Individual Funding Request or IFR: I saw my pain... - NRAS

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Individual Funding Request or IFR

Stephenlangtonriley
Stephenlangtonriley

I saw my pain consultant yesterday, he looked and sounded very depressed while explaining to me that my caudal epidural treatment was finished, as funding was stopped by my local CCG, this is the 3rd of my treatments that they no longer fund, I was already prepared for this formal consultation and he came prepared with the complaints address about it. :)

I saw my GP today and gave him the hand written letter from the consultant so he printed out the IFR form and as he filled it out he had to google some of the acronyms they used, I hate government for inventing acronyms that no one knows about.

He said he has only had 1 request approved, all the others having been rejected. In my case they state that anyone with poor or no mobility is ineligible, but if I don't have it then that is exactly where I will be in 1-3 months time, stuck in bed, all because they didn't approve the injections arghhhhhhh, talk about chicken and egg.

So now I have to wait a month for an answer to something NICE accepted back in 2014 was a good teatment especially since they cannot operate on me, at best that has a 50/50 success rate and my bones, with worsening Osteopaenia, make the odds considerably worse.

I wait for an answer and in the meantime prepare for the formal legal challenge, it is not just me affected, certainly hundreds in the 2 boroughs that these 2 Hampton GP's have made the decision for and god knows how many other CCG's have taken these same decisions in these secret meetings?.

Acronyms;

CCG = Clinical Commisioning Group (local NHS funding)

GP = General Practioner (local doctor)

NICE = National Institute of Clinical Excellence (Central Government Quango)

5 Replies

Scarey times ahead for all of us me thinks 😡☹️ Wish they could feel what we do so they would realise what we suffer daily 😩😩

So true, I wish I could give it to those that make the decisions, for just one week as a day is soon forgotten, see how they react then.

I have no words. Well, I have plenty but perhaps Anglo Saxon would upset people. Fingers are crossed for you and fervently hope common sense and humanity prevail.

J

I'm so sorry Stephen, it's a real worry I understand. I fear this is happening more & more. My h for instance is under Mind Matters & on his third psychiatrist change. It's all to do with funding (what else) & who's budget it comes out of but how on earth are you supposed to connect & trust expected to be forthcoming with & open up about your worries & why you're being seen (!) when you only see the person for 6 appointments then shoved to another person to start the process over again, never getting far enough to resolve anything? Let alone the paperwork & questionnaire being duplicated each time. It's unsettling to say the least & for you to be left in pain because they're not allowed to treat people on their merits, that you need said treatment in order to allow you to walk with less pain, allowing you to at least move & not be reliant on another person whilst you're in pain fearful of moving for the pain. I know that's a lot of pain's but this is the crux of the matter!

I wish you success in your forthcoming battle & hope someone sees sense & is able to convince the powers that be so the decision is overturned.

Thank you, I am a champion of those less fortunate than myself. I received a very good education and am quite able to fight my corner whilst also on behalf of all those that cannot or are unable to articulate their needs. I am sorry you are having similar issues, far too much is made about funding when they ignore the waste as a result of their policies, repeating yourself to multiple clinicians wastes valuable time (and money) that is better spent with the patient. It took 3 years of seeing multiple consultants, each diagnosing a sysmptom, before I got so fed up with falling apart from the outside in that I did my own research. The final consultant agreed with my conclusions, so I finally had a diagnosis that put all the symptoms together and I know how it will progress, unfortunately downwards, in the future and all that can be done is manage the symptoms, my spine and osteopaenia being a totally separate issues but equally impacting, I am managing the first, the degenerative and genetic disease, it is the second, my spine that needs to be treated and if needs be I will pay the actual NHS cost myself but not an inflated private patient as I cannot afford that.

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