He’s taken on the NHS and got drugs and better funding for cancer patients everywhere.
But his work is not over. This month, after a well deserved holiday, Clive Stone continues his daily chemo routine and continues his fight against the decision to cancel the proposed new Oxford Gamma Knife Centre
I feel refreshed and ready for action, having returned from a relaxing few days in Suffolk, thanks to the kind hospitality of my cousin and his wife. It was my first break away for a few years and much appreciated.
I have now returned to face the stark reality of my basic home cooking and the daily chemo regime, whilst I await my next scan to see what my cancer is up to now.
These are the times when I find prayer a real comfort to me, and I realise just how much I miss my wife. Jan was also an excellent proof reader and kept me on the straight and narrow, as I do go on a bit.
At long last we have received a reply from NHS England (NHSE) to my fellow supporter’s email of March 18, concerning the last-minute decision to cancel the proposed new Oxford Gamma Knife Centre, despite all the arrangements and funding being already in place.
They still fail to fully answer our questions as to why it was withdrawn at the 11th hour, and there are further issues I wish to challenge.
We will respond to their reply in the next few days, and hopefully I will be able to let you know the outcome next month, depending on the timing of their response.
I do find it hard to believe that it takes so long to reply to such a simple question when they have a communications team in place, whilst at this end it’s just a few unpaid volunteers supporting each other, who also have to deal with fighting illness.
One of the drivers for these new nationally commissioned specialised services like Gamma Knife is to end the variations under the “postcode lottery” for patients living in different areas. On the face of it this is welcome, as long as even more patients are not denied access to these necessary treatments.
From what I have read, it appears that the new systems make decision-making slow and innovation seems to be more difficult according to a recent article in the Health Service Journal (HSJ).
Also, delays by NHSE were mentioned as slow delivery in the HSJ press article where patients are said to be denied access to some innovative new treatments due to a “lack of pace” and hierarchical decision-making by NHSE.
As an example of this, HSJ mentions “a district general hospital that purchased equipment to carry out robotic surgery and has been unable to use it as NHSE is not commissioning providers which were already delivering the service before April 2013.”
This has left patients having to travel to alternative hospitals almost 90 miles away or undergo more invasive forms of surgery.”
This is exactly the scenario which worries me, as I now have no idea where I will be treated, or indeed if I will be treated, under this tough new regime, if my brain tumours return. All this uncertainty does very little to help patients with cancer, as it is very important for us to face each day in a positive way, as I have seen just how quickly cancer can take over when patients lose the will to live.
Now that cancer is expected to affect one in two people, patients should be afforded a much more timely and compassionate approach by NHS decision-makers as well as by those in government to help us to navigate through the ever increasing bureaucratic minefield to enable us an easier way to find available treatment options.
Our battle to win swifter access to innovative radiotherapy was raised in the House of Commons by Grahame Morris MP, in an NHS Opposition Day Debate on July 17, 2012. He reminded them that I had asked the Prime Minister for more money to be switched from the Cancer Drugs Fund, then standing in a huge surplus, to fund radiotherapy. He mentioned that radiotherapy is involved in 40 per cent of cases in which cancer is cured.
Also radiotherapy by itself now cures 16 per cent of cancer patients. By contrast, cancer drugs are the main cure of only two per cent of cancer patients.
Ministers and the Department of Health should accept that radiotherapy cures more patients than drugs, that current radiotherapy allocations are inadequate, and although some progress has been made since, there is still a long way to go.
Mr Morris expressed a concern that money is not for cancer patients but for cancer drug companies!
Cancer Research UK has also highlighted the fact that cancer patients are not readily all getting the promised advanced innovative radiotherapy treatments.
We still need greater emphasis on allocating funds to modern radiotherapy technologies.
Finally, I’ve read that Maidstone and Tunbridge Wells NHS Trust, already £11m in deficit, has paid an interim finance director £50,000 per month.
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