Workers' experience of Long Covid

Non-social security financial support

We asked respondents if they received any financial support excluding Department for Work and Pensions’ (DWP) support.

The most common form of financial support reported by respondents was their savings (50 per cent), of which 38 per cent had savings of less than £16,000 followed by four in ten respondents (41 per cent) who relied on a significant others’ funds (e.g., partner, parents, friends).

It is worrying that people with Long Covid are having to rely on savings to financially support themselves and even more concerningly the percentage taking out private loans or using a debt service e.g., pay day loans, loan sharks (6 per cent) with a further (4 per cent) having considered applying for a private loan or debt service. Additionally, one in sixteen (6 per cent) told us that they were using food banks.

Some respondents reported receiving financial support on leaving their job which included:  

• money received at the end of employment (5 per cent) 
• accrued payments for annual leave (5 per cent) 
• a redundancy payment (3 per cent). 

The comments provided by respondents revealed that some people felt they were just about surviving on their current level of income:  

“So far I am surviving on half pay as I now get PIP. My money runs out in December. Then I will have no income.” Woman, 36–45, education.

While other respondents talked about having to find ways to both save expenditure and bring income into the household, worryingly sometimes through increased debt and risky forms of financial support.

“Maxed out credit cards, overdraft, money from friends, selling possessions, food voucher from council, not buying food, limiting energy use.” Woman, 56–65, other sector.

“Moved to cheaper housing / region to cope with lower income - now hours away from workplace.” Woman, 46-55, education.

“Renewed my mortgage to pay debt off.” Woman, 46–55, health and social care.

“Overdraft and credit card.” Woman, 65+, other sector.

The selling of personal possessions reported by respondents also included items such as “jewellery”, “cars”, and a “motorbike”. 

Concerns and uncertainty about how any future income could be secured was evident especially when employment related sick pay was close to ending: 

“Currently receiving full pay on NHS sick leave but will lose my job if unable to return in January so will likely have to sell my house.” Woman, 46–55, health and social care.

“None so far but currently planning to downsize our house to manage financially.” Woman, 36–45, Charity/third sector.

Other forms of financial support that were shared which included Statutory Sick Pay, special leave, child benefit, funds by professional bodies, charitable funding, funds provided by their union and taking early pension which could lead to financial uncertainty in the future.  

Department for Work and Pensions support

In addition to the financial support reported above, we asked respondents whether they currently received any support from the Department for Work and Pensions (DWP).  

Most of the respondents (78 per cent) reported they were not in receipt of state support and (19 per cent) reported they were. Just over a third of respondents who stated they were in receipt of benefits (38 per cent) stated they received employment support allowance (ESA)83  and three in ten received Universal Credit (30 per cent). Almost six in ten of these respondents (58 per cent) were in receipt of Personal Independence Payment (PIP).

Other forms of income reported by respondents included: the state pension, war pension, tax credits, Disability Living Allowance, child benefit (this respondent did not claim it previously) and child tax credits.  

The comments on people’s experiences about applying for DWP support showed two key themes. Most of these responses detailed negative experiences of applying for social security with only ten of 334 responses being positive.   

1. Challenges with the DWP processes
2. Worsening of health and wellbeing. 

1. Challenges with the DWP processes

There were a number of barriers in this section including uncertainty on eligibility for certain support and the difficulty with the application process. Many respondents who had applied for one or more benefits reported the DWP’s claims process to be “very lengthy”, “confusing”, “complicated”, and “very hard work”.   Consequently, it is perhaps unsurprising that common ways in which these respondents described their experiences of the DWP as a “nightmare”, “horrendous”, “horrible” and “appalling” and for one respondent to conclude it was “unfit for purpose”. 

Respondents talked about how hard it was to complete the required paperwork for a claim especially when they experienced cognitive dysfunction and or fatigue.  As these two respondents put it:  

“Difficult and confusing form and process. Especially for someone with cognitive and fatigue issues. Took me two weeks to fill the form. If I hadn't got help from benefits and work website I wouldn't have got the benefit.” Woman, 46–55, other sector.

“PIP and ESA questionnaire drained my energy and took me a long time…” Woman, 36–45, education.

“Extremely difficult when you have cognitive issues. I have currently given up contesting as I'm in the wrong PIP group.” Woman, 46–55, education.

Respondents reported that their time scales for completing the required paperwork ranged from two weeks to two months. It was common for respondents to seek support for such tasks too. For example, from their partner, friends, family members and or third sector assistance: “I had help from Citizens Advice completing the forms.” Sometimes the need to seek support led to delays in submitting a claim. In addition, respondents referred to the length of the process including any appeals.

Challenges with the process also applied to appeals. Some respondents told us how they had to battle and endure lengthy mandatory reconsiderations or appeals which could extend a time scale of up to 16 months to be awarded a benefit:

“First application 6 months in resulted in not eligible, went through reconsideration but still not eligible. Reapplied 16 months later and was awarded pip all very stressful.” Woman, 56–65, health and social care.

However, some told us that they felt unable to appeal given how difficult the process is and the effort required.

“I found it a degrading experience. The report was farcical, and I decided not to appeal to get mobility benefit as it would take too much energy.” Woman, 36–45, health and social care.

2. Worsening of health and wellbeing 

Respondents talked about numerous negative health and wellbeing impacts that they associated with making a DWP claim. Overall, the process was commonly reported to be “very very stressful” by many of the respondents.

In addition to stress, there were many other significant negative health related impacts reported by most of the respondents’ both physical and mental which they attributed to undertaking the application process. For example, many respondents talked about the worsening and exacerbation of their ill-health and Long Covid symptoms, with some experiencing a significant ‘’crash” that lasted for a prolonged period as well post exertional symptom exacerbation after making a claim.  

“All of this process is incredibly stressful and exhausting and has a detrimental effect on long covered symptoms especially when only advice from GP is to rest.” Woman, 36–45, charity/third sector

Regardless of whether financial support was provided or not, respondents often described their experiences of claiming as “demeaning”, “dehumanising”, “degrading”, humiliating and talked about being left with a range of emotions and traumatic type feelings. Some respondents explained they were made to “feel like you're lying” “made to feel like a cheat for trying to claim PIP” or “guilt”. 

“I was made to feel like a criminal rather than a ill person holding on by their fingernails they in the process have worsened my condition and I have not yet over a year later regained the already tiny baseline that I lost as a result of this.” Woman, 36–45, other sector.

Very worryingly, two respondents reported suicidal ideation.

“What a nightmare system almost ended my life trying to access this for disability is impossible.” Woman, 36–45, education.

These responses highlight the degree of variability of experiences people may have when claiming social security. However, the significant negative health impacts often over a prolonged period of time is a significant concern that needs to be addressed.

This also demonstrates the need for Covid-19 to be recognised as an occupational disease and therefore for people to be able to apply for IIDB, to ease the process for receiving financial support and for people with Long Covid to be given clear and accurate information on what they should do.

• 83 30 per cent stated they were in the support group and seven per cent in the work-related group.