People with Learning Disabilities
(10 years, 5 months ago)
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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.
Lord Ribeiro (Con)
My Lords, I thank the noble Baroness, Lady Hollins, for initiating this debate, which challenges us to achieve the exhortation in the gracious Speech for Her Majesty’s Government to continue work to build a fairer society. I believe the Government are trying to do so but, while the concept of a fair society is apparent in our everyday lives through the experiences of those we meet, it is less clear in relation to mental health, intellectual disability—or learning disability, as I will refer to it—and those with physical health needs.
Part of the problem lies in the education and training of doctors, who ultimately are the leaders who set the example which junior doctors follow. Your Lordships may wonder why, as a retired surgeon, I would have anything to say about learning disabilities. First, I must declare an interest as one of my family members has Down’s syndrome, a condition associated with learning disabilities and premature mortality compared to the national norm.
In the late 1970s and 1980s when I was appointed a consultant surgeon, mental hospitals which previously had been no more than asylums were closing all over the country. I worked as a consultant surgeon to Basildon and Orsett hospitals and part of my contract required me to visit South Ockendon hospital, which was a mental institution. There I undertook consultations and occasional operations—some of them quite major. On looking through the hospital records of one of the patients I was amazed to find that the cause of admission in 1950 was “imbecile”. Many patients in those days found themselves in institutions as no one could cope with their condition or behaviour.
The care that these patients received in the five years I attended was superb. You could have eaten a meal off the out-patient parquet floor, which was cleaned and polished to perfection. Despite the subsequent closure of the hospital through alleged incidents of ill treatment of patients, I never witnessed any treatment other than kind consideration and attention to the individual patients under its care. We are all horrified by the stories at Winterbourne View and Mid Staffordshire but within these institutions, like South Ockendon, there was also compassionate care.
My point in making these observations is that subsequently, when the hospital closed and the patients were managed in the community, I had no recourse to seeing them in their natural habitat, supported by caring nursing staff, who knew them and could care for their needs. Indeed, the nurses would often interpret for those unable to speak intelligently.
In the Confidential Inquiry into Premature Deaths of People with Learning Disabilities report, of the 247 patients who died, 30% had limited verbal communication and 22% did not communicate verbally at all. Patients would often arrive in my out-patients’ clinic with no detailed information about their learning disabilities, which led inevitably to delays and searching for records to make sure one had all the relevant information. How easy it would be in this computer age to give every one of those patients a memory stick on which their medical records were stored. I believe that the Government are making efforts to achieve such personalised medical records. Unlike the failed IT projects of the past decade, we could make a case for targeting just this one vulnerable group, and using that as a project to see whether it can actually work.
Public Health England is producing guidance for people with learning disabilities which help those who are old enough to be enrolled in the various screening programmes we have. As a colorectal surgeon, one of the most important screens is that for bowel cancer. I can assure noble Lords that, for the initiated, understanding how to use and perform the screens can be quite difficult. The conclusion of the review is that despite the lessons learnt from previous reports and recommendations, the professions are either unaware of or do not include in their normal practice adaptions to services that would assist those with learning disabilities. Identifying patients with learning disabilities who have acute conditions can be difficult and can lead to delays in diagnosis and treatment. A good carer or parent might be able to interpret symptoms but, as the report identifies, delay or problems in diagnosis or treatment are the weakest links in the pathway of care.
There are also problems around identifying needs and providing appropriate care in response to changing needs. More than one-third had difficulty communicating their pain, and for those with acute abdomens it could prove difficult for admitting surgeons to make a diagnosis. In our current surgical practice there is an overreliance on scans, whether they be ultrasound, CT or MRI scans, whereas a good history is usually a shortcut to a working diagnosis. Those skills need to be recognised and utilised. Learning disabilities may also be a contributing factor to premature death, to which the noble Baroness, Lady Hollins, referred. We need better systems for flagging up patients with learning disabilities who attend outpatients or are admitted. Our medical students, junior doctors and all health professionals need to be made aware of the needs of people with these disabilities.
We also need to apply the parity of esteem that we have talked about on previous occasions by treating everyone, whether they present with physical conditions, mental conditions or learning disabilities, exactly the same. The Government can assist in this, and I am pleased to hear that Health Education England is making progress in this respect. It should also take note of the Greenaway report that resulted from the Shape of Training review. In the striving effort to make doctors more generalist in their approach rather than specialist, we must ensure that we take into account the problems related to learning disabilities and mental health in general. The education of health professionals is key to this, both for those in the service and for those yet to come, so that a fairer society that includes people with no physical conditions can be realised.
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.
Lord Rix (CB)
I very much welcome the opportunity to speak in this important debate. As my noble friend Lady Hollins said, it was almost a year ago that we were here debating the appalling health inequalities faced by people with a learning disability. Of course, that was in the context of the Government’s response to the Confidential Inquiry into Premature Deaths of People with Learning Disabilities.
In that debate I told the House the fact that,
“over a third of those investigated died due to poor healthcare is nothing short of an outrage and should be front-page news”.—[Official Report, 18/7/13; col. 968.]
It never has been and the fact that a year on there has been little progress from the Government on this, and no Statement made on the subject in Parliament, should also be considered newsworthy. Would the media have such a blind eye for any other group in society?
As someone who has worked in the world of learning disability for many years, and indeed as president of Mencap, I am only too aware of the long-standing and pervasive health inequalities that exist. Mencap’s Death by Indifference, to which the noble Baroness, Lady Hollins, referred, is perhaps the organisation’s most powerful campaign and captures a number of distressing but important stories of people who have lost loved ones due to poor quality of care, neglect or indifference. In short, their lives have been valued less than those of others.
The campaign is as important today as when it was launched back in 2007, as is Sir Jonathan Michael’s inquiry which followed. Over the years Mencap has supported many families who have lost sons, daughters, brothers and sisters due to poor-quality healthcare. In 2012 Mencap published Death by Indifference: 74 Deaths and Counting, which showed the number of families who had reported deaths by indifference since 2007. Sadly, this number is now over 100. Many of those family members were in the Public Gallery at the debate last year and I know that many will be watching today on television as well. We owe it to them to make urgent progress on this. They are not standing alone. As my noble friend Lady Hollins said, Mencap will shortly hand in to the Department of Health a folder of nearly 3,000 personal messages from family members and campaigners urging the Government to take action.
I am, of course, fully supportive of the recommendations from the confidential inquiry. They take us a long way towards equality in healthcare for this vulnerable group of people. In particular, the central recommendation on an overseeing national body, described by my noble friend Lady Hollins, is critical. As my noble friend also mentioned, I understand that NHS England has committed to establishing a national mortality review by March 2015. That is one step forward but it is hugely disappointing that it has taken so long to agree this. People with a learning disability are still dying prematurely from this institutionalised indifference.
Mencap called for a number of commitments to bring about the basic right for equal healthcare. Annual health checks are available but not promoted by many and often conducted far too casually. This needs to change and should be a permanent part of the GP contract. All health professionals should of course act within the law and receive training around the Equality Act so that people with a learning disability get the reasonable adjustments they may need: longer appointments, easy to understand information, proper diagnosis and so on. Mencap has done some great work through the Getting it Right programme which provides training for healthcare professionals up and down the country, co-delivered by people with a learning disability themselves. Furthermore, we have great examples of standardised hospital passports working very effectively. These should be routine. I encourage the Government to consider this.
There are many more issues and suggestions that I know other noble Lords will cover but, essentially, this is about attitudes. People with a learning disability are simply not as valued by the health service or general public as others. That needs to change. It is not hugely dissimilar to progress on moving people from institutions such as Winterbourne View, that ghastly place where horrific abuse was uncovered a few years ago by the BBC’s “Panorama”. Progress, or lack of it, on that has been abysmal and it will come as no surprise to your Lordships that I also sought a debate on that subject as well.
People with a learning disability have suffered second-rate healthcare for far too long, resulting in premature and painful deaths. We owe it to the families who have lost loved ones to stop the need for debates like this and show the bereaved—and those about to go through the same heart-rending experience—that the NHS has learnt its lessons and that health inequalities for people with learning disabilities are indeed a thing of the past.
The Lord Bishop of Carlisle
My Lords, in this debate we are asking Her Majesty’s Government to do three things. The first is to recognise the situation that currently exists, as we have heard, with regard to people with learning disabilities. It has been pointed out that the situation is one of considerable inequality. Even when all the other factors have been taken into account, the disparity in mortality between people with and without learning difficulties is alarming. There does not appear to have been any significant change in this disparity over the past decade or more. The statistics speak for themselves. They have already been quoted more than once so I will not repeat them.
Of course, there have been some positive changes since the confidential inquiry, including some proactive adjustments and some sharing of best practice. However, as the main causes of premature mortality have been identified and are largely avoidable, there is a clear need for a change in healthcare culture—or, as the noble Lord, Lord Rix, called it, a change in attitude. The current quality and effectiveness of health and social care given to people with learning disabilities is deficient in various ways, including the provision made for attendance at clinic appointments and investigations. The issues are indeed complex, but not impossible. Recognising the problem must be the starting point for change at both national and local level.
Secondly, we are asking Her Majesty’s Government to collect some further information, not least through the central body that has been referred to. In particular, we need to know about the number and location of learning disability liaison nurses, who provide a wide range of vitally important services and support to people with learning disabilities. These nurses have been shown to make a huge difference, for instance by research done at St George’s Hospital, University of London. In some areas, they are key members of community learning disability teams. They provide advocacy and help to patients, advice to doctors and other healthcare staff, and assistance to carers and their families. One in 50 people in this country has a learning disability, but some trusts employ no learning disability nurses.
It would also be helpful to know why, as the noble Baronesses, Lady Hollins and Lady Andrews, observed, less than a quarter of those with learning disabilities in England are recorded as such on GP registers. That has implications for critical referrals to specialists, as well as to palliative care services. There seems to be no system at the moment to identify individuals with learning disabilities who have a life-limiting condition.
Thirdly, we are asking Her Majesty’s Government to take immediate action in certain areas. They include ensuring that healthcare staff are adequately trained in caring for those with learning disabilities—a point made by the noble Lord, Lord Ribeiro. As it happens, that is another potential role for learning disability liaison nurses and a further argument in favour of having as many of them as possible, and at least one per trust. It is vital to ensure that there is no discriminatory thinking about quality of life, and to provide those with learning disabilities with equal access to healthcare.
The second area for action is informing patients, carers and families about the existence of community learning disability teams where they exist. Many are currently unaware of the potential help that they so desperately need and which could be available to them.
A third area for action involves promoting advocacy of various kinds for people with learning disabilities not only by healthcare professionals but by the voluntary sector. I have recently been involved with the commission looking into the effects of welfare reform in Cumbria. One of our principal findings has been that advocacy—usually unpaid—for some of the most vulnerable people in our society is crucial to their mental and material well-being. I think that the noble Lord, Lord Ribeiro confirmed that the same applies to those with learning disabilities who are in need of healthcare.
A fourth area for action is inviting both clients and carers to be involved in the design and monitoring of services—the kind of services to which the noble Lord, Lord Rix, referred: patient passports and annual health checks. I know that NICE is already looking at providing that with its guideline development groups, and NHS England wants to do the same with consultative and participative care planning.
The Department of Health has already set several provisional goals, including closing the mortality gap between those with and without learning disabilities within three years. This is an absolutely excellent aspiration. A large part of the purpose of this debate is to encourage its delivery. As the noble Baroness, Lady Hollins, pointed out, updates involving data collection on premature mortality in those with learning disabilities have been promised, but they have not yet been produced. Further delay means more people with learning disabilities dying prematurely and, in some cases, avoidably, so I hope that we may soon see some tangible action in support of those who desperately need it.
Lord Patel of Bradford (Lab)
My Lords, I, too, add my thanks to the noble Baroness, Lady Hollins, for having secured this debate on such an essential issue: one that goes to the heart of the kind of society we should be aspiring to be, one that cares for and protects the most vulnerable of its members. As we have already heard from the noble Baroness, Lady Hollins, and others, we are clearly not meeting this aspiration. We are failing to protect those who deserve our constant and vigilant care and protection. In fact, we should all be truly shocked by the stark findings of the confidential inquiry—that more than a third of deaths of people with a learning disability could have been prevented if they had received better healthcare.
I find that completely unacceptable. What is even more unacceptable is that some of the reasons for those shocking figures are that people lacked information about their health—information that they could understand—or the provision of professionals and health advocates to help to explain such information. Yet as my noble friend Lady Andrews said, we have legislation to ensure that this happens. The Mental Capacity Act 2005 set out a comprehensive statutory framework to define mental capacity, help those lacking it to make their own decisions where they can and enable sound decisions to be made for them when they cannot. The Act is there to empower, protect and support people who lack mental capacity and to ensure that professionals, families and friends who care for people who lack it understand more fully and clearly their legal rights and responsibilities. So what has gone wrong?
Implementation of the Mental Capacity Act is clearly failing; it is certainly failing for many people with a learning disability. This was clearly highlighted by the confidential inquiry but also by the post-legislative House of Lords Select Committee that I was a member of, along with the noble Baroness, Lady Hollins, and my noble friend Lady Andrews. The committee heard a huge amount of written and oral evidence from experts, professionals, service users and their families. I shall read just two sentences about the key finding of the committee’s report. It stated:
“Vulnerable adults are being failed by the Act designed to protect and empower them. Social workers, healthcare professionals and others involved in the care of vulnerable adults are not aware of the Mental Capacity Act, and are failing to implement it”.
The committee’s findings are fairly clear.
I am pleased that the Government put out a joint statement earlier this week from the Department of Health and the Ministry of Justice. It said that they,
“share the Committee’s concern at the low levels of awareness and understanding of the Act. Too many people who may lack capacity may be missing out on the legal rights that the MCA gives them. This is not tolerable and we are determined to put this right”.
While I of course welcome this acknowledgement, quite frankly it falls far short of my expectations and, I am sure, those of your Lordships. In the face of the enormity of the problem, we must have clear actions to swiftly ensure that the protections of the Act work as they were intended to: empowering patients to make choices about their healthcare and protecting the rights of those who lack capacity by ensuring that best interests decisions are made.
Some of the practices highlighted by the confidential inquiry are simply illegal and there are numerous instances of the Mental Capacity Act being misapplied or not used at all, including the failure to appoint independent mental capacity advocates where there are no family members present to ensure that the wishes of individuals are understood and respected. I would like to highlight the consequences of what this means in reality by briefly reading a case study from Mencap’s Death by Indifference report that clearly shows how grave the individual circumstances can be when staff fail to understand the Act. I take this opportunity to thank Mencap, particularly Rob Holland and his team, for its expert advice and briefing on this issue.
The case study is about a woman called Anne Clifford, who died of pneumonia on 20 July 2010, aged 53. She,
“had Down’s syndrome and a severe learning disability. Although she had no verbal communication, her sisters, Monica and Mary, describe her as a ‘feisty character who was able to show what she liked and disliked’ … When Anne was first admitted to the Mayday Hospital”,
in Croydon,
“she was put in the intensive care unit … and placed on life support as she was having difficulty breathing. She was diagnosed with pneumonia. From the moment of Anne’s admission, Monica contacted the hospital every day to enquire about the treatment her sister was receiving. She also made it absolutely clear to staff that she and her sister Mary were to be kept fully informed about Anne’s progress”,
which was their right under the Mental Capacity Act.
The report continues:
“When Anne was eventually able to breathe unassisted, she was placed on a general ward. Monica and Mary viewed this as a very positive step and began to believe that Anne could recover. However, during one of Monica’s regular phone calls to the ward, she was told that Anne’s pneumonia appeared to be returning. Monica then naturally enquired if Anne would be returned to the ICU and put on life support. It was then that she learned that Anne’s notes stated that she was not to be returned to the high dependency unit and that she would not be resuscitated. This was the first that the family knew of this. Alarmed, Monica began to seek advice and, with the assistance of the adult safeguarding team, a best interest meeting was called. But the consultant responsible … informed Monica that he had agreement from other doctors”,
on the “do not resuscitate” decision. The Mental Capacity Act states that Anne’s family should have been consulted before the best interests decision was made. This did not happen, resulting in the worst possible consequences for Anne and her family.
Anne is not alone in having been failed by health professionals who did not understand the Mental Capacity Act. There are other examples of “do not resuscitate” orders being used in situations where mental capacity has not been fully assessed.
It is hard to believe that seven years have passed since the Mental Capacity Act came into force. While the expectation, rightly, is that all health and social care professionals should have knowledge and understanding of the Act, evidence has consistently shown this not to be the case, and our committee found that staff continue to be ill equipped with knowledge about the Act. Even with the development of resources and materials for professionals, far too few understand the Act well enough to confidently and successfully ensure that it is implemented correctly.
Knowledge and understanding of the Act must be available for patients, families and staff to ensure that it is applied properly. As such, the confidential inquiry’s suggestion that a 24-hour Mental Capacity Act phone line, staffed by expert advisers in all matters relating to the Act, must be established with some urgency, and I hope that the Minister can give me some good news on that front. In addition, Mental Capacity Act training should be mandatory core training, and minimum training standards are desperately needed; my noble friend Lady Andrews spelt out why. I hope that the Minister can reassure us that this is high on the Government’s agenda and we can see some positive moves very shortly.
Lord Adebowale (CB)
My Lords, I declare my interests as chief executive of Turning Point, which provides health and social interventions for many people with learning disabilities, and as a non-executive member of NHS England. I thank the noble Baroness, Lady Hollins, for tabling this debate nearly a year after the Government responded to the report of the Confidential Inquiry into Premature Deaths of People with Learning Disabilities, and indeed just days before the start of this year’s Learning Disability Week. Obviously, I share the views that have already been expressed about the noble Baroness’s contribution to the field of care for people with learning disabilities.
The intolerable and often repeated statistics continue to stand out: 37% of the deaths that the confidential inquiry investigated could potentially have been avoided had the individuals had better care. In a sense, the points made by both noble Lords, Lord Ribeiro and Lord Patel, speak to the lack of training and knowledge necessary to care properly for individuals with learning disabilities. The situation is indeed intolerable.
The inquiry examined many issues that have been discussed and referred to by the noble Baroness, Lady Hollins, et al during their excellent contributions to the debate so far today, including the inappropriate “do not attempt cardiopulmonary resuscitation” orders, which the noble Lord, Lord Patel, referred to; problems with adhering to the Mental Capacity Act, which are, frankly, shocking; and incorrect or delayed diagnosis and poor co-ordination of care, which is also a familiar problem across health and social care as a whole for those at the sharp end of the inverse care law.
Another frustrating finding was that the concerns of individuals that their families and carers were reportedly not taken seriously enough by medical professionals in one-quarter of the cases where the individual was identified as being unwell. A case that illustrates this and shocked me was that of Henry. Despite his family’s concerns, hospital staff assumed that the bleeding from his nose and mouth was because he had bitten his tongue while fitting, but it was later discovered that he had actually been suffering from a brain haemorrhage. Mencap’s excellent report, Death by Indifference, gives many cases that are, sadly, even more shocking than that one, and refers to the fact that although family members and carers may not be medical experts, they are experts with valuable insights and are well placed to know when something is just not right. They, after all, are the ones who know the individuals best and understand their needs.
The service has to be able to properly understand and respond to people’s needs. That is one of the key challenges that I will come back to shortly. First, I turn to some of the inquiry recommendations and the Government’s response. The recommendations gave the Government and other agencies a clear path to follow: identification of people with learning disabilities; reasonable adjustment audits; named healthcare co-ordinators; improvement of annual mental health checks; Mental Capacity Act training; clarity around “do not attempt cardiopulmonary resuscitation” orders; and better local and national learning disability data, to name but a few.
As I have found in my own work carrying out inquiries into deaths associated with mental health, the implementation of policies, guidance and recommendations is key to success. While the Government’s response last summer was welcome, it lacked a clear timetable for improvements, given the urgency needed. There was a shying away from the recommendation for a national learning disability mortality review body, and this is of concern. However, I now understand that resources have been made available and work is under way by NHS England to establish how a mortality review function would work, which is strongly welcomed—although, if I were to be critical of a body on which I sit, I would have to agree with the noble Lord, Lord Rix, that it has taken too long. When NHS England was established, one of the first things we did was spend time with people with learning disabilities in an attempt to understand health and social care from their point of view. We have to start implementing a little faster what they told us.
The inquiry’s revelations are everyone’s problem, and improvements need to happen at local and national level and across different agencies and among health services and providers. The Government need to continue to provide the leadership needed for change to happen as robustly as they did in the wake of Francis inquiry. No doubt we will hear more from the Minister today on other progress since the Government’s response was published. At the heart of the inquiry was the fundamental issue of meeting and responding to people’s needs properly. That is often about changing deeply rooted ways of working, treating people as individuals and avoiding one-size-fits-all approaches or making assumptions about people. In short, it is about equality.
As Sir Jonathan Michael said in his 2008 inquiry into healthcare for people with learning disabilities, and as the confidential inquiry also highlighted, equal does not mean the same. Reasonable adjustments to enable people with learning disabilities to have parity of access to health services are not particularly difficult to make, and we should not pretend that they are. Health and social care service providers across the board must be able to respond to the needs of the people who they serve, rather than the other way round. Although there is much talk about hard-to-reach groups, we should look to improve hard-to-reach services. This again comes back to involving individuals and their families and carers in their health and social care. We are not going to make improvements without doing this, and if we want to be able to offer tailored and relevant services, we should involve people as a matter of course.
In conclusion, we also need to learn lessons from the past because if we keep doing what we have always done, we will get what we have always got. As the confidential inquiry team noted, optimism that lessons had been learnt from past reviews was quashed during its work, which showed that the same issues are resurfacing, which is simply unacceptable. The inquiry’s recommendations offer a significant opportunity, so they need to be address as a matter of urgency alongside improving the care culture and responding better to people’s individual needs. People with learning disabilities must receive the same standards of care as everyone else. They must also receive the same level of determination from the Government to lead the improvements that are needed.
Baroness Warwick of Undercliffe (Lab)
My Lords, I, too, thank the noble Baroness, Lady Hollins, for introducing this most important debate. She is a doughty advocate for those with learning disabilities, and I am glad to be able to support her in this debate.
Like many across the Chamber, I am deeply shocked and concerned by the findings of the confidential inquiry into premature deaths, but I am also shocked and concerned at the lack of action by the Government. The appalling statistics speak for themselves. I repeat just one: men with a learning disability die 13 years earlier than the general population, and women die 20 years earlier. This stark fact alone should focus all our minds in this House. I say I am shocked and concerned because I was expecting to come here today to discuss progress on this agenda, yet as far as I can see, very little has been done. It is not as if this is something new to the health service and policymakers.
Some 20 years ago, research by the noble Baroness, Lady Hollins, exposed these stark inequalities. It is worth repeating the litany the noble Baroness gave of the reports since then: the point was made again in 2001 in the Valuing People strategy, by Mencap through its Death by Indifference campaign in 2007, in the ensuing report from Sir Jonathan Michael and most recently by last year’s confidential inquiry.
Mencap has been mentioned several times in this debate. I thank it for its briefing and for its immensely important work. I agree with the noble Lord, Lord Rix, himself a staunch campaigner for those with learning disabilities, that Mencap’s Death by Indifference campaign is one of its most powerful and is as important today as it was when it was launched. It has worked tirelessly to support families who have lost loved ones and, most importantly, to tell their story. It has also striven to promote good practice through the Getting it Right charter, to which more than 200 hospitals have signed up. The charter was produced together with professionals and the royal colleges, and is a set of actions that hospitals and healthcare staff commit to in order to break the historical cycle of health inequality faced by people with a learning disability.
These actions include appointing learning disability nurses, ensuring that hospital passports are available, and making sure that staff are trained in learning disability awareness as well as ensuring that families, carers and, of course, people with a learning disability are respected and listened to. It is a list of commitments that, if followed through and adopted right through the caring professions, would make a huge difference. I hope that the Minister will commit the Government and NHS England to much more vigour in their promotion of the actions in the charter.
I will say a few words about training, and then something about the importance of annual health checks, which have already been referred to today. On training, medical and nursing students seem to be woefully underprepared to treat people with a learning disability. This seems hard to believe, considering that there are around 1.4 million people with a learning disability across the UK. However, a final-year student nurse who was about to graduate told Mencap that she had had only one lecture on learning disability on her three-year course. This appears to be woefully inadequate, particularly given that this group is much more likely to have long-term and multiple health needs, as well as specific needs around support. I wonder whether this lack of training will be the case for other groups. I rather doubt it. In fact, it seems to me to be a national scandal. I hope that the Minister will comment on the inadequate nature of training provision in learning disability and tell us what he, the department, NHS England and health education will do urgently to address this.
Annual health checks have been mentioned already. I agree with other noble Lords that they are essential in reducing premature mortality and preventing people ending up in acute care. People with a learning disability are more likely to have long-term medical conditions such as epilepsy and cardiovascular problems. In addition, people with a learning disability are more likely to have multiple health conditions. Indeed, the inquiry found that a fifth of those who died had seven or more medical conditions. Annual check-ups are therefore critical both for GPs and specialists to monitor progress but also to help people to manage their conditions.
However, it is not just about making sure that everyone has an annual health check: the checks must be of high quality. It comes back to training: it should undoubtedly be mandatory for all students. Unfortunately, while some annual health checks are carried out to a high quality, others are not. Mencap has been informed of examples where health checks have been carried out by nurses, instead of GPs as they should be. Other scenarios include GPs ignoring the patient and directing all questions to family members who are with them; I am reminded of the radio programme, “Does He Take Sugar?”. In other cases, patients or family members are asked simply to fill in a form, and the patient has not been examined at all. In the worst cases, some GPs assume that separate conditions are actually symptoms of a learning disability and therefore refuse to treat them, when in fact the conditions are easily treatable and nothing to do with a person’s learning disability.
So what must the Government do? The Government and Health Education England must set mandatory minimum standards of training and continuous professional development in learning disability. Ensuring that our health professionals have good-quality training and personal development will lay the foundations for at long last putting a stop to people with a learning disability dying needlessly. Furthermore, annual health checks must be carried out by suitably trained GPs, and completed thoroughly, with understanding and care. Like my noble friend Lady Andrews, I ask the Minister to update us on the use of data, not just to ensure that annual health checks are undertaken but to explore the care that people with a learning disability receive throughout the health system.
Mencap found that this was not about lack of money, active negligence, mistaken diagnosis or even due to accident, but because of indifference. It went so far as to describe the treatment in hospitals of people with learning disabilities as “institutional discrimination”. How can we accept that? Surely we must regard that as a call to arms from this House for dedicated and immediate action from the Government and the professions to restore the faith of those with learning disabilities and their families that the health service will treat them equally, fairly and with proper compassion. I look forward to the Minister’s response.
Lord Wigley (PC)
My Lords, I am very glad to speak in this important debate on tackling the inequalities that people with a learning disability face within healthcare. I declare my interest as a vice-president of Mencap.
My noble friend Lady Hollins set out very clearly the Government’s failure to implement fully the findings of the confidential inquiry, which was set up following the publication of Mencap’s report, Death by Indifference. The lack of progress reflects badly on the Government. It is completely indefensible when we consider that the inquiry found that 37% of deaths investigated could have been prevented with better healthcare. How many more will die before more purposeful action is taken?
I strongly support the central point the noble Baroness made—namely, that there must be robust national oversight—and I look forward to the Minister’s response to that. However, I will focus attention on how to ensure that reasonable adjustments are made so that people with a learning disability have fair access to healthcare, their voices are heard and they get the right treatment.
Hospitals and other healthcare settings are under a legal duty to make reasonable adjustments for people with a learning disability to access healthcare effectively. That might include simple things such as making appointments by e-mail, providing treatment information in easy-to-understand formats, sending text or phone appointment reminders, or offering longer appointments. Such adjustments are not costly. Despite legal duties under the Disability Discrimination Act and now the Equality Act to make reasonable adjustments, they are often not undertaken, which leaves those vulnerable people undiagnosed, misdiagnosed or without the information they need to make informed choices.
Some noble Lords may know that I was a commissioner at the Disability Rights Commission back in 2006 and worked on an 18-month investigation into this very subject. The final report, Equal Treatment: Closing the Gap, exposed that reasonable adjustments were not being made across the board, so it came as no surprise when the confidential inquiry highlighted the very same problem.
We desperately need to move forward on this. However, we should also highlight where good work has been done, and I will draw on an example from the Royal College of Nursing report, Strengthening the Commitment. The report details some of the steps taken by St George’s Hospital to make adjustments for people with a learning disability as well as to help reduce anxiety, permit family members to provide emotional and advocacy support, and enable professionals to treat people in an efficient and timely way.
Those steps include no fixed visiting times for family, carers or friends, so that they can be with patients for as long as they want. Food and drink is offered to family and carers to ensure that they can be with the person they are supporting at any time; and, when staying at the hospital, family members or carers are provided with a chair or even a bed if they prefer. They also offer the first or last appointment of the day so that people who find it traumatic to wait do not have to do so, and double appointments are made available because they permit a fuller assessment of people’s needs, which is likely to result in more effective treatment.
A specific example of how reasonable adjustments were made at the hospital involved a person called Trevor. Trevor had capacity to consent to have dialysis but pulled out the tubes after 30 minutes because he was unable to judge how long the procedure had taken and wanted to leave. The reasonable adjustment which was made in his case was to provide a healthcare assistant to be with him throughout the four-hour treatment to talk with him and to encourage him to complete the dialysis. Over time, he stopped needing to have someone with him and he now does the dialysis by himself—a very reasonable adjustment.
Noble Lords may agree that encouraging hospitals and healthcare professionals to make reasonable adjustments, often at little or no cost, will go a long way to tackling these appalling health inequalities. I look forward to the Minister’s reassurances that when innovation and good practice are evident they will be promoted and replicated so that reasonable adjustments are the norm rather than the exception. Will the Minister give his absolute commitment to these matters and not accept second best for some of the most vulnerable people in our communities?
Lord Hunt of Kings Heath (Lab)
My Lords, I, too, welcome the debate and pay tribute to the noble Baroness, Lady Hollins, both for initiating the debate and for being an enthusiastic champion over so many years of people with learning disabilities. I agree with my noble friend Lady Warwick, who repeated those figures from the confidential inquiry about the poor life outcomes for people with learning disabilities. The fact that men with learning disabilities die on average 13 years sooner than men in the general population and women 20 years sooner is really sobering. I also find it sobering that 22% of those with learning disabilities who died under the work of the confidential inquiry were under the age of 50.
As my noble friend Lady Andrews pointed out, 29% of those who died had,
“significant difficulty or delay in diagnosis, further investigation or specialist referral, and for 30% there were problems with their treatment”.
The report states:
“The lack of reasonable adjustments to facilitate healthcare of people with learning disabilities, particularly attendance at clinic appointments and investigations, was a contributory factor in a number of deaths”.
It points out that:
“GP referrals commonly did not mention learning disabilities, and hospital ‘flagging’ systems to identify people with learning disabilities who needed reasonable adjustments”—
which is a legal requirement—
“were limited”.
There are some very key questions to put to the Minister. First, will he respond to the noble Baroness, Lady Hollins, on why the Government have not published a one-year-on report detailing what progress has been made in implementing the recommendations of the confidential inquiry? Secondly, can he explain where responsibility lies for implementing those recommendations? Is it with his department or is it with NHS England? I ask that because we are all aware of concerns expressed by his right honourable friend Norman Lamb on the failure of the NHS and local government to implement the core recommendation following the Winterbourne View scandal so that all those with a learning disability in inappropriate institutional care are offered community support. It is quite an extraordinary thing when a Minister says that the health service and local government have completely failed to meet that target. What I do not understand is who is responsible. It seems to me that Ministers are evading their responsibilities.
The noble Baroness asked the Minister about the central recommendation that a national learning disability mortality review board should be established. We have all had briefing from the BMA that emphasises the importance of such a review. We are told in the debate that this is now to be set up in the first half of 2015. Can the Minister confirm that? Can he also confirm that, once established, it is to be a permanent mechanism?
Another point that the BMA raised was that:
“One of the barriers to providing joined-up care is the way in which services tend to be commissioned separately, to the extent that co-morbidities fail to be recognised in either process”.
It went on to say:
“The planning and commissioning of services for people with intellectual disabilities, mental health problems, and chronic physical conditions must take greater account of the diverse healthcare needs of these groups. To facilitate this, commissioners need to have the knowledge and skills to understand how best to provide services for people with mental health problems and with an intellectual disability”.
Can the Minister respond to that point? Will he also respond to the point raised by my noble friends Lord Patel of Bradford and Lady Andrews and the noble Lord, Lord Adebowale, about the worrying evidence of health and care workers’ ignorance about the Mental Capacity Act, as identified in the excellent Lords Select Committee report?
I would like to pick up a point raised by the right reverend Prelate the Bishop of Carlisle on hospital services. My former trust—Heart of England NHS Foundation Trust—has appointed a team of specialist nurses in learning disabilities to work with local GPs to map patients’ pathways, enhance communication between community and acute hospitals, develop resource packs and training programmes for staff working in the hospitals and make sure that treatment options are available to people with learning disabilities. A number of noble Lords said that too often people with a learning disability and a physical health issue are ignored by health professionals when it comes to treatment options. I worry that lawful consent to treatment is not given in those circumstances: I rather doubt that it is in many cases. Will the noble Earl encourage other trusts to follow the example of Heart of England NHS Foundation Trust?
The noble Baroness, Lady Hollins, referred to data linkage. That is a very important issue. If the Health and Social Care Information Centre is reluctant to make progress on that matter, I hope that the noble Earl will consider her suggestion that Ministers should take steps to issue a direction from the department to tell that centre to get on with it.
Finally, will the noble Earl confirm that parity of esteem applies to services for people with a learning disability? If he can confirm that, will he say how it is being put into action?
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe) (Con)
My Lords, I begin by expressing my gratitude to the noble Baroness, Lady Hollins, for her huge contribution in the fields of learning disability and mental health, her tireless efforts in championing the rights of individuals and families, and for the very real difference the breadth of her work has made to the life chances of so many people.
It is nearly a year since the noble Baroness convened a debate on action to address the health inequalities identified by the government-commissioned Confidential Inquiry into Premature Deaths of People with Learning Disabilities, and I welcome the opportunity to bring those issues to the fore again. Since the government response was published in July last year, we have published our call to action, setting the aspiration to make the UK among the best nation states in Europe at reducing premature and avoidable deaths.
In April, working with partners and stakeholders, we published Living Well for Longer: National Support for Local Action to Reduce Premature Avoidable Mortality, which recognised the need for a targeted approach for people with learning disability. This national partnership, and the focus and momentum it has engendered, creates a vital opportunity to make a difference in our collective fight to reduce avoidable mortality. At the same time, by creating both the evidence base and a system-wide work programme, the confidential inquiry and the Government’s response have provided a powerful tool to turn that opportunity into action.
We have the policy framework in place and have reflected health inequalities across the NHS, public health and adult social care outcomes frameworks. There are specific measures on preventing people with learning disabilities dying prematurely and greater focus on empowering people to have greater choice and control. The mandate to NHS England for 2014-15 allows us to hold the system to account and gives us the basis for measuring progress. Reducing differences in life expectancy and health expectancy are key measures across the system.
NHS England is committed to establishing a learning disability mortality review function by March 2015, as set out in its business plan, Putting Patients First. A project group is overseeing this development, with representation from Mencap, PHE and the Department of Health. I am delighted that the noble Baroness has also been invited to lend her expertise.
The Government’s response to the confidential inquiry included a commitment from NHS England to an assessment of costs and benefits by March 2014. NHS England, together with the inquiry team and other partners, undertook a robust assessment, and resources have been allocated through the priority-setting processes. This is now a commitment in its business plan and strategic objectives, and we all wish to see this work proceeded with rapidly. As regards funding, I am sure that NHS England, in establishing the review function and beyond, will be giving full consideration to funding issues through its business planning and resource allocation processes.
The noble Baroness, Lady Hollins, highlighted the issue of data linkage. Work is under way with NHS England, the Health and Social Care Information Centre and Public Health England to provide standardised mortality data for people with learning disabilities to underpin the NHS outcomes framework and the mortality review function. However, I hope she will appreciate that in taking that work forward, we must also take account of wider cross-system discussions about the collection and sharing of patient data, which will inevitably have implications for this work. Nevertheless we are working closely with partners and will certainly act to secure the prioritisation of this work through all appropriate mechanisms.
The noble Baronesses, Lady Hollins and Lady Andrews, both emphasised the importance of integrated care for those with learning disabilities and getting the whole system engaged. NHS England is looking at ways to establish care co-ordination and risk stratification for people with learning disabilities as normal practice. We will underline the importance of prioritising this with NHS England.
Following the passing of the Children and Families Act, new arrangements will be introduced from September 2014 for joint assessment, planning and commissioning of health, social care and education services for children and young people with special educational needs up to 25 years old. A single education, health and care plan will set out meaningful objectives which will make a difference to the life of the young person, including supporting their transition to adulthood and independent living. The right reverend Prelate stressed the importance of advocacy for people with learning disability. He is right. Several actions arising from the Winterbourne View programme are intended to improve the quality and availability of good advocacy, working with a range of key stakeholders.
As the noble Baroness, Lady Hollins, emphasised, as did the right reverend Prelate, we need a system for identifying those with learning disabilities. The GP register of people with a learning disability from this year onwards is an all-age register, so will include children and young people with a learning disability. GPs are incentivised to construct this register as part of the quality and outcomes framework.
I can tell the noble Lords, Lord Wigley and Lord Hunt, that the NHS standard contract for 2014-15 now includes a requirement for providers to undertake an annual audit of reasonable adjustments. There is already a system within all NHS foundation trusts to provide board-approved risk assessments to Monitor about six specific areas of good-quality care for people with learning disabilities. On the back of this already-established standard, Professor Sir Mike Richards has agreed that four additional questions will be trialled in the inspection of acute hospitals, concerning numbers of people with learning disabilities in hospital, reasonable adjustments, specialist learning disability nurses and care audits. In addition, Professor Steve Field is exploring the data that can be used for intelligent monitoring purposes, in preparation for inspection of primary care providers and how they meet the needs of people with learning disabilities in a primary care setting.
The CQC will, from the autumn, be inspecting services around its preparedness and plans for children and young people with learning disabilities transitioning into adult services. To answer a point raised by the noble Baronesses, Lady Andrews and Lady Warwick, that better transition planning also feeds into the new enhanced services for learning disability annual health checks, which are starting from the age of 14 from this year onwards. They include a requirement for health action plans, and I can tell both noble Baronesses that NHS England is looking at the variation in uptake and the quality of health checks, with the aim of improving both.
I return to the issue of patient identification. In the last year, Public Health England has been involved with the Health and Social Care Information Centre in the development of information standards to improve the identification of people with learning disabilities in healthcare records. Public Health England’s Learning Disabilities Observatory maintains a national register of examples of reasonable adjustments made by hospital and other health service providers to help ensure that people with learning disabilities can benefit as much from available care as other people.
On health checks, as my noble friend Lord Ribeiro mentioned, Public Health England has produced leaflets specifically designed with and for people with learning difficulties, which explain the invitation and screening process for cancer and cervical screening programmes. It also has guidance for professionals on access to screening, and on informed consent and best interests decision-making. NHS England is also looking very carefully at that. In recognition of the very poor uptake of flu immunisation by people with learning disability, this year’s annual flu immunisation letter asks GP practices to prioritise vaccine uptake in people with learning disabilities.
Education and training in this field is vital. My noble friend Lord Ribeiro stressed the importance of compassion and good clinical practice. The noble Baroness, Lady Andrews, referred rightly to a need for cultural change, as did the noble Lord, Lord Rix. Health Education England’s mandate includes an objective to improve the skills and capability of the workforce to respond to the needs of people with learning disabilities and behaviour that challenges. The Department of Health has commissioned a consortium, led by the Royal College of Paediatrics and Child Health, to develop Disability Matters, an e-learning portal for those who work with children, young people and adults with a disability. The Care Quality Commission is raising awareness among its inspectors.
On the issue of the Mental Capacity Act, raised by the noble Lord, Lord Patel of Bradford, the Government’s response to the House of Lords report on the Mental Capacity Act was published this week. It sets out a system-wide programme of action to address low levels of awareness of the Act among professionals. Health Education England is reviewing all education and training programmes to determine compliance with the principles of the Act. It will also look at including MCA compliance in the standard contract with education providers.
The noble Lord, Lord Rix, and the noble Baronesses, Lady Hollins and Lady Andrews, expressed disappointment that the department had not published a one-year-on report. We undertook to keep the Learning Disability Programme Board informed of progress. At a conference organised by the department on 28 March, the confidential inquiry team was able to share information and best practice on national, regional and local work to address the recommendations. That was followed by a meeting with members of the Learning Disability Programme Board in April.
We now need to step up the pace and make a concerted national effort to see more equitable access and outcomes for people with learning disabilities. A report setting out progress to date will be presented to the Learning Disability Programme Board in July, a year on from the Government’s response to the confidential inquiry. That will be published online.
The noble Baroness, Lady Hollins, asked whether we would embed the learning from the confidential inquiry into other policies. Most certainly yes: we have already committed to link the learning recommendations from the inquiry to other policies and programmes—for example, the Winterbourne View programme, the Mental Capacity Act and, indeed, end of life care.
The noble Baroness, Lady Warwick, expressed her concern over what she saw as the Government’s lack of action. I hope I have demonstrated that there has been extensive action, but of course there is more to do. I believe that collaboration nationally and locally on this challenging issue will give us the best chance of delivering equitable health outcomes across our nation. I would say to the noble Lords, Lord Adebowale and Lord Hunt, that the Government, as steward of the health and care system, are taking responsibility for delivering their commitments in response to the confidential inquiry’s recommendations. In doing so, we are ensuring that all key delivery partners across the health and care system play their rightful part as well.