She said that while people understood the need for anticipatory care planning, there was alarm over the sudden and improper use of DNRs.
Giving evidence on the fifth day of the inquiry in Edinburgh, Ms Redmond said: “There was one mum who shared an experience where she received this unsolicited request about her child.
“She was told that this form was going to be applied to her son and there would also be no hospital transport in the event that he needed support to save his life.
“It was delivered to her pretty much as a cold call – extremely distressing and traumatising for her – and has really left her really questioning the support that is available for her and her son now and in the future.”
Ms Redmond said that Alliance had also carried out research into members’ experiences of long Covid during 2020 with follow-ups in 2022 which highlighted the challenges sufferers continued to experience in “being believed and understood”.
Discussing the findings – based on a survey of 1000 people across all 32 council areas – Ms Redmond said: “The things that really stood out from that research was that people were very much shocked by the experience they had of being diagnosed with a long-term condition and the challenges they’d had of having that experience believed by the healthcare system.
“They raised concerns about battling to receive a diagnosis, that the range of symptoms they were experiencing not really being accepted as part of the condition.
“They talked about the significant impact that it was having on their daily life – many people having to leave work; having to rely on friends and family for support for the caring responsibilities that they had in life; that they were having to spend a huge amount of time researching support and treatment options; some describing having to look for private support and treatment.
“Some did describe the support they were receiving from the health service as good, and good support from GPs and others, but they typically tended to describe themselves as ‘lucky’.”
Asked by Stuart Gale KC, lead counsel for the inquiry, whether scepticism about the condition “seemed to permeate both the medical profession and the public”, Ms Redmond agreed that it did.
Ms Redmond also told the inquiry that people living with long-term conditions or disabilities, and their carers, felt “overlooked” in the “public narrative” about Covid.
She said: “What we heard was that the way in which it was presented as something which only older people were at risk of also meant that many people living with disabled children, people who were higher risk because they were immunocompromised or for other reasons, their circumstances were overlooked and they weren’t seen as visible in terms of the risk that this presented for them.”
She added that many also felt abandoned in the move towards a “living with Covid” strategy, which has seen mitigations such as masks and testing dropped – including in healthcare.
“They felt that the narrative of ‘don’t worry, most of you are okay’, carry on about your business, really made it so that those who were at higher risk had to be extra careful, extra cautious in the choices that they made, and I would add that that is how people still feel…they are having to navigate those decisions really by themselves without a huge amount of support available.”
Ms Redmond referenced a comment made by one participant at Alliance’s Carers’ Parliament event last year, who said they had been advised by their GP to continue wiping down packaging and mail.
She said the carer told her it feels as though “‘the rest of the world has moved on and we haven’t – it feels like people think Covid 19 never happened. You get your vaccinations and boosters but you’re just left to get on with it’.”
The inquiry, before Lord Brailsford, continues.