I'm trying to continue really successful treatment for my rare cancer but unfortunately the NHS will not fund it so I'm asking for help. I have an offer of treatment but I have to fund the drugs at a cost of £20,000.
I was almost clear of cancer in 2017 thanks to treatment with the drugs I need but now I'm deteriorating again. I know this treatment will work on me.
I've already spent my personal pension and my Army pension lump sum and sold possessions including my beloved collection of Northern Soul records to fund treatment, so I haven't just got my hand out. To date I've spent a total of about £180,000.
But if I run out of money, I will die this year.
In 2014 I was diagnosed with cutaneous squamous cell carcinoma and it was found that it had metastasised. This cancer rarely spreads, but mine had, there are probably only a couple of hundred people a year who get this form of metastasised cancer in the UK.
I had all the usual conventional treatment in 2014; surgery, 7 weeks of daily radiotherapy and a couple of dollops of heavy chemotherapy for good luck. None of it worked and it turned out it never works on other people with this cancer either.
In May 2015 I was told I was terminally ill, with no treatment options and sent home to die with a prognosis of 3 to 18 months to live.
I've never accepted this and since May 2015 I've tried everything I can to stay alive and live as normal a life as possible. My full story to date can be found on my blog at "Trying to beat cancer" but I'll summarise my ludicrous story here.
I tried all manner of things with some success; the spread of my cancer slowed but I couldn't stop it.
Then I read about Immunotherapy and found that people in the U.S. with my form of cancer had been successfully treated with it. I spoke to my oncologist but he didn't know much about it, then I found that nobody in the UK would treat me with it (NHS or privately) as it is a pretty new thing but it isn't licensed for my form of cancer.
The thing is, there is no licensed treatment at all in the UK for my form of cancer so all my oncologist can do on the NHS is give me palliative care.
In early 2017 I heard of a clinic in Germany who would treat me. I contacted them, they asked for my previous scans and tissue samples for testing. After an agonising wait they gave me the results of analysis and a treatment plan that they thought would help.
I went to the clinic in March 2017, almost dead, they treated me at 3 weekly intervals until June 2017 (as that's what I could afford) and essentially saved my life. Immunotherapy worked on me!
Here's the before and after scans from my treatment there (with explanation). I was about 95% clear, it was like a miracle.
I came back to the UK and naively thought there would be some interest in my miraculous recovery. Most people with this form of cancer die within 2 years of diagnosis, by July 2017 I had survived over 3 years. I was winning my fight. But hardly anyone was interested. I couldn't and still don't understand this as recoveries like mine don't happen every day.
A journalist from Look North (North East) included my case in a piece about another patient at the same clinic and asked NHS England why we couldn't be treated in the UK. NHS England responded that we could put in an Individual Funding Request.
I did manage to get agreement at Southampton Hospital to continue my treatment but they wouldn't fund the drugs. So my oncologist in Leeds put in an Individual Funding Request(IFR) to NHS England for the costs of the treatment. It was refused in November 2017 for reasons neither I nor my oncologist understood.
The same Look North reporter covered my story again and managed to get the Professor in Southampton who was treating me to do a piece to camera.
I haven't had any treatment since December 2017 as getting NHS hospitals to give you unlicensed treatment is pretty much impossible. I can't afford to go back to the clinic in Germany.
My oncologist wrote back to NHS England for a fuller explanation (they will not communicate directly with patients) but never received a reply.
I wrote to them but didn't get a reply so complained officially in September 2018. My complaint wasn't investigated, it was just passed (slowly) to the people I had complained about and they responded pretty pathetically. They did promise to reply to my oncologist but never did. I queried all this but was told "if you don't like it, go to the ombudsman" and that was that as far as they were concerned.
So I contacted a solicitor who has challenged Individual Funding Requests successfully a number of times. He said I had been fobbed off, I had a good chance of overturning the decision but I had left it too late to challenge it. He advised me to try and get the IFR re-submitted with more evidence, so we did.
I found out 2 days before Christmas in 2018 that it had again been refused. The IFR policy had changed in November 2017 so the response was in a different format but just as ludicrous. You read it all here.
The details came through in January 19 so I instructed my solicitor to challenge it. He sent a letter before action which made NHS England back-pedal a bit, they agreed to put the IFR in front of the National IFR Panel so we moved it on a stage.
The IFR Panel sat last week and refused my funding request for the third time. We are awaiting the detailed response which should arrive in the net few days.
In January I also wrote an Open letter to Simon Stevens (NHS England CEO) imploring him to look into the IFR process as it is set up to fail patients and no clinician I have met has any faith in it. Many clinicians just refuse to fill in the paperwork as they understandably consider it a waste of their valuable time. Simon Stevens hasn't replied but I didn't expect him to; he didn't reply to my MP when she contacted him in early 2018 about my case.
But none of this gets me any better and I'm now deteriorating again which is such a shame as I was almost clear in mid-2017. I want to stay alive! I have things to do!
Unknown to me my current oncologist had managed to persuade the hospital where I'm seen to treat me with the drugs I need but again I have to fund the drugs. I've jumped at the chance as it will hopefully keep me alive for a while longer. But the cost is £20,000 for a course of 4 treatments and I really need a bit longer. I start treatment on 2nd April.
My plan is to stay alive until this treatment becomes standard or I force NHS England to fund my treatment. So I have to pay for my treatment. Amazingly this happens to an increasing number of people, I keep connecting with people on Facebook and twitter who have to fund their own cancer treatment in this country as the NHS refuses to.
Personally, I think this is a scandal, it certainly isn't something many people know about. I'm really angry about this, having terminal cancer is bad enough without having to spend years fighting NHS England for useful treatment.
I'm a veteran, with the medals to prove it and I've paid my taxes (quite often a lot of taxes) for 44 years now, but when I need help I'm turned away.
Please don't think I hate the NHS, the people who have actually treated me over the years have been 99% absolutely fantastic. The NHS workers at the coalface, actually treating people, work their socks off in difficult circumstances. It is the bureaucrats, shiny arses and non-jobs in NHS England that wind me up (and who suck the money out of the NHS).
Please help if you can by donating, if you can't donate then please share this on Facebook, twitter and anywhere else you feel fit.
Every bit of the money raised will go towards my treatment, my wife and I will fund our legal fight.
Thank you so much.
- William Read
- Claire Desbois
- Diane King