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A grieving daughter says her cancer-stricken dad was denied more precious time with his family because of repeated delays to his treatment.
Clive Flisher, 67, from Canterbury, was told chemotherapy could extend his life after he was diagnosed with stage-four pancreatic cancer.
But the treatment was held up for almost two months, and just days before he was due to start his first session doctors broke the news the disease had progressed too far to fight it.
The much-loved grandfather died five weeks later at home – less than three months after being told he had cancer.
East Kent Hospitals, which runs the QEQM, William Harvey and Kent and Canterbury Hospital where Mr Flisher was treated, has now apologised for the distress caused to his family and says steps are being taken to reduce delays and speed up diagnoses.
One of his three daughters, Nicola Allen, said: “If dad’s chemo started sooner, we know he wouldn't be here now, but maybe we would have had a chance to do more things with him - just a bit more time.”
Ms Allen says it took a year to diagnose her father, describing the whole ordeal as “like a car crash in slow motion”.
Mr Flisher visited his GP in July 2019 and was told he was borderline diabetic, which came as a surprise given he had never been a drinker or smoker and ate a good diet.
The NHS says people with pancreatic cancer may develop symptoms of diabetes “because it can produce chemicals that interfere with the normal effect of insulin”.
In December, Mr Flisher complained to his doctor about back pain – one of the symptoms of a pancreatic tumour – and was sent to have physiotherapy, but due to the Covid-19 pandemic the sessions were moved online.
The grandfather-of-six was not seen by a medical professional in person until July 2020, when a scan was ordered.
Ms Allen said: “We had to wait two weeks to get the scan and then he really had to chase and chase to get the results - stage-four pancreatic cancer and it had spread to the liver and the lymph nodes.
“You could just see he was heartbroken; he loved his family so much - the whole journey from there on just got worse and worse.”
Mr Flisher was subsequently told he had six to 12 months to live with chemotherapy, or three to six months without it.
According to Ms Allen, seven weeks after Mr Flisher’s diagnosis, when he was about to start the treatment, doctors told him “I’m sorry, we’ve been too slow - you can’t have the chemo”.
“I remember he said ‘my pathway has been taken from me’ - he just had no control over the situation at all,” she said.
The mum-of-two can recall a harrowing episode when her dad, unable to speak or see properly, became stuck in a seated position at home.
Ms Allen said: “He was a shell of his former self, clearly in agony and crying out ‘I’m dying’, and you’re left in this desperate state thinking ‘what on earth can I do?’.”
At hospital, scans revealed a tumour had been blocking Mr Flisher’s kidneys so the pain medication he had been taking was not being processed, causing him to hallucinate, but providing little pain relief.
“They took 16 hours to get him onto a ward, and it was the next day they phoned me as they said they had told him they were moving him to a hospice for end-of-life care,” Ms Allen said.
“That was when we put our foot down and said ‘no, he’s coming home’.
“The end-of-life nurses were absolute angels - they’ve got all the time in the world for you. But it’s upsetting, that the end-of-life nurses were the only positive part of it.”
Data from the NHS reveals almost seven in 10 people with pancreatic cancer receive no treatment at all, and the illness currently has the lowest treatment rate of any common cancer, at 34%.
Charity Pancreatic Cancer UK says while patients are waiting for medical care the cancer can spread, leaving them ineligible for treatment they might otherwise have received, and ultimately dying earlier.
Speaking about her father’s experience, Ms Allen said: “Throughout the whole process it was so difficult to speak to anyone. We were never told why there were all these delays. There’s no joined-up care.
“You have a scan and then you’re just waiting for the next person in the chain to call and you don’t know who that person is.
“My dad was just absolutely devastated every second of every day; he was helpless.”
In memory of her father, Ms Allen is crossing off items on the bucket list he was unable to complete - including spending the day at the York Railway Museum and taking on the Yorkshire Three Peaks challenge.
She is also backing a campaign urging the government to fund an improved care pathway for pancreatic cancer.
“Dad wanted to stop other people going through this hell,” she said.
“We are dedicated to fulfilling his wish. We need things to change if patients are going to stand a chance and there has to be a better standard of care.”
On Thursday, Pancreatic Cancer UK launched its Don’t Write Me Off campaign, calling on governments across the UK to fund a new, faster and fairer pathway to give all patients the best chance of survival and quality of life.
The charity’s CEO, Diana Jupp, said: “For seven in 10 people with pancreatic cancer to receive no treatment at all – not even chemotherapy - is shocking. Those treatment rates have remained stagnant for at least a decade and people with this devastating disease deserve better.
“There is simply no time to wait - delays are costing people their only chance of survival. The path from diagnosis to treatment must be faster, more efficient and encompass all aspect of a person’s care. Nobody should ever feel written off or ‘fall through the cracks’ - regardless of whether their cancer is operable or not.”
Responding to Mr Flisher’s experience, Sarah Hayes - the chief nurse and midwifery officer at East Kent Hospitals – said: “We are deeply saddened that Mr Flisher experienced delays with starting his treatment and would like to apologise to his family for the distress this caused.
“We wholeheartedly agree that support, research, and additional understanding into this rare cancer is essential, to give more treatment options and better outcomes for the patients and families affected.
“Within the trust we are developing our services to include a dedicated pancreatic clinical nurse specialist and cancer support worker role.
“We have also been part of the NHS national screening trial which aims to detect cancers earlier, and have developed straight-to-test services in partnership with the Kent and Medway Cancer Alliance, to speed up diagnoses and reduce delays in starting treatment.”