Covid-19: People with Learning Difficulties and Autism

Baroness Hollins Excerpts

Monday 5th October 2020 Lords Chamber

[Lord Bethell (Con)]

My noble friend Lady Stroud speaks very movingly of the tough figures around the prevalence of disability among those in poverty. I completely take on board her recommendations about training in education. The Prime Minister spoke last week about the opportunity that Covid presents for a reboot around skills. That reboot will include provisions for those with learning difficulties and disabilities. I would be glad to inquire at the department exactly how developed those plans are and to update the noble Baroness with the information that I have back at the department.

[Baroness Hollins (CB) [V]]

My Lords, a ministerial response in the other place last week stated that only some supported living settings would be able to access asymptomatic testing. People with learning disabilities have had excess death rates higher than over-65 year-old care home residents, and many live in supported living settings. When do the Government intend to extend regular asymptomatic testing to all supported living settings, where the majority are still effectively shielding, and thus perhaps also enable day centres to open?

[Lord Bethell (Con)]

We are seeking to extend asymptomatic testing as widely as we possibly can and as soon as we possibly can. At the moment, our focus for testing is on residential social care, where we have committed to 100,000 tests a day. That is where the greatest threat comes from. But as the number and range of tests increase, we hope to be able to roll out asymptomatic testing to a much broader set of user cases, and the kind of care centres that she describes will surely be near the top of the list.

Coronavirus Act 2020: Temporary Provisions

Baroness Hollins Excerpts

Monday 28th September 2020 Lords Chamber

[Baroness Hollins (CB) [V]]

My Lords, a public health crisis needs a public health response, not a discourse about discipline and punishment or jokes about “not getting caught”. Public health includes public education to ensure that people understand why this virus is so dangerous and how each of us, of any age, can keep ourselves and our friends and family safe until there is an effective vaccine. There are of course other aspects to staying safe which do not mean staying at home, because domestic abuse and child maltreatment have been increasing. There is also concern about the lack of support provided to new mothers and babies during the pandemic. One survey found that only one in eight pandemic-era new mothers had seen a health visitor. There is concern about it being harder to uphold human rights during the pandemic.

We also know that mental health has deteriorated, and people with a learning disability have been disproportionately affected and impacted by Covid-19. The CQC reported a 134% increase in the number of death notifications in this group compared with the same period last year. The learning disabilities mortality review programme found that on average they were younger than other people dying in this period. Day centres have closed and most remain closed. Some have found virtual ways to support people, but people with a learning disability are less likely to own a smartphone or a tablet, or to have internet connectivity, than the general population, making maintaining contact so much more difficult.

Mencap surveyed over 1,000 family carers. As my noble friend Lady Campbell noted earlier, seven in 10 respondents said that their relative’s social care had been cut or reduced at this time, despite us being told that the easements had been little used. Eight in 10 family carers, often elderly and at risk themselves, had no choice but to provide the care themselves because of a shortage of care staff. Three-quarters of respondents said that they are scared of further cuts. Can the Minister assure this House that the Government are committed to reinstating the full powers and responsibilities of the Care Act as soon as possible? Rather than the spectre of six more months of easements, people requiring social care support deserve reassurance that their needs will be met.

Can I suggest that, instead of easements to the Care Act and the Mental Health Act, a stimulus package of support for the social care sector is needed? In its April Covid-19 action plan for adult social care, Her Majesty’s Government’s ambition was to attract 20,000 new people into social care jobs over the following three months. Can the Minister update the House today on the progress that has been made? A stimulus package could include recruiting and retraining staff made redundant from other sectors, such as the refreshment and retail industries. Staff are desperately needed in care and supporting health, to prevent isolation and loneliness, to reduce the digital gap, to reduce the disability employment gap, to avoid the mental health crises that can lead to people with a learning disability ending up in in-patient units, to support informal carers and so on. The voluntary sector has done so much during the pandemic within local communities, but it cannot replace the duties of the Care Act.

In conclusion, I return to my first request that, instead of more regulations, we should have a consistent and understandable health education message and that its effectiveness is checked. Do people understand this dangerous virus and how to keep each other safe? My informal inquiries suggest that they do not. Compliance depends more on understanding than on discipline.

Medicines and Medical Devices Bill

Baroness Hollins Excerpts

2nd reading & 2nd reading (Hansard) & 2nd reading (Hansard): House of Lords
Wednesday 2nd September 2020 Lords Chamber

[Baroness Hollins (CB) [V]]

My Lords, I refer to my interests in the register and congratulate the noble Baroness, Lady Cumberlege, on her review, which, as we have heard, was asked to look at three interventions in particular detail: hormone pregnancy tests, the use of sodium valproate in pregnancy, and pelvic mesh implants. The connection between these was not lost on the review, which noted that each of them are

“taken or used by women and, in the cases of valproate and hormone pregnancy tests, usage is during pregnancy.”

The review found a litany of failures in the system to monitor harmful effects and heard about: patients not being provided enough information to make informed choices; a lack of awareness as to how to raise complaints; struggles to be heard; not being believed; dismissive attitudes by clinicians; and life-changing consequences due to the harms that ensued.

For women, there seemed to be a confounding factor, which the report described as

“the widespread and wholly unacceptable labelling of so many symptoms as ‘normal’ and attributable to ‘women’s problems’.”

In my field, we call this diagnostic overshadowing. The review described the stories of adversity and harm it heard as being “harrowing”. This is what happens when a group is not believed and when systematic prejudices diminishes a speaker’s credibility. This stark example of epistemic injustice should serve as a reminder to all of us of the harms of ignoring the voices of the disfranchised. Of course, there are many groups whose voices are not heard and have, for too long, proved to be too easy to ignore. These include, for example, the voices of some patients detained under mental health legislation.

As we have heard, the Bill we are debating today grants wide-ranging powers to the Government—and, indeed, the Minister—in relation to medicines and medical devices, with a large number of putative regulations subject only to the negative procedure. Will Her Majesty’s Government commit to using this timely opportunity to implement the recommendations of the noble Baroness, Lady Cumberlege, in the framework of the present Bill?

There were nine recommendations, which included appointing a “patient safety commissioner” and the formation of an independent “redress agency”. Another was, quite simply, for the Government to apologise to all the women who have suffered lasting harm. I hope the Minister will inform the House of Her Majesty’s Government’s specific intentions with respect to patient safety.

The report suggests that the MHRA’s yellow card safety-monitoring scheme is poorly sensitive to adverse treatment outcomes and that the MHRA needs “substantial revision”. Will the Government commit, in this Bill, to a far greater emphasis on post-market surveillance of medicines and medical devices? In Clause 1(2), the Bill places market considerations on an equal footing with patient safety and distributive justice—namely, the availability of human medicines.

While the economic implications of the pharmaceutical and medical devices market are, of course, important, there is no implicit or explicit hierarchy in the current drafting of the Bill that would enable defence of the appropriate authority’s decision-making being based primarily on safety, or safety and availability. Will Her Majesty’s Government amend the Bill to ensure that the hierarchy of these principles is recognised in statute? I am considering such an amendment myself.

The Bill gives the Government power to extend prescribing responsibilities to new professional groups where it is safe and appropriate to do so. Can Her Majesty’s Government comment as to which professional groups they propose to extend prescribing responsibilities to and, if they do not intend to do so at the present time, when they would consider addressing this issue? What safeguards would they consider to be necessary?

Independent Residential Care

Baroness Hollins Excerpts

Tuesday 7th July 2020 Lords Chamber

[Lord Bethell [V]]

My Lords, the money that my noble friend refers to is not currently ring-fenced. Local authorities have been written to, to explain that the money should be prioritised for Covid—but, at the request of the local authorities themselves, the money was not ring-fenced.

[Baroness Hollins (CB) [V]]

My Lords, the Vivaldi project found that, in care homes where staff received sick pay, there were lower levels of infection in residents. During the next pandemic, will our priority to be to save the NCS—the new national care service—as well as the NHS, or will we have an integrated NHCS national health and care service, or, what other urgent measures are Her Majesty’s Government considering to protect care?

[Lord Bethell [V]]

The noble Baroness puts her question extremely well, but I am afraid it is beyond my ability to predict as she asks exactly what the shape of the national care provisions will be. What I can say is that the role of agency staff was always, from the very earliest stage, one of the gravest concerns we had. The CMO flagged it very early, and we moved as quickly as we could to tackle the difficult issue of itinerant staff, and to put in place both the funding and the procedures to anticipate problems of infection around staff who move from one home to the next.

Covid-19 Update

Baroness Hollins Excerpts

Wednesday 1st July 2020 Lords Chamber

[Lord Bethell]

The noble Baroness asks a sensible question. It is, however, an unfortunate truth that, by the time someone tests positive, it is likely that they may have infected other members of their household. So, our current guidelines are that anyone who tests positive should isolate themselves with all other members of their household for 14 days, thereby containing the virus and breaking the chain of transmission.

[Baroness Hollins (CB) [V]]

My Lords, are services that care for people with learning disabilities—a group with an even higher death rate than the over-65s—being provided with home testing kits? I hear of services that are having difficulty getting access to them. Secondly, what proportion of people completing a home test fail to register their test online and therefore do not receive their test result?

[Lord Bethell]

My Lords, home testing by those with learning difficulties should be a straightforward matter. Anyone seeking a home testing kit can apply for one online; we have a large supply and there is no capacity issue. The registration of home testing kits is improving all the time; we are working through a checklist of things to get that rate higher. At-home testing is a hugely valuable resource for specifically the reason that the noble Baroness alluded to, and to get the geographical spread we need if we are to make testing available to everyone in the country.

Covid-19: Response

Baroness Hollins Excerpts

Wednesday 3rd June 2020 Lords Chamber

[Lord Bethell]

I deeply regret that my noble friend had to drive from Cambridge to Stansted. We are working hard to address that and are looking at alternatives. We have now put up more than 100 sites, and I hope very much indeed that there would now be a site nearer him. We have also pioneered at-home testing, which we believe will address his key point, and we are trialling walk-in centres for city centres such as Cambridge.

My noble friend’s last point is entirely right. You should have a test when you show symptoms, but defining the symptoms of any disease, and in particular this disease, is very difficult. We do miss some people who do not show any symptoms, and some people who think that they have the symptoms actually have the symptoms of something else. It is a real dilemma and part of the battle we face against Covid.

[Baroness Hollins (CB)]

My Lords, the Statement does not address yesterday’s report from the CQC showing more than double the expected number of deaths of people with learning disabilities during lockdown—something we were warned to expect by colleagues in Italy. Will the noble Lord explain what is being done to better protect everyone in this group, including those living in residential care, but also people made vulnerable because of visits by support staff, who often visit more than one person living in the community?

[Lord Bethell]

I thank the noble Baroness for her question, which I think I understood. If I understand correctly, she is asking about those who live in social care and residential care. I commend the work of Helen Whately, the Social Care Minister, who has been an amazing champion for social and residential care. She holds our feet to the flames daily to ensure that more work is being done. Testing is one area where we have made huge progress. The provision of PPE, raised by the noble Baroness, Lady Brinton, is another, despite everything noble Lords might have read. I pay tribute to my noble friend Lord Deighton, who has brought about a huge amount of manufacturing in the UK. There is, however, more that we can do and we are working as hard as we can.

Mental Health Services

Baroness Hollins Excerpts

Tuesday 19th May 2020 Lords Chamber

[Lord Bethell]

My Lords, I understand that it is a firm “yes”, but I will check that answer and revert to the noble Baroness if there is any different information.

[Baroness Hollins (CB)]

My Lords, yesterday the Guardian reported a study by Public Health England which showed that agency staff working between multiple care homes in London were unwittingly spreading Covid-19 during the surge of the pandemic. Given the evidence of the vulnerability of those receiving care, which includes working-age adults with mental health needs, is there really a commitment to parity of esteem between physical and mental healthcare? Why has the testing strategy not been amended properly to cover these groups?

[Lord Bethell]

The noble Baroness rightly points to one of the most difficult aspects of the Covid epidemic—the itinerant staff who pass from one vulnerable person to the next. We recognised this issue at the beginning and put money in to try to ameliorate it. When testing was expanded weeks ago to key workers, it was deliberately targeted at these staff and this continues to be prioritised.

Covid-19: Social Care Services

Baroness Hollins Excerpts

Thursday 23rd April 2020 Lords Chamber

[Baroness Hollins (CB)]

My 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.

Covid-19: Care Home Deaths

Baroness Hollins Excerpts

Wednesday 22nd April 2020 Lords Chamber

[Lord Bethell]

The 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.

[Baroness Hollins (CB)]

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?

[Lord Bethell]

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.

Health: Learning Disability and Autism Training

Baroness Hollins Excerpts

Monday 10th February 2020 Lords Chamber

Asked by

[Baroness Hollins]

To 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.

[Baroness Hollins (CB)]

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.