Letter from London

In the Covid-stricken UK, it became very clear very quickly that our unserious government had neither the capacity nor the inclination to consider (let alone respond to) the many ways in which the pandemic would exacerbate pre-existing inequalities. Several months into this year of reality upended that remains the case, but among non-government actors work has been under way from the outset to illuminate the consequences of oppressive social structures that leave some people more vulnerable than others during a pandemic.

In the spring, the UK parliament’s Women and Equalities Committee put out a call for evidence about the impact of Covid-19 on people with protected characteristics (www.equality humanrights.com/en/equality-act/protected-characteristics). I am a founding member of an organization called Chronic Illness Inclusion (CII; https://inclusionproject.org.uk), which advocates for the rights of people living with energy-limiting chronic illnesses in the UK. On behalf of CII, my partner and I surveyed over 700 people living with chronic illness about the impact of coronavirus and the government’s policy response. The survey was open to anyone based in the UK living with at least one chronic condition. The evidence brief we submitted (www.centreforwelfarereform.org/library/i-feel-forgotten. html) highlighted the following key findings that we recommended the government take into account when reviewing its response to the pandemic.

• We identified a population at increased risk from Covid-19 due to underlying chronic conditions but who were not specifically included on the government’s list of the clinically vulnerable. These people’s needs were being ignored and their health and well-being was deteriorating.
• Overall well-being and access to food and essential supplies were the areas that respondents reported had been most negatively impacted by the pandemic. Among our respondents, 86% reported that the pandemic had already had a negative impact on their ability to access food and essential supplies. Many of these people were largely housebound and reliant on supermarket deliveries that were suddenly inaccessible due to unclear government guidance and a surge in overall demand. For example, while people with neurological conditions were listed as vulnerable by the government, many diseases were not specifically named in the guidance that shops and services were using to manage access for vulnerable customers. As a woman from Wales, living with multiple conditions, put it: ‘I seem to be in a category where I’m not vulnerable enough to get help with essentials like food shopping, but too vulnerable to catch Covid and survive.'
• The pandemic had already had a major impact on access to general practice (GP) and specialist care for the majority of our respondents. Of the respondents under the regular care of a GP or specialist, 66% reported disruption to care during the pandemic. This has long-term implications for people’s health and will place increased pressure on the National Health Service (NHS) and social care once the current crisis has passed. A woman from the East Midlands, living with asthma, fibrous dysplasia, and hypermobility syndrome, wrote: ‘I think policy-makers have to understand that many people with chronic and rare diseases already feel like we are forgotten, but there are millions of us and this could cause a tsunami of healthcare problems after the pandemic earthquake.'
• Among our respondents, 56% reported that their health had got worse since the pandemic began, with an important number reporting the detrimental impact of increased stress and anxiety.
• Many respondents reported experiences of discrimination and ableism in shops, the NHS, the media and public conversation. People reported feeling unseen, unheard and unvalued. A woman from Northern Ireland told us: ‘I am housebound and one of the forgotten ones. I feel very isolated, frightened, anxious, lonely, hungry, very tired, hopeless. I am hungry due to the fact I need home delivery groceries and it’s a three-week wait. I am nearly down to my last scrap of food from my freezer and I don’t know what I am going to do.'

The survey data shed light on the challenges faced by people living with underlying chronic illnesses during the coronavirus pandemic in the UK. But what is so striking looking back, several months later, is how quickly things became so difficult for so many people. We felt at the time that we were in the thick of things—but it was only the beginning. Each week makes clearer how inequalities pertaining to disability, class, gender, race and sexuality are being exacerbated, and even more so where these categories intersect. For so many people keeping going demands a precarious balancing act even during times we may consider ‘normal’. As this pandemic shakes the ground beneath all our feet, there is little support in place for people at the greatest risk of falling, and few nets—or hands—to catch them if they do.

Articulating these realities is one thing. Responding to them so that we emerge from this catastrophe into a more equitable society is a challenge of a different magnitude. And it demands a political will to first see and then act that the horizon offers little hint of at present.