Health and Social Care Bill

Lord Rix Excerpts

Tuesday 11th October 2011 Lords Chamber

[Lord Rix]

My Lords, before I make my contribution to the debate, it is appropriate that I declare an interest as president of the Royal Mencap Society. In recent years, the NHS has made much progress in how it treats people with a learning disability. However, there remains plenty of scope for further improvement in its performance. It is important to emphasise that my concerns about the content of the Bill should not be interpreted as implying that I have full satisfaction with the status quo: far from it. However, I fear that positive steps that have been made could be undermined as a consequence of the Bill.

As many noble Lords will be aware, Mencap’s interest in campaigning on improving the health chances of people with a learning disability is long-standing—with much reason. Research consistently shows that people with a learning disability still experience worse health outcomes and greater inequalities than the rest of the population. They have a shorter life expectancy and an increased risk of an early death. Their overall level of health is also generally poorer. Yet they find it harder to access the health services that for them are so much more of a necessity.

For example, annual health checks for people with a learning disability are vital. They are carried out by GPs, funded by the Department of Health, and are a recognition that people with a learning disability have additional problems with their general health. Yet latest figures show that in England only one in two such people takes up their right to these annual checks, meaning that more needs to be done to ensure that they access the health services to which they are entitled. This is an area where I am concerned that much of the progress over recent years could be undermined if, during a period of major reorganisation in the NHS, we lose focus on making this a priority.

General practice and the promotion of annual health checks are not the only areas of the NHS where progress has been made, but more needs to be done. Mencap’s groundbreaking report, Death by Indifference, published in 2007, highlighted six premature and totally avoidable deaths of people with a learning disability in the care of the NHS. Your Lordships will recall that, as a consequence of the report, the previous Labour Government established an independent inquiry led by Sir Jonathan Michael, which published a report entitled Healthcare for All. This set out the steps that should be taken to prevent similar avoidable deaths in future.

In 2010, Mencap launched its Getting it Right campaign, which encouraged NHS institutions to sign up to a charter setting out reasonable adjustments that they should make to provide equality of health outcomes for people with a learning disability. The charter included steps such as producing materials in accessible formats, employing learning disability liaison nurses, and improving awareness of learning disability among healthcare staff. These steps, and others, have led to many changes in the way people with a learning disability are treated in the NHS. However, while some progress has been made, too often provision remains geographically dispersed and inconsistent. As the Department of Health's Six Lives: Progress Report, published in 2010, revealed, there continue to be concerns around the poor use of mental capacity legislation and the lack of reasonable adjustments to health services.

This is why I believe the real challenge during a period of change and reform in the NHS is to make sure that where progress has been made in driving up better health outcomes for people with a learning disability, that progress is not lost. This is particularly the case for those with more specialist needs, such as people with profound and multiple learning disabilities—PMLD. There is a great deal of concern about the commissioning of health services used by people with PMLD. The specialist services are often extremely expensive and will not offer the economies of scale that other, more profitable or locally attractive health needs can secure. As the number of people with PMLD is relatively small, what incentives will local clinical commissioning groups have to commission such services? Will other, more popular requests prove to be more appealing? What role will the NHS Commissioning Board play in ensuring that the needs of people with PMLD are not ignored?

As noble Lords will be aware, a key element of the Bill, and a fundamental principle of the Government’s intentions, is the extension and promotion of patient choice in the NHS. However, “choice” can mean different things and has different connotations for different people, with widely different outcomes. Will those with the most persuasive elbows and articulate voices have greater opportunities for choice than those without? How will people with PMLD exercise choice under the new structures? What support for locally run advocacy services will be provided? What safeguards do the Government intend to put in place to ensure that some of the most vulnerable people in society, such as those with PMLD, can have their voices properly heard?

As I have made clear in my speech, too many people with a learning disability continue to face prejudice and discrimination when trying to access equal healthcare, yet their needs are much greater. I therefore ask the Minister how the Bill aims to tackle the health inequalities to which I have just referred.

Mention was made by my noble friend Lord Owen, who regrettably is not in his place, of Enoch Powell when he was Minister of Health. In 1962 I had occasion to visit him to ask him for an increase in NHS services for people with a learning disability. He told me that it was totally unnecessary and that progress had been made. Of course, he was talking arrant nonsense then, and I would hate to see this Bill reverse the progress that has been made on the implementation of high-quality services for people with a learning disability.

With so many speakers clamouring to have their heartfelt concerns about the Bill heard today and tomorrow, I cannot believe that the Minister will be able to satisfy all our demands in his summing up. Therefore, could he possibly afford the time for a further meeting with those of us who are interested in the world of learning disability?