Family ‘still in limbo’ seven months after Nottinghamshire man’s cancer diagnosis

A daughter says her dad’s ‘fire is burning out’ after waiting seven months for an operation to try and treat his cancer. Robert Shepperson, 61, has suffered from Crohn’s disease , a type of inflammatory bowel disease, since he was 19 but has always been an active man, and worked as a motorbike mechanic until he retired due to declining health.

In November 2022, Robert, of Langley Mill, wasn’t feeling well and his daughter, Leanne Challands, 31, contacted the irritable bowel disease team at Queen’s Medical Centre and he was given an emergency appointment for a colonoscopy. During this several polyps were found, some of which were removed but others were more complex and a growth was also found which required a specialist, who later confirmed cancer.

However, several months later the family are “still in limbo.” Leanne said: “He’s an older male with medical complications and I’m positive they’re trying to leave it as late as they can so they can turn around and say he’s too weak and there’s nothing they can do.

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“Protocol dictates from detection to treatment and operating should be no longer than 42-62 days, so why are we now at 7 months. If he didn’t have us fighting his corner he’d have been left.”

She continued: “We feel they’re not fighting for him and not giving him the care he needs, nor deserves. I’m aware the NHS is under a lot of pressure at the moment, but just letting people die because they’re stretched isn’t acceptable.

“The more this goes on the more my dad’s fire is burning out.” An appointment was booked for December after Robert’s initial appointment, but this was later cancelled and rebooked for January 2023.

Leanne said: “We weren’t happy as dad was in a lot of pain as it was, but we waited as there was nothing else we could do.” It was confirmed a month later the growth was cancer, and further surgery was needed to determine treatment, but by March the family claim a date was still not set, and Robert had since contracted an infection and was “in a lot of pain”, and had to be admitted to hospital.

Leanne said: “We find out, after 4 days of him being in there, that we’ve not heard anything from anyone because he’s been passed from the IBD team who didn’t know what to do, to the cancer pathway team which didn’t know what to do, back to the IBD team who still don’t know what to do so nothing’s been done. We’d had no communication about it at all.”

Robert had an operation to reduce the growth and clean the fistulas he had developed, which are abnormal tunnels from the bowel to the skin. He was then sent home build up his strength for surgery, but a month later the family claimed they had heard nothing and were “getting more than fed up” with the lack of communication.

It was found the fistulas were being caused by Robert’s cancer and not his Crohn’s Disease, and so he can’t have radiotherapy and chemotherapy would make him “too weak” for surgery. She added: “It’s a good job we’re a strong family unit and have amazing friends.”

After being admitted to hospital briefly in May, Robert was given an appointment with the surgical colorectal team, during which the doctors explained their plan to fit him with a permanent colostomy bag and that chemotherapy may be needed after his operation. However, Leanne claims the anaesthetist said that they “don’t really want to do the op because they don’t think he’s going to pull through it.”

She explained: “It almost felt like he was trying to talk him out of having it done. Having just watched someone pass like that, this absolutely floored us, but dad’s determined and he’s going for it, we’re all behind him and doing what we can.”

Robert got worse, and had “a lot of blood and puss coming from places it shouldn’t” and was still in pain, being sick and struggling to eat or drink, and readmitted to hospital on Sunday, June 4. Leanne claims the doctor took him to colorectal “and said he needs this operation asap, they refused to admit him on ward and said they won’t do the operation as an emergency and to send him home.”

“I was angry because I don’t believe he’s well enough to be at home. My sister is a palliative care nurse and mum is a nurse prescriber, they’ve not been able to keep his pain under control with the already prescribed pain meds and struggling to get him eating and drinking.

“They’ve tried to block us at every turn, a nurse at the pre-op appointment told us that so many people are slipping under the net and she said we’d only got as far as we have because we’ve not sat quiet. This is neglect.”

Ayan Banerjea, Divisional Director for Surgery at Nottingham University Hospitals said: “We are aware of the concerns raised by Mr Shepperson’s family and our patient liaison team has been in contact with them. Although we cannot comment on individual cases, it is not routine to carry out cases such as this as an emergency due to their complexity and the risks it would present to the patient.

“We apologise for Mr Shepperson’s long wait and would like to reassure him and his family that we are aware of his case and will be in touch with them as soon as possible with more information regarding the next steps in his care.”

However, the family have argued that whilst they understand the strain on the NHS, Robert should have had a diagnosis given in person within a month and be referred to relevant health professionals within seven days of diagnosis, neither of which was done and they are now 215 days past when Robert’s GP first raised concerns.

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