Disability: Premature Deaths

Baroness Hollins Excerpts

Monday 17th October 2016 Lords Chamber

Asked by

[Baroness Hollins]

To ask Her Majesty’s Government what progress has been made in tackling the rate of premature deaths among people with a learning disability.

[Baroness Mobarik (Con)]

My Lords, this debate will be time limited to 90 minutes instead of 60 minutes. The speaking time for Back-Bench speakers will be eight minutes instead of four.

--- Later in debate ---

[Baroness Hollins (CB)]

My Lords, this is our first opportunity since his death in August to celebrate the extraordinary contribution of Lord Rix. He was of course a household name in the 1950s and 1960s for what became known as the Whitehall farces, and was then involved in more than 90 television shows. In 1951, his daughter Shelley was born with Down’s syndrome, and Brian and his wife Elspet were shocked when they were told to “put her away in a home and start again”. Brian used his growing popularity to try to make things better for Shelley and for thousands of others and their families.

Brian Rix joined the House of Lords in 1992 as Baron Rix of Whitehall and Hornsea and spoke tirelessly in parliamentary debates, still fighting for the rights of people with a learning disability until December last year, at the age of 91. I will miss my noble friend’s advocacy and friendship, as will so many in this House. I thank the Royal Mencap Society and Professor Pauline Heslop, the programme lead for the learning disabilities mortality review, for providing me with up-to-date information in preparing for today. I also welcome the maiden speech of the noble Baroness, Lady Fall.

Since the 1990s, there have been a number of reports and case studies that have consistently highlighted that people with learning disabilities die younger than people without. My own research first highlighted this problem in articles published in the mid-1990s showing that adults with a learning disability were 58 times more likely to die before the age of 50, and were significantly more likely to die of respiratory disease than the rest of the population. Twenty years later, CIPOLD, the Confidential Inquiry into Premature Deaths of People with Learning Disabilities, found that this was still the most common immediate cause of death in 34% of cases. Recent data from the Clinical Practice Research Datalink showed that more than three times the number of people with learning disabilities in England die each year than would be expected from general population mortality rates, after allowing for their age and gender profile.

Why is this proving so difficult to change? The practice issues which emerge time and again in studies and inquiries on this issue include worrying findings of professional indifference and discriminatory attitudes, with healthcare professionals still relying inappropriately on their own estimates of a person’s quality of life—attitudes that inspired Brian and Elspet Rix in 1951 and Sally Philips in 2016. A frequent complaint is that health and social care professionals do not listen to those who know the person well when they voice concerns about the person’s health. Cases referred to the ombudsman repeatedly show that professionals do not understand how to apply the Mental Capacity Act. This was echoed by the post-legislative scrutiny committee on the Mental Capacity Act, of which I was a member, which reported in February 2014.

There is also insufficient attention paid to making reasonable adjustments to support the delivery of equal treatment, and a failure to provide the annual health checks that every adult with a learning disability should be offered. In 2013-14, only 44% of eligible people with a learning disability received an annual health check. There are also delays in diagnosis and treatment, and difficulties in accessing assessment and treatment of general health problems. There are also a number of system-level issues, such as a lack of learning from reviews of deaths and a failure to identify that a person has a learning disability in their healthcare record, meaning that the specific health needs of people with learning disabilities are invisible not only to health professionals but to researchers and public health practitioners.

What are the Government doing to improve our knowledge and understanding of the needs of this vulnerable group, for which comprehensive and accurate identification is an essential prerequisite? If we do not know which of our patients has a learning disability, how can we make the reasonable adjustments? I will come back to that. It is important that we keep monitoring these issues for evidence of improvement.

Following the CIPOLD report in 2015, the first three-year National Learning Disabilities Mortality Review programme, LeDeR, was set up at the University of Bristol. Its aim is to drive improvement in the quality of health and social care service delivery for people with learning disabilities, and to reduce premature mortality and health inequalities. It supports local agencies to conduct reviews of the deaths of people with learning disabilities between the ages of four and 74, and to learn from these reviews to improve services.

The programme supports reviews of all deaths, regardless of the cause or place of death—so not just deaths in hospitals but, for example, deaths at home. It is supported by family carers and people with learning disabilities, who all act as advisers. The case reviews are expected to identify and advise on action over the avoidable contributory factors leading to premature deaths in this population.

The establishment of LeDeR is hugely welcome, but a key question is how the NHS and the Government will use the data from the case reviews to implement a national strategy to tackle this continuing scandal. Will the Minister commit that the Government will regularly inform Parliament of progress in achieving improvements in outcomes for people with learning disabilities?

The programme has developed a website, training for reviewers, and illustrated guides and factsheets, and each NHS region is now introducing the review process by training local reviewers, piloting case reviews and offering learning and sharing events. But, unlike the child death review process and many other inquiries, the learning disability deaths programme is not mandatory. Agencies can choose to contribute to reviews of deaths of people with learning disabilities or not and, unlike the child death review, it is time limited, not permanent.

In my opinion, the most important change that is needed is a change in culture within all responsible services at all levels, and this includes making learning disability a sustained priority. But saying that it is a priority is not the same as acting to end the discrimination that we all know exists. Is it not time to mandate reviews into all deaths of people with learning disabilities on an ongoing basis, and for the CQC to scrutinise the implementation of local learning from such reviews at its inspections?

To have any chance of success, the programme requires multiagency sign-up and commitment from all agencies and services that provide support for people with learning disabilities, so that a comprehensive review of the circumstances leading to the death of an individual can be thought about fully. Can the Government give a clear message to local authorities and social care agencies that their staff must be released to contribute to reviews of deaths?

We already know a lot about contributory factors to premature deaths, but we need to move beyond just identifying what has gone wrong into making changes to practice. There is no point in reviewing deaths if subsequent changes to reduce premature deaths are inadequately resourced. What can people with learning disabilities and their families expect from the Government in terms of additional resources to prevent premature deaths, and when can they expect it?

There are some urgent actions that could be implemented immediately. I would like us to empower people with learning disabilities by ensuring that they have a better understanding of the health issues that affect them personally. I spoke about this in the excellent debate secured by the noble Lord, Lord Bird, on the role of libraries and independent bookshops; along with others, I mentioned the importance of reading for health understanding. The difference for people with learning disabilities is the need for accessible information, as set out in the information standard, but also for visual methods of communication to be used as part of enabling the person to demonstrate their understanding, wishes and capacity to consent, and making it easier for health professionals to be able to use the Mental Capacity Act.

Sometimes understanding can lead to better outcomes, just as it can in those people who are literate, through an improvement in quality of life and mood, as found in a recent study at the University of Hertfordshire using a wordless book about epilepsy that is currently in press. Having addressed their own need to understand, these self-advocates can deliver training as experts by experience. Good communication skills and positive non-discriminatory attitudes should be assessed in our universities and trusts because they are the core skills and attitudes needed by all staff—not just doctors and nurses but dentists, opticians and receptionists as well. These skills will be acquired only through direct contact with people with learning disabilities.

The learning disabilities core skills education and training framework, developed by Health Education England and Skills for Care, is hugely welcome, as is the work of the GMC, which has been developing tools for doctors. I have contributed to some of this work personally. Mencap has developed training within the core skills framework, which is co-delivered with people with a learning disability—and the courses are oversubscribed already.

I end my remarks by asking: how will the Government, the Department of Health and Health Education England make sure that training is an absolute priority for trusts and universities?