(4 years, 8 months ago)
Lords ChamberMy Lords, the Covid-19 pandemic will be disproportionately felt by society’s most vulnerable people, including people living with learning disabilities. Care Act easements under the Coronavirus Act, which has been enacted by eight local authorities already, raise the bar for social care to the threshold of human rights violations. Despite government reassurances, people with learning disabilities are at real risk of seeing their care and support reduced or removed as the Care Act easements set a new high threshold for the provision of care.
For those with learning disabilities, Covid-19 has truly pulled the rug from beneath their feet. Visits are discouraged, employment and volunteering roles disrupted and day centres closed. These are not luxuries, they are essential components of keeping well in the community. For many of those with learning disabilities, this loss of routine, structure and meaningful human contact could be disastrous. For some, increased anxiety is leading to behavioural challenges that precipitate urgent hospital admissions under the Mental Health Act. Routine dental and other health appointments have stopped and people’s access to urgent treatment may even discriminate against them.
When the economy and people’s livelihoods were at risk, the Government announced unprecedented financial support. When more NHS capacity was needed, we built massive new hospitals across the country. But when vulnerable people saw their entire support network evaporate, the Government’s response was not to increase social care provision, but to watch it wither. I speak from personal experience and remind the House that I am a carer for my adult disabled son who is at home with me during lockdown. Three equally important areas—jobs, health, and supporting our most vulnerable people—have vastly different responses. This crisis adds urgent emphasis to the need for a properly funded national care service. I hope the Minister will say something positive about a future funding settlement. It is needed, and soon.
People with learning disabilities will need an increase in support to recover their confidence, meaningful occupation and friendships when lockdown ends. Can the Minister say what will be done to reverse the harm done by the loss of familiar support during this period, which for many will have been complicated further by other traumatic losses?
My noble friend Lady Masham spoke about the lack of recognition by the NHS of the respiratory risks faced by people with tetraplegia, like my youngest daughter. I share my noble friend’s and others’ concerns about difficulties recruiting to the care sector and our huge reliance on carers from eastern Europe, who are finding it more difficult to come here to work. I look forward to hearing the Minister’s response.
(4 years, 8 months ago)
Lords ChamberThe right reverend Prelate makes the completely fair point that this disease is utterly unfair and cruel in the way that it targets the old and the vulnerable, and those who are in the front line of our care system are carrying the greatest burden of all. Huge resources have been put in place, both financially and in terms of seeking to recruit more staff, but undoubtedly more can be done. Guidelines are evolving at great pace regarding both PPE and other care arrangements, and we are constantly reviewing and updating both the arrangements and guidelines for care home staff, as she suggests.
My Lords, many people with a learning disability share their home with others, with support from social care providers. If a housemate dies from Covid-19, this will be extremely upsetting. Also, many people were taken back to their family home, often by elderly parents, from care settings at the beginning of lockdown. Some will have died there or their elderly parent may have died, leaving them with no familiar support or advocacy. I am concerned about the availability of skills support to people with learning disabilities at such times of traumatic loss. There are accessible resources; I declare an interest as co-author of some that have been developed by Books Beyond Words. How are local authorities supporting providers and families to ensure that those receiving care are supported when someone dies, especially given the easements to the Care Act and the inability of family and friends to visit?
The noble Baroness raises what is probably the cruellest and most unkind aspect of this awful epidemic: the circumstances of death where those who love and care cannot necessarily be with those who have died or attend the funeral or mark the moment in the way that they would like. It is a cruel and horrible part of this epidemic.
We have put considerable resources into supporting charities that provide care, particularly around bereavement. If the noble Baroness has any charities that she would like to recommend, I ask her to write to me. I would be glad to make sure that they have the resources they need.
(4 years, 10 months ago)
Lords ChamberTo ask Her Majesty’s Government what steps they are taking to mandate training on learning disability and autism for all health and social care staff in England.
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.
(4 years, 10 months ago)
Lords ChamberMy Lords, I congratulate my noble friend on her much-needed Bill. I have been so impressed by the many thoughtful contributions today, including the compassionate maiden speech by the noble Lord, Lord Brownlow. It is a pleasure to follow the noble Lord, Lord Sheikh. Recollections of Dame Cicely Saunders remind me that she taught me when I was a medical student.
Before my retirement as an academic psychiatrist in learning disability, my own research and clinical practice included a focus on end-of-life issues, including decision-making for people with learning disabilities and autistic people. Research at Kingston University and St George’s led by Professor Tuffrey-Wijne, the first professor of palliative care and intellectual disabilities, has shown that—just as in life—people with learning disabilities are discriminated against in death. In countries where physician-assisted suicide has been legalised, there is growing evidence that despite the rhetoric of choice, this is just one more situation in which there is a lack of respect and understanding and the wishes, rights and decision-making capacity of people with some developmental disabilities are ignored. I declare an interest as a co-author of peer-reviewed publications on this issue.
Most people with learning disabilities still do not get equitable end-of-life care, despite a decade of inquiries and recommendations. Personalising end-of-life care for everyone is in the NHS long-term plan. The multisystem, multidisciplinary approach needed to get end-of-life care right for people with learning disabilities would almost certainly get it right for everyone else too and should be a benchmark for all services. I hope that my noble friend’s Bill will ensure equal access for everybody, including people who are made vulnerable by the ignorance of clinical staff about the reasonable adjustments they can put in place to ensure that this group too can die a peaceful death—a point that I shall spend more time exploring in my QSD on Monday about mandatory training for all health and social care staff on treating people with learning disabilities and autistic people.
I am so pleased that the needs of children such as Charlie Gard and their parents are being considered in the Bill. I have met Charlie’s parents several times and applaud their courage in drawing to public attention what happened to Charlie and themselves. To have a dying child and be in conflict with your child’s doctors is the worst kind of nightmare—a nightmare that can have long-term emotional consequences for those left behind. No parent should be put through that, especially not in the public glare of the media. Mediation is the least that can be offered. I commend that initiative most strongly and look forward to participating in further debate about how that can work most effectively.
I do not recognise the research quoted by my noble friend Lady Meacher, who is not in her place—I can assume only that we read different journals; nor can I accept that assisted suicide has any place in this Bill. But I thank my noble friend for admitting that she is afraid of an unbearable death. She is not alone, but it should make her a passionate advocate for better services rather than looking for a quick way out. The truth is that some people may feel fearful and helpless at the end of life; indeed, depression and anxiety are quite common. The excellent book With the End in Mind: Dying, Death and Wisdom in an Age of Denial by the former palliative care physician, Dr Kathryn Mannix, illustrates that beautifully. The fact is that mental health conditions are treatable and both psychological and spiritual healing are possible, even and perhaps especially when someone is dying. Parity for mental health applies at the end of life too. The well-known author and surgeon, Atul Gawande, says that a life worth living would be possible right to the very end if only we knew how to talk about what really matters and how to make it happen.
In a public lecture that I hosted at the National Gallery in 2018, Dr Mannix chose six works of art depicting death and dying for us to discuss. But she started by asking the audience how many had been present when a person died. About a third raised their hands. Then she asked how many had been present when five people died and I raised my hand. Then she asked how many had been present at 1,000 deaths and hers was the only hand raised. I am sure that my noble friend Lady Finlay is the only one here today who could say the same. We know that fear and unfamiliarity colour perception. Her experience is that many people are afraid of death.
As childbirth approaches, some women are afraid too, but easy access to midwifery and obstetric services reassures most, giving them the confidence that they can manage and that their pain will be well managed. Many women will choose to give birth at home with community midwifery provided by the NHS. Some women will need specialist obstetric help in hospital and some will need help from mental health-trained midwives and liaison psychiatry teams; for example, because of maternal anxiety related to their own past trauma such as a previous stillbirth, unresolved relationship problems and other worries. Childbirth classes are offered to both parents. The importance of family support is well recognised.
Much the same could be said for dying. It is going to happen so, as the noble Baroness, Lady Jolly, said, how will we prepare for it? How will we resolve our own complex unfinished business? Just as in the transition to motherhood, the transition from this life will need varying amounts of support. Some of us will be confident enough to want to die at home with the right support. Many people will die in a nursing home, and too many people will die in hospital. Some people will need specialist palliative care in a hospice and at home, and most people will need death education for themselves and their families. However, unlike at the beginning of life, we as a society do not seem to be shocked by the paucity of provision of end-of-life care. I suggest it is because we live in an age of denial and still fail to understand the nature of death. Last year, when responding on behalf of Her Majesty’s Government to a Second Reading debate, the noble Baroness, Lady Barran, argued that no other area of clinical care was mandated in primary legislation, but she was at a loss to disagree with me when I suggested that maternity care was surely mandated. Why cannot end-of-life care be accessed with the same degree of commitment as that provided at the very start?
On 23 July 2019, the noble Baroness, Lady Barran, wrote to my noble friend saying that I was correct. She said that,
“there are a small number of NHS services that are mandated in primary legislation, including midwifery services. These were set out in the NHS Act 1977, was updated by the NHS Act 2006 which replaced certain provisions, and most recently significantly revised by the health and social care act 2012.”
Can the Minister still defend the Government’s position that mandating care at the end of life is less important than mandating it at the beginning? I suggest it is time for a piece of mature, grown-up legislation. Is it not time that we accept our responsibly as a mature society? Will Her Majesty’s Government please support the Bill?
(4 years, 10 months ago)
Lords ChamberMy Lords, I will speak a bit more about workforce issues in this very important debate. As the noble Baroness, Lady Parminter, mentioned, nearly one in seven consultant posts in this specialty in England is vacant. I think this reflects the state of the psychiatry workforce across all of its subspecialties. In 2019, the Royal College of Psychiatrists found that around one in 10 consultant psychiatrist posts in England were unfilled. These “missing” psychiatrists in our NHS have an obvious and detrimental effect on patient care in eating disorders and across the rest of psychiatry too.
This also has a secondary and confounding effect on the psychiatric profession itself. A report this year by the BMA found that more than three in five mental health professionals worked in teams with gaps in the rota and that more than half reported feeling too busy to provide the care they wanted to on the last shift they worked. No wonder psychiatry has perennial recruitment problems. I will share an interesting statistic. Of 74 medical subspecialties, 50 are more competitive than general psychiatry and 72 are more competitive than my specialty of the psychiatry of learning disability.
The shortfall in psychiatrists cannot be resolved without addressing the ongoing underresourcing and understaffing of mental health services, especially when people’s lives are at stake. The noble Baroness, Lady Parminter, made a very important point about the high mortality rate in eating disorders compared with, for example, schizophrenia, which people think of as a serious psychiatric disorder. Reversing the workforce shortfall requires a joined-up and concerted effort. Could the Minister comment on the Government’s current plan to improve the recruitment and retention of psychiatrists?
Doctors will choose psychiatry when they feel that mental health is given the same priority and concern as physical health. Although that is now policy, mental healthcare is still treated as physical health’s poor cousin. In 2019, the OECD estimated that mental ill-health costs the UK £94 billion a year. Contrast this with the £2.3 billion extra pledged by this Government for mental health by 2023-24. It is clear that more needs to be done now; the human and economic costs are far too high. Can the Minister advise the House on what steps the Government are taking to address the shortfall in spending on mental health?
It is not just the medical workforce which has suffered over the last 10 years. Since 2009, the mental health workforce has also lost 7,000 nurses and 6,000 clinical support staff, and more than one in 10 clinical psychology posts is vacant. The sorry state of the workforce is only one part of the story. The noble Baroness, Lady Parminter, emphasised that early intervention is key to success in the treatment of eating disorders and spoke clearly about the need to introduce waiting-list standards for adult services. However, early identification of eating disorders has to happen before anybody can intervene. That means that all doctors need basic knowledge about how to recognise them. The noble Baroness notes that one in five UK medical schools seems to teach very little about eating disorders, although I understand that the GMC has specified that all medical schools should teach this. It is crucial that staff across the health service, including in primary care and general hospitals, have a basic working knowledge of eating disorders and other common mental health presentations. It is not something to leave just to specialists in psychiatric services.
On 10 February, I will be asking the Minister about the Government’s plans for mandatory training for health and social care staff in learning disability and autism. There is a relationship between eating disorders and learning disability and autism. As many as 90% of children diagnosed with autism have some form of disordered eating, and some estimates suggest that up to one in five women with anorexia has autism. The situation is complex when multiple mental health conditions coincide; there is no substitute for better trained and supervised staff.
There are many possible responses to the issue of training. The House of Commons Public Administration and Constitutional Affairs Committee recommended last year that all newly qualified doctors should work in psychiatry in one of their six foundation placements and gain some experience of eating disorders. This request has been made many times before by the Royal College of Psychiatrists and others, including when I was president earlier this century. The Government’s response to the committee’s recommendations in August 2019 stated that
“the GMC will host a roundtable with HEE, NHS England and NHS Improvement, key bodies within the Devolved Administrations, the AoMRC and individual royal colleges, the Medical Schools Council and other key bodies.”
Could the Minister provide an update on the status of these discussions?
I will end by commenting on the importance of generalism. A suggestion is gaining ground that all subspecialists should be generalists as well, with the aim of minimising the gaps that can arise between specialisms—whether the specialism is eating disorders, learning disabilities, autism or anything else. Is it time to consider additional postgraduate qualifications for generalists, while ensuring that all general psychiatrists have training in these conditions?
I congratulate the noble Baroness, Lady Parminter, on securing this important debate, on speaking so frankly, honestly and powerfully about the subject, and on allowing me to speak about some broader, related issues in the mental health workforce.
(4 years, 11 months ago)
Lords ChamberMy Lords, I will speak about mental health.
I am thrilled by the Government’s commitment to put mental health on an equal footing with physical health. However, this has to be about more than just mental health services. First, greater mental health awareness needs to underpin the Government’s approach to all public services. In her eloquent speech, the right reverend Prelate the Bishop of Gloucester reminded us of the early years manifesto and of the importance of both early intervention and understanding the impact of adverse childhood experiences on future relationships, later mental illness or an increased risk of offending.
The Government would do well to take a longer-term public mental health approach to prevention. In their new investment in schools, are they investing enough in the mental health of pupils and teachers, giving them the skills and resources they need both to implement fully the new curriculum in social, emotional and mental health, and to respond to mental health crises?
Other public mental health approaches are ripe for development and we have heard about some today; for example, measures to reduce the risk of harm caused by online abuse or the harm caused by the sensational and negative behavioural norms so often portrayed in our media, both in print and on television. Public interest journalism requires a responsible attitude; I submit that this includes some responsibility for the public’s mental health.
Of course, investment is needed in mental health services too. The gap between mental health and physical health services remains huge. The Government’s estimate is that mental illness represents 23% of the total so-called disease burden but receives only 11% of NHS England’s budget. Some proposals that could make a real difference in the medium term are: doubling medical school intake, particularly attracting candidates who might make good psychiatrists; making it mandatory for all GPs have psychiatry and paediatric training, as recommended by the Royal College of General Practitioners commission on generalism, chaired by my noble friend Lady Finlay; and consulting on the effectiveness of a fourth emergency service to attend mental health crises in the community and provide health-based places of safety.
I welcome the Government’s inclusion of learning disability and autism as clinical priorities in the NHS long-term plan, and their commitment to introduce learning disability and autism training for all healthcare professionals. As a precaution, I have tabled a Bill that would make such training mandatory; it may prove a useful vehicle to progress the Government’s aim of improving the safety of this group and reducing the health inequalities it experiences.
I am also concerned for the safety and well-being of staff in the public services. At the Second Reading of the Health Service Safety Investigations Bill in the last Parliament, I asked:
“If the HSSIB undertakes investigations of the systems failures that result in risks to the safety of patients, could we not include the safety of staff too? After all, the same systems underlie risks to both groups.”—[Official Report, 29/10/19; col. 915.]
Will the Government respond positively to the growing requests for staff safety to be included in this Bill?
I welcome the commitment to produce a national disability strategy, which should make it easier to think about the needs of disabled people early in the preparation of relevant policies rather than considering impact and relevance only later. As always, I will be looking at whether the lives of people with mental illness or learning disabilities, and the lives of autistic people, will be centre stage. I always say that if we can get it right for people with learning disabilities, we can get it right for everyone.
This brings me to social care. The social care crisis has considerable mental health consequences—for the people who need care and support as well as for those providing both formal and informal support. Fixing it requires the effective integration of health and social care. More than half of social care spending in England is on working-age disabled adults; that is, people who need various forms of support and not just personal care, which is more often needed by older adults. They may need help to access healthcare, manage finances, access community events, sustain contact with friends and family, and to gain and stay in employment. These are the cornerstones of good mental health. For example, having a job means more than just a pay packet; it encourages a sense of pride, independence and social contact. One positive action would be for the Government to recommit to making more apprenticeships available for people with learning disabilities and to provide them with more support to gain paid employment as part of the effort to reduce the disability employment gap.
A mental health Bill will be welcome if it truly addresses some of the needs I have sketched out. Could the Minister provide the House with any details of the proposed timescale for such a Bill and for the White Paper on the reform of the Mental Health Act? Currently, people at many life stages can be detained under mental health legislation because the right support is not available in the community to meet their education, communication, care, housing and health needs.
Media coverage and a recent report by the Joint Committee on Human Rights have brought the specific issue of how the Mental Health Act is being used to detain people with learning disabilities and autistic people right into the spotlight. I should remind the House that last November, the Department for Health and Social Care asked me to chair an independent oversight panel on this critical issue. I have agreed to do so. We will be looking at the care and future prospects of people with learning disabilities and autism who are currently being detained in segregation and seclusion in in-patient units, and considering how to avoid such admissions as well as the best way to ensure the best therapeutic care for them, their timely discharge and the right skilled support in the community. I look forward to working with Ministers and other noble Lords on these issues.