Harrowing stories from patients and NHS workers who experienced the Covid-19 pandemic have been published by the inquiry examining its impact.
More than 32,000 people have contributed to the Every Story Matters record, which is designed to assist UK Covid-19 Inquiry chairwoman Baroness Heather Hallett in reaching conclusions and making recommendations on how to handle future pandemics.
Monday marks the publication of the document, which is the result of the largest public engagement exercise ever undertaken by a UK public inquiry.
Every Story Matters is still open for submissions across a variety of topics.
The record covers the experiences of health professionals and patients across primary care and hospitals, as well as emergency and urgent care, end-of-life care, maternity, shielding, and long Covid.
It covers how some patients found accessing healthcare during the pandemic very difficult and stressful, how families faced significant challenges in supporting their loved ones at the end of life, and how health workers felt planning for the pandemic was poor and the speed of the response too slow.
The document also includes detail from 604 in-depth interviews carried out with those who were involved with healthcare.
UK Covid-19 Inquiry secretary Ben Connah said: “In this, our first published record, we draw together thousands of experiences that demonstrate the impact of the pandemic on patients, their loved ones, healthcare systems and settings, and the people working within them.
“It is a tough read in places – but it really brings to life how people experienced our healthcare systems during those pandemic years…
“I would encourage everyone with a story to share it with us. To find our more visit everystorymatters.co.uk.”
Some contributors to the record said senior medics made end-of-life decisions for patients, partly to spare their junior colleagues having to do it.
One said of young doctors: “They were surrounded by people dying, more than one patient in a day, and often uncomfortable and looking distressed when they died.
“If you don’t have that confidence, that certainty and it’s all a bit new to you and you’re surrounded by chaos and suffering and death then I think it’s much more stressful.”
End-of-life care also frequently involved hospital staff being with dying patients when their loved ones could not.
“Nobody wants anybody to die on their own, and as nurses you try really hard to make sure that that doesn’t happen,” one hospital nurse said.
“If family members can’t be there, you’re there. You just are. You just do it.”
One healthcare assistant said they held a dying patient’s hands as their family watched through a window.
Another worker said: “We’re trying to get quality for families, and so, even if, you know, I can wake a patient up for two hours so they can have a chance to have a coherent conversation with their loved ones, that’s a win, because that’s precious.
“And, you know, if they’re going to die, if we can make that passing as dignified and as not horrible as it can be, knowing it’s going to be horrible, and if we can take just some of the edges off it, it’s still going to be bad.”
A hospital doctor spoke of having to tell a patient with a bowel perforation over the phone that they were going to die because they could not be offered an operation.
This was because the operation was moderately high risk and was assessed as riskier due to Covid-19.
“At the time the evidence was suggesting that doing operations on people wasn’t particularly safe, particularly if they had Covid,” they said.
“It meant that people who in any other time would be offered an operation, an emergency operation to fix something catastrophically wrong with them such as bowel perforation, which normally we would go ahead with without thinking twice about, we offered far fewer of those operations.
“And, in doing so, knew that people were going to die as a result, and that was obviously very hard.”
The document also showed how some medics believed the Nightingale hospitals set up to treat patients was a misuse of resources.
One said: “We set up huge Nightingale hospitals with ICU (intensive care) capabilities which were under-used, likely due to lack of highly trained staff or ICU need.
“A bit of lateral thinking could have meant these being used for less intensive care such as care of the elderly, rehab beds or Covid+ intermediate care beds, freeing up hospital beds for patients that needed them.”
Some NHS staff also told the inquiry how stressful it was to be redeployed from their usual role.
One physiotherapist said: “When it came to being redeployed, we were actually redeployed as ICU nurses – this had not been communicated to us prior to starting our shifts – and all the jobs that that entails. We had no training – as there were too many patients – and were asked to do 12.5-hour shifts.
“We undertook all of this willingly as we knew that this was a challenging time.”
