Covid-19: Effect on People with Learning Disabilities

– in Westminster Hall at 4:31 pm on 15th December 2020.

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Photo of Nusrat Ghani Nusrat Ghani Conservative, Wealden 4:31 pm, 15th December 2020

I remind the hon. Members that we have some changes due to covid and that we must observe social distancing rules. Before they exit, Members should wipe down any surfaces that they have spoken into or touched. I will call Members according to the list in front of me.

Photo of Chris Matheson Chris Matheson Shadow Minister (Digital, Culture, Media and Sport)

I beg to move,

That this House
has considered the effect of the covid-19 outbreak on people with learning disabilities.

It is a great pleasure to serve under your chairmanship, Ms Ghani. I thank all colleagues and hon. Members for attending this debate.

Health inequality for people with learning disabilities has been evident for decades; even during non-covid times, there were three preventable deaths every day. In 2004, it was reported that 37% of deaths of people with learning disabilities were preventable, and, in 2017, the Equality and Human Rights Commission found that 42% of people with learning disabilities died prematurely.

Despite clear data showing those disproportionate health inequalities, very little has been achieved in tackling the issue in the intervening years. The pandemic has highlighted the issues that many people with learning disabilities face and the lack of understanding in our society of their needs. Things need to change, and quickly; these are deaths that can be prevented and lives that should be lived.

The pandemic has provided a wave of challenges for the NHS and care systems; we do recognise the workers there for their hard work and their sacrifices. However, underlying the struggles faced by the NHS this year are 10 years of austerity and cuts to our public services. It is the most vulnerable who suffer most from these cuts.

In addition to the historic health inequalities, the pandemic has only made things worse and had an even greater, disproportionate impact on people with learning disabilities. They face reduced access to vital care and support, as well as to valued activities and day centres. Increased isolation and loneliness, during the lockdowns, have also had a profound effect on their mental health and will leave lasting effects on their health and wellbeing.

This isolation and loneliness is exacerbated because people with learning disabilities are less likely to have access to technology, which so many people relied on to stay in touch during the pandemic. Professor Jane Seale from the Open University found that, before the pandemic, there was evidence to show that people with learning disabilities already experienced significant digital exclusion, and that this had a devastating impact on their mental health and wellbeing.

A number of my own constituents have been in touch to raise these issues and to tell me how important it is for people with learning disabilities to have some kind of normality—or, at least, access to specialist activities and day centres. One of my constituents was worried that they were not able to take their son to a disabled swimming club—which the son had been attending for years and finds extremely beneficial—because it was across the border, in Wales. Can the Minister clarify that exemptions for cross-border travel exist? Will she make the guidelines easily accessible to ensure that people with learning disabilities are able to access valued activities and care, during the pandemic, without any extra anxiety?

People with learning disabilities have always been more likely to die in hospital, but during the pandemic that percentage has been particularly high. Perhaps one of the main issues that has led to their disproportionate deaths is the lack of awareness and understanding about people with learning disabilities and their needs. The learning disabilities mortality review found that during covid, in 21% of cases that indicated a need for reasonable adjustments—such as the provision of specialist learning disabilities services in hospital, tailored care provisions, or ensuring that the person was supported in an unfamiliar setting by those who knew them—the adjustments were not made.

During the height of the pandemic, specialist learning disabilities support was one of the most requested reasonable adjustments. However, many healthcare staff have been redeployed—working in unfamiliar environments, stressed and exhausted—making it harder to provide the adjustments and specialist care needed for people with learning disabilities. One nurse commented that she was

“redeployed for four weeks to another ward. During this period there was no specialist learning disability service provided across the Trust.”

Additionally, during the pandemic, a parent or carer simply not being able to accompany a patient with learning disabilities to the hospital can have profound results. Official guidelines stated that non-essential persons were unable to accompany covid-19 patients in ambulances or in hospital, but no definition of “essential” was provided; it was often left as a decision for the healthcare staff. Many people with learning disabilities struggle to communicate—especially in unfamiliar settings—and rely on their carers. Such a lack of communication placed patients at an even higher risk. Will the Minister work with the public health bodies across all the nations to review their guidance to ambulance and hospital services on that important issue? The lack of ability to communicate, and often the lack of specialist training, means that many non-verbal cues such as posture, gestures and general body language are often missed. That has become even more serious during the pandemic as the number of remote consultations and the reliance on the NHS 111 service has increased. NHS 111 is heavily reliant on algorithms, but the specialist care needed for people with learning disabilities cannot simply be picked up by an algorithm. We need an urgent review of the service and whether it is the right way to treat people with learning disabilities.

One of the biggest factors in preventable deaths is diagnostic overshadowing, which is when changes in behaviour are simply attributed to the individual’s learning disability and not investigated further as separate symptoms. My main inspiration for seeking the debate was my constituent Angela, who has led a vocal and active campaign to improve healthcare for people with learning disabilities following her experiences with her son. Parents and carers are crucial to helping to determine if something is wrong with their child. People with learning disabilities do not always demonstrate pain in the same way as other patients, so they cannot always express that something is wrong. Angela’s son was in pain and she knew it, yet healthcare staff refused to listen to her and just attributed her son’s pain to his learning disabilities. It was later revealed that he had a severe case of appendicitis. Their story was later used as a storyline on “Casualty”.

Training specialised nurses for people with learning disabilities is a good step forward, but that must be supported by a widespread understanding of learning disabilities across healthcare staff. The ability of all healthcare staff to provide reasonable adjustments or to be aware of the need just to listen and take parents or carers seriously could be a matter of life and death. Will the Minister therefore commit to providing adequate support to improve the understanding of learning disabilities across all healthcare staff and ensure that all people with learning disabilities are prioritised for face-to-face consultation and care?

People with learning disabilities have faced other huge healthcare challenges. Throughout the pandemic, hundreds of people with learning disabilities have been wrongly—in some cases unlawfully—denied potential life-saving treatment. At the beginning of the first wave of the pandemic, the National Institute for Health and Care Excellence published new guidance on the treatment of patients in critical care, grading them on a clinical frailty scale. The guidelines suggested that those who cannot do everyday tasks such as cooking, handling or making money or performing personal care independently would be considered frail and, as a result, not receive intensive care. All of those tasks are often difficult for people with learning disabilities, but that does not make them frail. I believe the policy was hastily reversed in April, but it has had ongoing damaging consequences, and many individuals with learning difficulties still have do not attempt cardiopulmonary resuscitation orders and do not resuscitate notices on their records without their knowledge. I welcome the Secretary of State’s requesting that the Care Quality Commission looks into inappropriate use of DNACPRs, but will the Minister commit to ensuring that all people with such unjust DNR notices are identified and that those notices are removed from their records to ensure that they can receive intensive care treatment that may save their lives?

Furthermore, in March 2020, the policy of rapid discharge was introduced, leading to thousands of patients being discharged prematurely, discharged without support, discharged to care homes without being tested and discharged into unfamiliar settings with unfamiliar staff who were unable to meet their needs, all of which have a huge impact on people with learning disabilities and are wholly avoidable. I hope we are moving away from that.

Finally, I wish to draw attention to how the pandemic has affected young people with learning disabilities. Statistics show that when it comes to preventable deaths, young people with learning disabilities are worse affected than older people. However, healthcare was not the only factor that greatly affected young people with learning disabilities. Children with learning disabilities or special educational needs faced challenges in education even before the pandemic. Lockdown, the closure of schools and cutbacks to additional support services during lockdown therefore raised new challenges and had specific implications for children with special educational needs, in terms of their learning support, structure, routine and behaviour. Although organisations such as Scope and the National Society for the Prevention of Cruelty to Children have produced resources for parents, achieving a constructive learning environment is likely to have proved extremely challenging in many cases.

Matters were made even more challenging as the supplementary support and activities provided outside school, which promote children’s wellbeing, provide social engagement and routine, and act as an additional resource for parents, were also affected by lockdown. The Petitions Committee highlighted an e-petition that asks for an urgent extension of the statutory age limit for special educational needs provision due to the effects of covid-19. I thank everybody who signed it, and I hope this debate covers their concerns. Young people with learning disabilities often rely on going out in order to learn life skills. They must not be left behind as a result of this pandemic.

Professor Sam Parsons of University College London and Lucinda Platt of the London School of Economics found that the disruption to routine caused by lockdown can be particularly negative for children with special educational needs and can exacerbate behavioural problems. A lack of structure has negative impacts on the social and emotional development of children with learning disabilities and exacerbates mental health problems. Their research also suggests that, given the need for additional educational support, difficulties in catching up are likely to be exacerbated for children with learning difficulties, so ensuring that local authorities have adequate resources to provide services for those children will be even more important in the coming year, following the current disruption to their education and support. What steps will the Minister take to ensure that adequate funding is provided to support children with learning disabilities and special educational needs properly in their education following the school closures during lockdown?

Many of the figures and stories I have mentioned today are shocking, but sadly for many that is the reality and the norm. Some 37% of deaths of people with learning disabilities were preventable. That is simply not acceptable. We must work together to ensure that people with learning disabilities are not an afterthought when it comes to healthcare, education and day-to-day life. More needs to be done to understand their needs properly and give them the support they deserve. The pandemic has shown that the social care system is at breaking point. The Government must provide adequate funding for the care sector and learn from each death of a person with learning disabilities to ensure that those disproportionate and horrific inequalities do not continue.

Photo of Nusrat Ghani Nusrat Ghani Conservative, Wealden

I ask the Back Benchers to keep their speeches to about five or six minutes.

Photo of Jamie Stone Jamie Stone Liberal Democrat Spokesperson (Armed Forces), Liberal Democrat Spokesperson (Defence), Liberal Democrat Spokesperson (Digital, Culture, Media and Sport) 4:42 pm, 15th December 2020

Thank you, Ms Ghani. In the time-honoured words, it is a pleasure to serve under your chairmanship. From the bottom of my heart, I thank Christian Matheson for bringing forward this debate. I know from my three and a half years’ experience in this place that he treats any subject that he chooses with sincerity and dedication. That is recognised across the House, and we are thankful for that.

I will make the slightly boring point, which many Members have heard me make before, that I represent the most remote and distance-challenged constituency in the UK—or one of the two most remote. Therefore, when it comes to connectivity and empowering people who have learning disabilities, there is a big challenge because we do not have 3G in many places and people just cannot go online. I think I am duty-bound to put that on the record. Hopefully, between the Scottish Government and Her Majesty’s Government in Westminster, we will eventually address the issue. In the meantime, I have that fundamental stumbling block that gets in the way of it all.

It is very easy in one’s family life to think that learning disabilities are for others. People do not think that it is going to come close to home, but in my case it did. My daughter—can you believe this, in this day and age?—went undiagnosed as dyslexic until she went to college. On her first or second day, she came back with that astounding news and said, “They say I’m dyslexic, and I am getting a free laptop.” That empowered her in a way that she had never been at school. She struggled with written answers, getting the letters in the right order and so on. That is not a very severe case, compared with what the hon. Gentleman has been talking about, but it brought it home to me that the idea that technology can tackle this issue is for real.

I give credit where it is due. It would be very churlish of me not to say that I welcomed the Chancellor of the Exchequer’s announcement in the spring that he would be scrapping VAT on electronic publications, which was a seriously good move. With that in place, the challenge remains how we get the electronic publications to work on a Kindle or whatever people use. I will not repeat myself on that, as I think enough has been said for the record.

I move on to a second personal anecdote. I have been within my family bubble during this wretched pandemic and have found myself in situations with relatives young and old—I make no apology for digressing into the issue of older people, because they are connected—who say, “I have my desktop computer,” or iPad, or iPhone, “and it’s been great, but I’ve been sending emails and they’re not going anywhere. I don’t understand.” I have had to say, “I’m afraid they have gone to the outbox.” I have to sit down and say, “This is what you do.” Just a few days ago, someone said, “I have a Zoom meeting with a loved one, but I don’t know how to work Zoom.” I would then sit down and say, “This is how you do Zoom. This is what happens.”

My point is that there are people with learning disabilities in remote parts of my constituency. If they have a connection, that is great, but to start it all off they need the tuition. They need somebody who can come in and say, “This is what is not working for you,” because the collapse in morale when the iPad or whatever does not work is almost counterproductive. It leads to people putting the device on a shelf and saying, “I’m not going to bother with that. I’ll just be lonely and miserable.”

There are two points that I want to make to our friend the Minister. The first is that, in a general sense, it would be good if we were sure that professional carers, either state or private, who go out to help people young or old had an element of IT training, so that as and when a person has been helped to dress, or whatever the need was, the carer can then say, “Ah, you’ve got a problem. Let’s see what I can do for you. This won’t take two minutes.” That would be good.

My second plea is about the provision of services for people with learning disabilities, regardless of whether they live in Strangford, the City of Chester or the highlands of Scotland. We have a great expression in Scotland, which Dr Cameron will know: we are all Jock Tamson’s bairns—we are all John Thompson’s children. It means we are all the same; we are all egalitarian. That is something we hold dear to our hearts in Scotland. We are all Jock Tamson’s bairns, regardless of whether we live north or south of the border, or whether we live in Wales or Northern Ireland.

My plea is for a co-ordinated approach between Her Majesty’s Government and the devolved Administrations to tackling this issue, because learning disability is no respecter of borders. People with learning disabilities have a fundamental human right to a quality of life, which the technology can offer. As the vaccine is rolled out, and as we have discovered what we can do with virtual technology, the challenge for the Government is to ensure that the technology now sticks and remains in place to benefit people with learning disabilities. This debate is about offering such help to the youngest, but we should also extend it to older people—although I am chancing my arm on that one.

Photo of Rushanara Ali Rushanara Ali Labour, Bethnal Green and Bow 4:48 pm, 15th December 2020

It is a pleasure to serve under your chairmanship, Ms Ghani, and I congratulate my hon. Friend Christian Matheson on securing this important debate. I want to start by extending my gratitude to all those working with people with disabilities, particularly in the education system and wider social care system, during these incredibly difficult times.

We know from our family members about the challenges that children are facing with their learning. Of course, those challenges are even greater for children with special educational needs and disabilities. Like colleagues, I have seen that in my constituency. The transition from face-to-face learning during the first lockdown to using technology has presented some challenges, particularly for young people who have learning disabilities. Of course, adults who need social care and support face huge challenges, as we have already seen. Along with other agencies, local authorities have been on the frontline in trying to protect them, but they have been doing so in the context of a decade of austerity.

In my borough, we have seen a £200 million funding reduction over a decade. That kind of austerity in public service provision does not come without consequences: it has a knock-on effect. When we faced the pandemic, we saw local services that were on the edge in any case having to support those who really need support. The reality is that we have seen the virus have a bigger impact on those who are particularly vulnerable. As we have already heard, this group faces huge vulnerabilities.

According to Government figures released in October, almost a fifth of pupils with special educational needs are currently absent from school. To compound that, only 6.5% of parents of children with SEND said that their online home learning platforms were accessible, according to the National Education Union. The evidence is clear that the education system is not able to cope effectively in responding to the needs of young people with disabilities. It is well documented in recent reports on differential impacts that there is a higher prevalence of deaths among black and Asian minority ethnic groups. Also, according to Public Health England, people with learning disabilities were up to six times more likely to die from covid-19 during the first wave of the pandemic. That is shocking, and it requires action by the Government to make sure that we learn the lessons, just as we need to learn the lessons on the differential impact in terms of death rates among black and Asian minority ethnic groups. Of course, it is important to understand these intersectional issues and the interactions relating to those in minority groups who also have a disability.

We face more restrictions in the coming weeks in London and the south-east and are now in tier 3, so when the Minister responds, will she explain what actions the Government are taking to protect this vulnerable group—particularly those with disabilities—to ensure they are getting the support they need? Since 2010 we have seen reductions, as I said, in local government funding and, despite the Government’s commitment to give the resources that local authorities need, the reality during the pandemic is that the extra burden and costs of covid in boroughs such as mine have not been fully met. That is having a knock-on effect on services, including services to those who need adult social care and young people with disabilities in need of additional support.

As for schools, a number have already said to me that the additional cost of making sure they are covid-secure has been between £50,000 and £100,000, depending on the school and its population size. It is important that the Department of Health and Social Care works closely with education to make sure that the institutions on the frontline protecting those who are vulnerable and those with learning disabilities get the support they need, and take action to prevent further loss of life.

On the funding shortfall, my local authority still has a £30 million shortage just because of the cost of covid. When the Minister responds, will she update us on what she is doing with other Departments to make sure that local authorities and other providers, including frontline care providers and education providers, are getting the support they need, particularly during the coming months, until we get a proper implementation plan for the vaccine, especially for the most vulnerable, as are many in that group?

I want to highlight some of the challenges facing my constituency. Some 60% of children live in poverty, and unfortunately we have one of the highest rates of children with autism in the country, not to mention severe overcrowding. That is why my constituency faced the fourth highest age-standardised death rate in the country, despite having a relatively young population.

These systemic challenges and the plight of those with disabilities mean that the situation is serious, which is why it is really important that the Government look carefully at the evidence and data, and respond with resources and support based on need, rather than other considerations. That is how we will be able to protect the vulnerable in our communities. My plea to the Minister is to provide the support that local authorities and other providers urgently need. If she can, I will be grateful if she can update us on what steps her Department in particular is taking to address the differential death rates for those with learning disabilities, as the Public Health England report highlights.

Photo of Kieran Mullan Kieran Mullan Conservative, Crewe and Nantwich 4:55 pm, 15th December 2020

It is a pleasure to serve under your chairmanship, Ms Ghani; I appreciate the generosity of spirit you have shown in calling me to speak. I congratulate Christian Matheson on securing the debate.

There is no doubt that the pandemic has had a huge impact on people with learning disabilities. As was mentioned, the recent Public Health England report identified a much higher death rate among people with learning disabilities. Particularly worryingly, it found that the gap is even greater for young people. The death rate for people aged 18 to 34 with learning disabilities was 30 times higher than those in the same age group without disabilities. I expect some of that relates to the overlap with other physical health conditions that are present at a higher rate in this population, as the report alludes to, but I do not imagine it will be the entire answer to why people with learning disabilities have suffered as they have in the pandemic.

My speech will focus on an issue that has been brought to my attention as a local MP: the risk of economic consequences that the pandemic poses.

Sitting suspended for a Division in the House.

On resuming—

Photo of Kieran Mullan Kieran Mullan Conservative, Crewe and Nantwich 5:03 pm, 15th December 2020

To continue, I will focus today on the risks that the economic consequences of covid pose to the job opportunities of people with learning disabilities. Locally in Crewe and Nantwich, there are a range of organisations that try to find job opportunities for people. Organisations such as Safe Opportunities and Seetec Pluss, employers such as AO.com and charities such as Community Recycle Cycles have all worked tremendously hard, and secured successful and ongoing employment for people with diagnoses associated with learning disabilities, such as Down’s syndrome and autism.

Those organisations are understandably concerned about the impact the covid-19 pandemic we will have on their ability to carry on delivering this work. We know that even before the pandemic there was a significant gap in the employment of those with learning disabilities. I have heard from residents who have struggled to find work because of their disabilities, and from their families. Recently, I took part in a meeting with Scope that explored this issue and heard from people with lived experience of it.

What might happen now? Employers might rightly be concerned about the health risks their employees could face, given what we discussed earlier regarding the additional risks that we have seen for people with learning disabilities. If we are being realistic, employers who are laying people off and struggling to make ends meet might not go as far as they ordinarily would to try and stretch people’s employability and support people into employment who have disabilities of any kind, including learning disabilities. That is the reality we will face.

Nevertheless, we cannot afford to have a lost generation of young people with learning disabilities who have missed out on employment that they would otherwise have been able to secure. The Disability Confident campaign was launched by the then Prime Minister in 2013, and it aims to encourage businesses to employ disabled people. By December 2019, more than 15,000 employers had signed up to the scheme, as they wanted to offer disabled people roles in their organisations.

There are also local initiatives. As I mentioned, we have an organisation in Crewe and Nantwich called Safe Opportunities. It has launched a campaign called Big10forSEN, which is building towards having 10 big employers locally that are putting in the effort to secure employment for people with learning disabilities.

There are other measures available. There is the 2017 personal support package, which gives people access to a disability employment adviser, and the Access to Work scheme, which provides financial support for the extra costs of being in work that go beyond the reasonable adjustments that are required in law. As part of the Access to Work scheme, specialist support is provided to people with learning disabilities and other less visible disabilities through a hidden impairment specialist team.

In response to the pandemic, the Department for Work and Pensions has worked tremendously hard to develop policy to prevent ill health-related job losses, but we must not forget the Government’s ambition to get 1 million more disabled people into work by 2027. We cannot allow the coronavirus to prevent that from happening.

Photo of Nusrat Ghani Nusrat Ghani Conservative, Wealden

There is now a formal time limit of five minutes. I call Ms Olivia Blake.

Photo of Olivia Blake Olivia Blake Labour, Sheffield, Hallam 5:05 pm, 15th December 2020

It is a pleasure to serve under your chairmanship, Ms Ghani. I thank my hon. Friend Christian Matheson for securing this important debate, which is well overdue.

I have had many messages from people who have been worried about changes to services during this crisis and about the impact that the crisis has had on their day-to-day living, with many describing it as devastating. I serve on the Public Accounts Committee, and last week we heard from care home witnesses that those with learning disabilities were

“very much ignored at the start of the pandemic.”

We were discussing the provision of personal protective equipment in care settings, but it is fair to say that many people feel that way about the whole pandemic.

Too often, people with learning disabilities have been an afterthought throughout this public health crisis. That is entirely the wrong approach because we know that the health outcomes for those with learning disabilities are poor. While more research into the impact of covid-19 is needed, what we know so far is damning. As has been pointed out, those with learning disabilities have a death rate that is 4.1 times higher than that of the general population, and 30 times higher than for those aged 18 to 34. Access to easy-read information was also raised with me, as were concerns about good public health messaging.

As if those figures were not worrying enough, many disability rights campaigners, including myself, were alarmed at the NICE guidelines for intensive care unit referrals, which seemed to actively discriminate against admitting people with learning disabilities into intensive care or life-saving treatment. I am glad that NICE has updated the guidance, but the episode shines a light on the way people with learning disabilities have been treated throughout, and perhaps before, this crisis.

As the chair of the all-party parliamentary group on special educational needs and disabilities, I have heard first-hand testimony about the huge amount of added pressure on young people and their families throughout the crisis, including the difficulties accessing education online, which my hon. Friend the Member for City of Chester described; access to hydrotherapy disappearing; other therapeutic interventions being withdrawn from schools; and a host of other issues. We will be publishing our report and recommendations early next year, which obviously go broader than learning disabilities. It is clear that, after years of being a Cinderella service, provision for children and young people with learning disabilities is already very stretched. We are badly positioned to support some of the most vulnerable people through this crisis, and that needs to improve.

I am also concerned about the delay in the publication of the SEND review. That is worrying as there is urgent work to be done in that area. The people most affected by covid—those with learning disabilities—should be at the forefront of the Government’s planning and at the forefront of their minds. Time and time again, the people with such needs, who are most affected by the covid outbreak, are given the least thought. That needs to change. While there has been progress with the roll-out of vaccines, people with learning disabilities should rightly be given priority. I see they are on the priority list, but not that high.

Let us end the Cinderella services in education, health and social care, and learn the hard lessons. We have seen some abject failures in that area in recent history. Let us learn from this pandemic, so that people with learning disabilities no longer have to wait to be treated with the dignity and respect that they deserve. Let us also ensure that all our healthcare professionals are adequately trained in this area, so that no one need fear entering health services at the moment.

Photo of Jim Shannon Jim Shannon Shadow DUP Spokesperson (Human Rights), Shadow DUP Spokesperson (Health) 5:09 pm, 15th December 2020

Ms Ghani, it is obviously a pleasure to serve under your chairmanship—sorry, I think “chairship” is the right word in this PC age we live in. It is always a pleasure to follow many other hon. Members. Some of the speeches so far have been incredible, and we thank the Members for them. It is a pleasure to follow Olivia Blake. We seem to spar with each other here. In our first debate, we were of the same mind. In the second debate, we had different opinions. And now we are back together again to support the same thing on this issue. Christian Matheson always brings to the Chamber, with compassion and understanding, points that certainly I and, I think, many Members can subscribe to and are very pleased to be part of.

During lockdown, I experienced teachers and parents alike expressing grave concern for the children who need this specialised additional help, who thrive in specially designed schemes and education, and whose parents could see the adverse effect of their not being able to follow their routines and get the external help and support that they needed. Particularly for disabled children and children with educational challenges, it is so important to have a routine in place. From my constituency, I can easily call to mind two cases of children with special needs who required emergency day placement at their school during the initial lockdown period in order to give them some of their routine back. I want to express my thanks to Longstone and Tor Bank, which filled the breach; those are two of the special schools back home in Northern Ireland.

Children with special needs saw an impact on their entire routines, starting from the change in their at-home morning routine of getting up and getting ready for school. Then they were not collected as usual by their school bus. They did not have the presence of their teacher, assistant and peers in their daily lives. And they were restricted in their daily movements by not being able to go out and about. One child was unable to be taken as usual to the local playground to get the sensory stimulation that he needed, as it was locked for an extended period.

This was not the fault of any Department or person, but the fact is that the ramifications of the lockdown and subsequent extension of holidays and so on are still being felt even now by some of the most vulnerable in our society. As schools have closed and additional support has been halted, respite and rehabilitation services have been withdrawn. These are all the complications that we see.

In particular, parents of children with autism were on their own each day in their homes with no specialist assistance, and they reported that dealing with their child’s needs impacted on the family. Some reported that they felt at breaking point because of having little or no support while their children’s special needs schools were closed. I deal with parents of autistic children nearly every week in my office—my staff do as well—and I know the particular issues for those with autism. Support workers were unable to enter the family home, and tutors who provided one-to-one tuition to statemented children were unable to visit them, so their education was interrupted. If an autistic child’s routine is changed, that makes life extremely difficult for the child and for the family as well.

The pandemic has seen an attainment gap result from the isolation of the children from their teachers and peers. Continued schooling for children with a statement of special needs, which typically represents those with severe needs, was provided in some cases, but that was not universal by any means and did not cover all the additional support. I understand that the Minister does not have responsibility for Northern Ireland, but I want to tell the story, because I think it is replicated across the whole of the United Kingdom of Great Britain and Northern Ireland. Dr Cameron, whose speech will follow mine, will probably confirm that. The gap in schooling can also be expected to make the full return to school and subsequent social interaction more challenging, especially for children with anxiety problems.

The economic impacts of the pandemic have been felt directly by those who had special educational needs in childhood. We see that in the use of food banks. Between March and September of this year, we had 180 families who were experiencing financial, social and emotional pressures, but the food bank in Thriving Life Church in Newtownards was able to help.

Since the onset of the pandemic, more than 70% of the youth who study or combine study with work have been adversely affected by the closing of schools, universities and training centres. Programmes such as STRIDE—support and training to realise individual development and employment—aimed at training and integrating vulnerable youth into the workplace, were halted because they are based in specific cafés and factories and those were closed during the pandemic. Right away, those people, who needed the daily routine of work, were not getting it, so things were quite difficult. Those programmes impart important social and educational skills and, where the young people make progress through routine and socialisation with members of the public and peers, their progress was impacted by the closure of the services.

I will conclude with this point. The most vulnerable have felt this pandemic more than anyone else. Now is the time to rebuild and restore their wee lives and the support for the families who have been left so alone. We in this place can make a difference with innovative programming and considered funding, and now is the time to take steps to make that difference.

Photo of Lisa Cameron Lisa Cameron Shadow SNP Spokesperson (Mental Health) 5:14 pm, 15th December 2020

It is a pleasure to serve under your chairmanship, Ms Ghani. I start by thanking Christian Matheson, who has provided such a detailed overview of the issues that need to be addressed. I thank him for that, not just as a Member who is speaking today, but as the chair of the all-party parliamentary group on disability. It is wonderful that he has secured this debate, and that he has spoken so eloquently and in such an important manner to raise the issues that the Government should be addressing.

I also thank all hon. Members who have taken part in the debate. We have heard excellent speeches, touching on education, employment and issues related to autism spectrum disorder. We also heard from Jamie Stone, who spoke about the impact of the internet and technology and the importance of access, as well as about family issues. As he highlighted, it is very important that we should not think of helping or assisting people with disabilities as something that is removed from our own lives, because these issues will touch our families at some point.

Great thanks have to go to the staff—to the teachers and care staff—who have worked with people with disabilities throughout the pandemic in our NHS and care settings, who have pulled out all the stops and shown absolute determination and dedication in their role, as well as to the charities, including Mencap, Sense and Scope, to name just a few.

In terms of the immediate consequences of the pandemic that need urgent attention, there are a number of pressing concerns, the first of which is access to healthcare under the Equality Act 2010. People with learning disabilities are, of course, entitled to reasonable adjustments when admitted to hospital. Although those adjustments have not been officially revoked under the Coronavirus Act 2020, one in four people surveyed by Mencap who work as nurses in the learning disability sector said that they had seen instances in which people with a learning disability were not allowed to be accompanied by a family member, carer or supporter in hospital due to covid restrictions.

The Scottish Government have been addressing that issue: people with learning disabilities are excluded from the no visitors policy, and a guide for clinicians working in hospitals has been provided, which I think has been very helpful in terms of shared practice. A top priority for future guidance must be to ensure that those with learning disabilities are allowed to be accompanied in ambulances, to hospital, for check-ups and so on, and to bring someone with them to help with communication and their healthcare needs.

Although the move towards remote consultation to treat many conditions during the pandemic has been welcomed—indeed, it has been a necessity—there is concern, as we have heard, that people with learning disabilities often do not have access to technology or find it more difficult to use, and many do not have the adaptations in technology that enable them to access those consultations in the most effective manner. Those are some of the issues that the Minister will also need to address when it comes to clinical need.

There has also been a disturbing increase in the use of physical restraint on people with learning disabilities reported by health and care settings since the start of the pandemic, with usage increasing by over 150% at the peak of the pandemic compared with pre-covid levels. I would be obliged if the Minister would look at that extremely important matter.

I will finish by mentioning mental health. Often, we think about physical health—particularly in the midst of a pandemic—but forget to mention mental health, and I think mental health is going to be one of the key priorities right across the United Kingdom going forward. The mental health consequences of extended periods of isolation, increased care burden and financial stress have been well documented in recent months, but those mental health outcomes are exacerbated for those with learning disabilities and those who care for them. A survey by Mencap found that over 70% of parents of children with a disability admitted that their mental and psychological health had worsened as a result of the pandemic; four out of five family carers had been forced to provide unpaid care for their family members, leading to increased poverty; and one in five people with a disabled family member feared they would go into debt as a result of the pandemic.

These are extremely serious issues, and I invite the Minister to the all-party parliamentary group on disability to further discuss them. I thank everybody who has taken part in today’s debate.

Photo of Charlotte Nichols Charlotte Nichols Labour, Warrington North 5:19 pm, 15th December 2020

It is good to see you in the Chair, Ms Ghani.

I congratulate my hon. Friend Christian Matheson on securing this important debate. Among the most important duties of a Member of Parliament is to speak up for the voiceless, and he has done a proud service today. I join him in paying tribute to the campaigning efforts of his constituent Angela, an exceptional woman whom I have been lucky enough to meet.

One of the overriding messages that we have heard in 2020 is that we are all in this together. Whether people have found it comforting or frightening, it has characterised our national response, but it is not really accurate. My hon. Friend Olivia Blake is right to raise the abject failures that have taken place in some aspects of provision for those with learning disabilities. The twin crises that we have faced and continue to address—the health and economic emergencies caused by the covid pandemic—impact people differently. We have learned so much about the groups who are more susceptible to serious illness and death from covid—older people, those who are overweight, those with comorbidities and, because of housing conditions and frontline jobs, ethnic minorities. We are still learning about who is suffering most from the economic impact—young people and those in precarious employment and the hospitality sector. Those differential impacts were raised powerfully by my hon. Friend Rushanara Ali.

Above all, vulnerable people suffer the most, including those with learning disabilities. Even before the pandemic, they faced serious health challenges. In 2017 the Equality and Human Rights Commission found that 42% die prematurely. Last year, the learning disability mortality review found a median life expectancy of 61 for men and 59 for women, which is more than 20 years less than the national average. People with learning disabilities are four times more likely to die of a treatable health condition. That was the situation before covid.

What we have heard today has been shocking but not surprising. We understand why guidance for ambulances and hospitals was written in haste in March, but clearly it did not fully consider the needs of people with learning disabilities—with all the consequences that we have heard today. The ambulance services’ guidance must be amended. As we have heard, it has been interpreted to mean that people over the age of 16 cannot be accompanied to hospital or bring documents with them. That leaves people with learning disabilities terrifyingly exposed, given the challenges that they face in communicating their medical needs. I hope that the Minister can now confirm that that is being changed.

What I have described has certainly contributed to the lack of reasonable adjustments being made, as has the number of learning disability nurses who have been redeployed—I have seen the figure of 34%. That has left people with learning disabilities even more exposed, as their needs are not met. Will the Minister set out what she is doing to restore and expand that crucial expertise?

The number of people with learning disabilities who were given “Do not attempt to resuscitate” notices was appalling, partly because initial guidance led to many being wrongly defined as frail. Although that guidance was reversed, many individuals may still have such notices on their records, without their knowledge, and that could have tragic consequences for their future healthcare. What is the Minister doing about that?

The Minister will recognise the wider challenge of remote consultations, which are particularly difficult for people with learning disabilities in situations where non-verbal cues and body language cannot be seen. They also increase the chance of diagnostic overshadowing, where behaviour is attributed to a learning disability rather than being considered a symptom. That has apparently been an issue with NHS 111. The NHS long-term plan is to remove one third of face-to-face appointments for out-patients, which includes the use of more remote consultations. Will the Minister assure us that people with learning disabilities will be prioritised for in-person consultations, and can she explain what guidance is being put in place for autistic people in in-patient care settings to go home for Christmas? Autism charities have warned that autistic people in residential care will have to self-isolate for 14 days when they come back from visiting their families this Christmas. That is not fair on those who need routine and support. The Government must make their guidance autism-friendly.

That all shows the need to consider the most vulnerable when making important decisions. Equality impact assessments must be made by central Government. That is something that local authorities are routinely obliged to do. Was such an impact assessment made on the guidance for ambulances and hospitals and, if so, what steps were taken to mitigate impacts? If not, what discussions were had with Mencap before the policies were introduced?

People with learning disabilities have suffered and died disproportionately in this pandemic, so can the Minister explain why only those with severe and profound learning disabilities have been prioritised for vaccination, rather than everyone in that highly vulnerable group? When will unpaid carers receive the vaccine?

Following the Government’s easements, which reduced statutory adult social care support, 69% of people with a learning disability reported in a Mencap survey that their social care support had been cut or reduced during the pandemic. What will the Minister do to ensure the support that those families and individuals badly need? The Government have an obligation to support the most vulnerable citizens first. I look forward to hearing the Minister’s reply.

Photo of Helen Whately Helen Whately Minister of State (Department of Health and Social Care) 5:25 pm, 15th December 2020

It is a pleasure to serve under your chairmanship, Ms Ghani. I thank Christian Matheson for securing a debate on this very important topic.

The pandemic has impacted everybody, but many of those with learning disabilities have been particularly hard hit. I know how difficult it has been for them, their carers and loved ones to continue to be supported to live fulfilling lives during the pandemic. Wherever possible, we have made exemptions and reasonable adjustments to the restrictions for disabled people, while balancing that with the need to keep people safe. Sadly, we know that some of those with a learning disability have suffered the worst effects of covid-19 and passed away. I send my deepest condolences to their families and friends.

Rushanara Ali asked me to talk about what we are doing about the high mortality from covid of those with learning disabilities. We commissioned Public Health England to analyse the information about deaths for people with learning disabilities in order to understand the impact of covid-19 and ensure that we could take every possible step to protect people. As hon. Members have said, its report estimated that, in the first wave, people with learning disabilities had a mortality rate from covid-19 that was between 4.1 and 6.3 times higher than the general population. We know that some of the difference is associated with having other health conditions such as Down’s syndrome and with place of residence.

The University of Bristol recently published a LeDeR—Learning Disabilities Mortality Review—report setting out findings from reviews of deaths from covid-19 of people with learning disabilities, which adds to our understanding. The findings of those reports are very concerning. I want to reassure hon. Members that we did not wait for the publication of those reports to take action. Rather, we have worked continuously to protect people throughout the pandemic, and I will briefly set out some of the actions we have taken.

From the adult social care action plan back in April to the adult social care winter plan published in November, we have worked to ensure that people who need care, including those with learning disabilities, are protected as much as possible from the worst outcomes of covid-19. That has included introducing the infection control fund, now totalling £1.1 billion, to ensure that care settings, including day services, are covid-secure. We are providing free PPE for adult social care providers until March 2021. That includes domiciliary care and personal assistance, as well as residential care homes. As testing capacity has increased, we have extended asymptomatic testing not only across care homes but to domiciliary care staff. Following the roll-out of the single round of national testing to the most high-risk extra care and supported living settings, we have launched regular retesting for those settings.

The hon. Member for City of Chester spoke about DNACPRs and the concern about their inappropriate recording in patient records. When I heard about that, I too was very concerned and shocked. The blanket application of DNACPRs to any group of people is completely unacceptable, and I want that message to be said as many times as it needs to be to ensure that that practice does not continue. When we heard that it was happening, a series of communications went out from the Department, the Secretary of State and NHS England to say that there needed to be an immediate stop to that practice. As has been said, the Care Quality Commission is looking into that. The 2021 general medical services quality and outcome framework was updated in September, and it requires GPs to review all DNACPR decisions for people with learning disabilities to make sure they are appropriate.

The hon. Gentleman also spoke about the need for training to ensure healthcare staff have the skill and understanding they need to care for people with learning disabilities. I completely agree with that, which is why I am working with Health Education England and Skills for Care to develop the Oliver McGowan mandatory training to ensure that all staff have the skills and understanding they need.

Several Members asked about remote consultations. The NHS medical director of primary care wrote to GPs in September, asking them to continue to ensure that patients who need to can access face-to-face care.

I am sure that, like me, hon. Members welcomed the incredible news that a vaccine against covid has been approved. They will know that the Joint Committee on Vaccination and Immunisation, the independent body responsible for identifying priority groups for vaccinations, has published its advice on prioritisation. In advance of that process, we shared with the JCVI the latest evidence on people with learning disabilities and covid—including the Public Health England work that I referred to—to inform their approach and ensure that those with learning disabilities would be considered alongside older people, for instance, for whom the risks are very well known. The JCVI’s advice, published in December, stated that people on the clinically extremely vulnerable list, including those with Down’s syndrome, should be in priority group four for vaccination, and that people with a severe or profound learning disability should be in priority group six.

Photo of Rushanara Ali Rushanara Ali Labour, Bethnal Green and Bow

Could the Minister tell us now or in writing about how the actions she is taking to reduce the disproportionate impact of death rates for those with learning disabilities is being addressed with facts, so that we can see the progress that the actions of her Department have led to, given the number of deaths in the second wave? It is not clear whether those interventions are working, and it would be reassuring to see how those actions are helping.

Photo of Helen Whately Helen Whately Minister of State (Department of Health and Social Care)

We will continue to scrutinise all possible evidence and data we can get to understand the impact of the steps we are taking. For instance, as I have set out, we have supported residential care settings and other carers to ensure that they have the PPE and infection control support they need. Sadly, we still see that care homes are experiencing outbreaks of covid. It is incredibly hard to stop the disease getting into these places when it is prevalent in the community. We know that the most important thing we can all do to keep those who are most vulnerable to covid safe is to take steps to reduce the spread of covid in the wider community. I assure the hon. Member that we are continually looking at the evidence and at what more is possible to do to keep people safe.

In fact—I was coming to this exact point—I have asked the Scientific Advisory Group for Emergencies care working group to consider the findings in the Public Health England and LeDeR reports to help us develop further targeted actions. The Department has commissioned research to better understand the impact of the pandemic on the wellbeing and lives of people with a learning disability. That is being led by the University of Warwick and Manchester Metropolitan University. The insights from this research will help us to further mitigate and reduce harm from covid-19, including tackling isolation and loneliness. We will keep the evidence under review.

I come now more broadly to restrictions, which I know have been particularly hard for people with learning disabilities. In particular, visiting loved ones for those who are in residential care settings has been incredibly difficult for families, friends and the individual themselves. On 1 December, we published updated guidance on visiting care homes. We advised care homes to use the rapid tests that we are providing, together with PPE and other infection control measures, to enable safer visiting. There is also guidance on visiting in-patient healthcare settings. That was updated in October, and NHS England and NHS Improvement wrote to mental health learning disability and autism in-patient providers to remind them that they must take all possible steps to enable safe regular visits.

Charlotte Nichols asked about the visiting out guidance for those of working age. An enormous amount of care was taken over that to try and establish the right balance to enable people to go and see their family if that is what they normally do while they live in a residential care setting, while recognising that they may well be in a setting where others in that care home, for instance, may be extremely clinically vulnerable to covid. As I have said, we know that once covid gets into a residential setting, it is really hard to stop it spreading. That is why the clinical advice is very strong on saying that those returning to a care setting after a visit out should quarantine for 14 days. I am really aware that that is a very difficult thing to ask people to do, but the reason it is in there is because that setting may well have people who are clinically extremely vulnerable, and there is such a risk. It is not just about the one individual visiting out; we must bear in mind the risk to the whole group of residents. That is why the guidance is as it is.

Before I conclude my remarks, I will talk about the restrictions on the day-to-day activities, which all of us have been complying with. We have made exceptions and reasonable adjustments wherever possible, for example by excluding support groups such as day services from the rule of six, setting out clear exemptions to mandatory face coverings, including where a person cannot wear one due to a disability, and working to ensure that that is communicated. There has been some debate about this and whether the ban should be much more strongly enforced, but I have personally worked really hard to communicate the importance of there being exemptions.

We have also, wherever possible, produced guidance in accessible formats, such as easy-read. We continue to work with stakeholder groups and organisations such as Mencap, which has rightly been mentioned during the debate, to ensure that we get input on the potential implications of restrictions on people with a learning disability, and how we can best mitigate those implications.

To conclude, I thank all hon. Members for their contributions on this important topic. We are all deeply committed to helping protect people with a learning disability from the worst effects of covid-19, and I hope that what I have set out today does assure Members that the Government are working tirelessly to make that happen.

Photo of Chris Matheson Chris Matheson Shadow Minister (Digital, Culture, Media and Sport) 5:36 pm, 15th December 2020

I am grateful to you, Ms Ghani, and to all hon. Members for contributing to this debate. I think it was Dr Cameron who talked about the range of different examples that we have heard today, from employment opportunities, local government cuts and the importance of technology, and she is absolutely right.

I also thank the Minister for directly answering quite a few of the questions that were posed to her. In preparing for this debate, it has been made clear to me that there is a sense of frustration among people with learning disabilities, their carers and their families, who are looking for continued progress. I simply ask the Minister and her colleagues that this debate is considered not as a destination, but as a staging post on the way to genuine equality.

Question put and agreed to.

Resolved,

That this House
has considered the effect of the covid-19 outbreak on people with learning disabilities.

Sitting adjourned.