Postcode lottery is alive and well
Postcode lottery is alive and well A risk of geting to sound a bore on the subject, just wanted a moan about the PCT appeal for Herceptin I went to last week. Didn’t have high hopes before we went in and the rejection letter received yesterday just confirmed our suspicions that the entire process was indeed a farce.
Don’t have great faith in a system that ;
Can’t get the names of three appeal panel members correct in their letter informing me of the process.
Uses a position statement which my Onc informs me was drawn up without the input of specialists in the management of the systemic treatment of breast cancer.
Sends out a “draft” position statement which the panel that initially turned down the request (19/12/05) used but tells us in the hearing that the approved version went to MPs(???) at the begining of december 05.
Is only set up to review “exceptional circumstances” when compared to exisiting policy (they only told us this in the rejection letter).
The document is in my opinion a cost benefit (minimisation) paper rather than a clinical document .
The document refers to plans being made to make trastuzumab available for use in patients with localised breast cancer if and when this becomes a recommendation of NICE. The document then goes on to say that it is not appropriate to adopt this intervention as standard treatment with immediate effect. At the appeal the Public Health Consultant told the panel that as the it wasn’t possible to identifly exactly who would benefit most for this treatment (because the trials clearly show every sub group treated does) no one would be getting it pre NICE evaluation. Certainly not what the Secratary of State intended - medical grounds for non prescribing is my understanding.
The statement then does clearly say, patients do have the right of appeal on grounds of exceptional personal circumstances . Only included as they have to do this. As I have previously stated - this process, and the exceptional funding panel is a farce, they are not going to fund under any circumstances so the only thing achieved as far as I can see is keeping pen pushers in employment - and people wonder where NHS expenditure goes.
Really don’t know where I go with this now - I have emails for my MP and Patricia Hewitt and the press ready to send and take it from there I know my circumstances are not typical of the majority of people who are still fighting for the Herceptin they need, I’ve only got 3 more doses to go before I complete a years treatment and the bulk of my years course was paid for by private health insurance (still arguing that one - another story for another day). I’ll investigate the NHS complaints system. I can’t face taking this through the courts - I’ve got enough other issues to cope with (2 more lots of surgery in the next weeks). I worry about the other people locally who face the prospect of no treatment unless they can fund the process themselves.
If we acheived nothing else at the appeal I just hope we instilled a few doubts into a few minds that the current postion statement was indeed in urgent need of review.
If only … I had a magic wand and could wave it to alter things for you. You’re fighting so hard Sandra, not just for you but for all the others in your area (and, domino knock-on effect, further afield) who need this treatment. One feels so helpless - this postcode lottery has to go but how?
Something drastic has got to be done in the immediate future for the NHS to survive. I’m not a soap box orator and wouldn’t know where to start, but it makes your blood boil to see drugs being withheld from needy people purely on cost grounds. And now in our area operations have been cancelled because the budget has been used up and operating theatres are standing empty and the surgeons and staff sitting around with nothing to do! How much longer is the PM going to shut his eyes to all these problems?
I’m so sorry you have such a hard and crusty PCT - I think the higher you can take this now the better. Good Luck.
Love Judy xxx
slp I think the PCT’s weasely behaviour can be used against them. You’ve set out a very good case above showing where they are weak. I think they should be asked to respond to these specific points by local MP(s)
I think logic is a good weapon here. They are ducking and weaving and logic can cut through crap like that.
It may not work as the DOH may just close ranks, but it’s certainly a battle not yet lost. Also, very well done for your efforts so far.
speak soon
Daphne
How are you doing this? Hi Sandra,
Having just read your post I am amazed with all that you having to go through whilst you are still having treatment for this disease. How on earth are you managing to do this? It is a disgrace that anybody should have to do this. I understand that you must have this fight with the powers that be - but how can we support you?
Astonishing, and amazing well done!
Best wishes
Celeste
slp The Health Editor at the Sun newspaper is worth a call… She has been making calls to PCT’s over the last few months and her phone call to mine was only a day before my funding was agreed. She said to me that if anyone else needs her assistance she is happy to make these calls, the power behind these tabloids is not to be underestimated. You could email and ask for her help, I know she would do it as she has so many already.
I do think it is worth emailing everyone you possibly can. Patricia Hewitts office sent back a standard load of **** to both of my emails but I still feel they may have pulled some strings without telling me and losing face.
Hit all those send keys!!
Take care
Steph x