People with Learning Disabilities

Baroness Andrews Excerpts

Thursday 12th June 2014 Lords Chamber

[Baroness Andrews (Lab)]

My Lords, I, too, congratulate the noble Baroness, Lady Hollins, on securing this debate, and I want to congratulate her even more on the work she has done literally over decades to bring this extraordinarily important problem to the attention of other professionals as well as government. I had the pleasure of serving with her on the committee that reviewed the Mental Capacity Act 2005 and I learnt a great deal from her expertise and wisdom. Of course, it is in the context of the MCA itself that this report should be seen and why it is important.

Over the years I have become familiar with the challenges around the vulnerability of people with learning disabilities and mental incapacity in general. It has been borne in on me how the failure to invest in getting things right in the NHS has the greatest impact on the most vulnerable, and therefore how much more urgent is their need for the prescriptions for change that would make a difference to all of us. At the top of the list are issues such as quality of care, respect and empathy, but it is also about the tools that enable good practice: good data, good sharing of information and good co-ordination of services. That is why it is so vital that the CIPOLD recommendations are implemented not only diligently but quickly.

It has been my experience in this House that not being too burdened with expertise can actually reinforce one’s capacity to be outraged and shocked. I was very shocked when I read about the catalogue of neglect and indifference which has led to the failures identified in the CIPOLD report, such as failures to diagnose and treat, and the proportion of preventable deaths. Since it is predictable that people with learning difficulties are much more likely, especially as they grow older, to have long-term medical conditions such as epilepsy, cardiovascular disease or dementia, it is truly appalling to discover that 37% of those deaths would have been, potentially, avoidable if the right healthcare had been provided. The fact that the average age of death for women with a learning disability is 20 years earlier than for other women is extraordinary. It is dreadful.

It is now almost a year since the Government’s response, in which I thought they sounded rather chastened. It is good to see that they have certainly taken on board the inescapable recommendations. However, many of the responses, for example those on access to better healthcare, while positive, are, shall we say, a bit vague in terms of process and timelines. I know that this is complex, but the language is still that of further discussions, appropriate use of guidelines and proactive referrals. It is generally “work in progress”. However, there is an opportunity today for the Minister to update us on specific progress, which I am sure he will do.

Clearly, whatever progress has been made has not been sufficient either for Mencap or the health ombudsman. Three of the recommendations, and the responses they prompted, also seem to require some particular exploration. As the noble Baroness, Lady Hollins, noted, it is indefensible that only 200,000 out of an estimated 900,000 people have their condition noted in their medical records. If it were a physical condition, this would be unacceptable. It is symptomatic of the relative invisibility of learning disability that health professionals do not record it as a matter of course. We need that information not just for appropriate care but for the better co-ordination of services with social care.

That leads on to our old friend in health debates, the failure to co-ordinate services for people with complex and multiple health needs. The confidential inquiry was clear about this, too. A fifth of premature deaths were of people who had seven or more medical conditions, many of which are eminently preventable, such as pressure sores. The failure to offer an annual check-up is part of the source of the problem here—failing to anticipate complications certainly does not make co-ordination any clearer. Can the Minister tell us what progress has been made on improving medical records and standardised health checks?

The third question I have for the Minister on this point is whether we can have an update on the timetable for the implementation of the recommendation on having a named person for people with complex conditions. This is a really good step forward. As the noble Lord, Lord Ribeiro, pointed out, many issues are about communication but also the fact that people become very anxious in strange settings, particularly in hospitals, and therefore sometimes resist care and treatment. It is also important that these named contacts, whatever they do, should have learning disability awareness training whichever setting they are in. I would be interested to know how that will be managed.

However, the major disappointment, as the noble Baroness, Lady Hollins, said, is of course the failure to meet the deadline for the national mortality review body. This is the game changer. Could the Minister share with us what is holding this up? Is it an issue of resources? Is it an issue of governance? Is it an issue of relationships? Where are the complexities? I know that the Minister will be anxious to give the noble Baroness the assurances that she has sought this afternoon.

I am afraid, for me, the report underlined the fact that before legislative parity between mental and physical health—which we are so pleased we have achieved—becomes a reality, an enormous amount of work has to be done to change attitudes and practice. It was fascinating in the committee to hear the evidence from Ministers, who seemed to have discovered the problems around mental capacity only because the Select Committee had actually been set up.

The noble Earl may recall with great pleasure, as I do, the work we did on the Mental Capacity Bill. It had its moments but, at the end of it all, we were very pleased that we had achieved legislation that put the positive rights of those with mental incapacity in a framework of ethical, practical and legal reach. In the Select Committee, it was reassuring to know that this ambitious Act is still seen as a radical and progressive piece of legislation. Failure has been around consistent and effective implementation, which has often been ascribed to a lack of knowledge by medical and psychiatric practitioners and the fact that the Act was not embedded in assessments, diagnosis, behaviour or treatment.

In short, the cultural change that was our highest expectation has not yet been achieved. It is significant, therefore, that the government responses to the recommendations vis-à-vis the MCA were essentially exhortatory and pointed up the problem that we had already identified in the Select Committee. Simply wishing things to change does not bring change into force. The emphasis that we put on the content of and the priority given to training is absolutely vital. It has been referred to already.

In conclusion, we found that GPs seemed to have a poor understanding of the Act, and we pointed to the need for greater emphasis on medical training and medical leadership. I am delighted to say that that finding seems to have struck a chord with the medical colleges and the Government. I hope we will be able to debate that in more detail when we debate the report itself. In the mean time, I thank the noble Baroness for creating the opportunity for us to share our feelings about this report, and I look forward to the Minister’s reply.