There are people out there who will take your money, and have no real skills and ability to alleviate your suffering
For many years, members of the NHS PDT community have had the gravest of issues with the offer of Sono Photodynamic Therapy – sometimes known as SPDT or SDPDT. This treatment has never been through what would be accepted as a robust clinical trial.
Many of the leading figures in the PDT world have complained to the medical authorities that these treatments have been ‘sold’ to the public without there being the Level One evidence.
Those individuals have been greatly concerned that patients they have met – and told that they would be unsuitable for PDT and that effective PDT might even been dangerous, have been accepted by the Dove for treatment.
Following investigations, including undercover reporting by journalists from The Sunday Times, on 4th April 2013, the GMC (General Medical Council) issued a directive to Dr Julian Kenyon, Director of the Dove.
Among the key points are:
a) He must not carry out Sono Photo-Dynamic Therapy unless the patient seeking this therapy has been directly referred to him by their treating GP or their hospital Consultant.
b) He must maintain a log detailing every case where he has undertaken Sono Photo-Dynamic Therapy, which must name the referring registered medical practitioner.
c) He must provide a copy of this log to the GMC prior to any review hearing of this Panel or, alternatively, confirm that there have been no such cases during that period.
This position is an interim one while the GMC continues its investigations.
Eight years ago I was conned by a clinic in Russia claiming to have a PDT cure for my eldest daughter's tumour. She went to Russia and Salzburg for three treatments. The family was told by the medic that they had been a success and the tumour had shrunk. As the coverage of our European journey showed on ITV, the tumour actually grew.
Did he lie to us?
For many years, it has become increasingly apparent that other PDT clinics have been opening across the world that have been offering PDT treatments that have not been tested and developed to well established international standards.
Indeed, against all medical ethics, patients have been paying through the nose for treatments where they are the guinea pigs. That’s just plain wrong. How can the owners of these clinics sleep at night?
These people often have glossy websites, and persuasive words that are intended to induce the vulnerable to part with their money.
It's odd how, once adorned in a white coat and wearing a stethoscope, we presume that the person before us is skilled and has our best interests at heart. In my opinion, money is all that matters to these people. I have heard from patients first hand of their cold-blooded exploitation of human suffering.
When patients sadly die family members respond with gratitude to these ‘kind’ people and accept the sympathetic words offered, strewn at our feet like soft confetti: "We tried our very best. I am so sorry."
But that isn’t the truth. I have spoken to some of these people who have admitted to me that these patients were in a ‘trial’ … and they had no idea if they could provide the successful outcome indicated or promised.
I’ve heard of promises made to terminal cancer patients whose scans and medical reports made it 100% clear that they had weeks to live.
Do you think that someone who charges £10,000 for a treatment that can NEVER save or change a cancer outcome, is guilty of fraud? I do.
One of these disgraceful people even admitted privately to me that the treatments offered were trials, and yet felt it was perfectly OK to charge the unsuspecting person £10,000 a time. That’s just dishonest.
I think it’s a cynical, criminal activity.
I have spoken to so many family members outraged when they realise they have been fed false promises. One patient I have heard about was convinced by the clinic’s owner that he was going to live, and told one the medic’s potential investors how brilliant the clinic’s owner was!
He was dead in a few weeks.
I am angry that the negative stories about PDT continue to cause grave damage to the reputation of NHS treatments with what is - when properly administered - a gentle and yet highly effective treatment for many tumour types.
Without doubt, the charity has been a huge success in raising the profile of PDT. The rip-off places have been exploiting the media coverage and the celebrity endorsements this charity has assembled. We had to threaten one clinic with legal action for putting our video clips on their site without permission.
The medical people I work alongside can find no evidence that the treatments offered either work or could ever work. But perhaps they do? Until they offer their research data for international scrutiny, who knows?
Some of the scientific claims fly in the face of basic science.
When the charity tells a patient that they are not suitable for PDT in the NHS - and perhaps that no trial has been run so far - many patients and their families hit the web and tell us they intend to go to one of the clinics that has promised them a cure.
If skilled clinicians like the brilliant Colin Hopper at UCH in London says that PDT is the wrong option and could do them more harm than good for a particular condition, he is being honest and speaking from the heart for the good of the patient.
So, it amazes me, Colin and others when one of the clinics we distrust so heartily will offer to treat and make outrageous claims of the success they can offer to these people.
These people know they are telling lies to the patients and their families.
How do we know this? It is a matter of scientific fact. It the treatment worked as described by the clinic, far from eradicating the precise tumour deep in the body, the power of the lights illuminating the body would see the patient’s skin burn and peel off in in a matter of minutes. The death would be agonising.
I find it impossible to comprehend that anyone claiming to be a medical professional could so crudely and cruelly exploit a cancer patient and their families at the time of the greatest need for honesty. But this is clearly happening.
If we can't have honesty at a time when we are nearing the end of life's journey, there is something sick about the person who will charge a cancer victim £10,000 for a hope and promise they know they can't deliver.
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.
The story is also in the Guardian.
You may have arrived at this website having seen a story and feature in the Sunday Times. The full story is in the paper - too large to scan and include here. This is the news story from the front page.
I can email you the full press cutting of the feature. In the online version, it contains videos of Dr Julian Kenyon from the Dove Clinic talking to the reporter with claims that, in the feature, are dismissed as nonsense.
The simple fact is that the more this charity and I personally try to promote PDT and its benefits, the more damage we are actually doing. We are helping to ‘feed’ clinics such as The Dove, Next Generation PDT in China and Hope4Cancer in Mexico with more desperate people who would never think to question their promises.
Our work promoting PDT gives the science credibility, but when we don't have an array of established and approved PDT treatments available across the NHS for patients to access, desperate people will try anything and will ignore advice and book with the clinics that we disapprove of.
As so often on my eight-year journey with PDT, I am writing something with tears streaming down my face. I am frustrated because nobody is helping me to shut down the clinics that are exploiting vulnerable people.
I call on all in the health and political worlds to do more to warn the public of the activities taking place at these clinics. Until we do, we have failed the patients and their families we are employed to love and care for.
On the right hand side here are details of the PDT clinics and people in the UK who might be able to help you. They are honest and reliable people.
I have done all I can to warn you of the rogues who seem to only exist to prey on your desperation.
If you know of someone who has been to an overseas clinic – or one in the UK – where you have felt used and abused, lied to and misled – please email me.
The more stories we have, the more we can to alert the unsuspecting.
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