Would you like to see this happen, would you like a chance to meet Prince Harry, do you want to help your fellow sufferers. If so please write to him this weekend.
Your Royal Highness
I apologise for intruding upon your time but I have letters from your father and brother refusing to lift a finger to help the sickest people in this country and am hoping it will be 3rd time lucky.
On the 18th June 2009 I underwent a carpal tunnel operation and the anaesthetic failed to work, within 8 hrs I had full blown CRPS in my right hand In April 2011 a specialist touched my right arm 4ins outside the affected are with a sensitivity pin, these are small gold coloured pins with a ball instead of a point. It caused the CRPS to spread from below the wrist up to the elbow and around 2/3rds of the circumference. He said I was the most hypersensitive sufferer he had come across in 20 years. In Nov of that year another small trauma caused it to start in both legs. In February of last year I stumbled on the stairs, my right foot slipped off the step on to the one below, it caused the CRPS to worsen and a wound to open on my shin. In September I went into the wardrobe to get a clean top and was bitten by something on both feet causing the CRPS to spread there.
I am now so crippled by this condition that I can only leave the house with my wife’s assistance in a specially modified wheelchair, yet I consider myself to be one of the lucky ones.
Complex Regional Pan Syndrome is internationally recognised as the Worlds Most Painful Incurable Condition, so excruciatingly painful that sufferers have attempted and in some cases succeeded in self-amputation in a desperate attempt to escape the pain but it has only caused the CRPS to spread further into the body or start in the opposite limb.
There are approx 16,000 diagnosed CRPS sufferers in the UK but figures from 4 different medical sources indicate there could be between 240,000 and 460,000 un/misdiagnosed as well. Why because 95% of the medical profession have never heard of CRPS not just in the UK but in most other countries around the world.
According to US studies sufferers are 900% more likely to commit suicide than any other group in the World and in the long term 25% do take there own lives that works out to 15% of the annual UK suicide rate however as most of them have not been diagnosed it will go down as depression or some other form of mental illness. I cannot tell you how accurate that figure is but what I can tell you is that last year I came across a US website with 13 members, 8 of them committed suicide within a 12 month period and the site is no longer live, I have also attempted suicide and have been told by many others that they have tried or at least seriously thought about it.
66% will never work again, it will spread in 77%, It is the only condition in the World that can start from something as trivial as a sprained wrist or twisted ankle, in one recorded case from a bee sting and go full body all 4 limbs, torso, neck, scalp, eyes mouth and Internal organs. It does this in approximately 10% of us. 7 – 8% of us may get wounds that take a very long time to heal and in the worst cases never do.
The DoH has failed to comply with my request for 2013/14 and 14/15 figures but these are the official ones for 2009 – 2013. Money spent on Cancer research £439.7 million. The Estimated real-terms expenditure on NHS cancer services for that period is £22.84 billion. The money spent on CRPS research in that period is £500,000 and the real-term expenditure is so low they cannot even guess at a figure.
According to Clinicaltrials.gov the number of cancer studies since the start of modern day clinical trials is 50597 for CRPS that number is 190.
According to the Charities Commission there are 164,889 UK Charities of which 1027 are devoted to cancer, 13 bring in over 10 million a year, 39 bring in between 1 and 10 million a year, 24 bring in between ½ and 1 million, 85 bring in between 1 and 500,000, CRPS has none, there was one which shutdown in 2007, one person who claimed to be involved said they could not get enough donations to keep going even though you are only required by law to have an annual income of £5000.
Pain is just one of the symptoms, I have included a full list so you can begin to imagine just how badly this condition affects not just the lives of sufferers but their families as well, why some can’t take the strain and break up, imagine having this but being un/misdiagnosed and your family are told you are a malinger or it’s all in your head. I have tried to get my wife to leave me twice because it’s not fair she should have to live with me like this.
Your Royal Highness I know you’re are extremely busy with a lot of commitments but I beg of you, before making a decision find an hour or two in your schedule, meet some of my fellow sufferers including children who currently have no chance of a normal life. Meet Professor McCabe the country’s leading psychical specialist, (according to one there are only around 15) who runs the only dedicated treatment centre in the UK, and Professor Rodham the leading mental specialist. Meet my MP Iain Stewart who has fought with me since mid 2011 to get the government to take action and some of the members of the small All Party Parliamentary Group for CRPS he has recently pulled together.
If this was the only thing you ever did for us by bringing the press along or even better getting Ant and Dec to do a program on it, you would make millions of people aware of CRPS and hopefully they would spend 5 mins e-mailing their MP’s asking them to join the All Party Parliamentary Group for CRPS, that 100’s of MP’s and Lords would become aware and join the group, that 1000’s of doctors nurses and therapists would become aware of this condition and how dangerous it is, that we might find 10,000’s of thousands of sufferers. Without your help this will take many years.
If you need any further documentation before you are willing to make a decision then I can e-mail it and both mine and Professor McCabe speeches to the APPG given last Oct. I can also supply links to videos which show how bad it can get for sufferers and photographs.
K A Scardifield