“It’s affected every single part of my life,” sighs Jennifer.
“It’s got so much worse over the past four months. There’s a constant pain that’s there every minute of every day.
“I had learned to live with it a little bit, I had started to manage it, but it’s getting intolerable now.”
At 28, moved in with her partner, a steady job as a social care worker, Jennifer was starting to think about having a family, excited for the future that lay ahead.
But in September of 2020, Jennifer was rushed to A&E with severe abdominal pain, passing out and vomiting.
Jennifer might not have realised it at the time, but those dreams of her future would become scarred with pain.
Doctors discovered that Jennifer has a 24cm ovarian cyst, needing surgery.
Not only would she go on to be in physical agony, unable to put on her socks without help, she would be left with the emotionally exhausting anxiety of not knowing when it will end, and if she will ever have the family she wishes for.
Jennifer is just one of so many people who after waiting years through a pandemic for their surgeries and appointments, will see the solutions to their debilitating conditions once again delayed for the foreseeable future.
Greater Manchester health chiefs announced, last week, that ‘non-urgent surgery and appointments’ would be paused due to the ‘rising impact’ of Covid-19.
Rising levels of NHS staff absence, with around 15 per cent of the region’s workforce off sick or isolating, growing numbers of hospital admissions as the Omicron peak hits, and care home outbreaks preventing patients from being discharged, were all cited as reasons for the move.
The city’s leaders voiced hopes that the ‘temporary measure’ will impact the ‘fewest number of patients’.
Cancer and urgent care patients – including those due to undergo cardiac surgery, vascular surgery and transplantation – will not be affected.
The Christie and Rochdale Infirmary are the two sites across Greater Manchester continuing to provide cancer care and surgery.
But that has come as little solace to the thousands who were on waiting lists before the pandemic and already faced the same cancellation policy which came into force as the first wave of coronavirus hit in 2020.
Plenty more patients have since joined those waiting lists, with injuries and illnesses never dissuaded from rearing by the pressures the NHS might be experiencing.
A handful spoke to the Manchester Evening News , sharing their stories of lives lived in pain, with no end in sight.
They may fall under the ‘non-urgent’ category, ‘it’s urgent to me’, they say.
Excruciating injuries left for almost two years and counting
“I have a herniated disc, in old terms, that’s a slipped disc,” explains 48-year-old Scott Tulloch.
“There’s severe nerve damage all the way down my left leg to my toes.
“We don’t know whether that is going to be healed by the operation.
“It’s my back, but the pain that’s worse is the nerve pain.
“It shoots all the way down my left side. It’s a stabbing, sharp pain. I struggle to bend over, my mobility and movement is really restricted.
“Last Christmas I could hardly walk, I was on my hands and knees some days. Terrible pain.”
Scott suffered his injury at the start of the pandemic, in October 2020, while working at a church-run food bank to try and care for those struggling as lockdown hit.
“It took ages to get to see a consultant, a good six months,” he said.
“Then in April, 2021, as soon as the consultant saw me at Salford Royal, they said we’d need to do an operation, and I went on the list.
“It then took another six months until the pre-op.”
Scott had a pre-operative appointment at Salford Royal Hospital last October, but since then, has heard nothing..
He said: “I left that appointment being told that I would get a letter telling me to go and get a PCR test, once I have had that, I should shield for a couple of days,
“No one has said a date but if you have a pre-op, within a month, maybe six weeks maximum, you assume you’re going to be going in. If we could get it done by Easter, it’d be great, but you just don’t know.
“It was inevitable. Over Christmas, with everything leading this way, it doesn’t take an idiot to realise that we haven’t got enough staff in there anyway so when people are going off, it’s going to get worse.
“It’s really frustrating, not towards the NHS, but it’s one of those things that is part of being in a pandemic.
“They’re working their backside off, staff in the NHS, and it’s still terrible. It’s really hard for everyone.”
Waiting months for an appointment, without much communication, is an all too familiar story for Jennifer, from Skelmersdale.
“A month after I was rushed to A&E in an ambulance, I had the ultrasound scan and I received an urgent referral to gynaecology, they told me I had, what was at the time, a 17cm ovarian cyst.
“They said it needed to be removed because it had twisted on itself, torted and cut off its own blood supply. The ovary was dead and would have to be removed.
“A month after that, I had an MRI scan. In that month, it had grown an extra 4cm, by that point 21cm, around November, 2020.
“I was waiting again and trying to get hold of a gynaecology appointment. I didn’t get one for another couple of months, then I was told that it would still have to be removed and that doctors weren’t sure if it was torted, dead or what.
“It’s been a bit of a waiting game ever since.
“I paid for a private ultrasound scan in July of last year, that was at Salford Royal and they said they would put me on an urgent waiting list. But I haven’t heard anything since.
“It’s affected every single part of my life. It’s got so much worse over the past four months.
“There’s a constant pain that’s there every minute of every day. I have learned to live with it a little bit, I had started to manage it, but it’s getting intolerable now.”
Off work, unable to move, mental health spiralling
While the patients wait for crucial surgery dates, the rest of their lives are slipping away.
Scott decided to give up his community development job, saying that the church he worked for needed to fill the role to help others desperate for help.
“I couldn’t cope with working without taking painkillers – and if I took the painkillers, I shouldn’t be working with vulnerable people. I came out of work.
“I couldn’t sit on statutory sick pay, it wasn’t fair on the church. They needed someone to do that job and as long as they were keeping me on the payroll, it meant they couldn’t recruit anyone.
“In these times, you need someone to be there helping to do the community development work, this is the time we need it the most to help those more in need.
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“I’m a single parent, I have a teenager. So I’ve got company, I’ve got a support network.
“It’s the people who haven’t that I feel for – the elderly, people who are on their own.
“It’s frustrating because I can’t work and I’m a guy who likes to work, but I’m not bouncing off the walls.
“We’re in a pandemic and we all have to make some sacrifices, and if that means not being at work for an extra couple of months to get my back fixed then so be it.”
But that comes at a personal cost.
“If there’s no one to do the operations, there’s no one to do the operations,” says Scott.
“We have to wait our turn until there are more people in the system. There’s no option but to delay it.
“I’m concerned that there will be permanent nerve damage. At some point, they have to relieve that pressure on the nerve.
“I’m quite a physical guy, I’m active for my job, I’m ex-forces.
“I used to keep on top of my mental health by going for walks in the Peaks, I can’t do that now.
“I’m worried that I won’t be able to be as active. But it’s one thing at a time at the moment, I’ve got to get back to work as soon as I can.
Rushing back and doing more damage isn’t going to help anyone, but you’ve got to pay the bills.”
For Jennifer, that personal cost looks like being forced to make choices about her future blind.
“There’s also this really sharp, intermittent pain that is concerning,” she said.
“That becomes a huge reminder that I’m still waiting. It’s that, in particular, that is stopping me from doing things.
“Something as simple as bending down to the cupboard to get a plate out, I’ll get stuck there and not be able to get back up; not being able to bring my feet up or reach down.
“I’m struggling to get dressed, put my own socks and shoes on, my partner is having to help me wash.
“I haven’t been able to work since August 2021 because of the pain.
“It’s frustrating not being able to work because I work in social care. To know there’s such a big crisis in social care that I can’t help with because I’m also waiting for help is really difficult.
“Being someone who cares for a living, being cared for is crazy for me. It’s a complete role reversal.”
Although those who need emergency life-saving operations will still get the treatment they need, Jennifer says she is one of so many who are suffering severely but will not qualify for help.
“It’s urgent for me,” she said. “I don’t know how much damage it’s doing the longer it is left, I don’t know how much they’ll have to remove.
“They don’t know what the cyst is attached to, what’s in it, no one has seen it.
“They can’t guarantee it’s not anything sinister until it’s out and has been bi-opsied, so I don’t even know what it is yet. All I know is that it’s a cystic mass.
“I don’t know if I’ll be able to have children, it’s been left so long. Something that should have been a simple procedure at the start probably isn’t going to be now.
“I’ve been trying to avoid the thought of having a family, it’s a big concern for me.
“I’m 28 and haven’t had my children yet. I do intend to have them, so it’s probably going to be an fostering or adoption thing for me – it’s a good thing to do anyway, but to be forced into it rather than make that decision isn’t the most pleasant thing.
“My whole family is walking on eggshells with me, my sister has children and now is the time I would be starting to think about it having moved in with my partner.
“I can’t think about it because I don’t have the option to.”
The painkiller problem
The hours, days, months tick by and still they have no surgery dates to speak of. In the meantime, their reliance on heavy doses of painkillers grows. The more their tolerance rises, the higher the doses climb.
It’s frightening, these patients say, while GPs who have their hands tied by delays believe ‘there is nothing else we can do’ but bump up medications dulling the pain – but also dulling the senses. It’s leaving patients ‘zombified’.
“I’m terrified about the painkillers, I really am,” explains Scott.
“I know they’re not doing the job they used to do. I won’t go on a stronger painkiller, I won’t do it.
“And there’s going to be people in a lot more pain than me.
“My tolerance might increase, I might have to go on stronger painkillers.
“I have had problems with addiction and dependence, mental health concerns – at a time when we have massively underfunded mental health services.
“What lies behind someone with a hip operation might not just be about the operation. They may start struggling with mental health which becomes a bigger burden.
“We have a tendency, in this country, to address what we see up front.
“All these people turning up to A&E in crisis, under the influence, they’ll get patched up and sent back out but the bigger issue hasn’t been dealt with.
“I don’t know whether that’s the painkillers, because I’ve been on them for so long, that have dulled the back pain.
“But the stabbing, shooting nerve pain is uncomfortable, particularly if you’re sitting for long periods of time. It’s the worst position for it, but what can you do all day when you’re mobility is so limited.
“You’re taking these painkillers, opiates, and your attention span is gone. You can’t read as well. For want of a better word, you’re almost zombified, it’s taken some of your cognitive ability away. It’s everything.”
After recovering from her surgery, whenever that may take place, Jennifer is fearing another fight on her hands – weaning herself off opiates which can be highly addictive.
“I’m on morphine and all sorts of things. I’m so worried about having to come off these painkillers.
“Yesterday, they had to up my dosage because I’m suffering so much. I phoned my GP asking for help and they said the best they could do is manage my painkillers.
“Knowing that the longer I’m on them, the higher the dosage gets, the harder it will be to come off them.
“I have been on opiates for 18 months, it’s going to be a long slog to get off them and get back to normal life. Even once I’ve recovered from my surgery itself, I know I’ve still got a fight ahead of me to recover from that.”
Pre-ops… but no ops
Some have faced the devastation of getting to the pre-operative appointment stage, even getting to the hospital for their surgery, only to face yet more setbacks.
John Ezard, from Middleton, managed to get the furthest, arriving at hospital for his operation, but discovering that his Covid test, needed to start the surgery, never reached the lab it was sent to.
Suffering with chronic, severe bouts of tonsillitis leaving him bed-bound roughly every six weeks, he was hoping to finally have them removed.
“I’ve been waiting for a tonsillectomy over two years now,” the 25-year-old told the Manchester Evening News .
“I was meant to have them taken out last October, 2020, but at the time you had to isolate for two weeks and then recover for two weeks afterwards.
“With the lockdowns, I couldn’t stay at home because of my mental health. I was willing to wait for the surgery.
“I waited another 14 months and then got a date with a private hospital, which had been given the surgery by the Royal Oldham Hospital where I was initially supposed to have the operation, due to the demand.
“Initially it was quite good, they told me I would have a pre-op assessment and then give you a date for a Covid swab, and then a date that you need to be admitted into hospital.
“That all happened about three weeks before the date of the surgery, which was due to happen in November, 2021.
“I was quite apprehensive to have it just before Christmas because you don’t really want to be sore then. But I wanted to do it anyway, I prepared myself.
“I had to move things around because I’m working and at university as well. I did shifts beforehand to make up the hours I would miss through recovery.
“I did a Covid swab and then isolated for three days. I got to hospital, went through my medical history to make sure we could go ahead with the operation.
“A member of staff asked me if I’d had my Covid swab, I told them I had come in for it on the Monday.
“Then another staff member came in and told me, ‘we’re really sorry, the lab we send our Covid swabs to has not received yours, you haven’t got a result so we’ll have to cancel your procedure.
“It was quite frustrating.”
Scott Tulloch went into Salford Royal for a pre-op appointment, but as the results are commonly only valid for six weeks, like so many others he will have to do another before ever getting to his surgery.
The expired pre-ops form yet another element to the colossal and ever growing backlog.
“I imagine I’ll have to do a pre-op again, and it might be months off yet because of all the people who had their pre-ops before Christmas who will have to go through it again.
“We can’t afford to waste time. It’s going to harm the NHS.
“There will be people damaging their backs, moving forward.
“Society is changing, people might have always sat behind a desk for work and, because of the pandemic, they’re working at Tesco now and they could pull their back.
“The NHS could outsource it privately, but that’s a huge cost.”
When Jennifer finally received a date, she quickly informed family and friends who had spent months comforting her through a distressing time.
Just three hours later, she says she received a call from the hospital to cancel the surgery.
It was a crushing blow, she explained: “Originally, it was that the surgery needed to be done within four weeks, then it was that it had to be done in three months.
“Then it was ‘it needs to be done by January, it needs to be done by…’ The doctors just kept pushing it back and by last summer, they told me it would just happen when I was called because they were getting overwhelmed again.
“I did get a date last year for the surgery to take place in October, but the hospital phoned me back three hours later and cancelled it.
“I told everyone in those three hours because I was ecstatic that I would finally get back to some semblance of normality, then I had to phone everybody back and tell them it wasn’t true and that it had been cancelled.
“I had been keeping an eye on pressures on our hospitals because of the surgery I need, it was a bit of a kick in the teeth because I have been told my treatment would happen soon, but half of me was expecting it anyway.
“I had a pre-op done in the hope of having the operation in October, the last time I saw any consultant was July of 2021.
“Now I’ve been told that pre-op has run out, so I’ll have to have another anyway. It’s incredibly frustrating.”
What do Greater Manchester health leaders say?
Emergency surgeries will continue as non-urgent treatments are paused, health chiefs have assured, while diagnostic services, including endoscopy, and the majority of out-patient services will continue ‘wherever possible’.
Fiona Noden, chief executive of Bolton NHS Foundation Trust, co-chair of Greater Manchester Hospital Gold command and lead for elective care in the region, said: “Last week we made the very hard decision to pause some non-urgent surgery and appointments in Greater Manchester.
“We understand that this does not come without consequences and that many are facing longer waits for non-emergency treatment than usually expected.
“We know how frustrating and disappointing this is for people, and that for individuals waiting, it can feel urgent.
“We made the difficult decision due to sustained pressures on our NHS services, rising Covid-19 admissions and an increase in staff being unavailable for work.
“With more patients and fewer staff to care for them, we had to make this decision, and we understand that people will have concerns about when they will be seen.
“We know sadly that people are struggling while waiting for treatment that will undoubtedly improve their quality of life.
“We hope those affected will understand that while far from ideal, we have to prioritise treatment for those with the greatest need.
“This will have caused concern, and in some cases, prolonged discomfort for many people in Greater Manchester, which is why we are doing our very best to try and resume treatment as soon as it is safely possible to do so.
“In preparation for when we can restart most elective care, we are looking at who has the greatest need and who has waited the longest, and prioritising people against these key criteria.
“We will keep the public informed. If you are not contacted, please assume your treatment is continuing as planned.
“There is no need to contact the hospital or your GP practice for this information.”
Jude Adams, Chief Delivery Officer for Northern Care Alliance NHS Foundation Trust, which runs Salford Royal and The Royal Oldham Hospital, said: “We are very sorry to hear about the distress and inconvenience experienced by patients who are unfortunately waiting for operations, treatment or appointments.
“Our staff want nothing more than to help and assist our patients with their treatment and recovery, but unfortunately the immense challenges of the Covid-19 pandemic mean we can’t always do this in the way we want to.
“We are working hard in partnership with our colleagues across Greater Manchester towards restoring the planned care we have had to stand down, because we know how important this is for patients.
“I would encourage those who can to access the available online support on the While You Wait website, https://whileyouwait.org.uk/, which contains some practical help for people who are awaiting treatment.”
‘Going private isn’t an option’
Some patients can consider taking up private health care, but that comes with a significant financial tie.
Jennifer says she was forced to pay for a private scan amid concerns that no doctor had laid eyes on her cyst in months.
But she could never afford to have it removed using the same, expensive system.
“Cost is a big issue, I sought out the private scan for my own mental health,” she explains.
“The idea that it was there and growing, and hasn’t been seen or scanned in months, was really playing on my mind.
“But as far as other private health care goes, there’s no way I could afford that, it wouldn’t even be an option for me.”
At least we have an NHS, says dad Scott, grateful for the ability to save his money to pay for his home and family.
“It’s not like this is going to cost me £160,000 like if we were across the pond.
“I have to look at the positives because it would be a hell of a lot worse if we didn’t have an NHS.
“I probably wouldn’t even be having an operation, I’d be looking at a bill saying ‘right, that’s me knackered for life’.
“I wouldn’t be able to afford a private operation.”
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No end in sight
Now, it’s a question of waiting and wondering. All the while, conditions are getting worse, the waiting lists are growing, and any remaining hope is being crowded out by insufferable pain.
“I had a text two or three weeks ago, it was just a generic text to people waiting for operations. It was a ‘click on this link for support’ text, quite nondescript. It was more about wellbeing and keeping yourself healthy, which is right, you need to.
“But I’ve had nothing specific to tell me when my operation is going to happen, then I saw the alert in the news saying non-urgent operations had been suspended.
“I’m praying daily that I’ll get a date before Easter but it is what it is. The problem with having a bad back is that you become less mobile and you start putting on weight. I can’t go to the gym or go for a walk like everyone else.
“I’m conscious that I’m at the back end of my 40s, I want to keep myself here.”
“The worst part of it is to know there’s so many people out there just like me,” added 28-year-old Jennifer, still waiting to start the rest of her life with some sense of peace and comfort.
“It’s changing people’s lives forever.”
Unable to pay out, crippled with pain, wracked with mental anguish, dazed by medication, and with no surgery date on the horizon. These are the thousands of patients stuck in limbo.
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