I have been told that it might be another 4 – 6 weeks before I am informed whether a certain person/persons will attend so I have asked Iain to hold off on setting a date.
I really need your help to make this the most significant CRPS ever in the UK and get action taken to help all of us diagnosed and un/misdiagnosed.
Please ask yourselves the following questions.
1.How much pain is it worth, how much would you be willing to pay to ensure that every medical person you see in the future knows what CRPS is, that you have to be treated with extreme care and the 3 treatments that must never be used.
2.How much to ensure that there is an up to date professionally trained specialist in every hospital.
3. How much to get a dedicated treatment centre staffed with fully trained teams of the 6 professionals the NHS says you need.
4.How much to get an annual £10,000,000 research budget between 2009 and 2014 the NHS spent 1.15 million on CRPS research.
5.How much for them to use me in as a guinea pig for a produce which could give you long term remission and possibly be a cure.
If the total answer to these questions is a lot of pain and or 3 weeks salary then I ask 3 things of you,
The first is easy and some of you have done it already, e-mail your MP’s if you have done so and they have not replied or given an unsatisfactory reply then please do so again but this time point out that all the TV and Radio News programs, all the National Newspapers are being invited so there attendance will bring a lot of good publicity in the run up to the election and might just mean they retain there seats. If you want to add in that I have asked you to inform me of the ones who won’t help and you a have no idea what I intend to say to the press about that then feel free to do so. If you haven’t and want to help e-mail me on RSDFighter@hotmail.co.uk and I can send you a template to work from plus the 7 steps to send them.
The Second is very hard, after the Debate in 13 I was laid up on the couch for 2 weeks barely able to function the flare was so bad but it was worth it because we have now got farther than anyone else in the UK before. You are the people who can make this happen we have a doctor who s going to speak for us from a unique position, he knew what CRPS was but didn’t realise when he got it himself. I am waiting to hear if another doctor who knows more about international research than anyone else in the UK will attend. NHS England and The British Acupuncture Council will send representatives, we are still waiting to hear from other medical associations but more important than any of them is you so the MP’s see what this does to us and what it could do to them or their families.
The Third again very hard, this has destroyed my ability to control my emotions and every time I have had to go through what’s happened I have broken down in tears, I feel ashamed and embarrassed, then I get angry with myself but if we want to get the press to do a lot of the work for us we need them to print the symptoms to find the un/misdiagnosed, we need them to run stories to keep the public interested and spread awareness as far as possible, My wife and granddaughter have agreed to speak to them and tell the worst, how bad I have been and how this has changed their lives.
If you won’t do it for the un/misdiagnosed, if you won’t do it for yourselves, do it for your children because there is no way you want them to go through what you have.
If we do not succeed now there is nothing more I can do for you, if we don’t get the Politicians. Press and Public on our side now then it will be many years before you get a chance again.