The other week I decided that the Individual Funding Request Screening Group shouldn’t get away with just screening out IFRs for dubious reasons with no means of review. I thought I’d test some of the guff the NHS comes out with (like in the image above). No public body should believe themselves unaccountable or above review. So I put in a complaint about the NHS, let’s see if it matters.
They told me at the end of November 2017 that they wouldn’t reply to me; my oncologist had to write to them to get an explanation of how they had reached their decision to screen out my IFR rather than send it for consideration by the National Panel, so he could then explain to me. In spite of how ludicrous this sounded I got him to write to them in December 2017, to date they haven’t replied.
So I wrote to them in September demanding they reply to him as they were breaching the NHS Constitution. They replied with a short letter saying they would reply “in due course”.
It made me wonder why they are not replying, maybe they cannot explain? Maybe they are just waiting for me to die?
So I went through the NHS’s Commissioning Policy: Individual Funding Requests to see if there was anything that they had done wrongly or hadn’t done.
Yes I am a pedant! But it was worth it.
I found the relevant paragraph on considering exceptionality (page 6), it reads:
“There is not a relevant NHS England clinical commissioning policy, NICE Technology Appraisal (TA) guidance or Highly Specialised Technology (HST) Appraisal guidance in place for the management of the patient’s condition or combination of conditions, and 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 for whom a service development should be undertaken.”
Now given the facts that I had already outlived anyone else that has ever had the same condition (The NHS states that the median prognosis is “less than 2 years from diagnosis” – I had already survived 3.5 years and nearly 5 now) AND nobody in the UK had ever received the treatment I had (because it isn’t available in the UK) AND nobody had ever responded to any treatment as well as I had: I just couldn’t see how my clinical presentation could not be considered “so unusual”.
A reminder of the reason the IFR Screening Group gave for returning the IFR to my clinician:
“ .. this patient is representative of a group of patients who have a similar condition and are at the same stage of that condition and who could potentially all request the same treatment. This makes it unlikely that Jeremy Thomas-Peter can demonstrate the necessary clinical exceptionality for an IFR to be successful.”
Now that isn’t the criteria they are supposed to apply, they are supposed to consider my clinical presentation to determine exceptionality, not whether there are other people with the same condition. So they haven’t applied the criteria correctly and thus they have screened out my IFR incorrectly.
So I’ve taken some advice and the first thing to do is complain formally, so that’s what I did. I complained that:
- The IFR Screening Group are breaching the NHS Consitution by not providing me with an explanation regarding why my treatment will not be funded.
- They are also breaching the NHS Constitution by not treating me with dignity and respect; they treat me with disdain and ignore corredspondence from both me and my clinician.
- They have not applied the criteria set out in the Commissioning Policy: Individual Funding Requests correctly, thus they have screened out my IFR unjustly.
I also stated the effects this was having on me; obviously my deterioration and probably death would be a direct result of their failure to properly consider my IFR as I have had no treatment for over a year but it is also affecting my mental health. I know there is something already approved for use within the NHS that could definitely extend my life and possibly cure me, yet it has been incorrectly refused. That is pretty stressful to live, and probably die, with. Its also pretty stressful for my wife.
My ultimate aim from this is to get my treatment funded and/or take the NHS to the cleaners so I can fund my treatment. I imagine that there will be some obfuscation in the meantime as the NHS hopes I will die before they get round to doing anything, but at some point an explanation or resolution to my complaint will be forthcoming. Depending on what it is we will then have something to consider accepting or challenging.
I sent a letter to the appropriate NHS address on 1 Oct 2018, I sent it recorded delivery so I know they got it on the 2nd. So far I haven’t received an acknowledgement which, according to the NHS complaints procedure they are supposed to do “no later than the third working day after the day the complaint is received”. I rang them up today and they confirmed they had logged it on the 3rd Oct and “sent it to management” on the 5th Oct. Nobody could tell me why it hadn’t been acknowledged but apparently “someone will contact me today”.
I am not holding my breath.