Funding :S

I was just wondering about other peoples experiences of funding and funding committees. Basically I have been waiting since January for funding for Grazax which still hasnt arrived- I have a letter from the PCT saying that it is being considered by an 'Exceptional Funding committee'. Does anyone have any idea what one of these is? Also I was wondering what success people had had in getting funding for Xolair- my consultant has said he is going to write to the PCT again to ask for funding for this. Surely that's never going to happen if we havent even heard back about Grazax.

Feel free to PM me if thats easier than replying.

I'm just a little fed up of waiting around for funding- its not like it helps me in the short term. I just want to get on with things and get out running again. Its also getting to the point where my asthma affects my studies due to being overly tired. It just seems like they're beginning to give up on me :S

Sorry for the rant but I didnt know who else to ask.



2 Replies

  • Hi wherrers,

    I'm sorry you're having to wait to hear about these things, I know it must be really frustrating and it can feel like people have given up on you. However, they obviously haven't, if your case is going to the exceptional funding committee - they are still considering your case, so that is positive.

    Basically the Exceptional Funding committee considers funding on a case-by-case basis for things that don't fit in to the NICE guidelines (NICE is the National Institute for Health and Clinical Excellence, a government funded, but independent, organisation that publishs guidance and recommendations to the NHS on promoting health and treating ill-health. They have quite strict guidelines on the use of Xolair, which I presume you don't fit in to if you are struggling to get funding. They have yet to make recommendations on the use of Grazax).

    I have sat on a similar committee, some years back when I was working in Public Health, and unfortunately, decisions do take time. Anything that is approved for funding unfortunately means, in the realities of the NHS, that something else can't be funded and someone else has to go without. Obviously, then, the committee is keen to make sure that the evidence suggests that the treatment will be helpful - often there isn't much evidence available, but they like to thoroughly review that which is available. Depending on the area you are in, the committee may meet every month, every two months or less regularly, and after the first meeting where they discuss your case, they may need to go away and collect more information or evidence, perhaps in consultation with your GP, and then discuss things again. This all takes time, of course. I know it is extremely frustrating when you are the one who is waiting for the verdict, but they do have a responsibility to make sure that the limited NHS resources are used appropriately and wisely.

    Sorry not to have anything more constructive to suggest, there really isn't an awful lot you can do to speed things up. I hope this at least explains a little why it can take so long. I do hope you hear something soon... I know it is very frustrating not to be able to do outdoors type activities in this lovely weather because of grass pollen allergy, I am struggling with the same thing myself at the moment!

    Take care

    Em H

  • Thanks :)

    I understand it takes time. I guess its just the frustration. I want to go running and get fit again and instead am being subjected to yet more pred. (weight gain, stretchmarks, moodiness etc). Ah well. Hopefully at least one of them will be approved which might make a difference.

    I think with xolair i meet the IgE criteria, steroid use but never been admitted to hospital so dont know if that will affect it.


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