On 23 March 2020, the day Boris Johnson announced the first national lockdown, Lesley Adshead was due her third round of chemotherapy. With no warning, she received a phone call that day while she was alone at home in Salford, informing her that her treatment was being stopped. There was nothing more that could be done, she was told. Ten weeks later, she passed away aged 61.
Lesley, an NHS clinical support worker at the Salford Royal Hospital for 17 years, was loved by her colleagues, and was always immaculately dressed, funny and full of life. She was fiercely proud of her daughters, who, following their mother’s death, have been raising awareness about how cancer treatment is being disrupted by the pandemic.
There had been no suggestions up until 23 March that Lesley’s chemotherapy wasn’t working. “No red flags, nothing came up, and the plan was always to review it after the third round,” her daughter Tracy tells the New Statesman. “But then lockdown happened and it was cancelled – there was no discussion, and no answers whatsoever. Mum wasn’t given a choice.”
Whether through cancelled surgery and treatment, paused screenings or simply fear of going to the GP or hospital during the pandemic, a backlog of cancer cases and other grave illnesses is building up.
Comparing the number of elective procedures (operations planned in advance) to the usual number over the past two years allows us to see how many people may have missed out on essential treatment.
Figures from NHS Digital show there have been three million fewer elective procedures since February 2020 when compared to the same months in recent years.
“These are the forgotten victims,” says Hayley, Lesley’s other daughter. “They should be included in the death toll. She died when she did because of Covid, but her life wasn’t deemed important enough to be added to the numbers.”
The NHS Confederation calculates 4.5 million people are waiting to have treatment in hospital. It also estimates that up to ten million people will need new or additional mental health support.
As the NHS faces years of churning through this backlog, amid potential future Covid-19 waves, who will it prioritise, and how will it ensure lives like Lesley’s are not cut short?
“Longer waits for treatment, and more very long waits, mean more patients living for longer with pain and discomfort. For some operations, the outcome is likely to be better the sooner it is done,” says Rachel Power, chief executive of the Patients Association.
“While the NHS is seeking to prioritise life-saving surgery, it’s certainly possible that some patients who would ordinarily have made a good recovery will now not survive their illness.”
Over the summer, the percentage of people being seen for cancer treatment within NHS target times improved slightly, but the second Covid wave has brought more delays.
That’s despite the overall number of patients and treatments being lower than it was before the pandemic. A crisis of delayed cancer diagnoses is rumbling beneath waiting time figures.
In January, there was an 11 per cent fall on last year in the number of people in England being seen by a specialist for suspected cancer following an urgent referral by their GP.
Since the pandemic hit in March 2020 up until this January, there has been a 16 per cent drop in the total number of people who have seen a specialist for suspected cancer compared to the same period last year.
Monthly figures show that between April and November 2020, there were 37,752 fewer cancer diagnoses compared to the average in 2018 and 2019.
In the first national lockdown the National Screening Service closed, while fewer GP attendances and a strain on resources also contributed to the drop in diagnoses.
According to Sara Bainbridge, head of policy at the cancer support charity Macmillan, the “long-term impact [of these numbers] is yet to be seen”.
She adds that it will take many months to resolve “a long shadow cast over cancer care” by Covid-19, and tens of thousands are estimated to “still [be] missing a diagnosis due to disruption caused by the pandemic, which could be impacting their prognosis with each day that passes”.
A fall in diagnoses will mean more people eventually being diagnosed with later stage – and less survivable – cancers. A number of doctors tell the New Statesman that they are now seeing a disproportionate number of patients presenting for the first time in a late stage of cancer.
“In A&E, what we’re seeing now are people turning up… with quite advanced metastatic cancer that has spread to several organs, and they’re turning up for the first time, being diagnosed for the first time, in accident and emergency,” says Dr Parth Patel, an A&E doctor at a London hospital who has been researching the state of the NHS beyond Covid-19 for the IPPR think tank.
“That should be a complete no-go – and it’s the sort of thing that was really rare before the pandemic.”
The IPPR has estimated that around 4,500 avoidable cancer deaths can be attributed to the pandemic, with the percentage of cancers diagnosed while still highly curable falling from 44 per cent to 41 per cent since Covid hit.
That has moved the NHS further away from its target, set out in the long-term plan in 2019, of 75 per cent of cancers detected in early stages by 2028.
The NHS is not only playing catch-up in the area of physical health, but with mental illness too, which has only been exacerbated by lockdown and social isolation.
The NHS Strategy Unit has forecast that there will be 1.8 million new referrals to mental health services in the next three years as a result of Covid-19. This does not include the hundreds of thousands of patients who were unable to access services during the first lockdown.
In terms of psychological therapies alone, there were 268,218 fewer referrals between March and December 2020 than in the same period in 2019 – a figure that usually rises year on year.
“A huge amount of my work is dominated by the terrible, deleterious effects of the lockdown on mental health,” reveals Gavin Francis, an Edinburgh GP and author of Intensive Care, who told the New Statesman about his experiences at a recent Cambridge Literary Festival event.
“Normally, as a GP, I would see about a third of my workload would be related to mental health but for the past year it’s been more like half to two-thirds, because it’s not natural to live like this.”
He has noticed a particular rise in self-harm, alcoholism, insomnia and panic attacks among his patients, plus “an extraordinary rise in an odd syndrome of paranoid psychosis, mostly in middle-aged men” who have never previously suffered psychosis.
Children have been particularly affected: waiting times for young people with eating disorders are at a five-year high, with the number of referrals doubling in the latest quarter of data, while a peak of 309,961 people contacted children’s mental health services in December.
The Strategy Unit estimated £3-4bn would be needed just to keep the NHS standing still on mental health post-pandemic, let alone improving services and waiting times. That is far more than the £500m announced in the 2020 comprehensive spending review.
“Rationing” – the moral minefield of allocating health resources – is often discussed and debated as waiting lists build. When resources are stretched, who should be put first for which treatment? The money allocated in the Chancellor Rishi Sunak’s Budget does not amount to enough extra spending for the NHS in England to recover from the crisis and its fallout, according to health experts who argue the health service needs at least £10bn more in 2021-22.
“In the past, rationing has been done by means of extending waiting times for operations – that’s how people have been rationed in the past, and that’s what will happen,” predicts Dr Hilali Noordeen, a spinal surgeon at the Royal National Orthopaedic Hospital NHS Trust in Stanmore, Greater London, who describes his patients waiting for postponed operations as living in “pain and agony”. “There are [more than] four million people on the waiting list. How long it will be to take it down, a few years, who knows?”
“Conversations will probably be about prioritising health conditions: do we prioritise the backlog, or do we prioritise increasing access to mental healthcare services?” says Patel. “That’s not a trade-off that we think we should make, and it’s definitely not a trade-off you have to make, despite how it might be wrapped up politically.”
Patel’s IPPR research calculates a “£12bn blueprint” of extra investment that would tackle both short-term catch-up care following the pandemic and build resilience in the NHS in the long term.
Yet if the Chancellor sticks to the NHS spending he has announced, which omits significant additional funding for the impact of Covid-19 and bakes in a much-derided 1 per cent pay rise for nurses, then healthcare could suffer.
“The consequences will be that fewer people get access to care,” warns Patel. “More and more people are going to be told they’re simply not unwell enough to need specialist mental healthcare services. Cancer survival in the UK will stagnate at what is one of the lowest levels in comparable countries…
“The level of care you can get is going to change quite strongly: staff are going to be more stretched having to provide care to more and more people, and that means the quality of care provided is poorer.”
The danger of a future postcode lottery is stark. During the first and second waves, care was cancelled unevenly across the country.
The day before lockdown last year, Wendy Peake, 58, an educational psychologist from Cheshire, was told that the clinical trial to treat her very rare eye cancer at a Liverpool hospital was cancelled because of the pandemic. But the same trial in Southampton continued.
Her family was eventually able to crowdfund her treatment privately, but the delay and uncertainty was traumatic. “There is a total disconnect between those at the top making decisions and the effect and implications for patients. We are human beings,” Peake tells the New Statesman.
“I think about people who aren’t getting the treatment they need when I hear about waiting lists building up on the news. They must be going through what I went through last year. The impact on your life and loved ones is catastrophic.”
Long waiting lists could potentially mean more vital targets are missed, such as those for GP emergency referrals for suspected cancers (which should happen within two weeks). The UK is already one of the worst performers for cancer survival compared with other OECD countries, after more than a decade of cuts.
“There are lessons from the early 2000s when we reduced the waiting lists dramatically to way below one million,” says Nigel Crisp, who was chief executive of NHS England from 2000 to 2006. “Back then it was about being very clear about priority, using all the resources available and, very importantly, making sure people innovated and then spread good practice.
“We drove it hard, but we also found clinical leaders who, for example, knew what would work in their speciality, and they created the plans for them, for example, for cataracts or orthopaedics. I would start by asking people in the NHS – like leading surgeons and nurses – what they think needs to be done and how they would get the list down.”
Patel warns that “just clearing the backlog” of elective operations to get “back on track” should not be the NHS’s sole ambition, as it was underperforming before the crisis hit.
“The NHS had a decade of declining performances, some of the worst survival outcomes for cancer and heart attacks than any comparable country in Europe and beyond,” he says, highlighting the aims of the “NHS Long Term Plan” announced for the next decade in 2019.
“We can’t forget long-term goals to actually improve healthcare outcomes, improve cancer outcomes, improve heart attack outcomes, expand access to mental healthcare services, which is woefully low,” he warns.
Macmillan’s Sara Bainbridge says other suggestions include “maximising the use of private hospitals and ‘chemo buses’ [mobile chemotherapy units], as well as planning to do more activity than normal to ‘catch up’ are all part of the solution”.
Until a solution is found, the burden will fall on exhausted health workers and distressed patients and their families. Ruth Bennett, 55, from Norfolk, has been struggling with the distance and loneliness of having her breast cancer, diagnosed in December 2019, treated under pandemic conditions.
During the pandemic, her chemo doses were reduced to avoid the treatment hitting her so hard she would have to take up a hospital bed. “There was uncertainty about whether it would go ahead at all. I’m on tenterhooks the whole time,” she tells the New Statesman.
Bennett was self-isolating and living alone, simply waiting for doctors to call. “A lot of appointments are by telephone – it’s so hard to get into that conversation about something so serious, and I think I missed a huge amount of information. Things are missed or lost in translation on the phone.”
Back in Salford, the daughters of Lesley Adshead are concerned that patients like their mother will be forgotten. “They were saying ‘protect the NHS’, but by making this backlog, they’re putting them under more pressure,” says Hayley. “It’s going to be there for a long time. The number of people who have gone through something similar to my mum – it shouldn’t happen, and somebody needs to be held accountable to stop it happening again.”