Question for Short Debate
To ask Her Majesty’s Government what progress has been made in tackling the rate of premature deaths among people with a learning disability.
My Lords, this debate will be time limited to 90 minutes instead of 60 minutes. The speaking time for Back-Bench speakers will be eight minutes instead of four.
My Lords, this is our first opportunity since his death in August to celebrate the extraordinary contribution of Lord Rix. He was of course a household name in the 1950s and 1960s for what became known as the Whitehall farces, and was then involved in more than 90 television shows. In 1951, his daughter Shelley was born with Down’s syndrome, and Brian and his wife Elspet were shocked when they were told to “put her away in a home and start again”. Brian used his growing popularity to try to make things better for Shelley and for thousands of others and their families.
Brian Rix joined the House of Lords in 1992 as Baron Rix of Whitehall and Hornsea and spoke tirelessly in parliamentary debates, still fighting for the rights of people with a learning disability until December last year, at the age of 91. I will miss my noble friend’s advocacy and friendship, as will so many in this House. I thank the Royal Mencap Society and Professor Pauline Heslop, the programme lead for the learning disabilities mortality review, for providing me with up-to-date information in preparing for today. I also welcome the maiden speech of the noble Baroness, Lady Fall.
Since the 1990s, there have been a number of reports and case studies that have consistently highlighted that people with learning disabilities die younger than people without. My own research first highlighted this problem in articles published in the mid-1990s showing that adults with a learning disability were 58 times more likely to die before the age of 50, and were significantly more likely to die of respiratory disease than the rest of the population. Twenty years later, CIPOLD, the Confidential Inquiry into Premature Deaths of People with Learning Disabilities, found that this was still the most common immediate cause of death in 34% of cases. Recent data from the Clinical Practice Research Datalink showed that more than three times the number of people with learning disabilities in England die each year than would be expected from general population mortality rates, after allowing for their age and gender profile.
Why is this proving so difficult to change? The practice issues which emerge time and again in studies and inquiries on this issue include worrying findings of professional indifference and discriminatory attitudes, with healthcare professionals still relying inappropriately on their own estimates of a person’s quality of life—attitudes that inspired Brian and Elspet Rix in 1951 and Sally Philips in 2016. A frequent complaint is that health and social care professionals do not listen to those who know the person well when they voice concerns about the person’s health. Cases referred to the ombudsman repeatedly show that professionals do not understand how to apply the Mental Capacity Act. This was echoed by the post-legislative scrutiny committee on the Mental Capacity Act, of which I was a member, which reported in February 2014.
There is also insufficient attention paid to making reasonable adjustments to support the delivery of equal treatment, and a failure to provide the annual health checks that every adult with a learning disability should be offered. In 2013-14, only 44% of eligible people with a learning disability received an annual health check. There are also delays in diagnosis and treatment, and difficulties in accessing assessment and treatment of general health problems. There are also a number of system-level issues, such as a lack of learning from reviews of deaths and a failure to identify that a person has a learning disability in their healthcare record, meaning that the specific health needs of people with learning disabilities are invisible not only to health professionals but to researchers and public health practitioners.
What are the Government doing to improve our knowledge and understanding of the needs of this vulnerable group, for which comprehensive and accurate identification is an essential prerequisite? If we do not know which of our patients has a learning disability, how can we make the reasonable adjustments? I will come back to that. It is important that we keep monitoring these issues for evidence of improvement.
Following the CIPOLD report in 2015, the first three-year National Learning Disabilities Mortality Review programme, LeDeR, was set up at the University of Bristol. Its aim is to drive improvement in the quality of health and social care service delivery for people with learning disabilities, and to reduce premature mortality and health inequalities. It supports local agencies to conduct reviews of the deaths of people with learning disabilities between the ages of four and 74, and to learn from these reviews to improve services.
The programme supports reviews of all deaths, regardless of the cause or place of death—so not just deaths in hospitals but, for example, deaths at home. It is supported by family carers and people with learning disabilities, who all act as advisers. The case reviews are expected to identify and advise on action over the avoidable contributory factors leading to premature deaths in this population.
The establishment of LeDeR is hugely welcome, but a key question is how the NHS and the Government will use the data from the case reviews to implement a national strategy to tackle this continuing scandal. Will the Minister commit that the Government will regularly inform Parliament of progress in achieving improvements in outcomes for people with learning disabilities?
The programme has developed a website, training for reviewers, and illustrated guides and factsheets, and each NHS region is now introducing the review process by training local reviewers, piloting case reviews and offering learning and sharing events. But, unlike the child death review process and many other inquiries, the learning disability deaths programme is not mandatory. Agencies can choose to contribute to reviews of deaths of people with learning disabilities or not and, unlike the child death review, it is time limited, not permanent.
In my opinion, the most important change that is needed is a change in culture within all responsible services at all levels, and this includes making learning disability a sustained priority. But saying that it is a priority is not the same as acting to end the discrimination that we all know exists. Is it not time to mandate reviews into all deaths of people with learning disabilities on an ongoing basis, and for the CQC to scrutinise the implementation of local learning from such reviews at its inspections?
To have any chance of success, the programme requires multiagency sign-up and commitment from all agencies and services that provide support for people with learning disabilities, so that a comprehensive review of the circumstances leading to the death of an individual can be thought about fully. Can the Government give a clear message to local authorities and social care agencies that their staff must be released to contribute to reviews of deaths?
We already know a lot about contributory factors to premature deaths, but we need to move beyond just identifying what has gone wrong into making changes to practice. There is no point in reviewing deaths if subsequent changes to reduce premature deaths are inadequately resourced. What can people with learning disabilities and their families expect from the Government in terms of additional resources to prevent premature deaths, and when can they expect it?
There are some urgent actions that could be implemented immediately. I would like us to empower people with learning disabilities by ensuring that they have a better understanding of the health issues that affect them personally. I spoke about this in the excellent debate secured by the noble Lord, Lord Bird, on the role of libraries and independent bookshops; along with others, I mentioned the importance of reading for health understanding. The difference for people with learning disabilities is the need for accessible information, as set out in the information standard, but also for visual methods of communication to be used as part of enabling the person to demonstrate their understanding, wishes and capacity to consent, and making it easier for health professionals to be able to use the Mental Capacity Act.
Sometimes understanding can lead to better outcomes, just as it can in those people who are literate, through an improvement in quality of life and mood, as found in a recent study at the University of Hertfordshire using a wordless book about epilepsy that is currently in press. Having addressed their own need to understand, these self-advocates can deliver training as experts by experience. Good communication skills and positive non-discriminatory attitudes should be assessed in our universities and trusts because they are the core skills and attitudes needed by all staff—not just doctors and nurses but dentists, opticians and receptionists as well. These skills will be acquired only through direct contact with people with learning disabilities.
The learning disabilities core skills education and training framework, developed by Health Education England and Skills for Care, is hugely welcome, as is the work of the GMC, which has been developing tools for doctors. I have contributed to some of this work personally. Mencap has developed training within the core skills framework, which is co-delivered with people with a learning disability—and the courses are oversubscribed already.
I end my remarks by asking: how will the Government, the Department of Health and Health Education England make sure that training is an absolute priority for trusts and universities?
My Lords, what first led me to put my name down for this debate was the simple fact that when it comes to any minority group that is interacting with a public service, particularly the health service, if there is a communication problem you suddenly see problems in the results. If they cannot access the system, you suddenly find that they are not getting the best out of it.
The fact is that most forms of healthcare are based on a doctor talking to a patient. The noble Baroness stole some of the thunder from my speech by pointing this out, but all the groups that have problems with what we would regard as normal conversational communication suffer in terms of healthcare and when interacting with virtually all other structures of the state, and indeed goods and services. Extracting information from the patient to ensure appropriate treatment is bound to be more difficult. If you know you are going to interact with this group, you have to have some way of correcting that situation otherwise you are guaranteeing a level of failure. There are various bits of legislation coming through at the moment, and if everything was working correctly I am sure the noble Baroness would not have bothered tabling this debate. However, it is quite clear that it is not.
There are contributing factors—for instance, lifestyle. We know it is very difficult to get people with learning disabilities into activities like sport because there is no structure for them, and that leads to other health problems later on. However, if we are talking simply about the interface with a GP or a nurse or receptionist—the noble Baroness was right to mention those who are the gatekeepers to the service—unless there is training in this area, we are going to have problems.
If an employee does not have generalised training, they must at least have some awareness that means they know when they should back off and call in the experts. We need it to be acceptable to say, “I need help and support”, without it going against that employee. Think about it: if you are in a job where you are supposed to deal with a person in this situation, you should be able to think, “Do I have the authority and the right to ask for extra help to deal with the situation?”. In many situations, to do so fundamentally undermines your professional competence. Unless we allow that, we will not get the best outcomes, because people bluff to get through the situation—it is a natural reaction and we have all done it in our own worlds. You want to cover up the fact that you are having problems with something you are expected to be able to do. Unless you can call in expertise, and know that that is okay, you will have problems.
I could go on for a considerable time giving more examples, but at this time of night and with a maiden speech on its way which is probably much more interesting than mine, I will cut my remarks off here. Unless we embrace the idea of preparation to call in expertise and making it acceptable in the work environment so to do, we will continue to have these problems. What we are talking about here is only one manifestation of the problem. It is not just within the health service, it is within all services. It involves continuing conditions and stress, and mental health comes in later. Setting a good example from the Department of Health would be a simple step forward. It would be good to hear tonight an assurance that it is acceptable—indeed, required—to have that flexibility.
My Lords, before addressing the Question before us tonight, I join the noble Baroness, Lady Hollins, and say a few words about our dear colleague who would most certainly have been participating tonight were he still with us. The House is very much poorer for having lost a tireless campaigner, Lord Rix of Whitehall, who, as many will remember, last spoke here in December, during the passage of the then welfare reform Bill, despite his frailty at the time. Tonight it is indeed appropriate to remember the campaigning work of Brian Rix on these issues. His daughter Shelley, who, as we heard, had Down’s syndrome, inspired his life of activism, particularly for the Royal Mencap Society, in which I declare an interest as its vice-president.
As we all know, Brian was a much-loved actor. He used that popularity to raise millions of pounds for the Royal Mencap Society, becoming its general-secretary in 1980 and later its chairman and president. After becoming a member of this House in 1992, he focused attention on the rights of people with learning disabilities and their families, drawing on his experience and that of tens of thousands of people whom he met and helped. He was particularly concerned by the matters covered by this Question for Short Debate.
Lord Rix spoke in parliamentary debates on more than 300 occasions, and his focus was always on giving a voice to those too often ignored. He leaves three much loved children, Louisa, Jamie and Jonathan—his wife Elspet passed away in 2013. Noble Lords may wish to note that there will be a tribute event in the new year celebrating his life and achievements.
I now turn to the important issues raised by the noble Baroness, Lady Hollins, in her excellent opening speech—issues on which I know that Brian would have wanted to speak. The noble Baroness has been a trailblazer over many years on these matters. It is clear that there is still much progress to be made, and I look forward to the Minister providing us with an update on progress made in tackling the premature death of people with a learning disability.
I speak to highlight the importance of training for healthcare professionals to improve outcomes for people with a learning disability. This is also of critical importance to us in Wales, and I have served on investigatory panels on the issue in both Wales and England. Overcoming the national scandal of premature death among people with a learning disability requires a significant improvement in both the quantity and quality of training among doctors, nurses and other healthcare professionals. Workforce development, minimum standards for healthcare support and guidance for commissioners are lacking, and the Government must address that.
I am pleased that some progress is being made. In July, Health Education England, Skills for Health and Skills for Care launched a learning disabilities core skills education and training framework—that is quite a mouthful. The framework provides the knowledge and skills needed for those delivering training to health and care professionals. Mencap has adopted the framework to develop training currently being co-delivered by people with a learning disability, which is being piloted with the NHS. This is welcome and underscores both the capability of people with a learning disability and the vital importance of including them in the delivery of services. This training focuses on identifying learning disability, developing communication skills and highlighting the importance of reasonable adjustments, such as longer appointment times and accessible information.
I congratulate the noble Baroness, Lady Hollins, on her work chairing a group supported by the General Medical Council, the Nursing Midwifery Council and Health Education England, which is looking at how good practice can be promoted so that all medical students and current staff receive the training they need better to equip them to support people with a learning disability.
I call on the Minister in her response to commit to ensuring that this framework is widely adopted and best practice spread. Without all health professionals receiving appropriate training, people with a learning disability will continue to be let down and premature deaths will continue to occur. This is a very serious matter and requires a serious response.
My Lords, growing up in Moscow during the Cold War, this Parliament was a beacon of hope, freedom and democracy in a world struggling against totalitarianism and war. I could never have imagined that I would be part of it one day. It is an honour to address your Lordships for the first time, and I congratulate the noble Baroness, Lady Hollins, on bringing this very important matter to your Lordships’ attention this evening.
Although introduced to your Lordships’ Chamber last year, I was not permitted to speak until now and, while I see the attraction of a fully voting but silent Peer from the Whips’ point of view, I stand before you today with those days firmly behind me. I am deeply indebted to both my sponsors, my noble friends Lady Rawlings and Lord Feldman of Elstree, for their support, wisdom and friendship over many years. I want to pay tribute to my wonderful mentor, my noble friend Lord Sherbourne, and to the officials of this House, as well as to your Lordships on all sides of the Chamber, for the kindness and patience you have shown me over these past months.
My first political memory was of the Falklands War when I was 10 years old. My father was working for the then Foreign Secretary, my noble friend Lord Carrington, a much-loved and respected member of this House. His resignation taught me my first lesson in politics—that political lives, even of the best of us, are precarious things. The resignation of another good man brings me to this Chamber today. I am immensely proud to have served David Cameron for six years when he was Prime Minister and five years as leader of the Opposition, and I pay tribute to all that he achieved for our country: in mending our broken economy; in creating many new good schools; in meeting our commitment of 2% to our NATO allies while not turning our back on the world’s poor; and, most of all, in helping so many back to work in this country on a fair wage.
Being part of the legislature is certainly a whole new thing for me. Now that I am able to see at first hand how your Lordships shape and improve legislation, as well as inform our country’s debate, I am still more honoured, and I very much look forward to playing my part in the future work of this House.
I am a daughter of an American mother and a British diplomat. I admit to being a hereditary Atlanticist, and I dedicated some of my early career to the transatlantic relationship, working as the founding director of the bipartisan think tank, Atlantic Partnership. My father’s generation were the “Cold War warriors”, many of whom sit on all sides of this House today. So my upbringing taught me something else: that we must fight for the values that we hold dear, that they can never be taken for granted, and that it falls to each and every generation to safeguard what is precious to us—otherwise, we will have failed in our duty. For there is nothing that reflects more truly on the values of a society than how we treat our most vulnerable, which is why I am pleased to speak briefly in this debate today.
There are some among us who dedicate their lives to the care of those with learning disabilities, such as my wonderful sister, and so many other mums, dads, siblings and carers, as well as teachers in specialist schools, such as Fairley House, where I was a governor for years. We owe them our respect and gratitude. We take great pride as a nation in our National Health Service, that it is available to all and free for all, and we hope that everyone is treated with kindness and humanity—and treated as equals. Yet the tragedy of the original Mencap study that prompted this debate today is that there is not always equality of care, at least not for the six men and women with learning disabilities whose deaths were judged premature in the original report.
At the crux of the problem, there seems to lie a simple truth. Those with learning disabilities often struggle with the system when they most need it, often because they are afraid or confused, cannot explain what is wrong and have many medical problems in the first place. So there are issues with the diagnosis, then with the treatment—and sometimes, let us face it, the assumptions made about what sort of care they should or should not receive. These problems, taken together, put those with learning disabilities at a serious disadvantage. Sir Jonathan Michael, the chair of the independent inquiry, put it very well when he said:
“I have learned that ‘equal’ does not mean ‘the same’ and that ‘reasonable adjustments’ that are needed to make services equally accessible to people with learning disabilities are not particularly difficult to make”.
Those are simple adjustments to save lives.
I commend the work of all those who seek progress in this area, and ask that we do not take our eye off the ball. We owe it to the vulnerable among us, to their families and friends, and to our society as a whole, to be the best we can.
My Lords, the honour and great pleasure of following my noble friend Lady Fall falls to me, on these Benches, to welcome her warmly in the name of the whole House and congratulate her on her remarkable maiden speech. It was outstanding, by any standards—from Moscow to the Lords. This does not come as a surprise to anyone who knows the noble Baroness, as her curriculum vitae hardly begins to do her justice. Early on in her career, after having excelled at Oxford, she steered me through many difficult negotiations after the fall of the Berlin Wall, the accession of Austria, Finland and Sweden into the European Union, extending the Fulbright/Monnet scholarships programme and much more. However, it is not just her dedication which distinguishes her, but also her other special qualities of loyalty, humility, astuteness, style, intelligence and genuine care for others. These qualities were revealed between the lines in her excellent and interesting maiden speech. We all hope that she will play a prominent part now in your Lordships’ House and that we shall hear a great deal more from her in the future on this and many other subjects.
Before making my modest contribution, I too would like to thank the noble Baroness, Lady Hollins, for introducing this debate. I started my career working for the London County Council in Stepney, Bow and Poplar, for the children’s care committee, then trained as a nurse with the Red Cross—hence my interest in this debate.
As we have heard, people with learning disabilities experience significantly worse results than the rest of the population. Bristol University’s confidential inquiry, which the noble Baroness, Lady Hollins, mentioned earlier, into the deaths of 247 people with learning disabilities from 2010 to 2012, discovered that men with learning disabilities died, on average, 13 years sooner than men in the general population, and women with learning disabilities died 20 years sooner. These studies show the urgent need to improve practice within the National Health Service. I therefore welcome all efforts that the NHS is making to tackle premature mortality among people with a learning disability.
I will mention two initiatives from which I hope we can learn lessons about how to improve on these results. The clinical commissioning group improvement and assessment framework was launched in March. It includes two indicators on learning disability: reliance on specialist in-patient care and the proportion of people on GP learning disability registers receiving an annual health check. I hope this will enable us to see clearer how clinical commissioning groups are performing. In March 2015, NHS England commissioned the Learning Disabilities Mortality Review programme. This programme aims to support local and regional areas, conduct reviews of deaths of people with learning disabilities and implement the recommendations and plans of action.
I hope the Minister will be able to address these few points and so contribute to alleviating the unhappiness and stress that this causes families.
My Lords, I congratulate the noble Baroness, Lady Hollins, on securing this debate and on being such a tireless champion for the rights of people with learning disabilities to receive the same access to and quality of healthcare that the rest of the population takes for granted. I also congratulate the noble Baroness, Lady Fall, on her excellent maiden speech. I am sure we will be hearing much more from her. I associate myself with the fulsome tributes paid, rightly and movingly, to our late colleague Lord Rix.
As we have already heard from the noble Baroness, Lady Hollins, the 2013 Confidential Inquiry into Premature Deaths of People with Learning Disabilities was set up to investigate the avoidable or premature deaths of people with learning disabilities through a series of retrospective reviews. I hope noble Lords will forgive me for repeating several statistics. I know that those in the Chamber tonight will be familiar with them, because they are passionately concerned with this issue, but the statistics bear repetition because, in a way, they say it all. We have already heard, from the noble Baroness, Lady Rawlings, the shocking statistics that men with learning disabilities die, on average, 13 years sooner than men in the general public and women with learning disabilities die 20 years sooner. Overall, 22% of those people were under 50 when they died. These are not just dry statistics, they are deeply shocking and nothing short of a national disgrace. Perhaps the most shocking statistic of all is the confidential inquiry’s finding that 37% of deaths were potentially avoidable if good quality healthcare had been provided.
As so often happens when you start to delve into statistics, the situation across the country is very variable. An independent review of deaths of people with a learning disability or mental health problem in contact with Southern Health NHS Foundation Trust between 2011 and 2015, commissioned by NHS England, found a number of serious failings. These included the trust having no effective way of reporting, investigating and learning from deaths. It also found that, while 30% of deaths in adult mental health services were investigated, only 1% of those of people with learning disabilities were investigated. What are we to make of the statement made by the former chief executive of Southern Health? She said:
“We believe that Southern Health’s rate of investigations into deaths is in line with that of similar NHS organisations”.
I leave noble Lords to draw their own conclusions from that.
As we have already heard from the confidential inquiry, one of the 18 key recommendations was the establishment of a national learning disability mortality review. A key part of the review programme, commissioned again by NHS England, is to support local areas to review the deaths of people with learning disabilities and take forward the lessons learned to improve services. I am sure we all think that is what should happen. So far, so good. However, as has already been referred to by the noble Baroness, Lady Hollins, participation in the programme is not mandatory, so, unlike the child death review process, and, indeed, many other inquiries, agencies can choose whether or not to contribute to the review of deaths of people with learning disabilities. In the current financial climate, I guess it is understandable that many organisations choose to do only what they have to. In my view, giving this issue mandatory status would undoubtedly raise the profile of the work and show that the lives and deaths of people with learning disabilities are valued. That is the crux of what we are talking about tonight.
I know there are also serious concerns over the sustainability of local reviews of deaths of people with learning disabilities once the review programme ends. Therefore, in responding, will the Minister update the House on the review’s overall progress? Does she agree that if we really want to stop people with learning disabilities dying prematurely because they are not getting good-quality healthcare, the mortality review should have a mandatory rather than an optional status?
Finally, on a related issue of sustainability, the Public Health England Learning Disabilities Observatory, set up in the wake of the independent inquiry chaired by Sir Jonathan Michael, was established to keep watch over the health of people with learning disabilities and the healthcare they receive. It also provides data, information and advice to commissioners, families and people with learning disabilities about good practice and local performance in achieving improvement. Current funding for the observatory is guaranteed only until March 2017. Therefore, what assurances can the Minister give that funding will continue to be available for the vital work that the observatory is carrying out?
My Lords, I add my thanks to the noble Baroness, Lady Hollins, for introducing this debate on inequalities faced by individuals with learning disabilities and the need to ensure that we continually have one aim—to make sure that disability should not be a barrier to health. An able-bodied person such as myself should ensure that we highlight at every opportunity the necessity for everyone to be able to access the same health benefits.
I congratulate my noble friend Lady Fall on her thoughtful and eloquent maiden speech. I also declare my interests as set out in the register of interests—leader of North Lincolnshire Council and chair of its health and well-being board, vice-chair of the Specialised Healthcare Alliance and a member of the NHS Sustainability Committee.
The noble Baroness, Lady Hollins, spoke about the experience of people with learning disabilities. Sadly, we have read that, overall, 22% of people with a learning disability were under 50 when they died. Therefore, I welcome NHS England’s goal to “close the health gap” of health inequalities as a whole by 2020. A “must” is that we continue to maintain a skilled workforce and welcome back experienced social workers. Training and education are so very important to give staff the competence and confidence to manage complex and challenging behaviour with good partnership working and to reduce admissions to hospitals as they support individuals—not forgetting their families—on the journey from childhood to adulthood and into older age.
I am pleased that the Government have said that they want to build on the achievements and skills of the current public health workforce. So far, we can maintain a well-trained and, as I said, motivated workforce to the highest standard of professional conduct in their work. The saying is, “Make it happen”—stop bad practice and strive for excellent practice. Unfortunately, there are gaps where too many people with learning disabilities can be found in inappropriate patient settings and stay longer than necessary. The Winterbourne View hospital abuse, which we do not wish to read about or witness again, is still in our minds. Possibly we have relied too much on in-patient care. As good and necessary as some in-patient care can be, disabled people, like able-bodied people, want and desire the same thing: they want homes, not hospitals.
The Government’s aim must be for everyone with a learning disability to have an annual health check with a personal plan, but there is still a long way to go. However, I am pleased that now more people are in receipt of a direct payment or personal budget to enable them to have greater choice and control over how they live their lives and to be more creative as individuals: a light touch for support, but equal outcomes. By helping individuals to have access to activities and employment, I am pleased to say that in north Lincolnshire we have seen a 5.3% increase of people with a complex learning disability in paid employment as well as opportunities to engage with a larger circle of friends. We have also seen our new purpose-built housing scheme, partnering with our local housing association and private sector, supporting people who in many cases have lived far from their families to move from a residential setting and live a transformed independent life in a home of their own.
I wish to highlight Mary’s story, Mary has a learning disability, lives with her elderly parents and has a voluntary work placement one afternoon a week. She was unhappy and felt isolated from her community, and wanted to make friends and build her confidence. The service listened to what Mary said she wanted to do and supported her goals. Mary had never applied for any benefits, and with supported help worked to apply for them. She attended a healthy cook and eat session at one of our local health and well-being hubs and attended a music group within her area. Mary is now going to local activities independently and, more importantly, is making friends.
I am pleased that my council, with other local authorities, has joined the Changing Places national campaign to improve access to public toilet facilities for people of all ages with a profound disability, as access to toilet facilities for disabled people is a key barrier to their participation in community life.
We are building the right support to make sure that young people and adults with learning disabilities and autism have the same opportunities as everyone else to live satisfying and valued lives and are treated with dignity and respect. All of us, as well as the Government, have acknowledged that we have more to do to raise the bar. I therefore welcome the Government’s increased support to achieve those better outcomes and look forward to further updates from my noble friend Lady Chisholm.
I thank the noble Baroness, Lady Hollins, for introducing the debate and I pay tribute to the inspirational late Lord Rix. I will share some observations on the healthcare experience of the people we support at Turning Point. I declare my interest as chief executive of that learning disabilities service provider, which for over 25 years has supported over 450 people with learning disabilities across England. Our experience is that the healthcare and well-being experience of the people we support varies greatly around the country. The following are anecdotal but representative examples from our services, which show that while some progress has been made, more still needs to be done—a kind of reality check, I guess.
The people we support with a learning disability rarely see a learning disability nurse during a hospital visit. We find that we still have to question “do not attempt resuscitation” orders for some people we support. The people we support find that community healthcare provision varies greatly across the country and that there are gaps in specialist support for more complex and behavioural needs. The people we support struggle to gain reasonable adjustments, such as fixed-time GP or clinical appointments, which are particularly important for anxious people with autism or behavioural challenges. With regard to integrated health and social care, the people we support find their well-being needs filtered by assessors using expressions such as “health wants” and “health needs” in their assessments and reviews. At the end of their life, the people we support experience delays in being assessed for additional support as their palliative needs change.
We were very pleased to join Warwickshire County Council in launching a well-being service for people with learning disabilities that will give information and advice around health and well-being and help to improve access to health and well-being services. But, to our knowledge, a provision like this is fairly unique.
We are also noticing the impact of funding cuts for social care. These have been compounded by increased costs of delivery due to the national living wage, although we support that. Commissioners continue to be forced to retrench budgets almost annually and, as a result, face difficult decisions about services for those whom we are here to support. While the funding debate continues, people requiring support continue to be those who bear the brunt. In modern-day Britain, the increasing reality for many people with a disability is that they will be provided for to be deemed safe, fed and hydrated—that is deemed enough in many areas.
People with learning disabilities must receive the same standards of care as everyone else, and they must also receive the same level of determination from the Government to lead the improvements that are needed. The recent experiences of the people we support show that change needs to happen faster to improve healthcare for people with learning disabilities everywhere. More funding for social care is needed to ensure that disability services are able to offer more than the bare minimum. I thank the House for allowing me to speak in the gap.
My Lords, like the noble Baroness, Lady Hollins, all of us on these Benches very much miss the late Lord Rix. We miss his expertise on subjects such as the one we are talking about tonight; we miss the inspiration that he gave all of us because of that work; and we miss his wonderful sense of humour. Therefore, I thank the noble Baroness, Lady Hollins, for what she said about him. Of course, we all agree with her.
I also wish to thank the noble Baroness for initiating this debate. She has been consistent in her scrutiny of this issue, having raised the matter every year since the Confidential Inquiry into Premature Deaths of People with Learning Disabilities reported in 2013. That this is necessary demonstrates the enormity of the challenge of ensuring that people with a learning disability have equal access to healthcare that caters to their particular needs and ensures that the reasonable adjustments that should be made for them are made.
I congratulate the noble Baroness, Lady Fall, on her excellent maiden speech and particularly on her use of the word “equality”. As she rightly said, “equal” does not mean the same. Equality of opportunity to enjoy good health and good treatment is what we should aim for. Progress has been too slow, and steady headway is now required from the Minister and her Government.
I would like to raise, in particular, the need to reverse the trend of falling numbers of learning disability nurses. The Royal College of Nursing’s Connect for Change report claims that the total number of learning disability nurses in the NHS has fallen by nearly a third since 2010—a reduction of 1,726. An equally worrying trend is that more senior nurses have been lost in this discipline than any other, with a 40% reduction. We need nurses in all disciplines to be seasoned and expert, particularly in this discipline. The current Government have presided over a reduction in both expertise and quantity. Can the Minister say how her department is planning to correct that?
Learning disability nurses provide much-needed advocacy and support and are a key tie-in to social care. They speak out in the interests of people with a learning disability, provide assistance to carers and family members, and give much-needed advice and support to doctors. The case studies in the report, which I found extremely moving, show clearly what happens when this help is not available.
It cannot be right that with 1.4 million people with a learning disability, more of whom are now diagnosed earlier in life, live longer and possess complex needs, support available only five or six years ago is now no longer available. This fall in the number of professionals also means that people with a learning disability face a lottery as to hospital coverage.
In 2014, the Royal Mencap Society found that few hospitals have full-time cover and some none at all. This sometimes means that people with learning disabilities are unable to make their pain known to those who are treating them. They may not have a traffic light card or a hospital passport-type document, which have proved so useful to many—there are several examples of that in the CIPOLD report—they often become confused in a strange environment and among people who are not known to them; their care home may not be able to send somebody with them because of pressures faced. That is why we need the specialist nurses.
Although learning disability nurses are important, so too, as several noble Lords have mentioned, is the training of other health and care staff. We cannot and should not leave everything up to learning disability nurses, not least because of their dwindling numbers. All doctors, nurses and other care professionals need an understanding of learning disability and conditions such as autism and mental health problems, which might also be a barrier to communication. Understanding how to communicate in both directions is vital to ensuring that patients understand procedures, diagnosis and, importantly, what to do following operations and consultations about their own care and medicines. I am heartened to hear about the good work going on at St George’s, and look forward to hearing how the Government and NHS England will spread and promote that good practice.
People with a learning disability need more support and a proactive policy to ensure that they lead healthy lives. Annual health checks can uncover underlying conditions, yet, as we have heard, less than half of people with a learning disability receive them. Accessible information can empower people with a learning disability to take control of their health; we need that, sometimes with pictures, to help the understanding. The NHS accessible information standard launched this summer could not be timelier, and I wish it well.
Urgent action is needed to ensure that no more people with a learning disability die due to avoidable circumstances. The noble Baroness, Lady Hollins, has been a champion in standing up for people with a learning disability and for access to healthcare. I hope to hear much better news the next time that she raises this issue.
My Lords, I warmly welcome this debate and thank the noble Baroness, Lady Hollins, for her excellent introduction. I also very much congratulate the noble Baroness, Lady Fall, on her maiden speech. I hope that she will make up for her earlier enforced silence by speaking more often in your Lordships’ House. Perhaps she will also look a little more kindly on noble Lords in her current position than she did in her previous post.
What can one say about the late Lord Rix? What an extraordinary man and humanitarian he was. Above all, his passionate advocacy on behalf of people with learning disabilities is surely a beacon to us all. I hope that tonight constitutes a small tribute to him for all that he did for so many.
The noble Baroness, Lady Hollins, was very telling when she talked about too many people in health and social care not listening to people with learning disabilities or those who know about people with learning disabilities. When one looks at the issues that have been raised—the statistics mentioned by the noble Baroness, Lady Rawlings, or the issue of the Southern Health NHS Foundation Trust, mentioned by the noble Baroness, Lady Tyler—what is most striking is the failure of so many health and social care bodies to treat people with learning disabilities with a sense of equality and respect.
The Mazars report is shocking in relation to the Southern Health Foundation Trust. It identified the lack of leadership, focus and sufficient time in the trust spent on carefully reporting and investigating unexpected deaths. That was followed up by the Care Quality Commission, which found that the trust failed to mitigate the significant risks posed by some of the physical environments in which it delivered mental health and learning disability services. It did not operate effective governance arrangements to ensure robust investigation of incidents, including deaths.
Following those two reports, we had the saga of the former chief executive being offered an opportunity to stay on the staff, on the same salary. She has now left. I cannot help wondering whether underlying this was a board that did not accept those reports. I do not know whether the Minister is able to say a little more about that, but it seemed to me that it encapsulated the problem that the noble Baroness, Lady Hollins, suggested. Although I am sure that many parts of health and social care do their very best by people with learning disabilities, the cold statistics would suggest that we have an awful long way to go before we can be satisfied that attitudes, policies and procedures are right for these vulnerable people.
In the time available, I do not want to say very much more, but I want to ask the Minister three questions. The first relates to the 18 key recommendations from the CIPOLD review of deaths. Of course she cannot go through all 18 recommendations tonight, but can the Minister write to noble Lords who have spoken in this debate to set out how the Government consider that the health and social care system—and the Government —are responding to those 18 recommendations? In particular, will she pick up the point raised by the noble Baroness, Lady Tyler, about whether the local action that NHS England has instituted, which is not mandatory, can be seen to be a response to the recommendation of a national learning disability mortality review body? I do not think that it can be unless there is a proper mandating of the NHS to take part in it.
The second question comes back to the point made by the noble Baroness, Lady Hollins, about a national strategy. Do we have a national strategy? If not, will the Minister say how the Government intend that there should be a proper national strategy, nationally led, that will ensure that the kind of changes that need to happen will take place?
Finally, I do not think that funding is the only problem: attitudes are much more important. But no one can deny the funding challenges in health and social care at the moment—nor that, despite the Government’s intention that more money should be spent on mental health, it is quite clear that clinical commissioning groups will not do that because they are under intense pressure to balance the books. It has become clear that balancing the books is trumping any other policy. So my final question for the Minister is, essentially, what will happen to protect the funding of those services, which impact directly on people with learning disabilities?
My Lords, I congratulate the noble Baroness, Lady Hollins, on securing this debate on an issue of great importance that is rightly of concern to your Lordships and indeed to the Government. I begin by paying tribute to the noble Baroness for her unfailing commitment to highlighting the inequalities, experiences and poor outcomes that people with learning disabilities and their families have faced for many years. I echo her and other noble Lords’ tributes to Lord Rix, who we are certainly going to miss enormously.
I also take this opportunity to congratulate my noble friend Lady Fall on an excellent maiden speech. My noble friend will be a great addition to this House and I greatly look forward to her contributions in the future. Also, let me thank all noble Lords for their contributions this evening.
We know that there are people young and old who die from what are often referred to as avoidable and premature deaths—which, I think we would all agree, need not happen if care, safety and the way in which people are treated were consistently good across the whole of the healthcare system. The Government are clear that the lives of people of all ages with learning disabilities matter. We are working with partner organisations, professionals and people with learning disabilities and their families to respond to issues that are important to, and have a big impact on, people’s lives.
As my noble friend Lady Rawlings mentioned in her speech, we know that people with learning disabilities experience significantly worse outcomes than the rest of the population. Our activity therefore extends beyond health and care and must also encompass the education of healthcare professionals, employment and housing. To this end, NHS England has a wide-ranging programme of work on learning disability designed to transform care and improve outcomes, driving up the quality of clinical and nursing care and reducing health inequalities. The NHS Five Year Forward View highlighted the need to improve learning disability services, with the NHS driving improvements in culture and behaviours towards people with learning disabilities.
The NHS published shared planning guidance in September with the aim of improving learning disability services, including reducing premature mortality, one of only nine “must dos” in the guidance. As my noble friend Lady Rawlings also mentioned in her speech, the clinical commissioning group improvement and assessment framework was launched in March. This Ofsted-style assessment will allow us to see how clinical commissioning groups are performing in key areas. It includes two indicators on learning disability: reliance on specialist in-patient care and the proportion of people on GP learning disability registers receiving an annual health check.
The noble Lord, Lord Hunt, and the noble Baroness, Lady Tyler, both spoke about NHS foundation trusts, and my goodness there are lessons to be learned. The Government have asked whether the issues raised in the Mazars report might be found in other providers across the country. The Care Quality Commission’s review into the investigation of deaths includes a sample of all types of NHS trusts in different parts of the country and will assess whether opportunities for the prevention of death have been missed—for example, by late diagnosis or physical healthcare problems. We expect the Care Quality Commission to publish its findings in December.
The noble Baronesses, Lady Hollins and Lady Tyler, asked what the Government were doing to provide full information on an ongoing basis on trends in the age of and causes of death of those with learning disabilities, and how those trends can be monitored. In answer, I can say that the Department of Health is working with Public Health England and NHS Digital to address the lack of reliable data, which are so important to ensuring that the right decisions can be made by healthcare professionals. A number of approaches are being considered, but the lack of progress has been frustrating. Noble Lords will be aware, however, of the wider issues surrounding the safe and secure use of health and care information, and here I cite the work undertaken by the National Data Guardian for Health and Care, Dame Fiona Caldicott, to ensure that the public can make informed choices about how their data are used. The Department of Health ran a public consultation on those proposals and is currently analysing the responses received. In addition, the department sponsored a study in this area undertaken by Public Health England, and the findings were published by the Journal of Intellectual Disability Research in July. They indicate the extent of premature mortality and its major causes.
As noble Lords have mentioned, people with learning disabilities have a life expectancy on average approximately 20 years less than other people. Public Health England also publishes a digest of the most up-to-date mortality statistics in People with Learning Disabilities in England. The 2016 edition of this will appear later this year.
The noble Baronesses, Lady Hollins and Lady Rawlings, asked whether it was time to mandate reviews into the deaths of all people with learning disabilities. Several other noble Lords mentioned this, too. In March 2015, NHS England commissioned the learning disability mortality review programme, which aims to support local and regional areas conduct reviews of deaths of people with learning disabilities and implement any recommendations and plans of action. Every NHS region is testing the review process and by March 2019 we expect every area to have established a mortality review process.
On the important matter of drugs, excessive use of psychotropic medication is known to be a specific factor in the premature death of people with a learning disability. Several royal colleges have signed a pledge to stop overmedication and have developed plans to deliver on the pledge, including issuing guidance for pre-registration nurses and psychiatrists; producing accessible information on medication for people and their families; and publishing guidance for prescribers. NHS England will also look regularly at primary-care prescribing of psychotropic drugs to monitor progress nationally.
As I mentioned earlier, the NHS mandate includes a requirement to reduce health inequalities for people with a learning disability. The noble Baronesses, Lady Redfern and Lady Hollins, mentioned annual health checks, as did the noble Baroness, Lady Walmsley. A key objective of this work is to increase the number of people on primary care registers and to ensure that as many of those people as possible get an annual health check. The ambition is for 75% of people on GP registers to receive an annual health check by 2020. Specific work under way includes: standardised letters to improve advice and guidance on health checks; pre-health check questionnaires; health check templates linked to people’s care records; and health action planning, including a focus on key issues that need to be followed up.
NHS England is working to improve how people with a learning disability access health services. This includes: developing care pathways for health conditions affecting people with a learning disability such as diabetes, epilepsy, heart disease and dysphagia; improving patient experience and outcomes; and sharing good practice to reduce variation in quality and make reasonable adjustments to services.
Education is hugely important and was mentioned by virtually every noble Lord. We have recognised that there needs to be a significant improvement in education of healthcare professionals. Health Education England, together with Skills for Health and Skills for Care, launched in July 2016 the learning disabilities core skills education and training framework, which was mentioned by several noble Lords. The framework provides the knowledge and skills needed for those delivering training to health and care professionals.
The noble Lord, Lord Addington, and the noble Baroness, Lady Hollins, mentioned the difficulties in communicating. Some universities such as St George’s, with the help of the noble Baroness, Lady Hollins, lead the way. Here, students receive training from training advisers who themselves have learning disabilities.
We are also taking steps to help people understand and access the right care and support, including by trialling the idea of “named social workers”, and, as part of the transforming care programme, establishing the role of “care and support navigators”. These will also support the aims of integrated and personalised care.
The provision of accessible information and people’s ability to communicate with staff have a key impact on their care, experiences and outcomes. In July 2015, NHS England published the accessible information standard for the NHS and social care services to help organisations identify and meet an individual’s communication and support needs.
As the noble Lord, Lord Addington, and the noble Baroness, Lady Fall, mentioned—the noble Baroness, Lady Hollins, mentioned it in the debate last Thursday on libraries and again tonight—the provision of books beyond words for those who have visual learning but difficulty with words can make a real difference. It is important that every possible healthcare professional has this at their side whenever they are dealing with people with learning disabilities.
I want to make sure that I cover all the questions, because, as always, I am running out of time.
The noble Baroness, Lady Hollins, asked what the Government are doing to improve our knowledge and understanding of the needs of this vulnerable group. GPs, under the quality and outcomes framework, have to maintain a register of their patients who have learning disabilities. The new Care Quality Commission arrangements for inspections for acute hospitals explicitly examine how patients with particular needs, such as learning disabilities or dementia, are identified. As the noble Baroness, Lady Hollins, also mentioned, the Government will regularly inform Parliament of the progress that has been made. I think the noble Baroness, Lady Tyler, also mentioned this. Public Health England’s Learning Disabilities Observatory team review each year and are covered in local and health authority joint strategic needs assessments. This team will continue, funding will continue for this team and the Secretary of State for Health reports annually to Parliament his assessment of NHS England’s progress.
The noble Baronesses, Lady Tyler and Lady Hollins, also wanted to know whether the Government can give a clear message to local authorities and special care agencies about their expectations that staff will be released to contribute to lead reviews of deaths. We agree that there should be the local capacity to undertake high-quality reviews which will yield the best possible learning. However, we have no plans to legislate to make such participation a statutory duty. There is already a strong expectation in the CQC guidelines that providers will participate in relevant clinical audits. Additionally, there is participation in the NHS England-commissioned audit and outcome review programme, which the Learning Disabilities Mortality Review programme is carrying on.
I will have to write to the noble Lord, Lord Hunt, on the 18 recommendations, if that is all right, and on the funding attitudes.
There is work in progress which will, in time, have a positive impact on the safety and quality of care.
I am sorry to interrupt, but when she is writing her letters will the Minister please also reply to my questions about learning disability nurses?
Yes. I am so sorry—I had the answer and I will make sure that I get it to you.
We give thanks to the noble Baroness, Lady Hollins, and people like her who keep pushing the barriers facing this vulnerable group. The Government are focused on making changes happen, stopping variation in care and championing those with learning disabilities being able to live full and happy lives, knowing that support is there when needed. Once again, I thank all noble Lords for taking part tonight. I am sorry that I have not had time to answer all the questions, but I will make sure that the letters get to noble Lords.
House adjourned at 9.08 pm.