New trials, new funding and a link with Cancer Research UK
A meeting of PDT experts from around the world, plus some of the leading medical brains in the UK, took place in July 2014. The outcome of this meeting was for outline plans to be drawn up for 13 new cancer trials with PDT.
It looks as if this charity will have to fund most of the costs, and we will be running fundraising events and programmes in the coming months. We have to raise around £20m.
I will publish details very soon.
Fake PDT clinics around the world
I need to warn you. There are clinics advertising their services on the web – saying they offer PDT (or a version of it) that as far as all checks that can be made, are complete and utter rubbish.
Of particular concern are the people offering Next Generation PDT in China (and maybe also Australia and Malaysia), Hope4Cancer in Mexico, and the Dove Clinic (London and Hampshire).
The ‘owner’ of the later has been investigated by the General Medical Council, and we are awaiting a verdict.
They – and others – are claiming to have new versions of PDT (Photodynamic Therapy) are highly effective.
Allow me to take you back to 2004 when I and my family were told by Victor Borisov in Russia / Salzburg that he had destroyed a tumour in my eldest daughter’s arm.
As MRI scans in the UK conducted at the BUPA hospital in Bristol showed, the tumour had actually grown in size.
Please be aware.
I heavily critise the cancer world for not offering any guidance notes on these – and other clinics. After much lobbying, NHS Choices recently published a guidance notice on these clinics and the treatments, based on their own research of some of the clinics. Thank you, NHS.
“It’s like pushing treacle up stairs with your nose, backwards and blindfold”
That is a direct quote from Health Minister, Norman Lamb MP. He was talking to me about the shambolic way that medical trials are currently organised. It’s a view expressed to me by many people at the top of the cancer world, by research scientists and medical researchers alike.
Trials can take up to 10 years to deliver their results. The answers to the question ‘why’ will frustrate and probably anger you.
• No national database that can be searched of patients who have cancers / conditions that would benefit from any specific trial.
• Resistance from hospitals and specialists to refer patients to trials run outside their hospitals – including a positive financial disincentive.
• Too many layers of bureaucracy skimming off funds raised by companies / the public. It starts with some of the big charities that take 50% plus to pay for staff, office and other costs. Then, of what is left, hospitals will skim off up to half the money to cover unrelated costs. And Clinical Trials Units overseeing trials will take a hefty sum for their own admin costs – sometimes up to half of what goes through their hands.
Nobody has ever done a detailed calculation as each case is different. But you can see that perhaps as little as 15 pence in the pound donated ever gets used in trials. And even then, some of that pays staff costs!
• Many trials only take place in a single hospital with limited access to patients to treat --- and not enough facilities to treat more if they had them.
On the other hand, we know that a complete trial could be completed in two years, if there was the will to do so.
Together with Norman and a growing group of fund raising professionals, we are set to tackle the problem. We have clinical people signing up to our outline plan, including two groups who have pledged to deliver trials for mouth and throat cancer within two years. It can be done. A skin cancer group promises complete half a dozen trials in a year!
Trials are a numbers game. Treat more patients in more hospitals and you could hit a target of 300 patients in under six months. It can be done.
At the invitation of Norman Lamb, we are currently preparing our detailed proposals for the Secretary of State for Health. The report will also be delivered to the Prime Minister who has also raised the question in Cabinet. One of my co-conspirators in this push for change is John Miles MBE – one of the most successful cancer fundraisers in the UK.
To be clear, our proposals don’t require any corners to be cut in the actual trials. It simply requires hospitals and their management teams to create a new and more flexible ways of working.
We intend to bring about major change. If the public became aware of the bullet points here, there would be outrage. Well, you’ve just read it. Contact me if you, too, demand change.
Finally: this website is due to go through a major re-vamp. When this takes place, information on the right of this page about trials will also be updated.
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