Update 2 to Cyberknife Campaign -important info

Just had an Email from the person who is coordinating the Cyberknife Campaign for The Royal Marsden and Mount Vernon. They had a meeting with the South East Coast Specialised Commissioning Group last week about the funding issue, and it apparently went very well - SECSCG are at least willing to listen now.
Anyway they are having another meeting in April, and MV are presenting new compelling evidence that they hope will see a turn round.
It has been suggested that it would be helpful if people who have signed the petition would write to their MP’s. Consequently, I have asked the campaign coordinator to draft a letter, which I will make available for people to download.
If you are willing to send the letter to your MP, please will you indicate below.

Hi Lemon Grove no probs although I live in an area where they seem to refer. Do they only want letters from people in the right area? x

I’m willing to write to my MP. Stella

Hi,
More than happy to write download leter to MP. Good to hear things seem to be going well - well done!
Julie

Yes I’ll do it too. Would it be helpful to send a copy to the practice manager of our surgery or do they have little influence?
cheers
caroline

of course i will be willing to do it, much easier with a download letter though, when will that be available.
Sallie

Worth noting where the Royal Marsden go others will follow eventually.

I am happy to write a letter to our MP

Hi I am willing to write to my locl MP had my rads at MtV and live 50-60 mins away but no local PCTs fund cyberknife. Jackie

Hi Lemongrove

I have signed your petition, but I am not in your area. I am in the North West and Clatterbridge has just bought a targeted radiotherapy machine, so it looks like treatment may soon be available up here. Also with regards to my MP, I don’t think I’d bother with him again! Last October I asked him to sign some early bill about secondary cancer awareness and he refused as ‘the government are doing more to improve detection rates…’ He actually wrote me a letter explaining all that is being done for cancer patients. It was actually a generic letter, he hadn’t read (or probably understood!) the issue I was trying to get across.

Sorry I have just read this back and it sounds like…‘we’re alright up here, so sod everybody else :0)’ this is not what I meant, I meant that our MP would be no use at all! But I do wish you well with your campaign.

hi lemongrove
well done and if it helps will gladly write to MP when you have the letter ready to download.

Lucinda xx

Hi there

pretty new here but found this very interesting. I was just wondering about this new radiotherapy treatment (novalis tx?) i read an article in newspaper but this seemed to slip under the radar as there was nothing on news channels that I could see, to me it seemed like big news. I live near Edinburgh and read there would be a machine there 0around June but not clear if it would be used as another treatment or “not be available” I have mets, small tumours in liver and info I read seems to suggest this could be treated by this, but agsain don’t know what the score is, was goin to ask at next appointment but as usual will probably get cold feet about asking things (don’t know why) Would be good to find out more about this

Kiwi2

Hi
Yes I would sign/send when the letter is downloadable.

Re: draft letter. I’m waiting for Marsden/Mount Vernons campaign coordinator to provide it. I will then Email everybody who has signed, and provide letter.
They are also going to provide a list of MP’s they particularly want targeted.

Hi, I signed and am happy to write to MP. Not sure if mine is one that will be targetted. Am just at the start of this journey, at surgery stage, so not onto followup treatment yet but I think its so important that we all have access to the latest available.
Well done you for getting proactive!
Wandyx

Just bumping

Hi,

I am willing to sign and send letter. My MP is the Minister of State for the Department of Health and I am under the Royal Marsden so this should be “just up his street”!!!

Marjay

Only just saw this thread.I am willing to write to my MP,I haven’t a clue who is my MP but will find out.

Love Melxx

Lemongrass

Do include me - now sure what is happening in my area but will write to MP and will find out (pressure on forests has helped and my MP has changed her tune so let’s keep up pressure on BC issues!)
Fran

I’d sign, definitely
Ann

Just another little nugget of info.
As everyone knows, the funding ban implemented by the South East Coast Specialised Commissioning Group is based on cost grounds - and to be fair treatment in the private sector is expensive (£22,000 for a course of treatment). However, I have just received confirmation from Mount Vernon NHS Hospital that the amount they charge PCT’s for a course of Cyberknife treatment is approximately £7,500.
When patients are referred for Cyberknife it is usually a last resort, when other treatments such as surgery or conventional rads are not an option. This means that when patients are refused funding, they are also being refused their last chance. Should people be denied their last chance for the want of £7,500 ?