Chronic Illness Inclusion Project blog post: “I feel forgotten”, by Anna Ruddock, June 1 2020

A submission to the Women and Equalities Committee about the impact of coronavirus on people with chronic illness.

In April, the Women and Equalities Committee put out a call for evidence about the impact of coronavirus (covid-19) on people with protected characteristics. We submitted evidence based on the findings from a survey we conducted to ask about the impact of coronavirus and associated policies on people with chronic illness. The survey was open to anyone based in the UK living with at least one chronic condition.

The evidence brief we submitted was based on 776 responses [including people in Wales] – thank you to everyone who took part. This blog highlights the key findings that we have recommended the government takes into account when reviewing its response to the coronavirus pandemic.

• There is a population who are at increased risk from coronavirus due to underlying chronic conditions but who are not included on the government’s highest risk list. These people’s needs are being ignored and their health and wellbeing is deteriorating.
• Overall wellbeing and access to food and essential supplies were the areas that respondents reported had been most negatively impacted by the pandemic. 86% of respondents reported that the pandemic has had a negative impact on their ability to access food and essential supplies. Many of these people are largely housebound and rely on supermarket deliveries. They are now denied access because of overwhelming demand and unclear guidance. For example, although ME is a neurological condition, it is not specifically named in the guidance that shops and services are using to respond to the needs of vulnerable customers.
• Further, 28% of respondents reported that they did not know if their chronic conditions placed them at greater risk. The lack of clear and consistent guidance about underlying conditions is preventing people with chronic conditions accessing essentials for survival.
• The pandemic has already had a significant impact on access to 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 NHS and social care once the current crisis has passed.
• 56% of respondents reported that their health had got worse since the pandemic began, with a significant 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.

The survey yielded a rich data that sheds crucial light on the challenges faced by people living with chronic illness during the coronavirus pandemic. There are two key limitations of the exercise, however.

First, the respondents were from an overwhelmingly white ethnic background. This constrains our ability to conduct the intersectional analysis that is critical to more deeply understanding the unequal impact of the pandemic on black and ethnic minority people living with underlying health conditions.

Second, we disseminated the survey primarily through the CIIP mailing list and Twitter and it was only open for a short period. The responses therefore represent people with existing access to those networks, and who were well enough to complete the survey in the time available.

For these reasons, we cannot generalise these results to people with chronic illness who are the most socioeconomically marginalised. And we can be confident that this report reveals only the tip of the iceberg when it comes to the difficulties faced by disabled people during the coronavirus pandemic.

Read the full response here.

The Chronic Illness Inclusion Project aims to bridge the chronic illness community and the disability rights movement, and bring together people with energy limiting chronic illnesses (ELCI) including ME, and increase awareness of disability rights.