People with Learning Disabilities

Lord Adebowale Excerpts

Thursday 12th June 2014 Lords Chamber

[Lord Adebowale (CB)]

My Lords, I declare my interests as chief executive of Turning Point, which provides health and social interventions for many people with learning disabilities, and as a non-executive member of NHS England. I thank the noble Baroness, Lady Hollins, for tabling this debate nearly a year after the Government responded to the report of the Confidential Inquiry into Premature Deaths of People with Learning Disabilities, and indeed just days before the start of this year’s Learning Disability Week. Obviously, I share the views that have already been expressed about the noble Baroness’s contribution to the field of care for people with learning disabilities.

The intolerable and often repeated statistics continue to stand out: 37% of the deaths that the confidential inquiry investigated could potentially have been avoided had the individuals had better care. In a sense, the points made by both noble Lords, Lord Ribeiro and Lord Patel, speak to the lack of training and knowledge necessary to care properly for individuals with learning disabilities. The situation is indeed intolerable.

The inquiry examined many issues that have been discussed and referred to by the noble Baroness, Lady Hollins, et al during their excellent contributions to the debate so far today, including the inappropriate “do not attempt cardiopulmonary resuscitation” orders, which the noble Lord, Lord Patel, referred to; problems with adhering to the Mental Capacity Act, which are, frankly, shocking; and incorrect or delayed diagnosis and poor co-ordination of care, which is also a familiar problem across health and social care as a whole for those at the sharp end of the inverse care law.

Another frustrating finding was that the concerns of individuals that their families and carers were reportedly not taken seriously enough by medical professionals in one-quarter of the cases where the individual was identified as being unwell. A case that illustrates this and shocked me was that of Henry. Despite his family’s concerns, hospital staff assumed that the bleeding from his nose and mouth was because he had bitten his tongue while fitting, but it was later discovered that he had actually been suffering from a brain haemorrhage. Mencap’s excellent report, Death by Indifference, gives many cases that are, sadly, even more shocking than that one, and refers to the fact that although family members and carers may not be medical experts, they are experts with valuable insights and are well placed to know when something is just not right. They, after all, are the ones who know the individuals best and understand their needs.

The service has to be able to properly understand and respond to people’s needs. That is one of the key challenges that I will come back to shortly. First, I turn to some of the inquiry recommendations and the Government’s response. The recommendations gave the Government and other agencies a clear path to follow: identification of people with learning disabilities; reasonable adjustment audits; named healthcare co-ordinators; improvement of annual mental health checks; Mental Capacity Act training; clarity around “do not attempt cardiopulmonary resuscitation” orders; and better local and national learning disability data, to name but a few.

As I have found in my own work carrying out inquiries into deaths associated with mental health, the implementation of policies, guidance and recommendations is key to success. While the Government’s response last summer was welcome, it lacked a clear timetable for improvements, given the urgency needed. There was a shying away from the recommendation for a national learning disability mortality review body, and this is of concern. However, I now understand that resources have been made available and work is under way by NHS England to establish how a mortality review function would work, which is strongly welcomed—although, if I were to be critical of a body on which I sit, I would have to agree with the noble Lord, Lord Rix, that it has taken too long. When NHS England was established, one of the first things we did was spend time with people with learning disabilities in an attempt to understand health and social care from their point of view. We have to start implementing a little faster what they told us.

The inquiry’s revelations are everyone’s problem, and improvements need to happen at local and national level and across different agencies and among health services and providers. The Government need to continue to provide the leadership needed for change to happen as robustly as they did in the wake of Francis inquiry. No doubt we will hear more from the Minister today on other progress since the Government’s response was published. At the heart of the inquiry was the fundamental issue of meeting and responding to people’s needs properly. That is often about changing deeply rooted ways of working, treating people as individuals and avoiding one-size-fits-all approaches or making assumptions about people. In short, it is about equality.

As Sir Jonathan Michael said in his 2008 inquiry into healthcare for people with learning disabilities, and as the confidential inquiry also highlighted, equal does not mean the same. Reasonable adjustments to enable people with learning disabilities to have parity of access to health services are not particularly difficult to make, and we should not pretend that they are. Health and social care service providers across the board must be able to respond to the needs of the people who they serve, rather than the other way round. Although there is much talk about hard-to-reach groups, we should look to improve hard-to-reach services. This again comes back to involving individuals and their families and carers in their health and social care. We are not going to make improvements without doing this, and if we want to be able to offer tailored and relevant services, we should involve people as a matter of course.

In conclusion, we also need to learn lessons from the past because if we keep doing what we have always done, we will get what we have always got. As the confidential inquiry team noted, optimism that lessons had been learnt from past reviews was quashed during its work, which showed that the same issues are resurfacing, which is simply unacceptable. The inquiry’s recommendations offer a significant opportunity, so they need to be address as a matter of urgency alongside improving the care culture and responding better to people’s individual needs. People with learning disabilities must receive the same standards of care as everyone else. They must also receive the same level of determination from the Government to lead the improvements that are needed.