He’s taken on the NHS and got drugs and better funding for cancer patients everywhere.
But his work is not over. This month Clive Stone reveals why fewer drugs being sanctioned for use and wants answers to why a planned gamma knife centre in Oxford was suddenly shelved
Living with this cruel disease is like a scary roller-coaster ride throwing up different challenges, almost on a daily basis.
Cancer patients feel particularly vulnerable, as not only are we living with the effects of the most commonly feared disease, but we are also exposed to ever changing healthcare politics.
We fear that the excellent Cancer Drugs Fund (CDF) may be used as a political football by successive governments, unless it is permanently adopted, which may be a real vote winner with another General Election approaching.
The National Institute for Health and Care Excellence (NICE) already appears to sanction fewer drugs now they know that we can use the CDF, which is still only a temporary fix and will soon run out of funds at this rate.
‘We don’t choose to be ill’ Many say we are too expensive, but cancer is now said to affect one in two people.
We don’t choose to be ill but if we chose to abandon cancer patients then will there be any point in further cancer research for our children and the coming generations? We face challenging healthcare issues as we require quicker diagnosis, smarter, more efficient delivery systems, and greater use of modern technology, including home visits where possible.
In 2011 a report from 37 cancer experts said that our drugs were too costly, gave false hope, and cannot be justified.
Yet I know of many cancer patients who have been on drugs for over five years and still have a good quality of life.
That report was highly offensive to many, and I have my own thoughts about the reasons behind it.
It’s devastating enough to have such a diagnosis, without having to also carry the guilt that we are considered a waste of valuable resources.
I believe that “hope” is an essential part of the human spirit, as none of us knows what new drug or treatment will one day become available.
Take away hope and we have nothing and it’s so imperative to stay positive.
Research is moving along at a pace with interesting innovative new techniques coming forward.
So I strongly disagree with these “experts” as I have seen patients survive for many years whilst enjoying a full and active life with the right treatment.
“Hope” is very important to me and is an integral part of my Christian faith.
Although retired I continue to contribute both my time and energy into various projects and have an excellent quality of life, supported by many loyal friends.
‘So much still to do’ So I feel that I may yet still be of some little value as life is far too interesting and there is still so much yet to be done.
Last time I mentioned that my 34 brain tumours had been successfully treated.
This was thanks in the main to the brilliant Gamma Knife (GK) teams in Sheffield with their cutting edge accurate non-invasive technology.
I am due to have another brain scan next month to monitor progress, which will be a further challenge.
‘Manor plans scrapped’ After my own very successful outcome to date following GK surgery, I was extremely disappointed to learn that, at the very last minute, NHS England appear to have withdrawn their support for the proposed new state-of-the-art Oxford Gamma Knife Centre which will now not go ahead.
The centre would have been built at the Manor Hospital and would have catered for both private and NHS patients.
Additionally, much use would have been made of the centre for various research projects in view of its close association with Oxford University.
The agreed funding was to be shared between the University of Oxford, Nuffield Health, and the NHS.
The project was supported by senior neurosurgeons and would have been ideally located for patients in the South East, as already units are being closed elsewhere thus reducing patient access.
Once again patients appear not to have been considered in this decision.
It has cost me over £200 each time to get to Sheffield and back as I needed to be accompanied home.
How will patients manage such a trip if they are disabled, unwell or unable to afford to travel?
I am trying to determine the reason for this U-turn from the powers that be, and hopefully I will one day manage to find the truth behind this decision.
I was interviewed by a national newspaper immediately following this U-turn who said NHS England declined to comment.
This is really not good enough and says little for accountability and transparency in our newly configured NHS which after all is funded by us, the taxpayer.
Thanks to all the team at the Churchill Radiotherapy Department the new painful tumour in my spine has been treated and at last I can sit at the computer.
We are indeed lucky to have such excellent facilities on our doorstep.
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