Hi MS Molly,
thanks for your post, you make a number of useful points.
Obviously Mount Vernon, The Royal Marsden and St. James Hospital must think Cyberknife works, otherwise they wouldn't have purchased it - but whether they have proof that it works is another matter. Moreover, even if there were proof (and actually Cyberknife has been the subject of over 400 peer reviews), I'm not sure whether the South East Coast Specialist Commissioning Group would accept the evidence - because they are adamant they will not fund Cyberknife until NICE approve it. From my point of view I have already had my Cyberknife treatment (which was paid for by Charity), so there is no point in me getting a lawyer involved now. Basically, I just want to ensure that all NHS patients can get funding for this treatment. But I'm afraid the only thing that will change their mind is if enough people put pressure on them - and it remains to be seen whether enough people will do this.
The South East Coast Specialist Commissioning Group are an unelected body, who are responsible for considering applications for specialist funding to eight Primary Care Trusts in the South East of England (covering Surrey, Sussex and Kent). I intend to prepare a draught letter for people to send to their MP's, and will send them out shortly.
thank you for offering to write to you MP, please see my answer to Caroline above.
I expect the only way you could get this Commissioning Group to reverse their decision is to supply a body of evidence and expert opinion that crushes their claims. Could any of the key personnel at Marsden etc help you with compiling a dossier of proof? The hospitals you mention have obviously done their own cost-efficiency analysis and found it to be beneficial. It would be good to get your hands on one of their reports. NHS hospitals' analyses should be available via the Freedom of Information Act.
I think you actually have a legal case against this Commissioning Group - given that 27 PCTs do fund the cyberknife. Can you get a tame lawyer on your side that is willing to do some pro bono work?
If there is something I can do
to help then I would be very happy to get involved. I seem to recall that the christie in Manchester did a joint bid with the marsden to achieve Their funding for this ( I may be wrong, my mind plays tricks) but I trust these hospitals and don't understand how they could invest heavily in it if it is so unproven?
Who are the South East Coast Specialist Comissioning Group? Are they an elected body. Certainly the situation does seem to be a post code lottery which is most unfair. Are there any stats to prove the cyberknife is clinically effective - if so how can they ignore them?
I don't really want to get involved in any campaigning but am happy to write a few letters(to my MP, PCT etc) if it helps.
The South East Coast Specialist Commissioning Group, are the body responsible for considering applications for non-standard treatment on behalf of eight Primary Care Trusts in the South East Coastal region (includes PCT's in Sussex, Surrey and Kent). The Group have issued guidance that they will not consider funding applications for Cyberknife radiotherapy under any circumstances - on the grounds that it is not proven to be clinically or cost effective.
This is very unfair for cancer patients in the Surrey, Sussex and Kent, because twenty seven PCT's elsewhere in the Country do fund it (pm me for a list if required).
The question that must be asked is if Cyberknife is not clinically or cost effective, why have Mount Vernon NHS Hospital just spent almost three million pounds purchasing a machine? Also why are NHS Hospitals ( the Royal Marsden in London, and St. James in Leeds), spending another six million pounds on purchasing machines in the next few months?
In my case, my treatment was paid for by charity (because funding was refused by the above Group), but a team of twenty four Doctors (including three Professors of Oncology), concluded the treatment would be beneficial - does the Groups conclusion mean tat these Doctors don't know what they are talking about?
I am now trying to campaign so that all NHS patients can receive this vital treatment no matter where they live. If you are prepared to help, please contact me.