Dear Professor McCabe
Iain has told me that you instigated the meeting that occurred and he has given you some of my points to consider. The first thing that needs to be done is to establish how many sufferers there are in the UK of which there are 4 possible figures.
1st based on Dr Ellis’s radio broadcast last year. She stated that 1 in 60 would develop it in their lifetimes. With a population of 63,000,000 and an average life span of 81 years that is 12 963 annually, mid way between the figures from US and Dutch studies. However she went on to state that 75% of all cases resolve spontaneously, this is not something I have come across anywhere else in the world in over 3000hrs and 4 years of research in fact exactly the opposite once you have it you have it for life no cure and even if you are lucky enough to get long term remission it can and does comeback, I have read of people who went 10 – 12 years in remission before a slight trauma caused it to come back full blown. John Hopkins is one of a large number of institutions and Doctors who have stated it spreads in 77% of all sufferers.
Let us accept for the moment that both views although diametrically opposed are right that still means 3240 new cases a year giving the UK 262440 sufferers.
From A Dutch study 371,700 from US 390,000. The figures quoted in the Royal Collage of Physicians’ paper workout to a horrifying 482,000. The only absolute figure we had was from the NHS Direct database in Oct 2010 which showed 11454 diagnosed in the UK, unfortunately they were later told to destroy those records which would be kept in future by the ONS but the ONS never received any such instruction however I was able to find out that there were approx 8600 consultations for RSD/CRPS in 2012 but no way to tell how many were for new sufferers so it is still virtually certain that only somewhere between 20 and 25,000 have been diagnosed. Hopefully you will now understand why I have been fighting so hard to get action taken and I will not stop.
I don’t know what Iain gave you so I have attached the 7 steps we are trying to get Mr Lamb to undertake, the first 6 were done in consultation with other sufferers and I hope you will take the time to go through them thoroughly as both Iain and I need to know how effective you think they would be in finding and getting the right treatment for every sufferer in the UK. You know that the best chance of remission is if the correct treatment starts within 3 months of onset yet the average time from beginning to diagnosis in America is 30 months but I have read of many UK sufferers for whom it was 10 – 20 years before being diagnosed and in 2 cases 27 and 28 years respectively. 5 months after Iain forwarded my letter to Mr Lamb I came across something which convinces me even more that step 7 could be a massive leap in the right direction. I know that you will be aware that it was Silas Weir Mitchell who first diagnosed RSD in 1847 but were you also aware that 7 years later he was the man who came up with Phantom Limb Pain. One of the first things I was taught in Police Training Academy was not to believe in coincidence, what if they are one and the same condition.
I know that you do a lot of work on this matter but I need and hope you will be willing to do more. What it needs is for you and as many other Doctors as possible to go public, TV Radio and press interviews, on how bad and how many people this may affect and how little is known. If you think my steps would make a serious dent in this problem, I don’t really want my name mentioned but detail them, demand to know why MR Lamb has known about them since Aug 2013 and done absolutely nothing despite promising he would, if any of you think it’s appropriate call for his sacking, contact your MP’s demand answers. Ask your patients to do the same.
But I need even more from you, we need a standard treatment protocol in place that is easily accessible by every medical professional , everything I have read leads me to believe that Pain Medication must be first. Ice, Hot and Cold Water Contrast Therapy and Aggressive Physiotherapy must never be used. I am told the last is even stated in the American Journal of Medicine and I have read of 2 UK sufferers whose circulation was so badly damaged by Ice that they developed gangrene and had to have amputations to save their lives. I have permanently restricted blood flow because of contrast therapy 3 times a day for 7 weeks. Gentle but Intensive therapy stopping as soon as the patients indicates rising pain level daily for a minimum of 6 weeks but possibly longer, your mirror box therapy, gentle massage desensitization exercises and everything else you think that could be done in a unit to help get remission. a set of gentle exercises to be carried out 3 -4 hourly at home, you would need to decide which ones because 2 of the ones I was told to do were just not possible. These 2 links which I have given to a number of sufferers and they all said helped.
http://www.openfocustraining.co.uk/exercise.html
http://www.paintoolkit.org/assets/do...t-Nov-2012.pdf
and anything else you feel necessary.
Both of the above really need doing as soon as possible so that hopefully we can see action happen within the next 4 – 6 months.
The other thing I would request that you do is not so urgent and more complicated, when we find the un/misdiagnosed we need safe places to treat them. I would ask that you come up with 3 plans for treatment centres/units in existing building/wards.
1. Unrestricted money, I know we would never get that but it might persuade them to go for option 2 rather than 3.
2. Ideal
3. Bare Minimum
Each plan would need to detail Mon to Fri opening or 24/7 for No1. Number of inpatient Beds, number of outpatients appointments per week. Staffing levels and specialties required. Equipment that is essential purchase and equipment that could be hired in on an as needed basis if this is better financially. Office staff, equipment and computers. Any facilities that the unit would need to be near for patient treatment such as warm pool for hydrotherapy. Really anything you can thing of that would give the best results for sufferers.
After your 2012 meeting I had outrageous allegations made by the organisers and a week later got a letter from Prince Charles saying he was too busy to help raise awareness, I made a promise to my self then that no matter what I would fight for sufferers to my last breath and no matter what you decide I will but I know that with only a few sufferers and Iain helping me there is no chance of a cure in my lifetime and probably the lifetime of everybody alive today and I will die knowing I have failed them all. With your help the help of all the doctors you know nationwide, if you all can inspire and motivate your patients to speak out, to e-mail their MP’s and MEP’s we can force those steps through the government, then I truly believe that within 1 or 2 years we can find every sufferer in the UK and every medical professional will be able to diagnose RSD/CRPS and know who to refer patients to. Within 5 – 10 years there will be a dedicated specialist led treatment centre in every county, and with a internationally recognised data hub and a reasonable annual research fund there is a possibility that you might find a cure before I die.