covid:aid Long Covid and Universal Credit report reveals struggles and new fears: ‘I'm worried how I'm going to survive this winter’

The new report from covid:aid, presented to MPs at the All Party Parliamentary Group [APPG] on Universal Credit, describes people with Long Covid living without electricity and needing to use food banks, with widespread concern expressed over planned removal of the £20 uplift: “I'm worried how I'm going to survive in winter with higher electricity bills and reduced Universal Credit”.

covid:aid was asked to appear alongside the Joseph Rowntree Foundation, Citizens Advice, the Trussell Trust, and Women’s Support Network at the APPG on Tuesday September 7, and to speak on the relationship between Long Covid and Universal Credit. The meeting was chaired by ​​Debbie Abrahams MP.

For their report the charity surveyed 25 people with Long Covid. A majority of 56% began claiming Universal Credit after contracting Covid-19, while 20% were already on Universal Credit.

covid:aid Chief Executive Michael MacLennan said: “From our survey it is clear that the Universal Credit system needs to reflect the fluctuating and unpredictable nature of Long Covid, and the ability of those experiencing recurring symptoms to go through processes which can be emotionally and physically exhausting – therefore exacerbating their illness.

“Those we spoke to were unanimously concerned about the planned removal of the £20 uplift – combined with rising electricity prices and existing debt some with Long Covid don’t know how they’re going to survive this winter.”

[You can find a series of quotes from respondents below]

Key findings were:

  • The experience of living with Long Covid and claiming Universal Credit can be challenging – respondents had had to dip into savings and in some cases could not afford to eat

  • For some the £20 uplift made a substantial difference: “Without it the choices are better food or heating”

  • 100% of respondents were concerned about the planned removal of the £20 uplift

    • Respondents said that they were already struggling with bills, and did not know how they would be able to adjust to the reduction in income 

    • One person said: “I know it's only £20 but that's a food shop for some people.”

    • And as another put it: “I am already eating from a foodbank and can’t afford to pay my bills: it is not possible for me to make other cuts.”

  • Experiences with work coaches around issues such as work search requirements and risk of sanctions was split between positive and negative experiences – though responses indicated work coaches often displayed a lack of awareness around Long Covid

    • One respondent said that they were made to “attend a meeting at the top of two flights of stairs”, something which could leave them exhausted and potentially trigger a relapse

  • Some respondents had been threatened with sanctions due to automated processes which did not accommodate the shifting nature of Long Covid, where debilitating relapses can occur unpredictability after periods of wellness

  • Due to cognitive difficulties – ’brain fog’ is a common symptom of Long Covid’ – filling out forms and speaking at meetings can be exhausting and energy-sapping experiences which risk triggering relapses

Recommendations that covid:aid Chief Executive Michael MacLennan outlined included:

  • “Work Coaches and those involved in administering Universal Credit should be provided with extra information/training to ensure awareness of Long Covid – and to better understand how those living with Long Covid should be treated”

  • “Automated processes (such as for scheduling meetings and imposing sanctions) should be adjusted to accommodate for those with Long Covid whose symptoms are unpredictable, with relapses meaning the ability to attend meetings can change at short notice”

  • “The process for claiming Universal Credit – including form-filling – needs to be reflective of the cognitive difficulties (such as brain fog) that those living with Long Covid can commonly experience”

  • “Given that many of those who began claiming Universal Credit after developing Long Covid are reliant on the £20 uplift to pay for bills and food, this should be retained unless and until an alternate process can be substituted which will prevent these claimants sinking into increased debt – something likely to increase stress which can in turn exacerbate symptoms and lead to a worsening spiral. It is in nobody’s interest for those with Long Covid to become more ill as a result of their experience with Universal Credit”

covid:aid is the UK’s national charity dedicated to supporting all those significantly affected by Covid-19, building a community and providing a voice. Since launching in May 2021 we have been awarded a National Lottery grant to build a Long Covid toolkit to help charities, healthcare providers, and other organisations build and develop services, working with Long Covid groups and conducting research interviews. 

Michael MacLennan, founder and Chief Executive at covid:aid, said: “It is in nobody’s interest for those with Long Covid to become more ill as a result of their experience with Universal Credit. 

“With over a million in the UK suffering long-term symptoms as a result of Covid-19, and with new cases of Long Covid every day, we risk facing an ever-worsening employment and healthcare crisis unless we act decisively to support those with Long Covid.”

He added: “Long Covid is defined by unpredictability. Those living with Long Covid don’t know what the future holds and often find it impossible to plan ahead, since they don’t know whether or when they may have a relapse of previous symptoms or develop new ones.

“Therefore the prospect of needing to make mandatory meetings with a threat of sanction while ill, or needing to fill out forms to make a claim as soon as possible despite suffering ‘brain fog’ (severe cognitive issues) – while struggling financially – can itself be incredibly stressful and potentially trigger relapses. Changes to the Universal Credit system to be reflective of those with Long Covid would not just show care and consideration, but help those claiming the benefit on the road to recovery.”

Key quotes

On experience of Universal Credit

  • "It’s not enough to meet basic needs"

  • "I can't afford to eat once bills paid."

  • "I was on a good salary before getting ill – I have struggled"

  • "[I have experienced] sudden financial deprivation"

  • "It's not enough to survive on, even when too sick to spend money socially. I am losing savings every month"

  • "The assessments were incredibly difficult to complete due to my condition, but were relatively easier being in my home, on the phone"

Impact of removing the £20 uplift

  • "As a full-time carer the extra £20 has been a big improvement. Without it the choices are better food or heating."

  • "I'm worried how I'm going to survive in winter with higher electricity bills and reduced Universal Credit."

  • “I know it's only £20 but that's a food shop for some people"

  • "I am already eating from a foodbank and can’t afford to pay my bills – it is not possible for me to make other cuts."

  • "It feels like the people who have been left with long covid are being penalised for still being ill"

Experiences with work coaches and claiming Universal Credit

  • “It was just a phone call as a box ticking exercise, which caused me great anxiety"

  • "[There is a] complete disregard for customers proven by mandatory face-to-face interviews: failing to attend can affect payment"

  • "[The work coach displayed] no understanding whatsoever. Made me attend a meeting at the top of two flights of stairs."

  • "The work coach that I have has been very understanding. The more I have told him about what I experience with regards to long covid the more he understands."

  • "Despite the understanding of the person I spoke to, there was nothing at all on the system that could be done to stop sanctions if I missed the next appointment”

  • "It takes too long to be approved. I have never applied for benefits before and it was quite daunting. I don't know if I will be approved, but the money would be going on my health, to help aid me get back to work"

Other comments

  • "It's a form of disability, I was working 48 hours, then it got reduced to 24 hours, and now I can't work. I have worked since I was 14 and I am now incapable"

  • "The constant logging in and checking for documents or uploading when you have an energy impairment is very difficult."

  • "It doesn't feel comfortable claiming Universal Credit when sick with Long Covid"

  • "I have worked since I was 15. I am now physically struggling to work directly due to long covid which means I am now struggling to support my family. I feel like I have to choose between being able to be me, be a mum, and have a life or work so we don't get into even more debt."

  • "I have completed an illness questionnaire with regard to Universal Credit. The areas that the questionnaire wants to know about does not fit neatly with the symptoms of Long Covid. There is a chance I believe that I will not be accepted as having an illness which precludes me from work due to Long Covid and the questionnaire not being compatible."

  • "The delayed crash that can occur 24-72 hours with major debilitating symptoms returning following any activity physical or mental makes it very difficult for someone to understand, as seemingly you appear relatively ok at the time. Two days later you are bedridden. Covid has massively affected both my physical and mental capacity. I still can't speak to people on the phone unless absolutely necessary as it has such massive ramifications... The forms last year, despite trying to do a little when I could over a period of a month still broke me. They absolutely caused a relapse that I think lasted around three weeks, and that was six months on.”

Covid Aid is reliant on YOUR donations to provide support to those hit by Long Covid, grief and bereavement, and other Covid-related issues