Patients both young and old ‘sacrificed to save the NHS’
We must not forget the care staff who are working outside of coronavirus wards, writes Tom Morgan
After another shift tending to the dying, Marie Curie nurse Kasia Patynowska scrubs down and stands in line outside her local supermarket just like everyone else. “I wouldn’t even use my Marie Curie ID in the shops,” she says, “because everything is really about NHS, NHS, thank you NHS.”
The 36-year-old volunteered to return to palliative care from her desk job and is now supporting dementia sufferers infected with Covid-19 in nursing homes in Belfast. She says: “There are so many others that are dealing with this, not just Marie Curie, but other charities, bus drivers, delivery drivers, dentists, all these people, but we only see the NHS.”
For the social care sector, and charities now buckling under £4billion deficits across the UK, there remains a sense the Government’s “protect the NHS” obsession needs to start spreading the love.
“We have been talking a lot this week about the greatest generation – it being VE Day on Friday – there is a real risk, I think, that the greatest generation becomes the forgotten generation,” says Matthew Reed, Marie Curie’s chief executive. “It’s absolutely right that the Government and nation has been focused on getting the healthcare right, but what has become very obvious is that the same degree of attention is needed to get social care right. For people who need care now, the need is obviously very urgent.”
The frontier in the war on the invisible enemy has shifted. As hospital deaths peaked last month, there was still four times more space than normal in hospitals, with about 40 per cent of acute beds unoccupied.
Yet as nine, still largely unused, NHS Nightingales were being built, policies designed to prevent hospitals from being overwhelmed pushed a greater burden on to those who look after the estimated 400,000 elderly or infirm who live in care homes.
The care sector cites problems wherever you look. Marie Curie would tell MPs of “confusion in both central and local Government about who should be supplying PPE to non-NHS front-line services”. The charity – which supports about one in 10 of our terminally ill – has since been forced to deprive some patients of visits.
Nursing homes have had great difficulty testing staff as well as patients. Edgemont View in Bristol is one of hundreds to have only been able to test a handful of patients despite becoming overwhelmed.
Care England, meanwhile, told The Sunday Telegraph that many of its members were on the brink of financial collapse. Martin Green, the representative body’s chief executive, disputes claims that two thirds of £3.2billion in local Government support would be heading their way.
And it is not just the vulnerable elderly who are slipping through the gaps. More than 2,000 cancer cases are going undiagnosed every week, according to Cancer Research UK, and hundreds have had transplant operations postponed.
“A great job has been done to support the NHS, but what we really want to do is support people rather than institutions,” Mr Reed says.
“Support the NHS was code for ‘support people who need care in the NHS’. Equally true is that when people leave hospital they need to go elsewhere – home or a care home.”
Prof Stephen Powis, medical director for NHS England, also recognised on Friday that “it is really important that we do get on top of outbreaks in care homes”. However, he added: “It’s also important to note that it is a relatively small number of discharges from hospitals that go directly into care homes, somewhere in the region of around one in 20 are going into care homes for the first time. We have also done some preliminary work on whether there is any correlation between areas of outbreaks and discharges, and we can’t see a correlation. It is right, though, that we put as much support as we possibly can do into care homes.”
Mr Reed refutes the suggestion that the NHS has been “over-protected” at the expense of other services. “It’s just that we needed the same attention and same focus in central care, because it’s the same human beings travelling from hospitals to care homes or their own private homes,” he says.
“And it’s the gap between those two where people are dying. Covid-19 is shining a brutal searchlight on this problem. When the NHS and the country moved to create the capacity it required, it demonstrated that it can move with the same intensity. It shows that we can do it when there is the political intent. We now need that same attention given to care homes.”
Some of those on the front line are facing the unthinkable in isolation.
In January, Lin Dalton, 63, a mother of two from the West Midlands, gave up on chemotherapy after her rectal cancer spread. She may not live to see the end of lockdown. Nurses speak to her via video call. But she has no time for those who complain.
“I’m not going to pretend I don’t have dark moments but I try not to dwell,” she says. “You can’t just say pull yourself together, but I do try to focus on what you can do, rather than on what you can’t. I’ve ordered some fabric so I can make some masks for my family. I’ve got a little garden that I potter around in.
“And I try to remember that I am lucky, very lucky. I’m hoping there will be a time I can go out again, but I’m not hanging my hat on it.”
Doctors are concerned it may take longer than expected for healthcare and non-related surgeries to return to normal as lockdown eases. Two clinicians, speaking on condition of anonymity, tell how there remain shortages in anaesthetics.
Ellie Emmott, 47, from Tadcaster, North Yorkshire, was already facing the stress of having a kidney transplant for her six-year-old daughter Sarah postponed. “Sarah’s had a difficult life since birth, so having to go through all that and having this amazing plan in place just to have it snatched from us all of a sudden is devastating,” she says.
“She had her kidneys removed at the end of February, and a transplant was planned for four weeks after that. We’re just heartbroken and in shock.
“Although we were aware of what was going on with corona in China and Italy at that point, it had not directly affected anyone here, and especially around where we are and our hospital (Leeds Children’s Hospital).
“That makes it harder to swallow and accept. I was really cross. Not with anybody or anything – just annoyed with it generally.”
While hospitals on the front line hope they can return to something resembling normality as Covid-related admissions fall, Ms Patynowska, who moved to Belfast from Poland 20 years ago, sees no immediate end in sight for the vulnerable elderly in the community. “When I’m with the patients, I don’t feel the risk, I don’t feel the stress to myself – it’s at the end of the shift, when you’re actually coming home,” says the mother of two.
She has visited countless dementia patients who cannot understand why their family cannot visit. She tells of one dying man she visited: “I started talking to him, explaining why I was there, what I was going to do. He was semi-conscious, not able to respond … but after a few moments of me talking to him, I noticed some tears in his eyes. That really, really touched me.”
In a paper published this week, the Commons Digital, Culture, Media and Sport Committee said that £750million of support announced last month for the charity sector was insufficient to close a £4billion funding gap.
As far as the elderly are concerned, perhaps the Government should feel duty-bound to repay a debt, too.
“The Second World War generation are those who need this care now,” Mr Reed, the Marie Curie chief, says. “While the generation were clapping on Friday, holding the minute’s silence, actually the greatest commitment we could give is getting the end-of-life care that they need.”
‘There are so many others dealing with this – other charities, bus drivers, delivery drivers, dentists, all these people, but we only see the NHS’