Identifying support needs for rheumatology patients following COVID-19 shielding: Lay Summary

09 January 2023

During the COVID-19 pandemic four million people in the UK were told they were ‘clinically extremely vulnerable’ and that they should ‘shield’ because they had a high risk of becoming very unwell from COVID-19. This included some rheumatology patients, with conditions such as rheumatoid arthritis, psoriatic arthritis, lupus, and others. Clinically extremely vulnerable people were told they should not leave their homes and should keep their distance from others inside their home, including eating, washing, and sleeping on their own.

We wanted to find out what happened after rheumatology patients were told they could stop shielding and whether they needed support to help them return to normal life. We wanted to see what we could learn from patients’ experiences and whether we could do things better in the future, for example if rheumatology patients are advised to shield again or if there are other reasons that patients need to stay at home for long periods of time.

During May to July 2022 we (two UWE researchers who both have personal experience of shielding) spoke to 15 rheumatology patients from the Bristol and Bath area who had shielded.

The patients that we talked to were between 33 and 72 years old and included 3 men and 12 women with a mix of rheumatic conditions including rheumatoid arthritis, psoriatic arthritis, lupus, Sjogren’s and ANCA Vasculitis. We talked to patients by telephone or video call for between half an hour to just over an hour. The project was funded by the Bath Institute for Rhematic Diseases (BIRD).

We asked questions about how patients had shielded, what had made shielding easier or more difficult and what the experience of shielding had been like.

We recorded the conversations, and these were then typed up and analysed. We found three main themes and have used patients’ own words to help explain the main points of our conversations.

Theme 1: sadness at feeling different and being left behind

Patients talked about feeling helpless and worried about what would happen to them if they caught COVID-19. They said they felt different from people who were not clinically

extremely vulnerable and sad at not being able to get back to life as normal. Some had still not returned to pre-pandemic activities, including swimming, going to the gym, and attending church.

‘The impact for me, has been a real sense of loss…and I think it’s ongoing, living with loss. I feel my life has changed, and its definite sadness that comes with that because things just do feel harder’ – (Female, age 59)

Theme 2: upset about people’s lack of understanding and support

Patients talked about the effect on their relationships, including family, friends and employers and said they often wished they had been shown more understanding. In terms of healthcare, some patients said they felt supported by their rheumatology teams, while some said they felt abandoned and that they had been left to manage their health on their own.

‘I feel a little bit abandoned by my team at [hospital]… they must’ve been overloaded but I have felt a bit abandoned.’ – (Female, age 72)

Theme 3: the difficulty of getting back to normal after shielding

Most patients experienced a negative effect on their physical health following shielding (for example, weight gain and loss of strength) as well as on their mental health (for example, anxiety and loss of confidence) and talked about how they would have valued support from rheumatology services, including advice on exercise, diet, assessing health risks, coping skills, and mental health. Several patients mentioned the benefits of talking to others in a similar situation and some had joined shielding groups (for example, on Facebook). Some talked about how they had found benefits to online treatments, such as physiotherapy.

‘It’s a psychological thing, it’s the mental impact, that’s what’s gone, I mean my sense of confidence’ – (Male, age 64)

We found that shielding has led to some patients feeling ‘forgotten’ and that they found it difficult to talk to other people about their experiences and the challenges they faced. Many are still dealing with lasting physical and mental effects both from the experience of shielding and as a consequence of delays to their healthcare and treatment. By raising awareness of our findings about the needs of rheumatology patients, for example, through written summaries and reports, social media, and a journal article, we hope to enable patients to receive the support they need and find their ‘new normal’.

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