I remind 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.
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?
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 the hon. Member for City of Chester (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.
It is a pleasure to serve under your chairmanship, Ms Ghani, and I congratulate my hon. Friend the Member for City of Chester (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.
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 the hon. Member for City of Chester (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.
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.
It is a pleasure to serve under your chairmanship, Ms Ghani. I thank my hon. Friend the Member for City of Chester (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.
5:09 pm
20 of 33 shown
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 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.
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 the hon. Member for East Kilbride, Strathaven and Lesmahagow (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.
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.
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.
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.