When drugs cause skin problems – what
it’s like being a Whistleblower
30 pairs of eyes stared at me
At a meeting of PCAG (Patient Committee Advisory Group) volunteers at my cancer hospital, everyone was staring accusingly at me,
Things hadn’t gone well with my treatment, so I had joined PCAG to try and make sure others didn’t have the problems that I had. I didn’t want to blame the treatment I had, so just wrote that when I had horrible drug side effects, all the hospital had been able to offer me was “do you want to come off the drug”.
Put on Tamoxifen; I became blind in one eye, then a nurse peeled layers of skin off my arm, saying “you do have a problem”. When I mentioned this to my doctor, he just asked if I wanted to come off the drug. But believing what I had been told, that Tamoxifen wasn’t the cause , I stuck in there.
A week after starting Tamoxifen, I woke with bloody sheets and blistering, peeling skin. I was recommended E45. then Aqueous cream to deal with this – but they didn’t work. Eventually steroids cleared this up – then another bout happened a month later. So I made an appointment at my ‘world famous’ cancer hospital, to see their head dermatologist. The great man told me to strip naked in front of a crowd of young students; I was still naked when he gave me his pompous diagnosis “it’s your age”.
The students gave a concerted gasp, I knew he was wrong and tried to question him , but he swept out saying he hadn’t time to answer questions. I had to work out for myself what to do. The Senior Chaplain gave me his contacts, and off I went to France – to La Roche Posay (LRP) with its genuine World Class Care.
Arriving at the Clinic I found a huge make-up class going on – with men and women. I was told they were all badly burned and were learning how to apply cover make-up (another LRP speciality). As soon as I arrived I was shown in for my first In-depth appointments with doctors, lots of tests, skin analyses, etc., advice from a superb Nurse, massage with selenium-filled waters, all within a day (no waiting days between appointments here).
Eventually I was sitting in a massive store centre, with a nurse looking at a prescription listing jars and tubes of LRP products, all clinically-trialled and formulated especially for the problems cancer patients face from drug side effects on our skin. The French acknowledge this happens, and get on with researching how to treat us.
I found how respected my Chaplain friend was when I tried to pay. My card was waived aside “you are treated as a French person because it is the least we can do to show our respect for the Reverend”. What a difference from the way he had been treated when he had to go to an NHS hospital, and was shoved in a mixed ward.
I couldn’t believe how easy it was. I had been given my first appointment with ‘gatekeeper’ doctor; he assessed whom I needed to see, what treatment I needed, and everything just went seemlessly during the day. And I didn’t need my dictionary as most oncologists in France do a stint in the USA, so speak excellent English.
If it happens again
I have had other outbreaks, but bring out the LRP products, and they clear it up. But so many patients had similar problems that medics had to take note; and now do much more to fit the right drug to the patient. Louise Atkins and Lesley Fallowfield in Sussex and Thomas I. Barron and others at Trinity College Dublin, did a famous report on this, and eventually doctors in Britain started to follow the rest of the oncological world, and take note .
I was not happy with my treatment in UK, and wrote that all the UK could offer was to come off the drugs, and how much better was the French system ,I expected doctors would be interested to know how the French had treatment my problem, but no. A few months later I was at a PCAG meeting. when suddenly under AOB, 30 pairs of eyes focussed on me.
I was sternly told that I was not supportive of the hospital, and ticked off, No-one wanted to listen to me, or how I hadn’t had much support – not to mention an incorrect diagnosis. As a patient I obviously didn’t matter, but my ‘star chamber court’ had tried me behind my back. I resigned,.
Now I know what whistle-blowers have to put up with. I had been given a questionable diagnosis. Unlike France, I only saw one doctor,had no tests and no second opinion. and no-cared that my skin had been hanging off my body. It was all so unsatisfactory, and I reflected on how in Britain we arrogantly seem to think we know it all – whereas in France they had worked hard to get several opinions to ensure they really gave me the right diagnosis.
No wonder the House of Lords was told we have the worst cancer care in Western Europe. But Baroness Jowell is more important than me – I doubt if a PCAG Commmilte would hsv dsred tick her off!
So when I read that whistleblowers have been castigated, rather than listened to when they point out what is wrong – I wonder how we will ever improve the NHS.
If it happens to you
Good chemists in UK now stock La Roche Posay, or go to
If you want to go to the La Roche Posay Clinic in France (if you have a referral letter, this saves time, but not essential)