People with Learning Disabilities

Baroness Hollins Excerpts

Thursday 12th June 2014 Lords Chamber

[Baroness Hollins]

Asked by

To ask Her Majesty’s Government what action they are taking to address the health inequalities found by the Confidential Inquiry into Premature Deaths of People with Learning Disabilities.

[Baroness Hollins (CB)]

My Lords, there are 1.5 million people with a learning disability in the United Kingdom. They are among our most vulnerable citizens and they experience shocking inequalities in healthcare. My interest is that I have been a learning disability psychiatrist for over 30 years—a clinician, teacher, researcher and policymaker—and my adult son has a learning disability.

In July last year we debated the recommendations made by CIPOLD, the Confidential Inquiry into the Premature Deaths of People with Learning Disabilities, and the Government’s formal response, which accepted most of CIPOLD’s recommendations. Before that debate I had tea with some families whose relatives have died due to inadequate healthcare in hospitals. Many of them stayed to watch the debate and many will be watching today.

How much progress has been made since then? We are still waiting for the Government’s One Year On report, promised by March this year. Why the delay? It seems that there are always delays. My own research 20 years ago found that adults with a learning disability were 58 times more likely to die before reaching the age of 50 than those in the general population. It took me a while to get that research published. Prestigious medical journals such as the British Medical Journal said that it was not of general medical interest. Eventually I published it in a small-circulation disability journal. Mencap then used my data to campaign.

In 2001, the Valuing People White Paper included my suggestion that a confidential inquiry into premature mortality should be established to investigate causes of death and contributory factors for this group of people. Nothing was done about it. Then, Mencap’s shocking Death by Indifference report in 2007 was followed by the Michael inquiry, which repeated the recommendation for a confidential inquiry. There was then yet another delay until 2010, when CIPOLD was finally established. In March 2013, it reported on the deaths of 247 people with learning disabilities over a three-year period in south-west England. It found that on average men with a learning disability died 13 years earlier and women 20 years earlier than a comparison group of non-disabled people. Of those deaths, 37% could probably have been avoided if these people had not been discriminated against. People had delayed access to diagnosis and treatment for the same conditions as the comparison group. This adds up to more than 1,200 avoidable deaths each year across England. The lack of public, professional and political outrage is unbelievable.

CIPOLD made several recommendations to address these health inequalities. In May 2014, the BMA’s Board of Science, which I chair, published a report on how to achieve parity of outcomes for people with learning disabilities. I will focus on the central recommendation from the confidential inquiry—also supported by the BMA—that a national learning disability mortality review body should be established.

What is the purpose of a national learning disability mortality review? It does not seek to blame individuals; its aims are to promote a culture of safety by collecting and analysing data on all deaths in this group. The review would monitor trends and identify specific actions and changes to practice that could be expected to reduce the number of avoidable deaths.

In May 2014, NHS England finally made a firm commitment to establishing a national learning disability mortality review by March 2015. It took 14 months for this commitment to be made, and it is deeply frustrating that another year’s delay is planned before the review body is established. By that time, an estimated 2,500 more people could have died needlessly since CIPOLD reported, but realistically no improvement can be expected in services until at least 2018. That would bring the number of avoidable deaths to 7,500 before any targeted action was likely. I will explain my rather pessimistic conclusion.

I was invited to join the cross-sector, multiagency mortality review oversight group. It had its initial meeting last week. To establish the review, the first step is to appoint a procurement partner to oversee the development of the service specification and tendering process. The mortality review then needs to gather data about trends and regional variations in excess mortality, and about contributory causes. Identifying people with a learning disability is fundamental to this. However, it is more difficult than it sounds.

The Government have previously agreed that better identification in the healthcare records of people with a learning disability is important. The 2012 power of information framework allows this information to be recorded electronically upon a person’s first contact with a healthcare professional. However, healthcare professionals seldom identify or record a person’s learning disability either in primary care or in hospital. Mencap says that of 900,000 people with a learning disability using services in England, only 200,000 have this recorded on their electronic GP records.

In their response to the confidential inquiry, the Government made a welcome decision to include excess under-60s mortality in adults with a learning disability as an indicator in the NHS outcomes framework. However, because of these and other data collection difficulties, they have not been able to provide the baseline figures. One problem is that the mortality review will need to link data from a number of registers, including GP registers, hospital episode statistics, and cancer, diabetes and mortality registries. The Department of Health says that it is working with NHS England, Public Health England and the Health and Social Care Information Centre to explore ways of linking cause of death with GP learning disability registers for this specific purpose.

Test work on obtaining mortality data through the General Practice Extraction Service was promised. A report on progress was to have been delivered by the end of 2013, but none of this has materialised. I understand that the Secretary of State could make a direction to the Health and Social Care Information Centre for this type of purpose. I am therefore seeking agreement from the noble Earl that he will ask the Secretary of State to issue a direction to ensure that this data linkage is made as a matter of urgency. Without it, the mortality review will stall and there will be further needless deaths. At the moment, the Health and Social Care Information Centre is not prioritising this work.

The mortality review has secured £1.5 million of funding for 2014-15 to set up the review function. Can the Minister confirm that this will be recurrent funding, clearly specified in the coming round of NHS business planning, so that we can begin to monitor deaths effectively to ensure that lessons are learnt and that improvements in practice are made?

Finally, the 2012 NHS mandate to NHS England sets out a requirement to provide joined-up care so that people,

“experience smooth transitions between care settings and organisations”.

The confidential inquiry provides many examples of where inadequate transitions have contributed to premature death. I commend the Government’s current emphasis on integrating health and social care, but I have found no reference to the deaths of people with learning disabilities in any of the documents or debates. Can the Minister advise us how the Government are sharing the learning from the confidential inquiry across all departmental programmes so that it becomes embedded as everyone’s responsibility and is at the forefront of everyone’s mind?

Taking action on the recommendations of the confidential inquiry, particularly to ensure that the mortality review is prioritised, is not simply a matter of fairness and equality. If we can get healthcare right for people with learning disabilities, we can probably get it right for everyone. People with learning disabilities and their families have waited a long time—too long—for change. This afternoon, Mencap delivered a petition signed by 2,700 people to the Department of Health asking for urgent action. I hope for a fast response.

I thank noble Lords for signing up for this debate. I am looking forward to their contributions and to the Minister’s response—and ultimately, I hope, with strong political leadership, to an end to the discrimination that people with learning disabilities have been facing for so long.