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Wendy, 58, is an Educational and Child Psychologist from Altrincham, near Manchester, who was diagnosed with extremely rare eye cancer in 2017. She is married to Andy and they have two daughters, India (26) and Bella (22).
Following a routine eye examination, Wendy was referred to a specialist who diagnosed her with ocular melanoma in January 2017, a type of cancer which affects just six in one million people. A few weeks later, she had her right eye removed, followed by radiotherapy and then her prosthetic eye fitted.
In November 2019, Wendy had MRI and CT scans which showed the cancer had spread to her liver. She was told there were no NHS treatments available. The news was devastating for her entire family who felt there was nothing else they could do.
Unfortunately, with ocular melanoma, like many rare cancers, treatment options are minimal and difficult to access. However, in early 2020, Wendy was given the opportunity to start a clinical drug trial, known as the ‘Delcath Trial’ for a type of treatment known as ‘Chemosaturation Therapy’.
Although still in clinical trials in the UK, this therapy is a mainline treatment in Germany and is only available privately in the UK. Evidence shows the treatment is highly effective and can prolong the life of patients with ocular melanoma. Outside the private sector, trials have been underway at two hospitals in the UK.
Getting to the point where you are accepted for the Delcath Trial is a lengthy process. Wendy had to have MRI and CT scans to check for the very low chance of brain cancer.
She also had to undergo a heart scan and pre-op tests for the first stage of her treatment. An angiogram was used to identify peripheral blood vessels to Wendy’s liver that needed to be blocked off so that her liver could be isolated for the intense blast of chemotherapy.
On 13 March 2020, the angiogram and blocking of the blood vessels took place. Doctors told Wendy this was the start of her trial. She was due to return to the hospital on 26 March for a baseline heart scan in preparation for the first of six chemotherapy infusions to start on 27 March 2020.
However, on 23 March, the day lockdown started, Wendy received a call from an NHS administrative staff member to say that she was not to attend on 26 March.
Confused, and another three phone calls later, Wendy eventually got through to her specialist nurse who told her the clinical trial had been cancelled indefinitely.
On Wendy’s insistence, the lead consultant of the trial called her the next day to inform her that in his hospital and across Europe, the clinical trial was “dead in the water”.
Subsequently, Wendy was informed she could look to have the treatment privately in the UK from the end of July or August 2020, at the cost of £240,000, or she could wait for the trial to come back online in the UK, whenever that may be.
Wendy explains: “I understood we were in a pandemic and so I was no longer an immediate priority. However, it does not make it any easier to have my potentially life-prolonging treatment, so abruptly halted once it had started.
“Days before, Prime Minister Boris Johnson had repeatedly announced there would be ‘no impact on cancer treatment’ during COVID-19. I appreciated that there might be a delay while they got on top of the COVID-19 situation, but I did not expect that my treatment would stop altogether and that the only option given to me would be to pay for the same treatment privately at a cost of up to £240,000 .
“The trial was sold to me on the basis that I was one of their youngest and most physically fit patients, with no other underlying health conditions. I had been given such hope. They told me that 60% of patients have had a positive response to the therapy and in some cases, tumours have ‘completely disappeared’.
“I’ve done some of my own research and have found out that following recent clinical trials in Germany, it is now a standard treatment for patients with ocular melanoma (sometimes referred to as uveal melanoma) and it is available in three separate German hospitals.
“To have my trial for the only effective treatment option available for ocular melanoma which has a fairly high chance of stopping the spread of cancer, or the tumours disappearing is utterly disappointing and soul-destroying for me and my family.”
Mary Smith, Associate Legal Director of Novum Law, and an expert on medical law and patient safety, says:
“Very sadly, Wendy’s situation is not unique. According to the National Institute for Health Research (NIHR) nearly six in 10 clinical trials have been stopped entirely in the wake of COVID-19.
“For cancer patients, like Wendy, the opportunity to take part in clinical research when there are no other or limited treatment options available, provides tremendous hope. Being given that potential lifeline after being accepted on a clinical trial and starting treatment, only to have that lifeline taken away is devastating. Halting trials has a huge impact on cancer patients – physically, emotionally, and psychologically. It also delays the eventual rollout and availability of these treatments to wider patient groups.
“While there are plans to get some clinical trials back up and running, the concern is that for many cancer patients, it will come too late for them to benefit from these potentially life-saving, innovative treatments.
“It is vital clinical trials restart as soon as possible to ensure cancer patients can access new and emerging cancer therapies that can help prolong their lives.”
Featuring on BBC Panorama: Britain’s Cancer Crisis, Mary also spoke about the long road ahead to clear the backlog of non-covid patients:
“The impact of diagnosis and treatment delays has been really harrowing for patients. I’ve had people who have had chemo cancelled, young parents who have died… One oncologist told me that even if we operated at 125 per cent capacity, it would take us more than a year to clear the backlog.
Wendy and her family have explored all their options in the UK and worldwide and refuse to give up, but every road they have navigated so far has ended up being a dead end.
It has now been over three months since Wendy received that fateful call telling her not to come in for her innovative treatment. Unfortunately, her cancer has progressed in that time, and so, even if the trial does come back online in the UK, there is no guarantee that she will still be eligible, when that eventually happens.
Speaking to The Guardian, Wendy said her life has been “catapulted into unbearable turmoil” and that “watching family members struggle with the devastating decisions made on my behalf by the hospital was heart-wrenching. I’ve had to go with my tumours going untreated for eight months.”
With treatment on the NHS, not an option at the moment or in the foreseeable future, the only option for Wendy and her family is to try and raise the money needed to fund this treatment privately, while she is still a candidate for it.
She told The Guardian that it was “shocking, absolutely shocking” that she and her husband, Andrew, were having to use their savings, drawdown pension money and remortgage their house to raise the money for treatment that she was due to get on the NHS until the pandemic struck.
While they are fortunate to be in a position in which they can find some of the money themselves, they still need an additional £100,000 to fund the treatment completely.
To help, Wendy’s daughters, India, and Bella, have set up a GoFundMe page. Bella says:
“Losing an eye on top of a cancer diagnosis is a life-changing experience. The way Mum bounced back after she lost her right eye was truly remarkable. She refused to let it stop her from doing all the things she loved. It has been completely inspiring to see how Mum continues to be the wonderful woman she is. Her strength, resilience and kindness continue to shine through every bit of adversity. We do not know how she does it! The reason we set up the GoFundMe is to help us fundraise a proportion (£100,000) of the overall cost of the treatment our Mum needs. We are not even sure words could even begin to explain how grateful our family would be for any fundraising efforts or donation contribution no matter how big or small. Thank you so much.”
“Well done to Bella and India for their incredible fundraising efforts so far! Wendy and her family are in a fortunate position, they have some savings to put towards the £240,000 needed to pay for the clinical trial privately, and fingers crossed their Go Fund Me page will make up the shortfall. But not everyone has savings. The significant sums needed are beyond the means of most people. This is heartbreaking for cancer patients who do not have time to spare.”
If you would like to make a donation to fund Wendy’s treatment visit: gofundme.com/f/funding-our-mum039s-cancer-treatment.
If you or a loved one has suffered due to misdiagnosis, delayed diagnosis, delayed treatment, treatment errors or any other type of medical negligence, then please get in touch. Call Novum Law on Freephone 0800 884 0777, email: firstname.lastname@example.org or complete the enquiry form on this page.
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