Hi Lemongrove, thank you so much for posting a reply, I have PM’d you.
This is difficult for me, I’m very good at standing up for other people, not so good when it comjes to speaking up for myself. I’ve decided to speak up on behalf of my son who deserves a chance of growing up with his Mum, hopefully that will make it easier!
Being inbetween Oncologists is probably a good time to seek a second opinion really. My GP has been very supportive but not really involved in my treatment so far. I think it might be worthwhile seeing her in the first instance.
I’m wondering how on earth does one go about collating evidence on this? So far I’ve saved dozens of links but obviously need to put some sort of convincing report. I’m not sure that my brain is ready to operate at that level yet, the sound of the Countdown clock booming in my ears isn’t helping!
Read postings about cyberknife and tomotherapy wonderig if either would be beneficial for my mother. She has bone and liver mets with some spread into the abdonum. Recieving erupicin( i think thats how its spelt) chemo and seems to be helping, Bilirubin level coming down. She is also getting quite breathless, she does have chest infection at mo( on antibiotics), but wondered if it could also be side effect of chemo or from ascitis. Wondering if cyberknife or tomotherapy might help and also if anyone suffering from breathlessness etc.
Wendy - a good place to start would be googling the MD Andersen Centre in Texas and oligometastatic cancer - I’m pretty sure there is an article summarising the case for aggressive treatment of early mets.
Thank you Finty, I’ll try that. I’ve got loads of stuff, but I’m assuming it’s quality rather than quantity I’m looking form.
I did find this article jnci.oxfordjournals.org/content/102/7/456.short. You can link to the full report from there. It’s interesting reading but I’m not 100% sure that it’s relevant in my particular case. I’ll give it another go once my mind returns from wherever it’s wandered off to!
Well I refuse to stumble at the first hurdle. Went to see GP about requesting second opinion of appropriateness of Cyberknife for my liver mets (armed with file of selected documents to put case across and he did claim he knew nothing about it so did listen to my info). I could not see my own GP for over a week so had decided to see another one - he does not want refer me for second opinion as he thinks I need a letter from my consultant before he can do this - I pressed him hard on him directly referring me. In the end he suggested I went privately for a second opinion to get it quickly! So then asked PCT for guidance -seems a second opinion is not a “right”. So will now dispatch by hand info to my GP who is the principal GP in the practice to get her opinion. Has anyone else ever had a request refused? Is this a sign of the times in cuts?? This coould be a very long sage - thanks for your support so far! Isn’t it bad enough having this disease without having to wade through this treacle of misinformation and lack of clarity of procedures!!
Fran
As you are probably aware by now via my previous posts I am not upto speed with all this cyberknifing etc!! But that doesn’t sound right at all to me you have a right to a second opinion surely without having to pay for it privately, it must be under some human rights directive or the like to protect the patient. Could you contact your local PALS or Mcmillian, they know all the protocols and i have found them very helpful in the past with a variety of matters.
Xx
Thanks Dawn - this is what I’d found out today… am waiting for PALs to get back to me too as it was them that I talked to at the PCT. Seems incredible that you can’t ask for advice from another hospital that has an araa of expertise that you own hospital does not have… The doctor was so willing to suggest that I go privately that I do wonder if it’s a cost issue… If GP is not helpful tomorrow I’ll try going through my consultant but I think that will take some time…
Thanks again Dawn and Mackers for getting back to me with this info
Fran
Hello MrsBlue,
Just a line to respond to your question, You said, “The information on the petition page says “Twenty eight PCT’s around the Country do fund Cyberknife, but not one of these is in Surrey”… but the Sutton Royal Marsden Hospital is in Surrey. Lemongrove, please can you clarify”.
Currently the situation is that three hospitals in the South East have purchased Cyberknife (these are Mount Vernon, Barts, and The Royal Marsden). The Royal Marsden have not started accepting patients for Cyberknife yet, but when they do it will be at their London Hospital, rather than Surrey. However, I think at the root of your question is a common misunderstanding. People believe that if a treatment is available within an NHS Hospital, and a patient is referred for treatment, that treatment will automatically be funded. but this is not the case. Treatment such as Cyberknife are considered non-standard, so the PCT in which the patient lives, have to agree to fund treatment, and as it stands not one PCT in Sussex, Surrey or Kent will fund Cyberknife.
It really is a crazy situation, and that’s why we are trying to campaign, and need everyone to join in.
Very best wishes,
Yes, PALs were very helpful - we don’t have an automatic right to second opinion but it’s rare for one not be be granted so my GP needs sorting out… PALS did give me info on Commissioning Policy for Individual Funding Request (IFR) procedures if I want to apply get PCT support with having treatment at another hospital and I’ve found on the web the Commissioning Policy for IFRs to the European Union. Problem is all these referrals take up to 20days (time given for Panels to meet) and might involve an appeals process as well. I found the Patient Liaison at my PCT really helpful and proactive in suggesting they’d send out info to me. As Lemongrove says - it’s currently the PCT who hold the purse strings on decisions about payment for treatment at another hospital
Hope this helps you too
Fran