Emma and Ian Worrall will celebrate 20 years together in 2027 but their lives changed completely in January 2024 when Ian was diagnosed with cholangiocarcinoma, a rare cancer of the bile ducts.
The latest challenge for the pair has centred on access to regorafenib, a drug being considered as another treatment option for Ian.
A compassionate-use route that could have provided the medicine was affected by a VAT issue relating to donated medicines, leaving the couple facing the prospect of using their own savings for the treatment.
“We can find a way of paying for Ian for now,” Emma said.
“But what about the next patient? What happens to the family who simply doesn’t have the money?
“A person should not lose the chance to try a possible treatment simply because they cannot afford to fund it themselves.”
The couple are hoping to secure funding for the drug regorafenib amid the prospect of having to use their own savings (Image: Submitted)
A petition has since been lodged to remove VAT on donations of medicines which is available here.
Ian’s oncology team at Furness General Hospital (FGH) are also exploring whether an Individual Funding Request could be made in an attempt to secure NHS funding.
An Individual Funding Request is considered on the individual clinical circumstances of a patient and is not a routine or guaranteed route to funding.
“The fact that our local oncology team are looking at every possible option for Ian means an enormous amount to us,” Emma added.
“We don’t want people to think there is simply a pot of money that every patient can apply to – Ian’s situation is very specific, and his team are looking at whether there may be an exceptional route available in his particular circumstances.”
Because cholangiocarcinoma affects relatively small numbers of people, treatment options can become limited quickly.
Since his diagnosis, Ian has undergone multiple lines of treatment, numerous procedures and repeated hospital admissions.
He has also experienced two bowel blockages requiring surgery and is currently recovering in a London hospital following emergency surgery.
Emma and Ian Worrall have been together for almost two decades, but their lives changed in 2024 when Ian was diagnosed with cholangiocarcinoma (Image: Submitted)
Throughout Ian’s illness, Emma says they have been fortunate to have extraordinary support from the medical teams involved in his care.
Three specialists in particular – Professor John Bridgewater, Chris Chan and Dr George Webster – have become hugely important to them.
“We could never properly express what these doctors mean to us,” she said.
“They have given Ian so much of their time, expertise and commitment. When things have become incredibly difficult, they have continued to look for solutions.”
Closer to home, FGH has also played a vital role in Ian’s care, particularly during repeated episodes of biliary sepsis caused by complications with his bile ducts and stents.
Emma and Ian have established a new medical team closer to home in Cumbria, giving them additional local support alongside the specialist expertise Ian continues to receive in London.
A significant part of Ian’s chemotherapy has also been delivered at home by the Sciensus nursing team.
“What breaks my heart is knowing that Ian won’t be the only person in Barrow and the surrounding area struggling to access the cancer treatment they need,” Emma said.
“Behind every decision about funding or availability is a real family, trying desperately to find the best possible treatment for someone they love.”
This inspired Emma to contact a large number of MPs with Danny Beales, the Labour representative for Uxbridge and South Ruislip, securing an Adjournment Debate in the House of Commons that happened last week.
AMMF, the Cholangiocarcinoma Charity, attended Parliament on their behalf after Ian’s need for emergency surgery.
Emma added: “Ian’s job is to heal – he has to put his mind and all of his strength into recovering and getting strong enough for whatever comes next.
“I don’t want him worrying about finding treatments, looking for trials, emailing doctors, funding medicines or trying to understand everything that is happening around him – that is my job.”
The couple say they are deeply grateful for the support they have received from AMMF, MPs, Professor Bridgewater, Mr Chan, Dr Webster, FGH, their new local team, Sciensus, family, friends and their workplaces.
“We just want more time together. We know there are no guarantees,” she said.
“But if there is an opportunity, we have to do everything we can to make sure he has the chance to take it.
“And if all the work we have put into this campaign helps make that opportunity easier for another family in Barrow, Cumbria or anywhere else in the country, then every email has been worth sending.”