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Important information about NHS funding for Cyberknife treatment. Please read

10 REPLIES 10
nicky08
Community Champion

Re: Important information about NHS funding for Cyberknife treatment. Please read

Bumping up for Wensteed

belinda
Member

Re: Important information about NHS funding for Cyberknife treatment. Please read

Bumping up for Olives.
Guest user
Not applicable

Re: Important information about NHS funding for Cyberknife treatment. Please read

Lemongrove, Thanks for explaining.

Jen.

Lemongrove
Member

Re: Important information about NHS funding for Cyberknife treatment. Please read

Jenane, as I said in my post

The reason NHS England only fund stereotactic radiotherapy for two types of cancer is that they have based their funding policy on the recommendations of a report published by the National Radiotherapy Implementation Group in 2010/2011. This report looked into the eficacy of SBRT and SRT, and concluded that funding for this treatment should be limited to Cerebral Cancer, and Primary Inoperable Lung Cancer, and that all  other  types of cancer,  should be funded within a trial setting .

Thus  the expectation was that patients with other types of cancer would be able to access treatment within a Trial setting, and that these Trials would provide more evidence to support the more NHS funding.

 

However this just hasn't happened. The Government have handed over responsibility for recommending which cancers should join the list eligible for NHS funding to an organisation   called the United Kingdom Stereotactic Ablative Radiotherapy  Consortium. Trouble is, this organisation are not answerable to the Department of Health, and almost three years later, this group have yet to make any recommendations. 

 

You may ask why this organisation have not made any recommendations, and the short answer is because there is not a single Trial going on in the  UK to evaluate stereotactic RT for other cancers.

Why are there no Trials - because,the  pharmaceutical industry is not interested in radiotherapy research, and  Government funding for research is extremely difficult to get.

 

Julesie
Member

Re: Important information about NHS funding for Cyberknife treatment. Please read

Hi Lemongrove. I can't find the online petition. Could you please post a link so that I can sign. Tx
Buffy3
Member

Re: Important information about NHS funding for Cyberknife treatment. Please read

I am quite shocked about this. Many of us may need the ck at some stage 😞 This just makes for fat fewer treatment options which can potentially extend lives. I have signed to petition. Thanks for the information. xxx
SP0
Member

Re: Important information about NHS funding for Cyberknife treatment. Please read

 

I'm trying to think of a useful reply... but am still speechless! 

 

I've signed the petition and will raise the issue whenever I get a chance.  By replying at least we keep the thread high up the list for others to see.

 

thanks Sarah.

MaraUk
Member

Re: Important information about NHS funding for Cyberknife treatment. Please read

Lemongrove Thanks for the important information on cyber knife . Can you help Iaccording to my GP my treatment pot know comes under NHS UK for all treatment such as demnusub injections they now have the final say. Thanks Mara
Guest user
Not applicable

Re: Important information about NHS funding for Cyberknife treatment. Please read

'The problem is that since NHS England took over responsibility for  funding from local Specialised Funding Groups,  only two types of cancer are now eligible for SBRT and SRT funding.'

What made them decide to fund only 2 types?

 

The UK Stereotactic Ablative Radiotherapy  Consortium - what are they there for?  Not answerable to the Dept. of Health, & Anna Soubry says (Apr.'13) any questions, just ask them. 

Lemongrove
Member

Re: Important information about NHS funding for Cyberknife treatment. Please read

Just replying so that the post appears.

Lemongrove
Member

Important information about NHS funding for Cyberknife treatment. Please read

As a few of you will know, in October 2010, I had Cyberknife Stereotactic Radiotherapy for skull mets. At that time my treatment was paid for by a Charity as my then PCT wouldn't pay for it (post code lottery and all that). After my treatment i resolved to campaign to make funding for this potentially life saving treatment more widely available for all cancer patients who needed it. As a result I helped set up a charity called:

www.ukcknetwork.co.uk     and   set up an online  petition which has been signed by over 3000 people.

 

However i regret to say that funding has got markedly worse this year and I would like to explain why to help raise awareness, encourage others to share the information, and hopefully inpire people to ask more questions about this from the powers that be.

 

Basically,  up until the 1st April 2013, if a Consultant felt a patiient required treatment  not routinely funded by the NHS  such as stereotactic radiotherapy ( Cyberknife or Gamma-knife), they would  apply to the patients Primary Care Trust, and the PCT  would then  forward the application to a local Specialised Commissioning Group.

But this led to an unfair  postcode lottery where funding decisions woud  vary from one place to the other.

To counter the potcode lottery and ensure more consistent funding arrangements the Government set up a national commissioning  group  called NHS England, and since the 1st April 2013, all applications for individual funding are sent to them.

 

The problem is that since NHS England took over responsibility for  funding from local Specialised Funding Groups,  only two types of cancer are now eligible for SBRT and SRT funding. These are Cerebral Cancer  and Primary Inoperable Lung Cancer.   Patients with any other type of cancer are ineligible for NHS funding.  This means that people with Secondary BC who have lung, liver, kidney or  Spine Metastases would not get NHS funding.

 

The reason NHS England have adopted this funding policy is that they  have followed the recommendations of a report published by the National Radiotherapy Implementation Group in 2010/2011. This report looked into the eficacy of SBRT and SRT, and concluded that funding for this treatment should be limited to Cerebral Cancer, and Primary Inoperable Lung Cancer. All other  types of cancer,  should be funded within a trial setting .

Thus  the expectation was that the promise of funding for Trials  would lead to  more evidence becoming available,  and the list of  cancers, eiligible for NHS funding increasing.

 

However this just hasn't happened. The Government have handed over responsibility for recommending which cancers should join the list eligible for NHS funding to an organisation   called the United Kingdom Stereotactic Ablative Radiotherapy  Consortium. Trouble is, this organisation are not answerable to the Department of Health, and almost three years later, this group have yet to make any recommendations. 

 

You may ask why this organisation have not made any recommendations, and the short answer is because there is not a single Trial going on in the  UK to evaluate stereotactic RT for other cancers.

Why are there no Trials - because,the  pharmaceutical industry is not interested in radiotherapy research, and  Government funding for research is extremely difficult to get.

 

An MP called Tessa Munt has repeatedly taken up  cases of cancer patients who have been refused funding for SRT, and she recently raised a Parliamentary question to   the Health Minister about this (which was reported in Hansard).  I was so disappointed with the Ministers reply that I  added an annotation which will appear in the margins of Hansard. Hopefully someone will read it - but I won't hold my breath.

I have copied this Annotation at the bottom of this thread, for people to read it if they're interested

 

In the meantime I hope people realise that this policy is costing lives - and could effect anyone who  irequires Cyberknife or Gamma-knife.

If you don't believe that, google the story of   Nadejah Williams (which has been reported in several newspapers recently). Nadejah  is  a 23 year old young lady who  has inoperable bowel cancer. Her Doctors have said her only chance is stereotactic radiotherapy, but despite two funding applications and an appeal, NHS England have refused funding and she has now been told she has just a few months to live.

 

Anyway this is my Hansard annotation for anyone interested: 

Just not good enough Anna. Since NHS England took over from local Specialised Commissioning Groups on the 1st April 2013, SBRT and SRT is now only funded for two types of cancer - Cerebral Metastases, and Primary Inoperable Lung Cancer. This means that cancer patients with any other type of cancer cannot get NHS funding for SBRT or SRT. This is shocking because it is costing lives, and because SBRT and SRT are readily available for most types of cancer in nearly every other developed nation. 
 NHS England have based their funding policy concerning SBRT and SRT on a report published by the National Radiotherapy Implementation Group in 2010/2011. The report concluded that SRT and SBRT should be funded for Cerebral Metastastases and Primary inoperable Lung Cancer, and within a trial setting for all other types of cancer.

So there was always the expectation that as more evidence came along, other types of cancer would be funded.  But when will this be? We are told that recommendations to expand the types of cancer suitable for NHS funding has been delegated to The United Kingdom Stereotactic Ablative Radiotherapy Consortium. They apparently will look at any new evidence and make their recommendations. But when will this be and more to the point - given that there are no trials going on in the UK to establish new evidence, what will they base this on?. 
Delegation is a reality of Government but some things are too important to delegate. Ultimately the Government are responsible for the NHS, and if the NHS cannot offer cancer patients life saving treatment because nobody is taking responsibility for what treatments are funded, the Government must step in to shake things up.

 

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