Fife: Family back campaign for better pancreatic cancer care

Joan Staples, 71, from Dunfermline, died in June 2019 without receiving any treatment due to delays and repeated tests after receiving her diagnosis in the January that year.

She had first gone to the doctors in January of that year complaining of tiredness and her GP noticed she was slightly jaundiced and sent her for further tests.

A CT scan confirmed pancreatic cancer, but it was caught early enough for surgery to be offered.

Joan was fitted with a stent to relieve her jaundice in February, but she then didn’t see her consultant until almost a month later.

She was told the operation could take place, pending the results of a PET scan which was booked over two weeks later. The plan was that if the PET scan was successful, surgery would then take place within the following two to three weeks.

However, the first two scheduled scans were cancelled, with the PET scan finally taking place in late March 2019, over two months since her diagnosis.

Joan did not receive the results of her PET scan until the April 23, some seven weeks after the initial meeting with the Consultant. They showed that the cancer had now spread to her liver and surgery was no longer an option.

Palliative chemotherapy was offered but Joan was told she needed another CT scan first. This wasn’t carried out until almost a month later and by this time, Joan’s health had deteriorated, and she was too unwell to have any chemotherapy.

She died on June 27 having never received any treatment.

Her son, Martin, said: “We were aware of pancreatic cancer and how aggressive it was, so we did fear the worst but hearing that it was a small tumour and it had been detected early, you see some options and you’re given some hope.

"It’s an aggressive form of cancer, time was against us, yet the end-to-end process was too sequential – you are waiting on MDT meetings then consultant appointments then scans and when there are delays, such as the PET scans getting cancelled, everything else is put on pause.

"I believe a more concurrent process would have benefited my mum and others in a similar position.”

Pancreatic Cancer UK has just launched its ‘Don’t Write Me Off’ campaign calling on all 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.

Like Joan, seven in 10 people with pancreatic cancer receive no treatment at all – not even chemotherapy and the condition currently has the lowest treatment rate (34 per cent) of any common cancer.

Dawn Crosby, Head of Devolved Nations at Pancreatic Cancer UK, 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.

“Scotland has taken the vital first step towards improving survival for people with pancreatic cancer and other less survivable cancers through its national cancer strategy and it’s funding of the Pancreatic Cancer Diagnostic Pathway Improvement Project pilot.

"It now must embed this and deliver on their commitments to speed up diagnosis and improve quality of life for pancreatic patients. 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.

“The Improved Care Pathway represents the consensus of hundreds of health professionals and people affected by the disease who all care deeply about those diagnosed with pancreatic cancer, wherever they live, having the best possible chance of survival and as much precious time with their loved ones.

"Now we need governments to provide the sustained investment needed, so the NHS can meet the unique challenges posed by the deadliest common cancer.”

Martin said the family were surprised that Joan’s ‘Pathway sheet’ did show she had received treatment.

On investigation, it transpired that under current guidelines, the fitting of a stent during an Endoscopic procedure to relieve jaundice is classed as cancer treatment.

“To me this is painting a misleading picture as a stent is a passive treatment to relieve a symptom (in this case jaundice), whereas only active treatment such as surgery or chemotherapy will actually make any difference to the cancer," he added.

“I feel very guilty now that I trusted the process and didn’t do more. My mum’s opportunity was snatched away.

"As a family we’ve since been lobbying for improvements and whilst we’ve received a lot of sympathy, nothing has changed.

"Quite frankly, I don’t want sympathy – it’s not going to bring my mum back, but things must change so that people don’t suffer delays like she did.”