Key themes

Some important themes that the Long Covid Steering Group (including Calderdale Council, the Long Covid Clinic, the peer support group, and other local services) are looking at following this research include:

Long Covid and minoritised ethnic communities

‘We aren’t aware of it. I work in this community, with professionals, and with organisations, and it’s the first time I’ve heard this [Long Covid] clinic exists. This makes me question, do [professionals] reach out to the ethnically diverse groups? They need to be out in this community, speaking to mosques and getting announcements done. We all suffered from Covid, we all had losses in Covid, we all found Covid difficult, so [support] should be [available] to everyone.’ – British Pakistani interviewee

The one British Pakistani interviewee was not aware of the Long Covid clinic and had not received specialist support for their Long Covid.  

Local Long Covid services are seeing primarily white British people, despite the fact that:

• Minoritised ethnic communities make up 17.3% of Calderdale's population. The four largest minority ethnic groups are Pakistani (8.5%, 17,637 people), Other White (2.4%), Indian (0.9%) and Irish (0.8%). 10.5% of Calderdale’s population are Asian, Asian British or Asian Welsh.[i]

• Nationally, people in minority ethnic groups are more likely to experience both poverty[ii] and health inequalities.[iii]

• Minoritised ethnic populations were disproportionately affected by Covid-19.[iv]

Experiences with healthcare professionals

Several interviewees reported negative experiences with healthcare professionals, including:

• Psychologisation of symptoms (attributing physical symptoms to psychological causes without sufficient investigation) and misdiagnosis – severe Long Covid symptoms being misdiagnosed as mental health issues, not taken seriously, or dismissed as ‘in your head’.

• Lack of knowledge about Long Covid.

• Not being offered any information, signposting or support.

• Not being told about/referred to the Long Covid clinic.

There is a particular issue with GPs not diagnosing Long Covid or referring people to the Long Covid clinic:

‘The doctor said “you sound like you’re doing everything, you're diarying, you're pacing, I don't know what [else] the Long Covid clinic is going to give you” [so he didn’t refer me]. He said the waiting lists are huge and it's more respiratory.’

‘The medics weren’t interested. The GP just said, in terms of Covid, you can take several months to get back to normal. I didn't get referred. I didn't get any advice or anything actually. So, I just accepted it.’ – on a visit to GP after 12 weeks.

These could be very detrimental to the person’s well-being and recovery.

'[People coming to us with Long Covid] haven't seen a GP, they haven't got into primary care, nobody's listened to them, nobody's believed them.’ - Professional

‘The doctor said “how far can you walk?”, and I said, “well, probably half a mile”. He said “that's not so bad.” Maybe for some people, but it's terrible for me. And that felt awful, because there's just no support. There's no validation of what you're actually feeling. It's like a denial of what you're feeling.’

Access to specialist mental health services

A sometimes-severe decline in mental health is common for people with Long Covid. Depression was common among research interviewees, and several people said they had had suicidal thoughts. People can experience overwhelming loss, grief and loss of hope. The experience of trauma is common – including the trauma of not being believed/not receiving support; of both acute and chronic illness; of the pandemic; and for some the re-emergence of past/childhood trauma.

Support with processing this trauma and loss can be vital to people’s recoveries. The Long Covid clinic psychologist was highly effective in supporting people with their mental health, and supporting their recoveries. However, at the time of publication, the post has been vacant for many months, with short-term funding leading to recruitment difficulties. Generic mental health support such as CBT is not always sufficient or appropriate for people with Long Covid. Lack of specialist psychological support is a significant gap in the local pathway.

‘I thought I was stuck in [this] dark pit […] I honestly thought I don’t want to live anymore […] [Long Covid] was the worst thing that ever happened to me.’

‘I did have suicidal thoughts [...] I had such bad anxiety, I honestly thought I was going to die, like literally. Literally laid in bed, I thought this is it, I'm done, I'm not going to get better. And if this is my life now, I don't want to be here.’