Patients & families deserve better
I have just returned from a wonderful Mediterranean holiday with my husband and should be feeling relaxed and refreshed. I don't mean to sound ungrateful (I am anything but). It really was a fabulous holiday. But the fact that I went down with the flu a few days before the end and am still languishing on the sofa, wrapped in a dressing gown has somewhat marred the benefits.
Like most of us, I find myself more easily goaded to grumpiness when I feel unwell and so I hope you will forgive me if I use my blog this week to have a bit of a rant about something that never ceases to shock and dismay me whenever I come across it… which is altogether too often.
In the course of catching up on my correspondence with #vitiligo contacts, following my trip, I have heard several more examples of how badly our western #health-systems are letting down vitiligo patients and their families and it makes me want to scream.
"Nothing we can do"
One email was from a distraught mother whose 4 month old baby boy has developed several white patches on his skin. When she took him to the doctor she told me she was “just dismissed”. (If I had a penny for every time I have come across this kind of reaction from the medical profession I would probably have enough to fund a masterclass in Clinical Empathy (that's “bedside manner” to you and me) and have enough left over to buy a copy of Dermatology for Dummies for every family doctor in the land.) So she did some research and found a vitiligo specialist in London, who told her that her son's patches were not vitiligo but birthmarks. (Maybe I am being unduly grumpy here but those of us who have vitiligo can recognise it at 100 paces and I really would expect a so-called specialist to be able to identify it when it is right under his nose. Admittedly, vitiligo in young babies is rare but certainly not unheard of.) A week later the mother noticed another new patch and went back to the specialist who consulted a colleague and concluded it “probably” was vitiligo after all but that, because of the baby's age, “there isn't much they can do”. From what I can tell, this woman was left with no constructive advice or solutions and she is now spending much of her time in tears, worrying about her son's future and desperately trawling the internet to find answers. Her own mother, who has also had vitiligo for about 50 years, had also been told “there is nothing she can do”. Here are 3 generations of the same family who, in my opinion, deserve a better response from the health system than this tired old refrain "nothing we can do".
"the doctor handed me paper work which was printed off Wikipedia"
Another email was from a guy with an obviously philosophical and proactive attitude towards his vitiligo. He, too, was searching for answers and looking forward to trying the nutritional supplements I used to re-pigment with phototherapy to see if this would help. When I asked him if he had tried to get his GP to refer him for UVB treatment on the NHS, he replied, “ The NHS was a pretty useless experience for me, the doctor handed me paper work which was printed off Wikipedia and told me nothing could be done.” (Wikipedia - what? And again, that incessant refrain – the one all doctors seem to learn by heart in their non-existent vitiligo lectures “nothing can be done!” Aaaarghhh!!! Sorry – I'm getting grumpier by the minute here.)
"At your age I'm surprised you carry on trying"
Another recent email was from a vitiligo friend, whose courage and dignity has really affected me as I have come to know her story through our correspondence. She put her concerns over her vitiligo – and everything else in her life – on hold while she nursed her terminally ill husband. After he passed away she started, gradually, to pick up the pieces. Part of that process was to renew her efforts to improve her vitiligo. She had previously seen some good re-pigmentation as a result of using the supplements I used and went to her GP to ask for a UVB referral. This is what she told me happened:
“He said the wait to see a specialist was very long so I decided to pay. Went along to my appointment about 4 days later armed with my before and after pics, he wasn't really bothered!!! I was so upset with experience, he said pigment doesn't come back in white people, only temporarily! ! He said the vitamins that we take won't harm you but they are not responsible for my skin colour coming back!! I could of throttled him hahaha. He also said "you must be in a good place in your life to get some colour back " you can only image what I said!, he also said "at your age I am surprised you carry on trying " this was the last straw!!!"
"When I left I was in tears"
Another woman who had seen some re-pigmentation using the supplements went to a dermatologist seeking UVB therapy and related this experience in an email a while back:
“My appointment was very disappointing. I was met by a consultant who looked at the ingredients and pulled a face telling me that he does not believe that the supplements have had anything to do with my re-pigmentation. He stated a number of research 'facts' that prove that diet has no affect on re pigmentation. After telling him that I saw results within 2-3 weeks of taking the supplements I was told it was a coincidence! . After what seemed like hours trying to get him to agree to the light treatment he told me that he would first prescribe an 8 week course of protopic cream and reassess the situation in 8 weeks. He would then issue a course of light therapy treatment if the protopic showed no improvement. Well this was a blow to me because I really wanted the light treatment during the colder months. When I left I was in tears. It took me days to get over the trauma and I haven't even taken the prescription to the chemist yet.”
I would have laughed out loud when I read this, if it had been remotely funny, because I have also been told by doctors that my re-pigmentation, which started within weeks of beginning supplementation was also a fluke, as have a number of others who have emailed me with similar accounts.
Unfortunately, there seems to be no end to such stories. It may be that, as you read this, you are mentally adding your own experiences to the list. I ask myself how this state of affairs has persisted for so long and why vitiligo alone among skin conditions seems to have been singled out for such woefully poor patient care. Can you imagine someone with psoriasis, eczema or acne meeting with this kind of dismissive and offhand response from their doctor or consultant?
What I think
I am not usually the ranting kind and I will probably post this in a fit of flu-fuelled frustration and later regret it. But I am just going to say what I think on the subject, okay?
I think it is unacceptable in the 21st century that anyone who seeks help from a medical professional for a condition that they find deeply worrying and distressing, maybe even devastating, should be made to feel as if it is not important.
I think it is irresponsible – I would even say immoral – to tell a patient “there is no hope of improvement”. There is always hope. Sometime hope is all a person has to hang on to. If I had had more hope during my 50 years living with spreading vitiligo I would have wasted a lot less time feeling depressed about it.
I think it is arrogant to state that something cannot be successfully treated simply because most successes are not achieved with drugs.
I think it is the height of ignorance to think that diet and nutrition cannot impact on skin health (what medical school did that nugget come from?)
I think it is negligent to be uninformed about existing therapies, promising current clinical research and anecdotal successes and not to mention these to patients
I think that it is unfeeling and unprofessional not to consider the far-reaching psychological effects that vitiligo can have on patients and their families.
I also think.... that I have probably made my point!
Okay - rant over!
My name is Caroline.