Things have moved at a pace in the last month, good news, not so good news etc etc. My positive posts are much better received than my rants but unfortunately its not always easy to stay positive, I’ll give it a try though.
Open Letter to Simon Stevens
This was sent on 20th Jan (recorded delivery) and received by NHS England on 22nd Jan. To date nobody has bothered to reply. This doesn’t surprise me given the disdain that NHS England has for patients and pretty much anyone else. They didn’t bother to reply to my MP when she wrote to Simon Stevens so why would they lower themselves to corresponding with a patient?
I also sent it out to all the major newspapers and TV stations and have had a couple of definite expressions of interest and a couple of hints. The Individual Funding Request (IFR) process is a complex thing so it doesn’t lend itself to headline grabbing stories, but at least one team of investigative journalists are doing background work on the process to make sure it is as bad as I claim so I may yet see it forced into the public eye.
I also asked people to share it on social media and joined twitter to post it around there as well. According to the stats the post I wrote has now been shared 319 times! Not quite viral but it reached a lot of people with those shares.
Judicial Review of IFR Decision
We decided that the last IFR refusal should be challenged as the response from the IFR Screening just beggars belief. It took me about 2 hours to write my blog post pulling it to pieces which illustrates how rubbish it was.
Last year in October I researched solicitors who had successfully challenged IFRs in the past and spoke to an expert who advised that my first IFR refusal had essentially fobbed me off and would be easy to challenged but I had left it too late to do so.
As the second IFR was submitted and subsequently refused I spoke to the solicitor again and we decided to go ahead and challenge it. Last week they sent out a letter before action setting out our case and this pulled the IFR Screening Group’s response apart far better than I did. Faced with it; NHS England should be rapidly back pedalling but that doesn’t mean they are. They have a track record of splurging hundreds of thousands of pounds of taxpayers money defending the indefensible. Quite often the costs they incur losing cases is typically 10 times what the treatment they refused would have cost. That’s the luxury of being publicly funded; you are not spending your own money and apparently you are unaccountable.
It is a bit of a risk for us as we are having to fund our case ourselves; should it go to court and we lose, we could be liable for NHS England’s costs as well as our own, and that could bankrupt us. Its a strange situation when your only means of challenging a taxpayer funded body is to take them to court. So at this moment we are waiting for their response to the letter before going further, but I estimate we are 80% likely to win so on we go. I can’t afford to repeatedly pay for this treatment myself, it just isn’t sustainable.
One spin off from engaging solicitors was that they put me in touch with a private doctor who was prepared to treat me with the drugs I want in the UK. My, how things have moved on in just a couple of years! Unfortunately the cost of this worked out at around £50,000.
We ummed and aahed and eventually decided to do it as it might keep me alive long enough to see the treatment I need become available on the NHS or for us to win our court case.
Then, last week, out of the blue my oncologist in Leeds rang me and told me that they have agreed to treat me as long as I fund the drugs. Hoorah! This is a much cheaper option as all the nursing care would be on the NHS, we think the cost should be just over £20k, so we’re obviously going for this to try and keep me alive a bit longer at least cost.
Its still annoying me that the only way I can get treatment (that I’ve shown works on me) is to pay for it myself but that seems the way the NHS is going. The newly announced 10 year plan for the NHS is pretty much all aimed at preventing illness rather than treating it. The logical conclusion is that when you get ill it will be be your own fault so the NHS will be reluctant to actually treat you as you obviously haven’t followed their advice! Not treating people saves them an awful lot of money.
We also read about Professor Angus Dalgleish and how he has been trialling an immunotherapy vaccine on various types of cancer with great success where other treatments have failed. So I contacted him to see if he’d make it available to me. Unfortunately he has been told he can’t make it avaiable to other patients until his current clinical trial is complete, and can’t add new patients to the trial. So that avenue is not available.
After my experience at Southampton I have started to worry about whether the immunotherapy drugs alone will work on their own, perhaps the vaccine was the key? That’s why I was interested in speaking to Professor Dalgleish. I may just be having a panic but I am starting to research cancer vaccines that target survivin (a protein that tumours surround themselves with to evade the attention of the immune system).
My General Condition
There’s no two ways about it, I am definitely deteriorating but it seems to be reasonably slowly. Unfortunately the tumour on the back of my head which i had radiotherapy on is still giving me quite a bit of pain. It is also the size of a small bird’s egg and is more noticeable than it should be as the radiotherapy removed the hair covering it. So I now have a very obvious pink lump on the back of my head. It seems to calm down overnight and get worse during the day which I don’t quite understand.
It would seem that my cancer seems to be concentrating on the back of my head and neck as I have a few other small lumps there as well. The result of this is that my neck and shoulders ache by the end of the day and I can only sleep on one side. Ibuprofen and Ibuprofen Gel are my friends at the moment.
We managed to get away skiing at the end of January to Belle Plagne in France. As in 2017, I found that going up a mountain when you are short of breath already is a pretty dumb idea but I wasn’t as bad as I was in 2017. I found that on ski’s I was OK and my muscles were strong enough to enjoy a few days skiing (easy blues and a good lunch) but walking around the resort was a bit tough. Great snow though and we both really enjoyed it.
I’m attempting to get the last few construction jobs done on our allotment, before the growing season and while I’m still capable, but I get tired after a couple of hours so it is a slow process.
So that’s that really, I’m still here but I don’t know for how long. I can still get around and do things but I do tire easily. I might even try and have a sail this weekend and pick up my trophy. I see my oncologist next week so should get the details of when they are going to start treating me and also try and sort out something with the lump on the back of my head and general pain relief.
Onwards and upwards!