INITIAL STATEMENT
Long Covid Support are still fully digesting the proposals in the Green Paper and, having assessed them fully, will contribute to the consultation on the Green Paper. Given the failings of the previous consultation, this needs to be a considered and accessible process, with sufficient time for a response. We would like to trust our submission to be taken into account. Below is our initial statement.
Long Covid Support is disappointed that in announcing changes to social security for disabled people in its Pathways to Work: Reforming Benefits and Support to Get Britain Working Green Paper, the Government has failed to acknowledge the lived reality of the Long Covid community, who we know through our support groups and advisory work are already finding it difficult to access benefits. Indeed, the effect the ongoing Covid pandemic is having on the welfare system has not been acknowledged, despite thousands of new infections and around 100 deaths weekly where Covid is cited on the death certificate.
Estimates of the prevalence of Long Covid vary,but the scale of those affected is undeniably vast. As of March 2024, the Office for National Statistics (ONS) reported that approximately two million people in England and Scotland are living with Long Covid. Of these, 1.5 million experience an adverse impact on their daily activities, with 381,000 severely limited. The condition has persisted for a significant duration in many cases, with over a third of individuals affected for more than two years and many from 2020 now suffering for over four years. Long Covid continues to pose an ongoing risk, with 178,000 new cases emerging during the 16-week survey period in 2023/24.
The 2024 GP Patient Survey for NHS England estimated a Long COVID prevalence of 4.6% among adults in England. This corresponds to approximately 2.5 million people aged 16 and over in England. Additionally, 9.4% of survey respondents were uncertain whether they have Long Covid, suggesting that the true number of affected individuals may be even higher.
It is a mistake for any government to ignore the profound, mass disabling impact of Long Covid on the population. The facts speak for themselves. There is a direct correlation between the start of the pandemic in 2020 and the rise in numbers of people unable to work full time. Covid is indiscriminate, it can affect anyone, regardless of age or prior health and fitness. We also know it is exacerbating existing conditions within the already disabled population and worsening health inequality. It is hard to predict how many people may become affected by Long Covid if Covid transmission remains uncontrolled. However, as more people are becoming disabled or have their existing disability exacerbated as a result of Long Covid, we would like to remind the Government of its obligations to disabled people under the Equality Act 2010 and its public sector equality duty.
The government is implementing these changes while not taking any steps to reduce Covid transmissions, including in the workplaces which are under its oversight such as healthcare and education, per the WHO guidance on airborne Covid transmission, and before it has given itself time to adequately fix the Health and Social Care systems. Vital Long Covid specialist centres are closing or discharging patients untreated. Most people with Long Covid are not entitled to NHS Covid vaccinations, despite well-evidenced increased risk from reinfections, or they cannot access private vaccination in their region, or afford to pay privately. People with Long Covid are also not entitled to antivirals if reinfected despite having a condition that results in immune dysregulation. No effort is made by the Government to protect their health, and very little is done in practice to improve it, let alone try to return them to working health. These issues alone are making it harder for our community to recover and achieve a better quality of life.
There are some positive proposals, such as removing the need for reassessment from permanent disability and not requiring starting a job to be reported as a change of circumstances triggering a WCA reassessment, enabling people to try work, without the risk of losing their benefits if it does not work out. These developments are long overdue. However, the latter is where the efforts to get more people into work largely ends.
It is concerning that while the ostensible aim is to stop disabled people leaving work and to enable more to stay in work, very few concrete proposals for doing this are in place, and the focus is instead on cutting social security or making it harder for disabled people to access. From the Department for Work and Pensions' own evidence, removing disability benefits gets very few people into work and fails to keep them there. Cuts and sanctions are a recipe for pushing people into poverty and further away from work.
There is little focus on preventing or treating disabling illnesses - there is nothing on infectious disease prevention or treatment of disabling post-viral conditions in the Get Britain Working White Paper that accompanies these proposed welfare reforms. There is no focus on recruitment of disabled people or strengthening their rights to reasonable adjustments under the Equality Act, often ignored by employers. Reasonable adjustments, the key of which for people with fluctuating conditions are flexibility and remote working, should be at the forefront of reforms, not an afterthought, behind the need for budget cuts.
According to the food bank charity Trussell Trust, the majority of food bank users are disabled people and those with a disabled member in their household. The proposed reforms stand to only increase this number. There fails to be recognition that most people relying on social security are in work.
We are concerned about the hostile rhetoric around this legislation, including suggestions that disability benefits are an incentive not to work, whereas most people with Long Covid are or were in work, and the loss of jobs and careers has been devastating to them. For many, such as healthcare and education workers, who make up the majority of people with Long Covid, due to their increased Covid exposure at work, their job was not just a job but a calling - to suggest that they would leave their careers for a "life on benefits" is insulting and harmful to mental health. Likewise the suggestion that the disability benefits bill is "unsustainable" should be seen in the context of fewer than 1 in 4 disabled people claiming PIP, whereas 3 in 4 do not. If supporting the UK's increasingly disabled population is unsustainable, then it is even less sustainable to allow Covid to cause more disability and not to invest in researching or treating its long-term complications.
Of extreme concern is that the new PIP assessment, which will replace the WCA, will only result in a full award if people score 4 points on a single activity. Long Covid is a multisystem, typically energy-limiting, fluctuating condition - such fluctuating conditions are covered by the Equality Act 2010. An activity possible one day may not be repeatable. As a result there is a high risk that people will not be able to access PIP or will lose support such as help with daily living costs and other enabling benefits, not all cash, to which PIP is a gateway.
In addition, we have seen job losses to Long Covid rise, particularly in the NHS, since the Covid sick leave arrangements ended in July 2023. The suggestion that people becoming long-term ill, who are unable to sustain their job, should be forced into job seeking instead of being signed off work to recover, is extremely concerning and stands to cause significant harm. Pushing through at work has caused many people with Long Covid to deteriorate, preventing recovery. Adequate sickness leave, extended phased return to work and reasonable adjustments as a condition of return are key. Much more can be achieved by ensuring employers put reasonable adjustments in place and follow the recommendations made by physicians and Occupational Health professionals, than by making it harder to take time off work or by forcing people to seek work while still ill.
The insistence on face-to-face assessment is a backward step for clinically vulnerable people, including those with Long Covid, putting them at risk of infection. Besides demonstrating mistrust, at the time when the government talks about restoring trust, it is further evidence that the serious health risk posed by Covid fails to be recognised, despite five years of evidence of worse infection outcomes for disabled people.
There are other concerns, such as time limitation on the entitlement to what is currently ESA, for people with limited capability for work, that assumes recovery after a couple of years. As we have seen, from people now entering their fifth or sixth year with Long Covid, this is simply not the reality. For some people with Long Covid, their health is now deteriorating and there is no evidence that their condition will not be permanent. As shown by the recent Long Covid Support and Long Covid Kids survey into Long Covid clinics, the majority of people with Long Covid, which may be as many as 1 in 10 people in England according to the GP survey, report significant disability. The impact of Long Covid on their daily life meets the definition of disability under the Equality Act. The proposed disability welfare reforms, that are designed to limit access to social support, make this a frightening time to become newly disabled.
It is disappointing that the mechanism for returning people to work focuses on cuts to social security for disabled people, rather than on preventative health - such as reducing Covid transmission - or on treating chronic conditions. It is also incomprehensible why the effort to enable people to return to work starts with benefit sanctions rather than with ensuring recruiters hire disabled people and that reasonable adjustments are a right, not an option. For conditions like Long Covid that fluctuate, the key reasonable adjustment that makes work accessible is flexibility to work around fluctuating symptoms, hospital appointments, etc. - yet is rarely granted. And there are simply not enough remote or flexible jobs to make employment possible.
We urge the government to reconsider its focus on cuts to disabled people's social security, to which they are entitled by right, and to focus instead on recruitment, retention and reasonable adjustments and, critically, on preventative health and treatment. UK governments have been repeatedly criticised by the UN for failing to meet obligations to disabled people under the UN Convention on the Rights of Persons with Disability, to which the UK is a signatory. We urge the Labour government to turn this grim record around. The proposed changes to disabled people's welfare were not set out in Labour’s manifesto, on which the party achieved a landslide majority in the House of Commons, enabling it to form a government. We urge the government to rethink these proposals and to fulfil the pledge made in its election manifesto to improve disabled people's equality in the workplace.
Finally, any policies to get more disabled people into work need to be designed with disabled people, not be made about them without them. This is as true of Long Covid as it is of any disability.
We support other disabled people's organisations calling for this crucial change in approach. This is an opportunity for the Labour government to do things differently, to represent all people it was elected to represent - disabled or not. We hope the government makes the most of this opportunity.