Grandad to raise £120k for cancer treatment
Specialised treatment for rare cancer is not funded by NHS
A52-YEAR-OLD man says he has been ‘left in limbo’ as he is forced to raise £120,000 for treatment of his rare cancer - which is not funded by the NHS.
Craig Shore was diagnosed with a rare form of eye cancer, for which standard chemotherapy has just an eight per cent chance of success.
But the specialised treatment recommended by the National Institute for Health and Care Excellence (NICE), which develops guidance about procedures for the health service, is not being funded by the NHS.
That means Craig is now trying to raise the six-figure sum for three courses of the treatment himself.
Craig first started struggling with his vision in December 2020.
The engineer was being fitted for new safety goggles for work and at first he thought his sight problems were because of a new type of lens.
“It looked like stairs were floating when I was going downstairs,” he said.
Craig’s vision was becoming cloudy and he went to get his eyes checked again. After a handful of appointments at Tameside Hospital trying to figure out the cause and limited results, Craig was sent to Rochdale Infirmary to be checked by particular equipment.
Experts at both hospitals could not establish what was wrong and he was sent to the Royal Oldham Hospital.
Yet more tests and more questions later, Craig was eventually sent to St Paul’s Eye Unit in Liverpool in mid-2021.
There, he faced a horrifying diagnosis - uveal melanoma, a rare type of cancer occurring in the tissues of the eye.
Around 750 cases of ocular – or uveal – melanoma are diagnosed in the UK every year and around 50 per cent of these lead to a secondary cancer, known as metastases.
This occurs in the liver in more than 85 per cent of patients, but limited treatment options available on the NHS mean just 10 per cent to 25 per cent survive for a year after their diagnosis.
Craig’s eye was taken out after he was put to sleep by surgeons and markers were placed on the back of his eye to track the cancer.
Craig then began a course of proton beam therapy at the Clatterbridge Cancer Centre in the Wirral.
The family, including Craig’s partner Michelle, his two stepchildren and his 10-month-old grandson, Archie, were overjoyed in July 2023 when he got the all clear.
Because the condition is so rare, Craig was then invited to take part in research - when he was dealt another blow within a matter of weeks of his good news.
Tests which formed part of the research to learn more about uveal melanoma revealed that Craig’s cancer had spread to his liver.
“There’s the possibility of getting on a trial for experimental treatment but there’s no guarantees there,” said Craig.
“I’d need to have a biopsy on the tumour in my liver to get on any trial, and because the metastasis has been caught early, it’s still small.
“I’ve been told I need to wait for it to get big enough for a biopsy. The doctor said ‘I know it’s not nice to hear you’re going to have to go away and wait to see if it gets big enough where we can do a biopsy and that will determine the treatment route.’”
Craig, who works at the University of Manchester, hopes that he won’t have to wait if he can get specialised treatment, which has been recommended by NICE - the body which gives guidance to the NHS on the treatments and procedures it should use. But despite its NICE approval, that treatment is not funded by the NHS.
The chemosaturation therapy has been found to be effective in almost 90 per cent of patients, according to national charity Ocumel UK which supports patients affected by the cancer.
The charity says that despite this success and PHP being highlighted as a treatment option by NICE in 2021, the NHS is still refusing to fund its use.
In a study published in the journal Melanoma Research, researchers found liver cancers
were controlled in 88.9 per cent of patients who had received chemosaturation therapy, with 62 per cent of patients surviving for a year and 30 per cent after two years.
“The treatment is called chemosaturation and isn’t available on the NHS,” continued Craig.
“Physically I’m right as rain, but mentally it’s not a nice thought to have to find
£120,000.
“But it’s not good sitting in a dark room about it, I have to get on with this.
“Chemosaturation was suggested to me by the Christie [cancer centre in Manchester] - it’s £40,000 for one course and the recommendation is three courses.
“I’m just in limbo. It’s probably worse for my family to sit through this waiting.”
Craig, from Glossop, added: “Funding this treatment for those who need it, even though it is a rare condition, is a ridiculous amount of money - but it’s not a lot as a percentage of what the NHS budget is.
“My family have been brilliant in doing everything they can to try and fundraise for me - without Michelle, it’s possible I’d be knackered.”
The family’s campaign has even been supported by award-winning actress, Dame Helen Mirren, whose stepson died from uveal melanoma in
2022.
The actress has been vocal ever since about the disease, encouraging people to get their eyes checked yearly, and donated a personalised jacket to Michelle to help fundraising efforts.
A spokesperson for the NHS said: “Our most recent clinical review into this treatment found there is not enough evidence, which demonstrates that making chemosaturation available on the NHS would benefit patients; and represent the best use of health service
resources. If a clinician feels that the level of evidence of effectiveness and cost-effectiveness for this treatment has changed since the review, they should inform us, so the process for looking again at this clinical policy can begin.”
NICE said it made ‘specific recommendations about when this procedure is appropriate’ when approving it back in 2021, saying: “There are serious, well-recognised complications, associated with this procedure.
“It can be used with special arrangements for clinical governance, consent, and audit or research, for patients with metastases in the liver from ocular melanoma.
“For patients with primary liver cancer or metastases in the liver that are not from ocular melanoma, evidence of efficacy
is inadequate in quality and quantity and this procedure should only be used in the context of research.”
To help Craig’s fundraiser head to this Gofundme page at: https://www.gofundme. com/f/craigs-life-saving-cancer-treatment
‘I’m just in limbo. It’s probably worse for my family to sit through this waiting’
Craig Shore