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“I was so ill and felt like nobody was listening to me!” Almost half of cancer patients waiting two months for first definitive treatment at United Lincolnshire Hospitals Trust, which covers Lincoln, Grantham, Boston, Louth

After facing stresses around her own cancer diagnosis and waiting for referrals and treatment, a Lincoln mum said NHS data showing Lincolnshire’s hospitals are below national averages for cancer treatment metrics don’t fill her with confidence.

Fresh stats from NHS England revealed that in January 2024 there were 679 people receiving treatment for cancer at United Lincolnshire Hospitals NHS Trust (ULHT) sites.

A closer look into the figures around waiting times for referral, diagnosis and treatment paint a bleak picture for Lincolnshire’s residents, though.

Pilgrim Hospital in Boston
Pilgrim Hospital in Boston

Some 41.7% of patients were waiting at least 62 days from urgent suspected cancer symptoms, screening referrals or consultant upgrades, to the first definitive treatment.

This means that almost half of the suspected cancer patients in Lincolnshire were facing a wait of over two months for treatment from the first point of cancer being suspected.

This total of 58.3% being treated within 62 days is just shy of 30% lower than the national operational standard of 85%, set by NHS England based on Q3 2023/24 performance.

Lincoln County Hospital. Photo: Google
Lincoln County Hospital. Photo: Google

ULHT is also below national benchmarks and averages for maximum four week waits from urgent referral to diagnosis, which was at a rate of 69.4% in Lincolnshire, and 70.8% nationally.

Amanda Markall, Deputy Chief Operating Officer at United Lincolnshire Hospitals NHS Trust, said: “Improving care for people with suspected cancer remains a priority, and we are working towards meeting the national targets to see and diagnose 77% of patients within 28 days and treat 70% within 62 days by the end of March 2025.

“As part of this commitment, we are reducing waiting times by improving access to diagnostic testing, increasing the number of outpatient appointments available and increasing our theatre capacity to allow us to offer more operations.

Rachael Tollerton with family
Rachael Tollerton with family

“We also continue to work alongside GPs and other health professionals across primary care and regional centres to ensure those who need ongoing specialist care can easily access those pathways.”

Rachael Tollerton was recently told she has a rare form of cancer called pseudomyxoma peritonei, a slowly growing tumour that forms into a jelly-like substance in your stomach.

Rachael’s first symptoms emerged on February 19 as she went from “perfectly good health to complete agony” at the drop of a hat, prompting her to try and get a doctor’s appointment.

Rachael Tollerton
Rachael Tollerton

After being told her GP was not available, she attended the Urgent Treatment Centre at Lincoln County Hospital the next day.

It was here she claims to have been told there didn’t appear to be anything serious or life threatening, and was sent home.

A week in bed followed and on February 26 a follow-up with her doctor revealed she might have suspected diverticulitis, so she was referred for a non-urgent colonoscopy.

Rachael had doubts that it was diverticulitis, but said she was “firmly shut down” when she asked if it might be something more serious.

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After being sent home, she became violently ill after attempting to eat, and on March 4 she was again at the doctors for examinations, where she was referred straight to the Surgical Emergency Admissions Unit at Lincoln County Hospital.

That same day, she had a CT scan which showed a collection around her appendix. Initial medical examinations pointed towards a burst abscess in her appendix, but a closer look revealed something far worse.

It wasn’t an abscess, but rather a jelly-like substance in her appendix, prompting doctors to tell Rachael on Saturday, March 9 that she has pseudomyxoma peritonei.

This is just the first three weeks of Rachael’s cancer journey, and the wait is on for her to be officially referred and for treatment to commence.

“I felt like I wasted two weeks just trying to be listened to, and once I got into hospital they were great up to the point of realising what it was that was actually wrong with me.

“The build up to diagnosis was unbelievable, I was so ill and felt like nobody was listening to me.”

There are just three hospitals in the country that can offer treatment for this condition, with the closest being Goodhope Hospital in Birmingham, but she is going to have to wait another week for confirmation of her referral to that site.

However, Rachael says she might yet have to return to Lincoln if she requires more tests, as she feels the hospital required “more urgency” when dealing with cases like hers.

She worries the recent waiting times data don’t make for particularly good reading for patients like her.

“If I have to wait 62 days, there will be nothing left of me,” she said.

“I don’t know what my prognosis will be, but it concerns me because I’m in constant pain. I would hope it will be quicker than that.

“If it’s going to be at least two months before treatment, that is really concerning.

“I have three kids and a granddaughter, it worries me because obviously you want to be there to see your kids grow.

“Ultimately, it is what it is and I am where I am. We just have to crack on and keep our fingers crossed that it is treatable.”

When asked what she feels the root cause of these problems are, Rachael was stumped.

“I knew the NHS was in crisis, but this has really opened my eyes, I didn’t realise how bad it really was.

“I don’t know if it’s time, staffing, government support, they’re under so much pressure and I don’t know what the solution is.

“My previous experiences of doctors and the health service pre-COVID has always been really good, but now it’s all so different.”

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