Worksop woman campaigns for pancreatic cancer patients to be given vital tablets needed to stop them from starving
A Worksop resident is backing a new campaign in memory of her mum to ensure people with pancreatic cancer are prescribed tablets they need to stop them from starving.
According to new research, half of all people diagnosed with pancreatic cancer are not prescribed the inexpensive yet essential tablets, without which they cannot digest food.
The charity Pancreatic Cancer UK has now launched its ‘Transform Lives: Prescribe’ campaign, urging the NHS to ensure everyone who could benefit from the tablets are prescribed them at the point of diagnosis.
The alarmingly low prescription rate for the tablets was revealed in an audit of 1,350 pancreatic cancer patients in the UK led by researchers at the University of Birmingham, with funding from Pancreatic Cancer UK.
The tablets, known as Pancreatic Enzyme Replacement Therapy (PERT), are not new and are already recommended by NICE for people with pancreatic cancer.
As the cancer grows it stops the pancreas producing enzymes needed to digest food and absorb nutrients.
PERT tablets are therefore essential to help patients eat, stay healthy enough to tolerate treatment and to manage debilitating symptoms from the cancer - including pain, diarrhoea and extreme weight loss.
Marie’s mum, Josephine, was diagnosed with pancreatic cancer in 2019 but, sadly, the disease was too advanced for her life to be saved.
The cancer prevented her from being able to eat or digest food, and she lost at least two stone in weight.
Frequent vomiting meant she struggled to drink or even swallow painkillers.
Josephine died in April 2020 just seven months after diagnosis, aged 73.
She was never prescribed PERT tablets, which Marie believes may have helped manage her symptoms and to tolerate more chemotherapy.
Marie, 44, said: “It's hard to see somebody who's confined to a bed and who can't eat anything without vomiting.
"In full health and fitness, she weighed about nine-and-a-half stone.
"A couple of stone off that… it makes quite a dramatic difference. By the end, she was skeletal. There was nothing left, really.
“They offered six cycles and she managed just two before she deteriorated and wasn’t able to undertake any more.
"Maybe it would have made a difference to the length of her life - but perhaps more importantly - also to the quality of her life.
"It's almost like people who are who are diagnosed with this disease late and can't look at any kind of surgery, that they're almost written off.”
Pancreatic Cancer UK said it was deeply concerned by the low prescription rates, but especially that so many people with incurable pancreatic cancer are not being given the medication - which could not only improve their quality of life, but also help them tolerate life-extending treatment.
The audit found that patients who had been diagnosed too late to have surgery, the only potential cure for the disease, are two times less likely to be prescribed PERT tablets.
Sadly, 80 per cent of people with pancreatic cancer are diagnosed too late to have surgery.
The disease’s vague symptoms, such as back-pain and indigestion, mean it often goes undetected until after it has already spread.
Health professionals’ lack of awareness of PERT tablets is the most significant reason why they are not prescribed more frequently.
The majority of the 10,000 people diagnosed with pancreatic cancer in the UK each year are given a terminal diagnosis.
They are more likely to be treated by health professionals who do not specialise in the disease and have lower awareness of PERT tablets and their benefits.
At just £7 per patient per day, PERT tablets are inexpensive for the NHS.
Through its ‘Transform Lives: Prescribe’ campaign Pancreatic Cancer UK is urging the NHS across all four nations to implement targets to make sure people with pancreatic cancer are prescribed PERT tablets routinely. Currently more than half of people with pancreatic cancer die within three months of diagnosis. They cannot afford to wait for essential medication and the charity is asking the public to support the campaign by signing its open letter calling for change: https://transformlives.pancreaticcancer.org.uk/
Diana Jupp, CEO of Pancreatic Cancer UK, said: “Nobody should have to watch someone they love waste away from pancreatic cancer when proven, inexpensive medication is available to stop that from happening.
"It needs to become second nature to see people with pancreatic cancer and prescribe PERT tablets, in the same way an immediate link is already made between diabetes and insulin. They are just as vital.
“Health professionals care for people with pancreatic cancer with great skill and compassion year after year, but many will typically see patients with this devastating disease far less frequently than other types of cancer.
"People diagnosed with pancreatic cancer cannot wait for the expertise of specialist cancer hospitals to be shared naturally to other parts of the health service.
“We need targeted action now across the NHS to raise awareness of PERT tablets and ensure everyone who needs them is prescribed them – regardless of whether or not their cancer is curable. A simple prescription could give so many people with pancreatic cancer more – and better quality – time with their loved ones.”
Less than seven per cent of people with pancreatic cancer, which has the lowest survival of all the 20 common cancers, will survive beyond 5 years in the UK.
Surgery is the only treatment which could save lives, yet less than ten per cent of people with pancreatic cancer have it.