Covid-19: Effect on People with Learning Disabilities

Part of the debate – in Westminster Hall at 4:31 pm on 15th December 2020.

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Photo of Chris Matheson Chris Matheson Shadow Minister (Digital, Culture, Media and Sport) 4:31 pm, 15th December 2020

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.