People with Learning Disabilities: Health Inequalities

Baroness Hollins Excerpts

Thursday 18th July 2013 Lords Chamber

Asked by

[Baroness Hollins]

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

[Baroness Hollins]

My Lords, this is such a timely and important debate, coming the same week as the Keogh mortality review, the Neuberger report and the latest report from the Health Service Ombudsman. Our focus tonight is on health inequalities for a group that comprises some 3% of the population. Our focus is on the remit and findings of the Confidential Inquiry into Premature Deaths of People with a Learning Disability. The inquiry’s report was published in March and the Government’s response was released last Friday. The House will wish to be reminded that I have worked as a psychiatrist with people with learning disabilities for over 30 years and that my adult son has a learning disability.

The institutional discrimination and health inequalities suffered by people with learning disabilities come as little surprise to many of us. For me it is a throwback to some of my own research from over 20 years ago when I reviewed the age and causes of death of people with learning disabilities in three London boroughs over a 10-year period. I found that adults with a learning disability were 58 times more likely to die before the age of 50 than the general population. Over half died of respiratory disease—which I presumed to be a final common pathway—compared with only 15% of the general population. The problem was that I could not get the results published. The BMJ and other medical journals said that it was not of wide enough interest. It was eventually published in a specialist disability journal. Government began to show leadership, however, with the White Paper, Valuing People, and Chapter 6, which addressed healthcare, accepted my suggestion that a confidential inquiry should be included as a recommendation.

In 2006 a formal investigation was conducted by the Disability Rights Commission and in 2007 Mencap published Death by Indifference. By this stage, although Valuing People had recommended a confidential inquiry, it had still not been set up. Death by Indifference was a landmark report and it told the stories of six people with a learning disability who had died in NHS care. It triggered an independent inquiry which was led by Sir Jonathan Michael—I should mention that I was a member of the inquiry team—and the Parliamentary and Health Service Ombudsman conducted an investigation into the six deaths. The Michael report, Healthcare for All, made a firm recommendation to set up a confidential inquiry and the Government at last agreed.

What is a confidential inquiry? It aims to identify common causes of deaths and to make recommendations to improve clinical practice. There are many in existence, some going back more than 50 years, with varying degrees of effectiveness. They involve the systematic review of cases with the identity of patients and clinicians remaining confidential and only aggregated findings being made public. Several of these inquiries have resulted in long-term monitoring and regular reports and one of these is NCEPOD, the National Confidential Enquiry into Patient Outcome and Death. It started with a pilot study of mortality related to anaesthesia but steadily expanded into a wider inquiry to cover all hospital specialties, now including near misses as well as deaths. NCEPOD distributes reports on very specific mortality concerns and if it feels that important recommendations are not being met, it lobbies at both local and national levels. It is this ongoing monitoring and national oversight of the uptake of recommendations combined with the fact that it has been in existence for decades which makes this inquiry effective.

In the confidential inquiry that we debate today Dr Pauline Heslop and her team have recommended the establishment of a national mortality review—basically a beefed-up confidential inquiry. This would guide detailed local reviews but also include a national overview panel. Its wider remit and role would provide an oversight of core data relating to all deaths of people with a learning disability. It could monitor and direct where more detailed reviews need to take place and, vitally, it would make recommendations for changes in practice. A longer-term commitment to this vulnerable patient group is needed for a real impact to be seen. The United States started similar mortality reviews and over the past 10 years it has seen an increase in life expectancy among people with a learning disability. The confidential inquiry we are discussing today was only established for three years—effectively as a pilot. It looked at the deaths of 233 adults and 14 children across five PCT areas in the south-west. Its focus was to determine whether the deaths of people with learning disabilities were premature. The principal aims were to detect factors which contributed to death as well as gaps in health and care services.

The results expose the gulf that still exists between the care received by people with a learning disability and that received by the rest of the population. It found that 37% of deaths would have been potentially avoidable if good quality healthcare had been provided. It found that on average, men with a learning disability died 13 years earlier and women 20 years earlier than the general population. Mencap says that this means that over 1,200 deaths each year across England could have been avoided with good-quality non-discriminatory healthcare—almost 25 children and adults per week. That is a shocking figure, which equates to the number of people thought to have died needlessly over a four-year period at the Mid Staffordshire hospital.

I am sure that other noble Lords will address some of the findings in more detail, but I will focus on the wider picture for a little longer. While Mid Staffs rightly hit the headlines, as did Sir Bruce Keogh’s report earlier this week, the avoidable deaths of people with a learning disability, some of the most vulnerable people in our society, go largely underreported and consistently fail to feature prominently on the parliamentary agenda.

What are the Government doing about premature mortality? On 5 March 2013, Jeremy Hunt said in the other place:

“Today, I am publishing ‘Living Well for Longer: A call to action to reduce avoidable premature mortality’”.—[Official Report, Commons, 5/3/13; col. 60WS.]

Sadly but perhaps predictably, the document did not even mention people with learning disabilities. That is despite the fact that in the 2011-12 NHS outcomes framework, the Department of Health added a placeholder indicator for measuring premature mortality in people with learning disabilities. This was further specified as the,

“Excess under 60 mortality rate in adults with learning disabilities”—

“under 60” because that reflects the current average age of death for people with learning disabilities. Unfortunately in the latest NOF—national outcomes framework—for 2013-14, this indicator is still in the inactive “development” stage. Will the Minister advise when the Government will give it live status and assure the House that the threshold will be reviewed year on year to bring it closer to the threshold of age 75, as in the general population? That would ensure the collection and publication of some vital data.

However, one of the problems is the difficulty that we still have in the identification of people with learning disabilities in health and care records. This was one of the recommendations of the Michael inquiry and, again, the confidential inquiry notes it as being of critical importance. Dr Heslop explains that concerns would never have been raised about many cases reviewed by the confidential inquiry had their care not been scrutinised. I agree with her that professionals learn more and change their practice more by being reflective and reviewing cases using a root-cause analysis approach. Merely telling a professional to do something rarely works, as is evidenced by the lack of adherence to the Mental Capacity Act and the Equality Act.

This inquiry provides a firm foundation of knowledge upon which the Government could take real and purposeful action—urgent action—to address these startling and persistent inequalities. However, this is not borne out in the Government’s unambitious response which acknowledges the findings that health inequalities exist but contains no set goals or timescales and no ways of measuring improvements. They could instead have followed the structured style of response they made to the Winterbourne View hospital scandal by working with stakeholders, including families and carers—many of whom are listening to the debate today, and whose presence I welcome. Will the Government consider a concordat to take forward the confidential inquiry recommendations and the construction of a clear, timetabled action plan?

The lack of commitment to the inquiry’s central recommendation about a mortality review body is disappointing. Despite the overwhelming evidence that this is the right thing to do, a decision will not be made until March 2014, by which time another 1,000 children and adults will have died prematurely. I urge the Government to bring this to the top of the agenda, not to push it down the priority list yet again.

As for the Francis inquiry, we say yes; but what about the enormity of the challenge that the Government face in achieving equality in access to healthcare and in health outcomes for this group? I ask the Minister to persuade the Secretary of State to include in the remit of all future health reports and inquiries, and in the work of the new Chief Inspector of Hospitals, the question, “Did people with learning disabilities fare better or worse?”. At the moment the answer is probably “worse” in all aspects of healthcare. I know that noble Lords will pick up many of the specific issues that I have not touched on, and I thank them for their support and passion for this debate. I also look forward to the Minister’s response and hope that he will be able to reassure this House that the Government are not indifferent and will act much more persuasively in future.

--- Later in debate ---

[The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)]

My Lords, I thank all the speakers in this excellent debate for their very powerful contributions, not least the noble Baroness, Lady Hollins. I want to start by paying tribute to Mencap, which has been campaigning vigorously against the preventable deaths of people with learning disabilities. Mencap has revealed fundamental failures in communication between care providers, on the one hand, and parents and carers, on the other, as the main cause. However, it has also concluded that the only other explanation for these preventable deaths is prejudice. The disturbing reality is that this prejudice, although rarely revealed in words, finds its expression in deeds, sins of omission and neglect. Any failure to understand what should be a fundamental tenet of NHS practice is shameful: every life is different, yet every life has the same value.

I want to take this opportunity to make the Government’s position clear. Mencap’s report, Death by Indifference, marked the start of six years of shocking revelations of inhumane and degrading treatment, culminating in the recent publication of the Confidential Inquiry into Premature Deaths of People with a Learning Disability. We established the confidential inquiry in 2010 and funded and supported it for three years. As Sir Jonathan Michael’s report, Healthcare for All, recommended, it was time limited. Its purpose was to provide evidence on the relevant issues and guidance on preventing premature deaths. It has done this very effectively and I thank the confidential inquiry team for its excellent work.

This important report reached the conclusion that people with learning disabilities are continuing to die or experience poor outcomes because they are not getting the right care, and noble Lords have cited some graphic and disturbing examples this afternoon. Although the report makes for sobering reading, it gives us a clear indicator of the areas that need to be tackled, preparing the ground for the Government’s response to the confidential inquiry which was published last Friday. Our response makes clear our determination to eradicate substandard practice and to work in partnership across the health and care system to deliver the improvements that we all want to see.

In our response, we set out a series of specific actions. We will use the information strategy for health and care to improve how we identify and respond to people with learning disabilities and their health and care needs. We will link data about cause of death with other information to better understand and respond to premature mortality among people with learning disabilities. We expect local organisations to use local mortality data to inform joint strategic needs assessments and joint health and well-being strategies. We will support named healthcare coordinators being available to people with learning disabilities. They will coordinate a person’s care, talk to other professionals and be involved in planning the individual’s care.

NHS England will review plans for learning disability annual health checks. We know that appropriate health checks can identify needs which can then be addressed by referral to appropriate services. We will try to strengthen the NHS standard contract to improve the care of people with learning disabilities. We know that the contract is a powerful lever to incentivise good practice. We will monitor, through the mandate, the progress the NHS is making to ensure that people with learning disabilities in vulnerable circumstances receive safe, appropriate, high-quality care all the time.

We will work with partners to review awareness and understanding of the Mental Capacity Act and how it works in practice in making sure that people receive appropriate care at all times, including at the end of life. We will work with partners to review guidance on cardiopulmonary resuscitation. NHS England will appoint a national clinical director for learning disabilities, who will help improve the experience of people with learning disabilities in care. Local areas can set up their own arrangements to review mortality in people with learning disabilities. Some are already doing so, working with the confidential inquiry team. This work will be shared more widely for other areas to develop similar approaches. Building a strong understanding of what is happening in local provision will be critical to making change happen.

Over all that, in the Health and Social Care Act, we have a new specific statutory duty on the Secretary of State, NHS England and clinical commissioning groups, with the aim of focusing on reducing inequalities throughout the health service in both access to services and outcomes achieved. This will be an enormously powerful tool in addressing the health inequalities which people with learning disabilities face.

However, the response to the confidential inquiry is just part of a programme of activity from government and partner organisations designed to deliver system change and a shift in culture and attitudes. Changes in health and social care delivered by the Health and Social Care Act 2012 provide the building blocks for that shift. First, safe, appropriate, high-quality care is a key priority for NHS England. The noble Lord, Lord Hunt, asked about the capacity of NHS England to focus in this area. It is under a specific legal duty to tackle inequalities and advance equality. Priority areas where we expect progress to be made by 2015 include supporting people with multiple long-term physical and mental health conditions and improving their quality of life, and preventing people from dying prematurely.

Secondly, the NHS Outcomes Framework 2013-14 will allow us to measure the quality of services and outcomes for people with learning disabilities. This framework includes an indicator on preventing people with learning disabilities from dying prematurely. Improvements for people with learning disabilities will also be a crucial element of success across the framework as a whole.

Thirdly, Transforming Care, our national response to Winterbourne View hospital, sets out a programme of actions to ensure that people with learning disabilities or autism no longer live inappropriately in hospital, and receive optimum care. A wide range of delivery partners signed up to a programme of action designed to deliver transformed care in the Winterbourne View review concordat. The concordat sets out a number of specific actions for NHS England, including ensuring that all primary care trusts develop registers of people with learning disabilities or autism who have mental health conditions or behaviour that challenges, and making clear to clinical commissioning groups that they are expected to maintain local registers and, with the local authority, review individuals’ care. All reviews will be completed by the end of July. By next April, every area will have a joint plan to ensure high-quality care and support in line with best practice. By next June, everyone will have moved to community-based support where appropriate.

[Baroness Hollins]

I hope the noble Lord will forgive me. The Winterbourne View concordat does not address the physical health needs that we are talking about in this debate. I asked whether the Government might consider a similar concordat to look at the physical health needs of people with learning disabilities. Would the Minister care to comment?

[Earl Howe]

My Lords, I would like to deal with some of the points raised in the debate. Can I say, as I always do, that if I fail to cover all the questions raised, I will of course write to noble Lords afterwards? On the issue of a concordat, which was raised also by my noble friend Lady Jolly, our response makes clear that we have already been able to take action in some areas—for example, by asking organisations to review and update guidance. In other areas, progress relies on several issues, such as new and emergent organisations developing their strategic approach, and key individuals being in post. Across all of the actions, there is a broad timescale with a commitment to provide regular updates on progress. The Department of Health will continue to review progress through the Learning Disability Programme Board.

On records, data and information we are working with the Health and Social Care Information Centre, NHS England and the Improving Health and Lives Learning Disability Observatory to address the issues. There are several areas we need to look at. For example, we know that there is already information in GP practice learning disability registers. We want to make better use of this by linking it to other data that is already collected. We will have an update on progress by the end of the year. I will write to supplement those comments because my time is running short.

My noble friend Lady Tyler asked what support the Government will give to local areas to implement the confidential inquiry recommendations. The department is working closely with the public health observatory to make sure that its work to share good practice includes the issues raised by the confidential inquiry. We have already suggested to the inquiry team that we need to work in partnership with NHS England and other stakeholders. To make progress on the actions we need to align with work that the inquiry team is already doing at a local and regional level.

The noble Baroness, Lady Hollins, asked when the outcomes framework indicator on premature deaths will be live. It is live from 2013-14. We are currently collecting data to underpin the indicator and we will have data by November of this year.

The national mortality review body was a subject raised by many noble Lords. The department and the confidential inquiry team organised a meeting in March to discuss the proposal for a mortality review body. I am aware that the noble Baroness, Lady Hollins, and other stakeholders with expert knowledge and interest attended that meeting. Our response confirms that NHS England will consider the proposal to establish a national mortality review body, including looking at the costs and benefits by March next year. Noble Lords expressed their concern about that timeline and I have no doubt that NHS England will take note of the strength of feeling expressed by noble Lords on this issue during today’s debate.

I have a lot more to say about liaison staff, the Mental Capacity Act, reasonable adjustments and other themes, not least those raised by the noble Baroness, Lady Emerton, on care pathways and the role of nurses. I will write on all of those issues. I want to end with a reassurance that people with learning disabilities and family carers remain at the heart of everything we do. The Government must lead by example. That is why the Learning Disability Programme Board includes learning-disability self-advocates and family carers as well as a self-advocate and the chief executive of Mencap. We have a long way to go but change must be effected at scale and pace. There can be no more excuses or procrastination from any part of the system if we are to achieve our collective goal of a society where everyone is valued and has the chance to lead productive and, most importantly, healthy lives.