Iain Stewart has agreed to forward it to all members that couldn't attend
I would like to thank everybody here for giving up their time to come today, especially Iain Stewart who has fought to raise awareness since I first contacted him in 2011, Ian Stafford a Northern Ireland sufferer who unfortunately I will never meet, He was the first sufferer to contact me saying he wanted to help and then actually do something and to the 2 Alex’s Iain Assistants who have worked so hard to bring both of the meeting about. It is solely down to their efforts that we are here today.
You all know that CRPS is the Worlds Most Painful Incurable condition and I would like to ask 3 things of you which if you agree will I believe make history and give sufferers hope for the future, before I do that I want to run through some figures which I know some of you are aware of but need I feel to be restated.
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, in fact as far as I know Spain is the only country which teaches CRPS in all it’s medical schools.
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, Since I first started researching there are 30 – 40 sufferers who I was in regular contact with who stopped responding and whose e-mail address eventually went dead. 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. There are sufferers who wanted to be here today but it was impossible for them to make the trip one lady I have known for around 3 years Sonia Green who designed the CRPS Ribbon is confined to her bed only leaving it for ambulance trips to hospital, she has to be given a general anaesthetic before she can even have her nails cut, had it in every part of her body except her hands but she has recently told me it is spreading into them as well now. 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. In 5 years and well over 1000 e-mails I have not been able to find any person organisation or company willing to help start and maintain a CRPS charity
That brings me to my first request, I know there was a lot of publicity that many of you thought your pay rise was too much so I am humbly asking each of you to consider making an annual £1000 donation to form the All Party Parliamentary Group Charity for CRPS, I know things are different in the House of Lords but I hope your Lordship will be willing to match the MP’s donations. I would request that 2 or 3 of you, Professor McCabe or one of her colleagues and 2 of my fellow sufferers here today become the trusties. It would allow me and my fellow sufferers to donate when we could, to arrange events to raise money for the charity and I know of a company willing to make items with our logo on and donate parts of every sale to the charity.
The aim of the charity would be to build and maintain a website with a forum and database which would bring sufferers together to form local support groups and provide CRPS Specialists with specific data which would help in their research, To promote an awareness campaign and if possible to provide interest free loans to sufferers who are left penniless while appealing ESA decisions repayable once the case is won and backdated payments are received, any money left over at the end of each year would be added to the CRPS research fund.
My second request if you agree to the first is that one or more of you submit an early day motion and if it’s possible do something similar in the House of Lords describing this condition asking for members to join this APPG and whether they are willing to do so or not if they are willing to commit to an Annual £1000 donation to the APPG Charity for CRPS. There are currently 1464 members of both Houses, if between you you could get 250 to commit to this donation it would allow us do the things I have outlined above and probably more.
Some of my fellow sufferers and I have come up with a list of things we feel need to be achieved, these are in no particular order.
1.The Government to recognise the 1st week of November as National CRPS Awareness Week.
2.The DoH to e-mail every trust, hospital, surgery and clinic in the country informing them of the existence of CRPS, it’s symptoms, the 3 treatments which must never be used and that eventually all medical professionals will be required to attend a CRPS Course. They have twice refused my request to do this even though on the second occasion I offer to pay the cost from my benefits
3.The DoH to form an office of CRPS Internet Liaison and Research staffed by at least 3 medically trained CRPS sufferers to make contact with specialist centres around the world, to Collect, Collate, Exchange and Disseminate CRPS Papers so that he UK becomes the leading CRPS information centre in the World.
4.The DWP to recognize that CRPS is a permanent debilitating incurable condition that can only be assessed by a qualified Doctor who has received training in the symptoms of CRPS by attending an approved course and can demonstrate extensive knowledge of the risks both mental and physical to the sufferer. That all benefit payments must continue uninterrupted until their contractors have sufficient doctors to do so.
5.The NHS be required to set up a £40 million CRPS fund from there Annual Budget
£10 million to be spent on teaching CRPS at all medicals schools and also in all hospitals until every existing medical professional knows the symptoms and how to diagnose CRPS under a teaching regime to be formatted by Professor McCabe and her colleagues. Each Hospital to form 2 multi-disciplinary CRPS teams as per the NHS Choices web page.
£10 million to be spent on sending newly qualified doctors abroad to receive specialist training until every hospital has at least one CRPS specialist.
£10 million to be spent on converting existing unoccupied buildings and wards into a dedicated CRPS Treatment Centre with both in and outpatient facilities staffed and equipped to a plan drawn up by Professor McCabe and her colleagues so patients can attend with the least risk to themselves due to extended travelling or long waiting lists.
Any remaining funds from the above 3 to be added to the following year’s £10 million research fund. I first read about stage 1 of Dr Goebbels Immugloblin trials in an article in Tehran news dated 2008. I spoke to Dr Goebels on Tuesday he first applied for funding in 2006 and only got funding for stage 2 in 2012/13 and the trial will not be complete until early next year. Once his papers have been submitted and accepted he then has to get funding for stage 3 so he believes that he will not get approval for general use of his treatment before 2021 at the earliest. If the US figures are correct using the lowest estimated UK annual increase figure over 12,000 sufferers will have taken their own lives in that period. If this happened with a trial for cancer there would be national outrage at the delay so the decision of where when and how the research money is spent must be given to a panel of CRPS experts lead by Professor McCabe and Dr O’Connell who knows more about Worldwide CRPS research than any other person I have come across. They must be allowed to do one off tests on a single sufferer so they can prioritize where the research money should go.
£40 million is 0.86% of what the NHS spends on cancer each year and 0.036% of the total NHS Budget; I do not believe this is an unreasonable amount to request for the Worlds Most Painful Incurable Condition
I have done some research into the most effective way to achieve these goals which leads me to my 3rd request; you will need to do your own research to confirm it but as far as I can see there is nothing to stop you working together to draft a Private Members Ballot Bill for CRPS and each one of you submitting it under your name and the same happening in the House of Lords. According to the Parliament website this is the best way to get our needs into law and the more bills submitted if it is allowed the more chance there is of one of them being picked and eventually passed.
Thank you for taking the time to listen to me.