A woman was taken off the waiting list for an operation - after hospital staff mistakenly recorded her weight as 40 kilograms heavier than she was.
Jennifer Newby had already been waiting for surgery for more than a year since she was first crippled by what doctors believed to be a painful ovarian cyst. The 29-year-old, who had been on powerful medications for months, had to stop work as a carer because of the pain and could barely leave the house, she says.
During a pre-op, Jennifer was told her BMI was too high to go ahead with the mass removal and that she had been taken off the waiting list as a result. After insisting on speaking to a doctor in person, the medics realised they had recorded Jennifer's weight incorrectly.
Now, Jennifer is sharing her story in the hope that other people waiting months for treatment don't give up hope. "Yes, mistakes were made and hopefully learned from however I am generally grateful to Salford Royal for what they have done for me," she explained. "I want to give hope to anyone stuck on waiting lists that while it may not seem like it now, that there is light at the end of the tunnel, to keep advocating for yourself and to not give up hope."
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Jennifer had moved in with her partner, had a steady job as a social care worker, and was excited for the future that lay ahead. But in September of 2020, she was rushed to A&E with severe abdominal pain. She was passing out and vomiting.
Jennifer had no idea at the time, but those dreams of her future would become scarred with pain. Doctors discovered that Jennifer had a mass on her ovary, believed to be a cyst, needing surgery.
The next two years turned into a nightmare as Jennifer faced joining a surgery waiting list which came with a huge backlog in the wake of the pandemic. 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 would end.
Jennifer was referred to Salford Royal and what started out as a 17cm mass grew and grew, becoming as large as 24cm at one stage during her long wait for help. She was terrified to think about exactly what was happening inside her body as she waited for intermittent scans which were months apart as the NHS struggled to keep pace with the sheer volume of patients needing treatment.
The Manchester Evening News spoke to Jennifer, from Skelmersdale, in early 2022. She said: “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 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 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.”
Jennifer received dates for surgeries but they were cancelled, she says. Eventually, she learned not to get her or her family’s hopes up as the surgery backlog endured.
Then, just after the M.E.N. last spoke to Jennifer in spring of 2022, there was yet another setback - she was removed from the waiting list because of an error. “I had gone in for a pre-op, but after that I received a letter to say I was going to have an appointment around June of 2022,” she explained this week. “I had been expecting to get news of my surgery date, but I was then told over the phone that I wouldn’t be getting the surgery - my BMI was too high.
“I had been gaining weight because the sheer pain had made me more sedentary and stopped me leaving the house, and I was having hormone fluctuations because of the cyst which was affecting my weight too.
“I told the hospital it was unfair to have to wait until June to speak to someone about it, so they got me an appointment in March of 2022.
“It turned out that they had weighed me 40kg higher than I was at the pre-op. Then I had to go through being put back on the waiting list - it seemed like failure after failure.”
Jennifer did not have the energy to be angry at the confusion. After living in pain for 18 months, she sat in the Salford Royal Hospital car park and cried with relief that there had, in fact, just been a mistake, she says.
Jennifer says she is 'grateful' to the NHS and the doctors at Salford Royal who treated her, acknowledging the health service is still grappling with staffing shortages, underfunding, and the fallout from the Covid-19 pandemic which saw surgeries being forced to be paused during multiple lockdowns, resulting in longer waiting lists.
“I was angry that there (was a) mistake but the relief that they were going to do the operation at all outweighed almost everything,” Jennifer continued. “I sat in the car and cried in the hospital car park with the relief that they wouldn’t take me off the list completely and leave me as I was.
“I’ve never seen the same consultant twice, I’d had different dates cancelled and then they make a mistake like that.
“My first pre-op had ‘timed out’ so I had another in August, then I got my surgery date through - September 14. I was so thankful, I felt lucky to have had it done at all.
“I ended up having the surgery that I needed in September at Salford Royal, almost two years to the date I first went to A&E with the pain and discovered what I thought was the cyst. I have been on painkillers for a long time, I’m still on them even after the operation.”
Alison Kelly, Director of Nursing at Salford Care Organisation said: "We would like to apologise to Ms. Newby for any delays she experienced in her treatment at Salford Care Organisation. Like many NHS services, we are working hard to reduce our waiting lists to ensure patients are seen as soon as possible.
"We have spoken to Ms. Newby to discuss any concerns she may have about her care or treatment."
Jennifer had raised concerns early on in her wait that while doctors thought the mass was a cyst, no one could be sure until it had been removed, leaving the possibility of it being something even more sinister. Jennifer later learned it was not a cyst at all, but a benign tumour.
Now, she’s facing another long process of coming off the heavy painkillers that need careful handling as a result of their addictive side effects.
“They had been telling me it was a cyst, in December I got the message that it turned out to be a benign tumour. It wasn’t what they thought it was at all,” said Jennifer.
“It’s been really rough, I’m still trying to come off all the painkillers and that has been difficult. I have been on a pain management plan since this started, but I have to come down on the dosages through my GP. Appointments have been really hard to get.
“So I’m on these painkillers that I don’t need for months, but I’m having to come down from a lot because there was opiate based prescriptions which you need weaning off.
“I am hoping to be off them in a couple of months, but it depends if I can get the GP appointments on time.”
Jennifer has not been able to return to her work in social care, but is now instead working in retail. Getting some normality back in her life after putting it on hold for two years has been monumental, she added: “I started working again and I’m so relieved, it upset to be out of work for as long as I was. Getting back to work was really important to me.
“Just to be out if the house makes a big difference, going out with my family and enjoying activities that I couldn’t do. The past few months around Christmas and being able to have a nice time with my friends while not having to worry about getting a call to come to hospital.
“We’ve not been able to book a holiday for two years in case I finally got a surgery date. We just didn’t go anywhere or do anything.”
Now, Jennifer and her partner have been able to book their first holiday in years and are looking forward to starting a new chapter by celebrating her 30th birthday soon. But she fears for all the people who are still languishing in pain, just like she was.
“I know there’s still people out there stuck and I really feel for them - advocate for yourself, don’t just accept you’re on a waiting list. It’s almost feels like giving up,” Jennifer said.
“I know the lists are long and there’s only so much the surgeons can do but only you know how you feel and how much help you need. If I hadn’t called the hospital every few weeks saying ‘I’m still here’, I think I would still be on the list.
“I can’t believe it all happened the way it did, it was so long ago that I got taken in by ambulance. It should have been dealt with in A&E that day. Two years later, I was still waiting and two and a half years on, I’m still feeling the effects.”
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