne Nicholls and Jonathan Ridd, Paul’s sister and brother, for their commitment over the last decade to improving health outcomes for people with a learning disability in Wales.

In November the Welsh Government announced plans to introduce mandatory learning disability awareness training for all NHS staff. This will, appropriately, be named after Paul Ridd. Such training is being designed with input from Mencap Cymru, the Paul Ridd Foundation and the University of South Wales. It is expected to be rolled out gradually and systematically, starting very shortly. I warmly welcome that move and congratulate all who helped to bring it about. I hope that NHS England engages with colleagues in Wales to share best practice in both directions and to learn from our respective experience.

A key element of the training provided in Wales is the central role that those with their own lived experience have played in its creation. I agree with the noble Baroness, Lady Hollins, that central to rolling out effective learning disability and autism training in England, and preventing it becoming a tick-box exercise, is ensuring its co-production and co-delivery by people who themselves have direct lived experience. Tick-box training simply will not stop the continuous list of scandals we have experienced. Putting those with lived experience at the heart of the training will go a long way towards breaking down negative attitudes and stereotypes and help to develop staff communication skills.

My ultimate hope is that training co-developed and co-produced by people with lived experience will help to prevent premature deaths. I hope that the Minister can give some reassurance that those with lived experience will play a central role in such training, and that she accepts that this is one vital step among many for ensuring that people with a learning disability receive the standard of healthcare that they have a right to expect.