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The Guardian - UK
The Guardian - UK
Politics
Nicola Davis, Rachel Obordo and Carmen Aguilar García

‘Huge human and economic toll’: one in seven people in England waiting for NHS treatment

Flora Renz, who uses a wheelchair, was put on the waiting list for hip surgery in November 2022 but her surgeon has left the NHS trust, and has not been replaced
Flora Renz was put on the waiting list for hip surgery in November 2022 but her surgeon has left the NHS trust and has not been replaced. Photograph: Dimitris Legakis/Athena/The Guardian

Prolapsed organs, bouts of paralysis and an unexplored heart problem: these are among the conditions patients in the UK are being left to endure as a result of ballooning NHS waiting lists.

More than 7.6 million cases in England – related to 6.37m patients – were on the waiting list in December, latest NHS England data shows, with two in five of them (3.3m) waiting for more than four months and one in 20 (337,450) having to wait longer than a year.

The waiting list fell in December for the third month running and it is slightly below the previous month, with 0.1% fewer entries.

The figures come just days after Rishi Sunak acknowledged that he had failed to keep his promise to cut healthcare waiting lists.

“We have not made enough progress,” the prime minister said on Monday in an interview with Piers Morgan on TalkTV. Asked if that meant he had failed, Sunak said: “Yes, we have.”

The latest waiting list figure represents a rise of 66% on the 4.57 million cases in February 2020, the last full month before the start of the Covid pandemic.

However, the numbers alone belie the impact of the delays.

The size of the waiting list is having “huge human and economic toll”, said the chief analyst at the King’s Fund, Siva Anandaciva, and it is “absolutely wrong” to think that people “can wait without consequences”.

He added: “When care is delayed, people’s conditions and symptoms might get worse, mental health deteriorates, their social network will suffer and it will also have an impact on how much care and support they can provide to loved ones. The consequences [of having the care delayed] can impact on many different areas of your life.”

Louisa* has multi-organ prolapse after a traumatic delivery of her first child in June 2019 involving forceps. The condition means more than 1cm of her organs, such as the womb and bladder, are bulging out of the vaginal opening.

She went to her GP in London when she noticed it six months after giving birth. “The doctor could see it was hanging out and said: ‘We don’t do anything about that any more.’ I was quite distressed about it at the time but didn’t take it any further.”

In the summer of 2021, during an obstetrics and gynaecology appointment to discuss a caesarean for her second child, she was told her prolapse could have been, and should be, treated.

Initially, Louisa delayed the operation to care for her newborn son. However, a few months after the family moved to Manchester in July 2022 she requested to be referred for surgery. She is still waiting.

“In the meantime I can’t do much physical exercise – if I need milk I use the car because the weight of carrying it causes problems. I used to be an active and fit person – now I do nothing and my mental health is poorer,” she said.

NHS England data shows that the number of people waiting for gynaecology services has doubled since February 2020. Close to half of them have been waiting for more than 18 weeks.

Dr Ranee Thakar, president of the Royal College of Obstetricians and Gynaecologists, said women’s health continued to be “deprioritised and overlooked”.

“We are asking the NHS to rethink the way care is prioritised,” she said. “While often called ‘benign’, common conditions such as prolapse and fibroids are often progressive, and have a huge impact on a woman’s quality of life. Long waits can result in unnecessary emergency admission to hospital, or more complex treatment needs.”

Scott* is also waiting for treatment. Having experienced bouts of numbness and paralysis over the years, the situation has become worse. “I started developing pins and needles on the left side of my body,” he said.

Scott went to his GP who referred him to a neurologist and musculoskeletal service in February 2023. As a result Scott received a whole spine and shoulder MRI in July. He is still awaiting an appointment to discuss the outcomes of the scan.

“In the meantime my health has degraded exponentially over the last four weeks and I am now semi-paralysed in my foot,” he said. As a result, Scott has now had to give up his job as a healthcare assistant.

Sophie, silhouetted, who has been left in limbo after the discovery of a heart murmur
Sophie has been left in limbo after the discovery of a heart murmur. Photograph: Murdo MacLeod/The Guardian

Scott is also expecting a brain MRI this month, but has been told the next available appointment to discuss that scan will not be until October.

He now has constant, excruciating pain in his left shoulder and arm and has spent huge sums of money on alternative therapies.

“I am absolutely terrified,” Scott said. “Justifiably, I now fear that my health could worsen even further and with the possibility to remain totally paralysed if I am not treated urgently.”

Sophie*, a 41-year-old medical writer in Glasgow, has also been left in limbo after the discovery of a heart murmur meant she was told she could not access treatment for her attention deficit hyperactivity disorder (ADHD) until it was investigated.

Sophie’s doctor made an urgent referral for her heart murmur to be investigated in July 2023 – an appointment that would involve Sophie having an echocardiogram. However, Sophie has since been told the earliest she will be seen is May this year.

“If this is such a critical issue that it restricts my options [for ADHD treatment] pretty severely, shouldn’t it be a little quicker than almost a year away?” she asked.

Despite modifying her lifestyle, diet and taking other actions to cope with her ADHD, Sophie is now struggling to work. “I’ve just offered work my resignation,” she said, adding she felt “guilt constantly” about the situation. “But I’ve literally tried everything, including pushing for different opinions, so I am at a bit of an impasse.”

For some, the lengthy waits are nothing new. As someone with a disability, Flora Renz, 35, said she was “by now fairly used to NHS delays”.

An academic from Canterbury, she has Ehlers-Danlos syndrome (EDS), which makes standing or walking even for a short duration painful.

Following severe hip pain in 2020 she was referred to see a specialist young adult hip surgeon for torn cartilage. After trying other treatments such as physio she was put on the waiting list for surgery in November 2022. She was due to have surgery in November 2023 but had to defer it because of Covid.

When she followed up at the start of this year she was shocked to learn her surgeon had left the NHS trust. With no replacement, all of his surgeries had been put on hold. “He’s still working privately but his going rate for the surgery is just below £13,000, which is unfortunately out of my price range,” said Renz.

As a result of waiting, she can’t walk as much as she used to and gets spasms in the ligaments around her hip, either using crutches or a wheelchair to walk. She worries about the long-term effect. But the delays are also taking their toll mentally.

“The indefinite waiting is really soul-destroying,” she said.

The NHS national medical director, Prof Sir Stephen Powis, said it had been an “extremely challenging winter” and a fall in the number of patients waiting for treatment and improvement in ambulance response times was “a testament to the continued hard work and dedication of NHS staff”.

“The figures for last week demonstrate winter pressures continue to hit the NHS hard, with hundreds more flu patients in hospital every day compared to last year, and challenges discharging patients affecting bed occupancy and the speed at which patients flow through hospitals.”

*names have been changed

The alternative manifesto: Securing the future of the NHS

On Tuesday 27 February, 8pm-9.15pm GMT, join Denis Campbell, Narda Ahmed, Siva Anandaciva and Greg Fell as they discuss what an alternative manifesto for health and social care could look like. Book tickets here or at theguardian.live

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