Please use shortened versions or your own steps in e-mals to your MP

Step one Cost £5 – 800 if you have to get a professional into do it. Both you and Iain mentioned the NHS Choices website. The first page needs to be changed so that pain medication is the top of the list, pain levels must be reduced before any physical activities are undertaken. Second Page Needs to be changed to include all the symptoms on the list I have given you, the concept of stages was dropped by the rest of the world some time back.
Treatment page needs to be changed 1st Para usually involves needs to be must involve. Care Team is usually provided needs to change to must be provided.
Physiotherapy must include, Under no circumstance must Ice or Hot and Cold Water Contrast Therapy be used, they have been shown to cause permanent damage to sufferers blood vessels, in some cases so badly that gangrene has set in and the limb has had to be amputated to save the sufferers life. Aggressive physio therapy must be avoided this can prevent remission and cause spread, (this is on a number of sites and I have been told is included in the American Journal of Medicine) Physiotherapy needs to be intensive but gentle at the start daily sessions are required and the patient needs to carry these on at home hourly or 2 hourly to avoid the joints freezing up again.
The Pain relief section needs to be moved to the top with a warning that the protocols page must be read before any needle is used or any admission to hospital and a warning that 7 – 8% of sufferers may get wounds that never heal.
3 new pages need to be added 1 for the hospital protocol I have attached which is used by a number of US specialists units and one with the Wounds that may not heal paper the third with a list of names, locations and contact numbers of all UK specialists. All doctors claiming to be specialists must be verified I have come across 2 who claimed to be but an internet search quickly revealed that neither was.
As you said there are a number of conditions with similar symptoms, it is vital that a warning be put on those pages that until a conclusive diagnosis is made these patients must be treated as if they have CRPS because normal treatments for those conditions could permanently damage the patient if they do have CRPS and the best chance of long term remission is if correct treatments are started within 3 months of the onset.

Step 2 Cost £100 approx. 1 Member of your dept to send an e-mail to every Trust, Hospital, Clinic, Surgery and Dentist in the country telling them of the existence of CRPS, that it is the worlds most painful condition and requiring them to ensure that every member of their medical staff reads the NHS Choices webpage’s urgently and to notify your dept when this has been done, a follow up e-mail to be sent one month later to any who haven’t complied. If possible a similar e-mail to all private facilities.

Step 3 Nil Not enough is known yet to make a course viable but it is vital that our doctors, nurses and physiotherapists start to learn about this during training, to make sure the graduates never forget the last hour of their medical training should be spent on this and I can supply a couple of videos which they would never forget. The rest of the time would be giving them the symptoms, treatments which must never be used and that it must be dealt with by a multi-disciplinary team

Step 4 Cost £2500 approx. It would take 3 – 4 hours and would be the fastest way to raise awareness and find the un/misdiagnosed. A number of other sufferers wanted to be at the last debate but couldn’t make it because of the length of notice and money because they are not getting all the benefits they are entitled to. One of these is Chelsea Marie OSullivan from Liverpool a 25 year old who has suffered since age 12. She wanted to attend but needs two nurses and a hoist just to get out of bed in the morning, she didn’t have the time or the money to make arrangements for her and 2 nurses to travel or pay for 2 night’s accommodation for herself and them which she would need. There is a Travelodge less than a mile from Westminster which appears to have reasonable prices. What I am asking for if you agree to the rest of this piece is for the DOH to pay for the travel of her and a number of others to get to London. They simply do not have the money to pay out and reclaim so it would be necessary for your dept to arrange things with them directly. Obviously I and others living within 50 miles of London can make our own way there at our own expense.
The first stage would be for you to get permission to repeat the debate in the main house, it would need one months notice so that sufferers could make arrangements to be there, Iain can repeat his part and then you can reply using the facts and documents I have supplied, the simplest way for you to get every MP on board is to state that although the majority of cases are caused by operations or fractures a significant number have occurred after something as simple as a sprained ankle or twisted wrist which means the every member of the house their family and friends are at risk and have virtually no chance of getting the correct treatment with in 3 months which is necessary for long term remission. I hope that you would be able to announce that the first 3 steps have already been taken and the other steps I will detail later are going to be taken shortly. It would also be good if you made short mention of Chelsea what she has had to go through and what it took to be present there and a few of the others I would supply you with details of. I would ask that you finish that part by mentioning Trudy Lapinski who is responsible for all this, with the help of her MP a debate was held on 14/6/2006. Despite this and a number of petitions no health minister then or since has lifted a finger to help so you would ask every member of this house to join you in a pledge by a show of hands that no matter which party we are in or whether we are in power or not we will not fail Miss Lapinski and her fellow sufferers again. The boost in moral that would give sufferers is immeasurable after so many years of being ignored, having it inferred they are malingerers and/or being told it’s all in their heads. It would give them hope rather than despair, a light at the end of the tunnel, a knowledge that a cure might be found so it’s worth fighting on rather than giving up.
The second stage would be as Iain requested for you him and possibly the party leaders to meet with those sufferers so everyone can understand exactly how bad this can get and how easily it can get like that and urgent action needs to be taken.
The third stage possibly most important would be have a press briefing immediately afterwards led by you and Iain with as many sufferers as are willing giving their stories and asking the press to help find the missing sufferers by doing stories and posting the symptoms on their websites with the instructions that anyone suffering these should print them out and take them to their doctors urgently. If they start on about nothing being done for so long I can give you a copy of the e-mail I sent to 260 TV and Radio Stations, newspapers and magazines at the end of Oct 2010 and to which no one responded, I also have the one sent prior to the debate and again no one responded. You can point out that since being made aware of this by Iain you have devoted every spare moment to researching it and devising a way to quickly and aggressively help sufferers and point using the e-mail that as to what happened prior to this no one is blame free including them

Step 5 Cost max £250,000 per annum but possibly less and reducing after one year. Iain spoke about the creation of a post within the DOH of RSD/CRPS Internet Liaison and Research Officer but I have realised that to become the world centre for the exchange and dissemination of papers and ideas will take more, there is a lot of information out there which is not being shared between countries there are 2 very good libraries of papers one in America and one in Holland yet the professor who runs the American one had never heard of the Dutch one but the Dutch appear to be the only country who have recognised that alongside CRPS type 1 and 2 there are 2 variations of type one and the second needs to treated differently, what is known in one part of America is not in other parts. What it needs is a small office with 2 or 3 fulltime staff and possibly another 2 on a one year contract to get things up and running. All need to be sufferers for at least 5 years and be Medical Professionals, as they are the only ones who can really understand the medical terminology and recognise what each paper would mean for sufferers, at least one doctor and one physiotherapist.
They would download and categorise every paper that can be found make contact with all the specialist clinics around the world asking for any papers they have produced, stating that eventually they would send out a monthly newsletter with all new information from around the world to every place that deals with CRPS. It would also be of great assistance if they could eventually get a website up with all the papers available in relevant sections and where specialists can exchange ideas and information, not only could this lead to new avenues of research but prevent exactly the same research being carried out in more than one country at a time without anybodies knowledge. I can give them details of both libraries and links to specialist facilities in a number of countries as far apart as Australia and Sweden.

Step 6 Cost no rise in the NHS budget. I read that the NHS underspent by £900 million last year and have underspent for most of the previous years. I don’t know if any of that money is still available or if it would have to start after the end of the next financial year.
A. To commit to spend 1% of any underspend to sending newly qualified doctors to the US and Holland for specialist training until there is one upto date specialist in every hospital in the UK.
B. To commit to spend 1% on training of existing medical professionals on how to diagnose CRPS, the knowledge of treatments which must not be used and who the sufferer needs to be referred to urgently. Providing the Hospital is willing to transport me. Have someone with a wheelchair to get me from the drop off point to the conference room and back do enough copies of the 4 or 5 papers for each attendee and a computer connected to a large screen monitor I would be willing to spend an hour once a fortnight teaching about this. It would be upto the DOH to contact other sufferers to see if they would be willing to do this, for uncovered areas I can send copies of everything for someone in the Hospital to give the training. Each trust must make attendance compulsory, including GP’s surgeries and outside clinics. The first ones should include one from each profession on the NHS Choices page and these people being designated within the trust as teams lead by normally unless there is a problem with seniority the Pain Doctor until a specialist is available so that any diagnosed sufferer is immediately referred to them and they can organise a treatment schedule with the whole team involved from the start
C. 1% to be devoted to research, the consensus is a 50-50 split between making life easier for sufferers such a mirror box therapy and the immugloblin research you mentioned although I personally have serious reservations over how they plan to use this and half towards a cure. I would suggest that any research requests should go to the new office where I believe they could best be evaluated and their decision possibly with consultation with you will be where the money would be spent. There is one exception to this I will explain lower down. This is less than 9% of what the NHS spent on cancer research 2011-2012
D. 1% to be spent converting existing unoccupied wards or buildings into dedicated treatment centres until there is at least one in each county so that sufferers can travel to them with least possible risk. Each centre would be permanently staffed by the top 2 teams in the area.