Question for Short Debate
My Lords, I declare a non-financial interest as founder and chair of the charity Books Beyond Words. The charity co-produces educational and therapeutic resources to empower people with learning disability and autism and to educate those who support them.
Paula McGowan, mother of Oliver McGowan, wrote to me ahead of this debate to encourage Parliament to add some urgency to the work that is currently being done. She said: “My teenage son Oliver died a horrific and preventable death due to ignorance. Ignorance from healthcare staff, who should have had the skills and expertise to understand his neurodiverse needs, but they didn’t. Oliver had autism and a mild learning disability as a result of meningitis as a baby. However, his additional needs did not hold him back and he had a good life; one that he enjoyed tremendously.” Paula went on to say that when his parents took Oliver, who was having seizures, to hospital, he was very frightened. Paula assumed that clinicians would understand autism and learning disability; understand about sensory overload, crisis, and meltdowns. She thought they would understand how to make reasonable adjustments. She thought they would know about the Autism Act. She said: “Worse still, I thought they knew more than me. But they didn’t. The reason for this was because they had received little to no training in autism and learning disability awareness. Most harboured subconscious bias and beliefs around Oliver’s additional needs and simply labelled his cries for help as a mental health condition.”
This ignorance led to Oliver being chemically restrained, and dying at just 18 years of age. The good news is that Her Majesty’s Government have committed to introducing the Oliver McGowan training in autism and learning disability awareness and this will be crucial to saving lives. In my experience, unless this is mandatory and co-delivered by experts by experience, it will not have the desired effect. I hope the Minister will agree. It is right and fair that all NHS and social care staff have the skills to treat and support patients like Oliver. Some 2% of the population have learning disabilities, and 1% have autism. They are separate and distinct conditions, but they can and often coexist. People with these labels belong in all racial, ethnic, socioeconomic and gender groups, and they are much misunderstood everywhere. I welcome this Government’s commitment to improve their health and care by including learning disability and autism as priorities in the long-term plan. The promise of £1.4 million to develop and test some new training packages and to make training mandatory is wonderful.
I have been passionate about this issue since 1981—shockingly, nearly 40 years ago—when I first became a senior lecturer in learning disability. That is when I started teaching medical students at St George’s in Tooting, and involving people with learning disabilities in regular small group workshops, initially with the Strathcona Theatre Company. In 1992, after a Winston Churchill travelling fellowship in the USA, I came back and persuaded St George’s to employ two people with learning disability as co-trainers to co-deliver our teaching for both undergraduate and postgraduate doctors. Our focus was not primarily to provide information but to develop their communications skills and their empathy, so that they would be positive and confident in their future encounters with patients with learning disabilities and autistic people. We trained and engaged actors with learning disabilities as standardised patients for the final clinical examinations, which essentially meant that our course became mandatory.
In its response to the Government’s consultation last year, Learning Disability England identified four key areas for training and I agree with all of them, particularly meaningfully involving people with learning disability and autism. A number of third sector organisations have already taken the initiative to do this and to offer training to health and social care professionals and health and social care students in universities and colleges. These include Mencap’s Treat Me Well, the My GP and Me programme from Dimensions and Books Beyond Words, and numerous initiatives by disability arts groups including Freewheelers, Act Too, Blue Apple Theatre and many more. Other special interest groups have been busy too, including some doctors who have recently succeeded in getting positive support from the Royal College of Physicians to develop a proposed credential programme with an advanced diploma for physicians and a certificate for GPs. Health Education England funding support would be needed to take this further but upskilling generalists with additional special skills could be a very positive step forward.
All the reports into premature and avoidable mortality in patients with learning disabilities point to common themes of inequality of care, lack of understanding and not listening to patients and their families. There is another worry too, known as diagnostic overshadowing, which seems to happen even in the most specialist services. The label of learning disability, or autism, seems to stop clinicians looking beyond the label. Everything is attributed to the label. This is ill informed. We owe it to Oliver, and all other patients who have received inadequate care due to ignorance, to do better. We owe it to our staff to ensure that they have the correct skills and expertise to enable them to give the best care possible.
It is vital that high-quality training, designed and delivered in partnership with people and families, is made mandatory. This needs to include those who expect to have regular contact—everyone working in primary care, A&E and the emergency services, and everyone working in specialist community learning disability services—and staff who can expect less regular contact. It also needs to include those working in specialist, acute and mental health services; they should have the highest level of expertise.
My son, who has a learning disability and autism, was involved in some training with his local GP practice. The face-to-face contact he had with another expert by experience talking to everybody in the practice, all of whom needed to have the same skill, changed everything. The receptionists, the nurses, and the GPs all needed to know and all needed to have face-to-face training. That is what makes his experience so different now. However, this must have a high profile if it is to have any chance of achieving culture change in our health and care services. I have been hosting a reception in this House for the Challenging Behaviour Foundation. One speaker, telling a story about what had happened to her daughter, whose care had been so poor, said that it was as if her daughter had not been seen as human. Somehow, we have to change the culture so that everybody sees other people as human. This discrimination has been evidenced many times, including in Mencap’s Death by Indifference report, in Sir Jonathan Michael’s Healthcare for All report and in the LeDeR reports.
It often seems to be family members who take the initiative. Ginny Bowbrick, a consultant vascular surgeon in Medway and mother of autistic twins with severe learning disabilities, told me what she is doing in her trust. Just as the NHS rainbow badge campaign has been successful in raising awareness and understanding of LGBT patients among NHS staff, her Not Less campaign seeks to do the same for patients with autism and learning disabilities. Ms Bowbrick says, “The message of the campaign is simple; to care, to understand and to listen.” She plans to distribute badges and information packs about autism and learning disability, with the help of the trust’s comms team, to dispel commonly held myths and misunderstandings. The Royal College of Surgeons of England has given provisional support to her scheme, pending a final review. She hopes that it will work alongside the proposed mandatory training.
The Association of Anaesthetists sent an excellent briefing for this debate, strongly endorsing better training to achieve a safe, high-quality service. It made the point that delivering anaesthesia to patients with learning disabilities or autism presents particular challenges. They may have epilepsy, be obese or have serious mental health issues and are more likely to have congenital and chronic problems, including craniofacial anomalies and airway issues. Their physical and psychosocial challenges and their heightened anxiety may affect their ability to cope and co-operate, potentially putting themselves and others at risk.
The Royal College of Psychiatrists, of which I am a past president, also supports mandatory training. Its briefing, for which I am very grateful, raises important questions among which I have picked out a couple. Do Her Majesty’s Government agree that although e-learning can have value within a broader package of training, it is not sufficient on its own? What steps are they taking to involve local societies, learning disability and autistic groups, carers and providers in the development and delivery of the programme, and to meaningfully consider the specific barriers to employing people directly in programme planning and delivery?
The real purpose of today’s debate is to ask the Minister for an update on progress being made to develop the Oliver McGowan training in autism and learning disability awareness. It would also be nice to know when the White Paper on the Mental Health Act can be expected. I look forward very much to the contributions of other noble Lords and I am grateful for their participation.
My Lords, my involvement in autism over a number of years has been on two fronts. One is through Motability, where we are getting ever more people with an autistic background coming to us for mobility. Then, of course, as some noble Lords are aware, my grandson is on the spectrum but, pleasurably for me and all of us, at a low level. I can only emphasise what I have said so many times. I asked myself: is there anything new about what we want to do? Frankly, there is not.
I was very pleased indeed that the manifestos of all political parties—I am not getting partisan at all—all agreed that greater support for the disadvantaged and disabled are critical for everybody. I also want to say, from our experience and from my own experience, that the earlier you can identify autism, the better. That is the key. We were very fortunate that our little lad was identified at the age of three. Why? Because in the school he was at, the headteacher had actually studied and been trained and she identified it.
I deliberately thought, “I am not going to look at the old speeches I have made before. They are all there.” What I want to say specifically is that I have discussed many times with a lady many of you know, Professor Vivian Hill, the fact that, sadly, until we have many more educational psychologists who are in a position to make it quite clear and agree that somebody is on the spectrum, diagnosis will take too long.
Many of us here have chatted, individually, separately and together. People say, “Let us do some more analysis—let us wait another five years to see what we can understand”. We know what needs to be done. I have seen it myself in action. Fortunately, in the state school in West Sussex where he is at now, the headteacher has had training, and that makes a huge difference to how a school is run. It is a marvellous school, one of the finest state schools in the country, and they are so conscious of the training.
In practice, when you think about the identification of what we are talking about, a young teacher of 21 who might be in her first job, if she has had some training, it could well be that she can actually identify certain things. She can make a note and then ask the headteacher whether it should be looked at, so that autism is identified at a much earlier age. The opportunities then are immense. When people are trained and given the support they need, the children stand a much greater chance of going into mainstream schools and then, in due course, being able to get on in general life and society.
Having said that, I am afraid that people say that, somehow or other, those who are autistic should be made normal, like the rest of us. It is we who have to change. I have seen the autism figures and in actual fact, as they get older, only 16% of those on the spectrum have been able to have jobs. That is a problem of the employers. I have seen it myself in business. In practice, people are nervous handling somebody who they are told is autistic. We are the ones who have got to change.
On the need for training, I feel quite strongly about that—including for the public at large. My daughter’s little boy had a meltdown in a major store. It was terrible. He ran off and she ran after him. She got him to the floor and people surrounded them. She is quite strong, but she was so embarrassed that she picked him up to get him out, because she also had her little girl with her, and was thinking about what would happen to her if she ran away and left her. Did anybody come to support her at all?
The following day she had two policemen at her door saying, “We understand that you’ve abused your child”, and so she went on to the list. That is a shocking outcome. People did not volunteer to help. It is not just about educating teachers, which should be mandatory—no one should become a headmaster or headmistress until they are educated on this—but we should also find ways and means to educate the public, so that if they see something, they help and it registers with them that this person needs some support: “I’ll look after the little girl while you look after him”, et cetera.
I thank the noble Baroness, Lady Hollins, so much for introducing this debate. I should have thanked her at the start. I have very strong feelings on it.
Anxiety is a key factor in mental health. People are starting to understand, but it should become law that every headmaster and headmistress in the country, and anyone in a teaching role, should have compulsory education on this, so that they have the opportunity of picking up one or two points which can give a kid a chance early on.
Noble Lords probably know better than I do that the available support money in these areas is quite uneven in different parts of the country. In some, it is very high; in some, it is very low. Some do not have any support for people at all, or any understanding of what it is about. That must be addressed.
Now that we have got all of last year out of the way, I would like to think that, going forward, all political parties agree on this; it is totally non-partisan. I hope the Minister recognises that it would be a pleasure for all of us if things happened sooner. We do not need more analysis; we know what is needed and we need to get on with it.
My Lords, I am delighted to follow that moving speech. I draw attention to my registered interest in the form of my links to Mencap, and thank the noble Baroness, Lady Hollins, for facilitating this debate. I also pay tribute to her campaigning zeal on these issues over so many years; we all admire it tremendously and are indebted to her.
This is not the first time that we have addressed these issues. I spoke in a very similar debate in 2014. I served on the special investigation under the Disability Rights Commission, chaired by David Wolfe. Our 2007 report highlighted many issues to which we are returning today. It is immensely depressing that, despite warm words, so little progress of substance has been made. However, I welcome the opportunity to speak in this debate on tackling the inequalities that people with a learning disability face in relation to their healthcare services.
The noble Baroness set out clearly why all health and social care staff should receive learning disability and autism training. I, too, pay tribute to the campaigning of Paula McGowan, without whose efforts we would not be debating these matters today.
For far too long, people with a learning disability have faced inadequate healthcare and social care advice and services because of the inability of those providing the services to do so in a manner that enables the person with a learning disability to access them fully. We have heard in this House of scandal after scandal involving people with a learning disability dying avoidable deaths, often in tragic circumstances. Mencap has campaigned on this issue for many years, and I would highlight their report, Death by Indifference. Through six case studies, it revealed the reality that people with a learning disability face when receiving care in the NHS. While it led to the confidential inquiry and, subsequently, to the learning disability mortality review, things have not moved on quickly enough.
The first annual report from that review revealed that women with a learning disability are dying 29 years sooner than women in the general population, and men 23 years earlier. We can all imagine how we would feel if we were told that we might expect to live much shorter lives for reasons that could quite easily be counteracted. One can but imagine the sense of fear and anxiousness, arising from seeing shocking cases on the news, as each time you go into hospital, you think it might be the last time you do so. That is why, since 2018, Mencap has been running its Treat Me Well campaign, to transform how the NHS treats people with a learning disability and bring about equal access to healthcare.
However, equality in healthcare does not necessarily mean treating two people the same way. It is about everyone receiving the right healthcare for their needs. The NHS and social care staff are overwhelmingly dedicated to their profession and seek to provide the best possible care for every person, but they need the appropriate skills to achieve this. We must not assume that all such staff have direct personal experience of engaging with people with a learning disability or, necessarily, positive attitudes when doing so.
The Treat Me Well campaign revolves around local groups working with their NHS Trusts and healthcare professionals in a positive manner, rather than simply criticising poor practice. It is our duty to ensure that all staff, existing and new, are equipped with the essential skills and tools to provide the best possible care, regardless of a person’s disability. That is why mandatory learning disability and autism training must be part of the curriculum.
This debate is primarily about England, but health inequalities are not bound by borders so it might be helpful to share the progress made in Wales, where almost all the relevant responsibilities are devolved to the National Assembly. There may be much that we can learn from each other. Actions to reduce health inequalities have been in place in Wales since 2014, when the Welsh Government introduced the learning disability care pathway. This was a direct response to the tragic death of Paul Ridd in Morriston Hospital, Swansea, in 2009. Paul’s family have worked tirelessly in partnership with Mencap Cymru to improve awareness of the needs of patients with a learning disability. I pay tribute to Jayne Nicholls and Jonathan Ridd, Paul’s sister and brother, for their commitment over the last decade to improving health outcomes for people with a learning disability in Wales.
In November the Welsh Government announced plans to introduce mandatory learning disability awareness training for all NHS staff. This will, appropriately, be named after Paul Ridd. Such training is being designed with input from Mencap Cymru, the Paul Ridd Foundation and the University of South Wales. It is expected to be rolled out gradually and systematically, starting very shortly. I warmly welcome that move and congratulate all who helped to bring it about. I hope that NHS England engages with colleagues in Wales to share best practice in both directions and to learn from our respective experience.
A key element of the training provided in Wales is the central role that those with their own lived experience have played in its creation. I agree with the noble Baroness, Lady Hollins, that central to rolling out effective learning disability and autism training in England, and preventing it becoming a tick-box exercise, is ensuring its co-production and co-delivery by people who themselves have direct lived experience. Tick-box training simply will not stop the continuous list of scandals we have experienced. Putting those with lived experience at the heart of the training will go a long way towards breaking down negative attitudes and stereotypes and help to develop staff communication skills.
My ultimate hope is that training co-developed and co-produced by people with lived experience will help to prevent premature deaths. I hope that the Minister can give some reassurance that those with lived experience will play a central role in such training, and that she accepts that this is one vital step among many for ensuring that people with a learning disability receive the standard of healthcare that they have a right to expect.
My Lords, I declare my interests as outlined in the register and thank the noble Baroness, Lady Hollins, for securing the debate. I will speak only briefly because other noble Lords have made several of the points that I wished to contribute, particularly the noble Baroness in relation to the co-design and co-delivery of inclusive education with experts by experience, and the noble Lord, Lord Sterling, in his statements about teacher education and early diagnosis. Of course I follow the noble Lord, Lord Wigley, and his excellent outline of how Mencap is working successfully in Wales through Treat Me Well.
In 2019, the Government held a public consultation on the potential introduction of mandatory training relating to learning disability and autism for all health and social care staff in England. The review was predicated on concerns identified in the learning disability mortality review programme. As already outlined, it made specific reference to the circumstances of Oliver McGowan, a teenager with autism who died in 2016 after being given anti-psychotic medication when treated for a seizure.
In response to the consultation, the Government made a commitment to pursue the introduction of mandatory training in this area, with trials beginning in April this year and due to report in March 2021. This is extremely welcome, and the results of the trials will inform the content and nature of the delivery in future. However, I particularly ask the Minister whether sufficient resources will be made available to ensure that the training, even at tier 1, will not rely on computer-assisted learning alone. Without interaction with families and other people with lived experience of supporting people with learning disability and autism, success will not be achieved. In tier 2, for example, it is essential that staff are trained in the accessible information standard, so that they can explain to people seeking help in care what is actually going on.
For tier 3—education for staff directly providing care and support for people with learning disability—learning disability nurses are key. Noble Lords will be aware of the ongoing shortages of learning disability nurses and the challenges of recruiting them, particularly as students of nursing. The Council of Deans of Health welcomes the new student support arrangements, as I do, particularly the additional student maintenance grant for learning disability and mental health nursing students. That will assist in recruitment. It is vital that there is increased partnership working between the independent and voluntary sector, the NHS and universities to ensure the sustainability of the profession and appropriate clinical placements during training. Let us be clear: CPD and the NHS alone will not solve these issues. Can the Government clarify that the new maintenance support arrangements will be fully funded for nurses in training for at least all new intakes during this Parliament?
The development of a postgraduate certificate programme in learning disability and autism, with co-creation from patients and families involved in a meaningful way, may be a gateway to encouraging more health and social care staff to enter learning disability care, and to retaining those staff with clear pathways for career development. If the Government are to achieve their mandate of further reducing in-patient provision by 2023-24 at the latest, it is essential that significant investment in staff development and recruitment of new staff is undertaken. Not everyone who works in a hospital environment is well suited to more community-oriented provision, as we found when we closed mental health hospitals in the 1980s and other learning disabilities facilities.
I warmly support the Government’s plans but seek assurance from the Minister that adequate investment will be made in health and social care education for competence to work with people with learning disability and autism to enhance services for this vulnerable group, not only to save lives but to improve the experience of people with learning disability and autism who access and rely on the NHS and social care services. For once, I will steal a line from an independent insurer, Bupa: we need to ensure that people with learning disability and autism
“live longer, healthier, happier lives.”
My Lords, there is an unpleasant familiarity about this debate. Anyone who has been here for any length of time has heard these issues raised before. The similar issue has also been raised—the noble Lord, Lord Sterling of Plaistow, beat me to it in mentioning the Department for Education—that if you are not trained to deal with something, you will not deal with it. You will go back to your original training because that is what is in your DNA and you will refer to it straightaway. If you are told that that is not the way—“You’re a professional, you know better”—you will fight against it. Thus the tiger parent, who has often been helping this person out for so much of their life, is in a situation of conflict. This has been a rich thread running through most of the examples of things going wrong: somebody who knows how this individual behaves is not being listened to in delivering the help.
There is nothing new about this, nor anything particular to the health service about it—it is just that you get dramatic results from the health service. You do not get long periods of decline in medical health; mental health care might normally have a slower drip, but it is there. The person involved often has to be trained to listen to those outside. That will be one of the steps forward. As has been said, different levels of training will be required for the first to be efficient. Just having an awareness programme delivered online or in person will not be enough. You will need expertise to come in and help with that situation, because anybody who has trouble processing information and giving it out, which both of these groups have, will be a problem.
The medical profession works by talking to you often—allowing you to know what is happening and allowing you to explain the problems. The Minister will have come across communication problems with those who are deaf. Their problems are different, but there is a similarity in the general thrust of what is going forward. If we value these people as fully as the law tells us we should, we have to make sure that this communication is facilitated and that people know they have to do it. The senior nurse and doctor involved need to know that it is not a slight on their professional conduct to get somebody else involved. It is the same in teaching and other areas. You have to make sure that they understand when they have to get support and help in. If they do not do that, it does not really matter what else you write down. If they do not realise that they have to reach out, they have problems.
As has been said, we need to hear from the Minister what the structure of progress is for making sure that this happens more frequently. It is an excellent idea that all new staff be started on this programme, because that cements it as something that is there and solid. CPD can then start to pick up some of the rest of it, provided the structure is in place. I accept the caveat that you must have a decent training programme in the first place, because there is no point wasting your time with bad training. What are we doing there? How will we start this and make sure that we say it is a requirement? This is the big question, and I would like the Minister to answer it today.
If we are to carry on developing a programme that allows people to interact quickly, we need a starting point. It would also help to have some idea when the Government think they will have good coverage across the board, or at least enough knowledge for someone who has not received this training to ask where they can get the help and support, call in somebody else and not have it seen as a slight on them, because this will take resources and occasionally slow down the process. Pretending that it will not happen will help nobody. Can we get something to go through on this?
If we go on pretending that once you are trained, you are fine—I think it has been agreed on an intellectual level that this cannot happen—we will achieve very little. The rate of progress will be very much slower than it should be. Can we get an idea of the time structure for making sure that everybody knows that it is okay to ask for help and support, and that if something is identified then there are processes that have to be gone through and accessed? What duty is there to make sure that you have read clearly and understood what may be a note on paper or in a file somewhere telling you what process to go through? This is a very odd thing, because the Minister will say, “Of course you’re supposed to understand it”, but what training is there to say, “By the way, do it and ask for help”? These things will all come together.
It will never be easy, because you have to tell someone to change their behaviour, and there will always be entrenched resistance to that. Look at us: we do not like being told that we get things wrong and have to change—there may be one or two noble Lords here who do, but I know that I certainly do not. However, we have to do it occasionally. This problem is further exemplified in this field in so far as it was once said to me, “Once you know about an autistic person, you know about one autistic person.” There is a huge number of patterns and variations in that field: those who hate to be touched and those who are huggers, for example. That is a pretty basic difference in patterns of behaviour between two people who are supposed to be in the same group.
Can we get some idea of the progress structure? We have already heard that we have enough information to do better things, even if they are not perfect. Can the Minister give us an idea of start dates, progress dates and when information will come down to those who have not been taken into this that they must refer to those who have? If we do that, we have the start of fundamental change to the system. If we do not have that, we will just have bits of good practice and will see the horror stories coming through here at a slightly slower rate. Surely we do not want to aspire to that.
My Lords, I declare an interest as a lay member of a CCG, and as someone who is therefore involved in the monitoring of LeDeR and other issues related to this debate.
It is a pleasure and an honour to participate in this debate initiated by the noble Baroness, Lady Hollins, who has probably done more than anyone I know to shift opinion and public policy in this area. I pay tribute to her for that. I hope she will not mind me saying that she is a great example of how expertise and persistence are such an effective combination in your Lordships’ House. This welcome debate should be seen as yet another step on that journey.
All the expert contributions tonight are important, but the theme of all of them is how to combat ignorance and ensure that there is expertise and learning on this from top to bottom of the NHS and our social care system. Like the noble Baroness, I welcome the Government’s commitment and specific inclusion of learning disability and autism as one of the clinical priorities in the long-term plan. However, I echo her questions about the introduction of mandatory training. I am grateful for the briefing we received on this, and I particularly appreciated the briefing from the Royal College of Psychiatrists, which pointed out something that we all know:
“The existence of significant co-morbidities and health inequalities for people with learning disability and autism demonstrates the need for better training across all of health and social care, including psychiatry, to improve patient outcomes and patient experience.”
I am also pleased to learn that the Royal College of Psychiatrists will soon publish its own report,
“on the psychiatric management of autism and Asperger’s syndrome in adults, which include specific recommendations for autism learning objectives within all sub-specialities of psychiatry.”
I think those are the expert’s words for what the noble Lord, Lord Addington, said: if you have met one person with autism, you have met one person with autism.
We know that last year the Government launched
“a consultation on proposals for introducing mandatory learning disability and autism training for health and social care staff”
and received a significant number of responses, including from lots of the organisations that have briefed us all prior to this debate. However, the challenge, as other noble Lords said, is significant indeed:
“There are over 1.2 million NHS staff and nearly 1.5 million adult social care staff in England”
and, as we learned, we have also to consider staff who work in Wales.
My first question is about the progress of developing and testing the learning disability and autism training pack, as well as developing guidance to employers to support them in assessing what level of training staff require. When are we likely to see that?
The noble Baroness, Lady Hollins, posed many of the questions that I thought were relevant here. Does consolidating autism training and learning disability training run the risk of not appropriately reflecting those differences? I am sure that the Minister will have an answer to that question. I echo what has already been said on e-learning, which I do not believe would be sufficient for training and learning in this area. Having been involved as a lay member of a CCG, even at that very low level one is required to undertake a lot of e-learning. We have to learn about safeguarding and conflicts of interest—it is all e-learning. I have done it all, and it is fine, but I am not sure that a huge amount of it stuck in my head. I got through, passing pretty much everything that I was asked to do, but I am not sure that that was the point. In this area, the lived experience of and learning from people who are experiencing these conditions will stick and will be much more relevant. Therefore, just e-learning and training packages will not be sufficient, as expert as the NHS is at producing these online packages for people to experience.
We have heard about powerful lived experiences, and I have been moved by some of the contributions this evening. I was also struck by the briefing from Mencap. I know that the House does not need to be reminded about life expectancy, but I was struck when Dan Scorer from Mencap said that this makes “grim reading”, and by his article in the Guardian last November about the scandalous detention of learning-disabled people.
In other words, there are some serious issues here. I echo what the noble Lord, Lord Sterling, said: we do not need more reviews; we need some action and investment.
My Lords, I thank all noble Lords who took part in this short debate. In particular, I thank the noble Baroness, Lady Hollins, for her Question, which has allowed us to have this important and moving debate, and for her dedication to this issue; she said that she has been working on it for more than four decades. She has certainly gained this House’s unremitting respect for her work. In particular, I thank her for her vital work as independent chairperson for the care and treatment reviews of people with a learning disability and autistic people in long-term segregation. That work could not be more important, and her contribution in that respect is invaluable.
Noble Lords will know—they have demonstrated this—that the care and treatment of people with learning disabilities and autistic people has come under intense scrutiny in recent months, with widespread concerns about how we care for and support some of the most vulnerable in society—and rightly so. Tonight’s debate has been part of that. Everybody should receive the same high-quality care, whether or not they have a learning disability or are autistic. Despite this, as has been said, there remain serious disparities in the quality of care and support that they receive. As has also been said, evidence shows that they can experience poorer health and die sooner than the population as a whole. We must change that.
As the noble Baroness, Lady Hollins, rightly said, these disparities can arise as a result of health and social care professionals lacking the training or experience—or, sometimes, just the confidence—to deliver effective and compassionate care. I have no doubt that staff want to support everyone, including people with a learning disability or autism, to the best of their ability. Like the noble Lord, Lord Wigley, I pay tribute to Mencap’s survey for its Treat Me Well campaign, which found that almost half of staff responding thought that a lack of training on learning disability might be contributing to avoidable deaths and that two-thirds of staff wanted more training focused on learning disability. We are listening to that.
As noble Lords are aware, last year DHSC consulted on proposals for mandatory learning disability and autism training. The consultation was in response to the Learning Disabilities Mortality Review programme’s second annual report, which recommended the introduction of mandatory training. A common theme in the deaths reviewed by the programme was, as has been pointed out, the need for better training and awareness of learning disability. The same is true of autism. We published our response to the consultation in November, setting out our plan to introduce the Oliver McGowan mandatory learning disability and autism training across the health and social care system. The training is named in memory of Oliver McGowan in recognition of his family’s tireless campaigning—including a previous debate on this matter—for better training for staff.
In future, we want all health and care professionals, before starting their career or through continuing professional development—a point made by the noble Lord, Lord Addington—to undertake learning disability and autism training, covering common core elements so that we can be confident that there is consistency across education and training curricula. We are working with professional bodies and the devolved Administrations to align syllabuses and training requirements with the learning disability and autism capability frameworks at the earliest opportunity.
We have committed £1.4 million to develop and test, during 2020-21, a package of learning disability and autism training in a range of health and social settings to help us better to understand the implications of mandatory training and the associated costs before wider rollout in 2021. I assure the House that the training will involve people with lived experience at every stage throughout its design and delivery, which I know is critical to its success.
We are also clear that, to realise fully the benefits of this training, it must be mandatory. We will undertake a number of actions, recognising that different approaches will be needed for different staff groups to make sure that it is effective. These will include proposed changes to secondary legislation to ensure that providers who carry out regulated activities ensure that staff receive training that is appropriate to their roles. We will also explore options for those working in non-regulated activities.
I will just pick up on a few of the specific points raised. The first is e-learning, raised by the noble Baronesses, Lady Hollins, Lady Watkins and Lady Thornton. In the consultation on mandatory training, we heard very clearly that having a face-to-face component is important. We will consider how to build this in in an appropriate way as we develop and trial the training package. We are currently developing the specifications for trial and evaluation.
In response to the question about the timeframe from the noble Lord, Lord Addington, and the noble Baroness, Lady Thornton, the strategic oversight group met for the first time last week. We will publish invitations to tender later this month, and will then seek to appoint and sign contracts with suitable training and evaluation partners in April. We will commission and publish an evaluation of the training package by March 2021 to inform a wider rollout of mandatory training across the system. I hope that is reassuring. Of course, we will seek to learn best practice from anyone we think can help us; this will include the devolved nations, which I hope is reassuring for the noble Lord, Lord Wigley.
I will just pick up on the question raised by the noble Baroness, Lady Watkins, regarding workforce, which will of course be critical to making sure that this is effective. In addition to our new maintenance grant funding for eligible pre-registration nursing, midwifery and allied health students, we announced additional payments of £1,000 for new students who study in challenged specialisms, which would include learning disability specialisms. I think that answers the question she raised.
On the question regarding the review of the Mental Health Act raised by the noble Baroness, Lady Hollins, this was completed in December 2018 and its findings were clear that we need to modernise the Mental Health Act to ensure that patients are not detained longer than absolutely necessary. We have said we will bring forward a White Paper in the coming months. We intend to pave the way for a reform of the Act and tackle the issues raised in that review to ensure that people subject to the Act are treated with dignity and respect. The intention is to ensure that we provide more patient choice and autonomy and enable patients to set out in advance their care and treatment preferences, and also to improve the process of detention, care and treatment. I hope that is reassuring. The reason for doing it in this White Paper process is because of some of the complexities around the legislation and to ensure that there is appropriate pre-legislative scrutiny.
It applies to all staff coming in from September, so it will apply from now on. I am happy to write and confirm the specific details if any further clarifications are necessary.
I want to reply to the very moving speech and lived experience given by my noble friend Lord Sterling. He will know that there is an autism strategy. Its intention is to address some of the important concerns he raised about improving diagnosis, helping adults with autism into work and improving access for adults with autism to the services and support they need—but obviously this does not address some of the concerns he raised about the experience of children with autism in schools and public services. That is why DHSC recently refreshed the Government’s arrangements around the autism strategy to improve its performance, to address explicitly the causes behind the gap in life expectancy that autistic people face and to make progress towards reducing it, but also to take forward a new autism strategy, which will be published in the spring, to extend the scope of the strategy to children and to deliver on one of the key commitments, which is in the long-term plan: to test and implement the most effective ways of reducing waiting times for autism diagnosis for children and young people. I hope that answers a few of the noble Lord’s questions and is reassuring.
I particularly note the very relevant points made by the noble Baroness, Lady Hollins, regarding diagnostic overshadowing and the reports by parents of children with learning disabilities and autism who feel as though they are treated as somehow less than human. As the noble Baroness and the noble Lord, Lord Addington, said, this must, and will, change.
Mandatory training, and many of the issues we have debated this evening, will play a key role in bringing about that culture change. But it will happen only through the collective commitment and work of every member of staff who takes on the training and looks for help when they do not understand how to do it, and by realising that we must have change not just in our health service and public services but within our culture as a whole. As this debate has shown, we all can and must do better in this area.
House adjourned at 7.40 pm.