Quite a few things have happened since my last post so I thought I’d do an update before Christmas (and other things) overtake me. A couple of rants but mostly positive (I think).
I submitted my complaint, it was eventually acknowledged and the letter said the Complaints team would begin their “Investigation Process”. This sounds good but as usual with the NHS; the reality didn’t match the guff.
What the complaints team did was forward my complaint to the Individual Funding Request (IFR) Team, who I was complaining about, and asked the to respond to me. Nothing was investigated and when I took this up with the Complaints Team they pretty much said “That’s it, if you don’t like it you can go to the Ombudsman”.
I complained about 3 things and the responses were as follows:
- Complaint 1: The IFR Team had not bothered to respond to my oncologist’s letter of Dec 2017 so I had not received an explanation of why my funding had been refused which breaches the NHS Constitution.
- Response 1: “We have no record of receiving that letter, however as you have enclosed it with your complaint it will be passed on and responded to.”
- Remarks on Response 1: No record of receiving something is not the same as not receiving it. I don’t doubt that they now have no record of receiving it, they wouldn’t would they? There were 3 other addressees on the letter and all received it so frankly I don’t believe the IFR Team didn’t receive the letter. Also, they still haven’t responded to the letter despite the fact the told me they would.
- Complaint 2: I had not been treated with dignity and respect by the IFR team and this also breaches the NHS Constitution.
- Response to Complaint 2: “We endeavour to treat all patients and their relatives with dignity and respect at what is difficult time for them.”
- Remarks on Response 2: Straight out of the NHS book of platitudes; it means nothing. The IFR Team steadfastly refused to engage with me citing their SOP’s and refused to give me any explanation of their decision. Endeavouring to do something isn’t the same as doing something is it? I’m endeavouring to beat cancer with no treatment, that doesn’t mean I’m going to achieve it. This is just continuing to treat me with disdain.
- Complaint 3: This was the important bit as I didn’t think they had followed or applied what was set out in the NHS Commissioning Poilicy: Individual Funding Requests. Specifically the policy said that “the patient’s clinical presentation is so unusual that they could not be considered to be part of a defined group of patients in the same or similar clinical circumstances” and they had not applied that they had just said I was part of a group so not exceptional.
- Response to Complaint 3: “The policy referred to was published on 1 November 2017 whereas the IFR was considered in September/October 2017 and so the Interim Policy in place at the time was applied”.
- Remarks on Response 3: This again is technically true but is pedantry of the highest order that only an NHS bureaucrat could come up with. The “interim policy” had been in place since 2012 (so not very interim) and is only relevant to the IFR Team. In the same way, any new policy would only be applicable to the IFR Team and they must have been involved in producing it. The response says “published” but doesn’t actually say when it came into effect which leaves a little doubt in the mind. So they knew the policy change was imminent but steadfastly continued to apply the old policy, a bit like the artillery continued to fire in WW1 on Armistice day right up to 11 am.
This reply is not going to be subject to any scrutiny or checking, the IFR Team wouldn’t be lying or disingenuous would they? As far as the NHS is concerned my complaint has been addressed.
I was pretty annoyed at all this, essentially I have been fobbed off yet again. I sat down and wrote a 5 page reply which may have descended into a rant in a number of places, but I never sent it. The next day I looked at the letter again and saw another part of the response to Complaint 3 which said “.. if your clinician re-submits your IFR with further evidence, it will be considered under the new policy.”
Now, are they just pretending as always that there are options open to me or is that a door left invitingly open? The only way to find out is re-submit the IFR and find out.
So I grovelled to my original oncologist, apologising for the time I was taking up and asked him if this could be done. He was more than helpful; he agreed to do it, suggested other evidence that we could include (scans after the treatment in Southampton and 6 months later) and we added the points from his 2017 letter into the exceptionality clarification (I’ve lived far longer than anyone else with this condition ever has, I have already had the treatment and showed it works while nobody else has, I am much younger than the 70+ age that most people are when they get this condition). We also added the statement “this patient’s clinical presentation is so unusual that they could not be considered to be part of a defined group of patients in the same or similar clinical circumstances” so the IFR team have to actually disagree with that in order to screen out the IFR .
The IFR had to then do the rounds at the local level and be re-approved by all the people who had approved it first time round (wasting their time as well) and was submitted to NHS England at the end of November, so I’ll probably hear something after Christmas.
Incidentally, I found a solicitor who has successfully challenged IFR refusals in the past and ran my IFR case past him. He was really helpful; he looked over all the documents I sent him (over a weekend, no charge) and replied that I had clearly been fobbed off and had an excellent case for taking my case to a Judicial Review and winning. However I had left it too long so the IFR would have to be resubmitted and if it is turned down again it should be challenged immediately.
The downside of this is that taking things to a judicial review can be very expensive and in his experience the NHS spared no expense in defending their decisions. They can use taxpayers money and appoint the best solicitors and QC’s whereas I have to fund it myself. Anecdotal evidence suggests that they do this to discourage people from challenging them due to the cost. We are investigating doing this on a budget as if I had the money to fund it I’d rather spend it on treatment. Optimistically we may not need to do it but I’m not optimistic where the NHS is concerned.
As I said, my IFR has been resubmitted so there is a slim possibility I may get immunotherapy funded sometime next year. If I don’t I doubt I will see Christmas 2019.
My cancer has started to gain the upper hand again. The main indication is a decent sized lump on the left side of the back of my head which is giving me a bit of pain. It appeared whilst we were on holiday and I couldn’t take the cannabis oil for 2 weeks. I also think a similar lump is brewing on the right side of the back of my head, both lumps are at the site of my occipital glands which showed up on my last scan as tumours.
I’m just about to start 5 blasts of radiotherapy on the LHS lump which hopefully will shrink it down and kill it off. I might need the other one doing next year. I will lose a bit more hair but if it keeps me going a bit longer I don’t mind. My main worry is that I will end up with tumours in my brain again, not much I can do about it though.
I continue to take Cannabis oil/paste during the day and before I go to bed. During the day I take a sativa based oil which is high in THC then before I go to bed I take between 1.5 & 2 gm of cannabis paste that is a Sativa/Indica blend which gives a 1:1 ratio of THC and CBD. I’m sure it is helping to keep the cancer in check, it had better be as it isn’t cheap!
I’m still trying to eat well, not drink too much and also take various supplements. The main supplements are AHCC to boost my immune system and Vitamin D as I’m not getting much exposure to sunlight at the moment. I’ve stopped taking the Celebrex again as I think it has upset my digestive system.
I continue to generally feel well though my visits to the gym are less regular than they were, I’m sure I should hibernate through the winter as I have real difficulty motivating myself to do anything.
I sailed all 3 races for the first 3 weekends of the club Frostbite series and if my calculations are correct the results of those 9 races will be enough to win the series. I definitely didn’t expect to get my name on a club trophy this season so that’s quite a bonus. But I think I’ll leave it until warmer weather returns before sailing again.
We took the plunge and booked a skiing holiday for the end of January. I was pretty reluctant to do this as it is a lot of money to waste if I deteriorate rapidly in the new year. But we weighed things up and decided it would be better to go where we want to and get some decent accommodation rather than take our chances on the last minute market. I do feel really well so its likely I’ll still be OK to go skiing.
So I’ve just turned 61, a birthday I didn’t expect to see a couple of years ago and my next event is Christmas which I always enjoy. After that is skiing and then who knows? Onwards and upwards!