Long Covid patients initially ‘not believed’ with ‘no place to go’ for support, inquiry told
People with long Covid were “not believed” and had “no place to go” for support, an umbrella body for health and social care has told an inquiry.
Sara Redmond, chief officer for development at the Health and Social Care Alliance Scotland, told the Scottish Covid-19 Inquiry her organisation, which has more than 3,300 members, carried out research on the impact of the pandemic over two years, including taking evidence from people with long Covid.
She told the inquiry: “People were very much shocked by the experience they had of being diagnosed with a long-term condition and the challenges that they encountered with having that experience believed by the healthcare system.”
She said people with the condition had to “battle” to receive a diagnosis because their symptoms were not believed and the disease had had a “significant impact” on their lives, with many forced to quit work and rely on friends and family for support.
Ms Redmond said people had to spend “a huge amount of time” researching support and treatment options for the condition, some had looked at paying for private care to alleviate their symptoms and others had reported difficulties accessing social care as well as state benefits.
She said: “They spoke at length about difficulties they had navigating the social security system and none that were involved in the research had any experience of accessing social care support.”
Stuart Gale KC, co-lead counsel to the inquiry, read a statement from a person with long Covid who said those with the condition feel like they are “invisible” to the wider population.
Asked to comment, Ms Redmond said: “I think one of the things that struck me from listening to people’s experiences of living with long Covid was that they were overwhelmed at the fact that their experiences initially were not believed.
“They received feedback that they couldn’t still be living with symptoms, they had Covid months ago, how could they still be describing these symptoms? There was no place to go to get support, to get information.
“They were having to do all this research by themselves, and that is why we have seen the numbers of people who are connecting with peer support groups, online groups etc so they can share the experiences of the research and the support that they have found.”
On early coverage of the condition in the media, Ms Redmond said: “There was a perception – not by everyone in the public narrative – but a feeling as though this was a made-up condition.”
Mr Gale then raised former prime minister Boris Johnson’s reported remark that he thought the condition was “bollocks”, and put it to Ms Redmond that such comments “probably didn’t help”. She replied: “No, no, absolutely.”
Elsewhere in her evidence to the inquiry, Ms Redmond drew attention to the effect blanket decisions on lockdowns with restrictions on movement and contact with people from other households had on unpaid carers.
She said the sudden withdrawal of support services for those with disabilities and long-term conditions during the worst of the pandemic meant some people had to step in and provide near 24-hour care for relatives.
“In one respect unpaid carers felt very much excluded from decisions that were taken about people’s care and support during that period of time,” she said.
“They very much described experiences where their involvement was just sidelined and yet, at the other side, they also were in a position where they were left very often to provide significant amounts of additional care to family members because of the disruption to other support and care packages.
“Many described that they were having to provide almost around-the-clock care and support to loved ones, and at the same time people who were caring for disabled children were also having to provide education and schooling support.
“Despite the significant role they play, they were not able to accompany loved ones to healthcare appointments and to be there when information was being provided.
“We also heard experiences from people who were an important part of a person’s support when living in a care home environment and all of a sudden being excluded from being able to be part of that care team during the period.”
The inquiry, before Lord Brailsford, continues.
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