In my last post you may remember that my solicitor sent a letter before action to NHS England essentially ripping the Individual Funding Request (IFR) Screening Group’s response to pieces and pointing out that essentially NHS England were denying my right to life which is against Common Law and breaches my human rights. We didn’t expect much from it as NHS England are usually happy to spend unlimited amounts of taxpayers money defending their stupid mistakes.
Much to my surprise we received a letter from NHS England’s solicitors which, in amongst the bluster, sneering and denials that our claim had any merit, stated:
In order to provide your client with further assurance that the IFR has been fully considered, our client proposes to refer this matter to an IFR Panel at the earliest opportunity.Solicitor’s letter 22 Feb 2019
Wow! Despite a lot of bluster that that there was nothing wrong with the Screening Group’s decision (“soundly based” was the laughable phrase used) and “without prejudice” to their client’s position, they have actually moved the IFR on to the next stage.
But the phraseology used seemed a bit strange; “provide your client with further assurance that the IFR has been fully considered” sounds very much like the IFR Panel have already made the decision. They also said that the IFR Panel members would not be told there was a legal challenge “and will consider this matter afresh”.
Now I’ve dealt with NHS England’s bureaucrats and pencil pushers long enough to know they are not to be trusted and this all seems like them continuing to procrastinate. In terms of procedure; presumably an IFR going before the IFR Panel will be presented with the IFR Screening Group’s response and decision attached. To me this means that the IFR Panel will wonder why they are looking at a IFR which has been refused by the Screening Group. There’s a possibility they won’t get past that stage and even look at the IFR, why should they if they don’t know about the legal challenge? So we have insisted that the Letter Before Action be included as well. No idea yet if this will happen or if it will help.
But in any event, we have progressed a stage and the next IFR Panel is on 6 March (next Wednesday) so we’ll see what happens. I’m not getting my hopes up about them approving it as I think NHS England are just going through the motions, but they have to produce a decision and give reasons for it and I believe there is a clear route to appeal their decision (which isn’t the case with the IFR Screening Group. So we’ll wait and see what happens and deal with it when we know.
As Leeds St James has agreed to treat me if we fund the drugs we’re going ahead with that and my treatment will start on 2nd April 2019. I wish it was sooner as my cells don’t wait for things, they continue dividing and attacking me, but at least I am going to get some treatment which could keep me alive for another year or so. In that time the NHS may license some treatment for my condition so I won’t have to continue funding it myself.
That’s also the reason we’re going to continue challenging NHS England to approve funding for treatment. We cannot sustain paying around £20,000 for 4 rounds of treatment each year and ideally I should have a longer course of treatment, possibly with higher doses of the drugs, if I’m to have any chance of beating this thing. At the moment it is one step at a time and staying alive is the priority. I have now reached 5 years from diagnosis which means I’m officially a cancer survivor, although I don’t feel like one.
Herbactive is run by a chap called Alan Hopking who has been a practising herbalist for about 35 years. I’m always a bit dubious about these sort of things as there is generally a lack of information regarding how effective the treatment is and you have no idea whether you’re dealing with a charlatan or not. I can’t actually remember how I found the site if I’m honest.
Anyway, I dropped Alan an email back in October, told him about my condition and treatment history and asked for his advice. He answered straight away and recommended the following:
- HerbShield Tonic
- Black Salve Strong Internal Tonic
- Cannabis CBD Oil
- LymphCleanse Tonic
- ABC Daily Powder
I find his web site pretty difficult to navigate (I couldn’t find a decent link to the black salve tonic) but having read about what he recommended it all seemed to make sense. So after a bit of procrastination I ordered some small amounts at the end of December and gave them a try. I’ve nothing to lose really by trying them.
I actually think they are doing me some good. Over the last couple of months I’ve gone from being quite lethargic and spending most of my time in my chair watching television or playing poker to actually feeling motivated and wanting to do things again. I also feel really well and I was starting to look a bit grey again but my colour seems to be coming back. I don’t know if it is attacking my cancer but I think that the combination of cannabis products I’m taking together with these herbal remedies are slowing down its progress.
The downside of these potions is that they taste appalling! But I think they are doing some good so I put up with it. I suppose if they tasted better I wouldn’t trust them at all. I’ve ordered some larger quantities now and have got them into my daily routine of pill popping, potion taking and unction applying.
My feeling so good could be down to other things as well; with a couple of news outlets interested in looking at the IFR process, getting the solicitor on board to take on NHS England and getting some treatment at a not too ridiculous cost; I finally feel that we’re not on our own trying to stay alive. Also, I’ve had a badger at MacMillan as I’m sick of seeing their adverts on the telly and social media saying how much help and support they provide to cancer patients; I haven’t seen anyone for 3 years! A home visit is scheduled for next week but I had to go to my GP, my oncologist and my psychotherapist to get somewhere, so we’ll see. Spring is in the air as well so I might be getting over my winter malaise (I’m sure I should hibernate) which all helps.
So, as ever, onwards and upwards!