That this House has considered support for people with autism during pandemic-type events.
It is a pleasure to serve under your chairship, Mr Vickers. I am grateful for the opportunity to secure this debate, and to discuss a matter of deep importance for one of my Ipswich constituents, Ivan Ambrose, as well as thousands of people across our country who were failed during the pandemic. It is because of Ivan and his tireless campaigning that we are here today. He has given me permission to share his story. It is deeply personal to him, but tragically, it will be recognised and shared by many people.
Ivan is a 41-year-old man who lives in Ipswich and has been housebound for the past four years. He has autism and severe mental health problems. Prior to the pandemic, Ivan had suffered multiple breakdowns, the most recent of which resulted in him being hospitalised for three weeks. However, he had gradually started to reach a more stable place. It had taken a long time, but he had begun to feel somewhat better.
Ivan was on the road to recovery, but then the pandemic hit. Constantly changing rules left him confused and distressed. He was made extremely anxious by rules that were revised on a daily, and sometimes even hourly, basis. The mass bombardment of information in completely unsuitable formats left him overwhelmed and debilitated. His parents could not have the TV on around him, as he was unable to deal with the relentless stream of information about the pandemic, and none of that information was delivered in an autism-friendly way. No consideration was given to making information easier for autistic people to process and understand, and there was no guidance to help autistic people understand why the rules kept changing. Accessibility was simply not a concern.
After the second lockdown, as pubs and restaurants reopened, no thought was given to housebound autistic people such as Ivan. While the relaxation of rules came as a relief to many of us as we enjoyed a greater sense of freedom, Ivan was not allowed to invite anyone home—not even his favourite aunt. Those years were incredibly difficult for many people.
I thank my hon. Friend for giving a passionate speech. I also thank Ivan for sharing his experiences with the House; they are hugely important. I declare an interest as a trustee of the charity Razed Roof, which provided online sessions during lockdown to support people with autism and other learning difficulties. I am sure that my hon. Friend welcomes charities giving that support, but does he agree that we cannot rely on charities, and that there needs to be state support for people with autism?
My hon. Friend has done a huge amount of work in this area and he is absolutely right. I pay huge tribute to all the people in our charity sector, and the many organisations that played such a crucial role in supporting people during the pandemic. However, this was a failure of the Government at the time, and we should not just let charities pick up the pieces from that.
I commend the hon. Gentleman for bringing this issue forward. I always try to be helpful by mentioning some of the things we have done in Northern Ireland, and the Minister may find it helpful to know that many universities, including Queen’s University Belfast and Ulster University, offer work-based support for students with autism to help them navigate placements and internships in a way that assists them in preparing for future employment. It is really important that there is face-to-face activity. Does the hon. Member agree that, should we experience another pandemic-like event, there must be more focus on ensuring that support is still available and that the employment opportunities and health of people with autism are not hindered because they cannot access the support they need? Queen’s University and Ulster University did that, and they did it well.
The hon. Gentleman is absolutely right, and I will come to some of that in a moment. I pay huge tribute to those who were working in Northern Ireland at the time. The pandemic was worldwide and the response hit all parts of our communities.
The years of the pandemic were very difficult for many people, but for people like Ivan they were deeply and profoundly traumatic. Ivan still bears the scars of that time. He lives with post-traumatic stress disorder and continues to experience flashbacks. He has not left the house at all in four years, and to this day the TV stays off. I will be really blunt: Ivan and those like him were betrayed by the previous Conservative Government. They utterly failed him, along with so many other autistic and neurodivergent people.
The hon. Member is speaking so eloquently about his constituent Ivan. Does he agree that children with autism were failed by school closures during lockdown? That was particularly difficult for children who rely on structure and routine. Research from Queen’s University Belfast shows that that measure harmed children’s rights to play, rest and leisure, with autistic young people reporting fear, uncertainty and isolation. Does he agree that any future response should avoid school closures?
The hon. Lady is absolutely right that that had a huge impact on many autistic and vulnerable children, not least because of the lack of clear and consistent communication that I am outlining. I will not go into the issue of school closures—the Minister may touch on that in a moment—but of course they had a profound impact on all children, and we are seeing the effects of it.
I pay tribute to the hon. Member and his marvellous constituent Ivan, who he is speaking about so passionately and affectionately. Does he agree that support for autistic children and their families must be treated as a priority during and in the aftermath of pandemics and other crisis events of that sort? In my constituency, the parent of a three-year-old child who is showing clear signs of autism has been waiting for 18 months for a community paediatric assessment and just as long for dietetic support for suspected avoidant/restrictive food intake disorder. That delay is already affecting his development and nutrition at a critical stage. Does the hon. Member agree that neurodevelopmental and early years services must be properly resourced and protected, and not sidelined, so that such children are not left without support when they need it the most?
In February 2021, Ivan’s parents, Jayne and Gary, wrote to the then Prime Minister, Boris Johnson, describing how their son was struggling and pleading with him for help. Ivan sent me a copy of the letter a few months ago, and it is truly heartbreaking; you can hear Jayne and Gary’s desperation, helplessness and heartbreak as they watched their son in immense pain, powerless to help. They did finally receive a response, but it was a full 13 months later. It is not lost on me that illegal parties were likely taking place in No. 10 at the very time the Ambroses’ letter arrived.
I have met Ivan several times and I think he is a hugely inspirational person. He has turned his trauma and suffering into incredible determination, and he has spent the last four years campaigning and fighting to make sure that no one has to go through what he did. He launched an online petition in 2022 calling for autistic people’s needs to be met in a future pandemic response. Although he failed to get the 10,000 signatures for a Government response, he persisted none the less. He has featured across our local media, trying to raise awareness, and over the last few years his campaign has had a real impact. Recently, he was asked to submit evidence to the House of Lords Select Committee on the Autism Act 2009 and his evidence features in the Committee’s report. I know he is very proud of that, as he absolutely should be.
We hope and pray that pandemic-type events never occur again, but hope and prayers alone are not a responsible strategy. If this sort of tragedy should occur again, we need to make sure that autistic people, neurodivergent people and all vulnerable people are properly considered and supported.
The UK covid-19 inquiry recently published its module 2 report of its investigation into the previous Government’s response to the pandemic. The verdict was clear: that Government did not adequately consider the needs of disabled people. Neither the Minister with responsibility for disabled people nor the disability unit played a direct role in the Government’s initial strategy from January to March 2020. Neither had any part in the discussions about whether to implement lockdown, or how the effects of that decision might be mitigated.
I thank the hon. Member for the powerful and persuasive argument he is making in relation to his constituent, Ivan. Neuro- divergent children who went through the trauma of the pandemic are finding it very difficult to establish themselves in schools. It is already the case in Birmingham, certainly in my constituency of Birmingham Perry Barr, that schools are underfunded when it comes to addressing some of these challenges. Would he ask the Government to provide additional funding for schools that now have these classic symptoms, which are ever-growing?
I thank the hon. Gentleman for his intervention. We also saw severe cuts to early intervention support during the pandemic in my home area of Ipswich and Suffolk. At the height of the pandemic, children’s centres were closed and the number of visits by health visitors was slashed. I absolutely echo his call for more funding, which is why I am really pleased that the Government provided £1 billion in extra funding for special educational needs and disability in comparison with the previous year. In Suffolk, £10 million of that will be spent on specialist places. I absolutely echo and support what the hon. Gentleman said.
Data reporting on disabled people during the pandemic was also woefully inadequate. In October 2020, it was noted that data on disability across the Government was “fragmented” and did
“not allow comparisons to be made across Departments.”
The information mainly came from anecdotal reports or charity sector surveys.
Departments were tasked with improving the collection of data on disabled people. Needless to say, however, nothing much improved and no preparations were made for communicating properly with disabled people in appropriate formats. For example, for a significant period, there was no British Sign Language interpreter on Government broadcasts. The list of clinically extremely vulnerable groups who received online deliveries in the early stages of the pandemic was entirely medicalised, based on an outdated medical model of disability. Thousands of disabled people with mental distress, mobility challenges, energy limitations, sensory impairments and learning disabilities were not placed on that list for online deliveries, even though many of them could not visit supermarkets or other important outlets in person.
According to the chief executive of Disability UK, that was
“one stark example of the abandonment of the Social Model of Disability.”
It is a pleasure to serve under your chairmanship, Mr Vickers. I am grateful to my hon. Friend the Member for Ipswich (Jack Abbott) for raising this important topic. Having known him for the last 14 months, I know how passionately he feels about the national health service in his area, particularly the mental health service provision in his area. His constituents can be rightly proud of his doughty advocacy on their behalf. My hon. Friend spoke about his constituent’s campaign to improve support for autistic people following his very difficult experiences during the covid-19 pandemic. I also place on the record my commendation of Ivan for his tireless work to ensure that autistic people will receive the right form of support.
We have heard today of the challenges that autistic people faced during the pandemic. It is important that we learn from those experiences and ensure we do better in future. In 2020, the Department of Health and Social Care commissioned research into the impact of the pandemic on autistic people and their families. The report, published in May ’21, made several key recommendations that chime with the issues my hon. Friend so eloquently raised today. It included findings about access to education for autistic children during lockdown; lack of respite and support for family members and carers; the impact of the pandemic on the mental health of autistic people and the challenges they face accessing healthcare in the round; and, as highlighted in this debate, the need for clear communication and transparency of decision making to help autistic people to follow advice and guidance appropriately.
I want to provide reassurance that the Government remain committed to learning the lessons from the pandemic, to help us to prepare better in future. As my hon. Friend the Member for Ipswich alluded to, the Government have acknowledged the disproportionate impact that the pandemic had on vulnerable groups in the United Kingdom. Module 1 of the UK covid-19 inquiry was published in July last year and focused on the UK’s resilience and preparedness for the pandemic. The Government’s response, published in January this year, sets out the changes we have made to ensure that we reduce the potential unequal impacts of events on particular groups or individuals in any future pandemics. However, as my hon. Friend also highlighted, we recognise that there is a lot of further work to do to ensure that the impact of inequalities and vulnerabilities in pandemic decision making is fully anticipated and planned for.
I will have to go back and check that particular sub-group of flagging and get back to my hon. Friend, but I think the point he makes is that, wherever possible, we should be identifying those groups that have specific communication needs, by virtue of either their own personal health or social needs, or the needs of those they are looking after. He makes a very valid point and I will be delighted to write to him with a more detailed response than I can give at the moment.
More broadly, I have heard concerns about support for autistic people. I reassure my hon. Friend the Member for Ipswich that we are committed to supporting autistic people, who should have the right support in place, tailored to their individual needs. Our 10-year health plan sets out an ambitious reform agenda to transform the NHS and rightly make it fit for the future. That future must at its core include early intervention and support for autistic people and those with specific needs.
We are working with the Department for Education on reforms to the special educational needs and disabilities system, ensuring that joined-up support is available across education and health, including for autistic children and young people. We are also taking steps to improve access to adult social care services for those who need them. To build consensus on plans for a national care service, Baroness Casey is chairing an independent commission to shape the medium and long-term landscape reforms needed, and we have been putting the core foundations in place to facilitate that. That includes strengthening joined-up care between health and social care, so that people experience more integrated, person-centred care, including through the development of neighbourhood health services.
I have also heard about the impact of the pandemic on autistic people’s mental health and wellbeing. We know that autistic people are, sadly, disproportionately impacted by mental ill health and face challenges in accessing services in relation to their mental health. We are taking steps to address that, including raising awareness and understanding of autism within health and social care systems. We have been rolling out the Oliver McGowan mandatory training on learning disability and autism to support Care Quality Commission-registered providers to meet their statutory requirements and ensure that their staff receive specific training on learning disability and autism. NHS England has been rolling out additional training services across its mental health services, and has published guidance for mental health services on meeting the needs of autistic adults and guidance on adaptations of NHS talking therapies specifically designed for autistic people.
11:27 am
Sitting suspended.
It was not until 21 May 2020, two whole months after the country went into lockdown, that the position of disabled people was even considered at interministerial level. Disabled people were an afterthought; their needs and how the Government response to the pandemic might affect them were not considered. Ivan and thousands of other autistic and neurodivergent people across the country bear the consequences of that negligence today.
That model, which was developed by disabled people, says that people are disabled by barriers in society, rather than by their impairment or condition. It is widely accepted and has been the recommended model for all Government Departments for several years.
The failures that we have heard about in the first two inquiry reports are utterly shameful. Between June and July 2020, the National Autistic Society ran an online survey looking at autistic people’s experience of coronavirus and the lockdown. Autistic people were seven times more likely to be lonely and six times more likely to have low life satisfaction; nine in 10 autistic people worried about their mental health during lockdown; and one in five family members had to reduce work because of caring responsibilities. That is an appalling legacy. It cannot happen again, and our Government must ensure that it does not.
I know that the Government are currently looking at the UK’s pandemic preparedness and recently concluded Exercise Pegasus, a pandemic simulation exercise assessing our ability to respond to another pandemic. One of the core objectives of the exercise was to explore the impact of inequalities and consideration of them during pandemic decision making. I look forward to seeing the results of that work.
As the Government prepare the pandemic response plan, I am very glad that the impact on vulnerable people, including autistic people, and preventing such events from happening again are front and centre in that work; I look forward to the Minister outlining in more detail what steps the Government are taking to ensure that. What happened to Ivan is a tragedy and a gross injustice. He is still suffering today and might suffer for many years into the future. That cannot be undone, and the damage inflicted on him cannot be taken back—but, as we prepare for future pandemics, we must make sure we do better.
I finish by thanking Ivan and his parents Jayne and Gary for their tireless work in raising awareness and campaigning so relentlessly and selflessly. Ivan’s resilience and commitment to fighting so that no one goes through the torment that he did and still suffers from is commendable. We should all be inspired by him. I will be frank, however: warm words of inspiration and thanks are simply not enough. We need to see lasting and permanent change, so that what Ivan went through can never happen again.
The inquiry recently published module 2 of its report, focusing on UK decision making and political governance. The report highlights that considerable numbers of people suffered from the social, economic and cultural consequences of steps taken to combat the pandemic, such as lockdown, including the impacts of social isolation, loneliness and declining mental health, and of course the chopping and changing of advice—which was sometimes necessary, but perhaps, on reflection, sometimes unnecessary. Module 10 of the inquiry is focusing on the impact of the pandemic on society in more detail and will carefully consider the findings in due course.
It is clearly critical that the UK is prepared for a future pandemic, and that is rightly a top priority for the Government. The Department’s new strategic approach to pandemic preparedness continues to recognise the disproportionate and unintended impacts that pandemics can have on vulnerable people and groups. The Department is therefore committed to publishing a new pandemic preparedness strategy, which will be published next year and will show how the unequal impacts of pandemics on social health and healthcare are considered in all areas of preparedness and response.
As my hon. Friend also alluded to, we have recently concluded participation in Exercise Pegasus, the largest ever simulation of a pandemic in UK history. Exercise Pegasus gives us an opportunity to examine our preparedness, capabilities and response arrangements, and we will continue to learn as we plan for phase 4 of the exercise in 2026. The Government have committed to communicating the findings and lessons, and a post-exercise report will be delivered in due course.
I recognise the concerns raised about accessible communications during the pandemic, and hear loudly my hon. Friend’s reflections. The UK Health Security Agency was established in 2021 and is responsible for preventing, preparing and responding to infectious diseases and other environmental hazards. The UKHSA collaborates closely with the voluntary and community sector, including organisations working with and representing autistic people. That close collaboration has allowed it to gain rapid feedback from those organisations regarding the efficacy of communication and guidance materials so that they can be adapted as required, in real time, to communicate with all members of our society and not just some.
More broadly, the Government recognise the importance of accessible communications and have published guidance on that for all Government Departments. Within health and social care, all NHS organisations and publicly funded social care providers are expected to meet the accessible information standard, which details the approach to supporting the information and communication needs of people with disability, impairment or sensory loss. NHS England published a revised standard in June this year to ensure that the communication needs of people with a disability, impairment or sensory loss are met within health and care provision. We are also taking steps in the health and care system to improve the accessibility of services for autistic people more broadly. For example, there is work underway in NHS England to make sure that staff in health settings know that they need to make reasonable adjustments for people. That includes the introduction of a reasonable adjustment digital flag, which enables the recording of key information about a citizen or a patient, including that a person is autistic, and the reasonable adjustment needs to ensure support can be tailored appropriately.
I am sure that my hon. Friend is aware that the House of Lords special inquiry Committee on the Autism Act 2009 published its report and recommendations for Government on 23 November. I understand that his constituent Ivan contributed to the inquiry, and I personally thank him and others for sharing their valuable insights and experiences, despite all the trauma that they have been through. The Government are carefully considering the Committee’s recommendations on the next autism strategy and support for autistic people, and we will respond formally in due course.
I end by reiterating my thanks to my hon. Friend and his constituent Ivan. I also thank my hon. Friend the Member for Harlow (Chris Vince) and the hon. Members for Westmorland and Lonsdale (Tim Farron), for Strangford (Jim Shannon), for Upper Bann (Carla Lockhart) and for Birmingham Perry Barr (Ayoub Khan) for their contributions.
Whether through Exercise Pegasus, looking at how we can better co-create guidance with vulnerable groups, using better guidance tailored for specific communities, using digital flags on health records, or indeed better mandatory training, I give my hon. Friend the Member for Ipswich this assurance: no longer will disabled people or people with specific or additional needs be treated as an afterthought. They will be at the forefront of our minds when planning future pandemic training and preparedness—and when executing that preparedness, should we be so unfortunate as to suffer another pandemic. He has my assurance, and I am once again grateful to him for securing this debate.