So Pissed off

Prince Charles refused to help in 2012 today I get a letter Prince William won't help either

[Bananas5]

And if i don't know what this is about - I won't help either.

Pat x

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Nor me

[CarolineC57]

Yes, can you explain what you're talking about here Kevscar? I noticed another post from you the other day something about a "Westminster Briefing"? I don't know what that is. Is this something to do with it too? Please explain. Thanks!

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I have been fighting to get help, raise awareness of RSD/CRPS since 29/10/2010. Eventually we got a debate in Westminster 9/7/2013

parliamentlive.tv/Main/Play...

Norman Lamb said after that if I sent in a list of suggestions he would go through them with Iain to see what could b done to help. He has failed to keep his word. Some sufferers have e-mailed their MP's and they are forming a cross party group to force action. I will be briefing these MP's and the press at Westminster so we can find the 240 - 464000 un/misdiagnosed sufferers in the UK but need morre MP's and sufferers to attend to ensure it's success

[Bananas5]

Hello Kevscar

Yes i do remember your earlier posts on this topic.

By 'Iain' I tale it you mean Iain Duncan Smith? I will keep ,my feelings about that thing to myself.

Havung campaigned for too many years on changes ro welfare - for all chronically sick, disabled and carers I know how hard it is. Promises are made by MPs of both sides and broken as quickly.

Getting any sick and or disabled people to Westminster is extremely hard. Distance to travel, cost and time are barriers most can not overcome.

We have a very successful, and activem cross party group on chronic pain here in Scotland. If you want any help or advice from them I can put you in touch if that helps. Just ask.

You will find with any campaign involving sick and disabled people there will always be a small core group who do all the work while others will join as and when they can. But never give up - we haven;t. And a bery little blow on my own trumpet, Pat's Petitiom secired am Opposition Day at Westminster back in 2012 - result of the vote was no but as the Tories introduced the bill that was no real surprise. Nut it did draw huge media arttention and at long last people are realising what is happening to us all.

Out of interest - if you get your cross party group going and get awaremess of thse conditions - what wil tou do next? how will you be able to help sufferers when they identify themselves?

Meantime if you want anything publicised please shout.

Pat x

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No I mean my MP Iain Stewart These are the 7 steps we will be fighting for and using the press to help find the un/misdiagnosed.

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.

Step 7 I have done over 3000hrs internet research, with no medical training I had to approach it the only way I knew how, as a Police Officer with 8 ½ years experience who was lucky enough to only lose one case in court. Search everywhere I could, looking for clues and evidence follow every trail no matter where it lead and when it ended go back and follow another, piecing everything together into a case that would convince any judge and jury in the land. I have to ask you to trust me on this, because of the way my brain works now I didn’t realise the significance of some papers until months later or because of the mental and motor control problems I hadn’t saved them when I thought I had.

In the space of 7 days in Oct 2010 I came across papers by 3 US doctors working in separate Hospitals, unless as I suspect the 1st and 3rd are ex-US army there was no apparent connection between them. The first was a surgeon who stated that since he had started using a full sympathetic nerve block from 48hrs pre-op to 48hrs post-op not one of his amputees had suffered from Phantom Limb Pain. The second doctor described CRPS pain as Phantom Limb Pain with the limb still attached. The third stated that since he had started using continuous full sympathetic nerve blocks not one operation on a CRPS sufferer had caused a spread or flare.

In late 2011 I came across a paper detailing US army surgeons research into Phantom Limb Pain which was started in the early 2000’s. It stated that they had found a direct link between the incidence and severity of pre-op pain and the incidence and severity of Phantom Limb pain. They came to the conclusion that the initial pain was so bad that it burnt itself so deeply into the brain that the brain could not forget it, (exactly the same as CRPS does) if they could eliminate the pain prior to amputation there would be no phantom limb pain afterwards. How they got from there to the successful use of full sympathetic nerve blocks I have no idea.

I later came across posts by 6 CRPS sufferers who had amputations using this method while awake, It is suspected that general anaesthetics themselves can cause spreads, everyone stated that they had no phantom limb pain and no more CRPS symptoms, 2 had already had artificial limbs fitted and returned to work. Now no amputation should cure mental problems a fact confirmed by Professor Briggs at the RNOH. This has led me to the belief that the Americans have discovered a cure for CRPS but because of a lack of communication they have failed to recognise it yet.

I asked Professor Briggs to bring me in and give me a continuous Full Sympathetic Nerve Block for a period of 5 days, if at the end of that period the symptoms have completely disappeared then its likely we have a cure, obviously further trials would need to be undertaken. If the symptoms do not dissipate on the 6th day my arm would be amputated below the elbow while I am awake. Although this would not help me as it is in both legs as well I feel it is the only way to prove to our doctors that there is a safe way for them to operate on CRPS sufferers and a way to prevent anymore amputees developing phantom limb pain. I have given Professor Briggs a disclaimer absolving him of any blame should anything go wrong but cannot get him to make a decision, despite saying that I wanted no more appointments either a yes or no on the procedure I have been sent another appointment for 24th Jan next year, by that time I could well be one of the full body sufferers, this has now been put back to February.

I believe that the chance to find a cure or at the very least prevent any one in the future suffering from Phantom Limb Pain or an unnecessary spread of CRPS/RSD in this country is worth any risk to myself so I ask the DoH to arrange and fund this procedure as the UK’s first clinical trial into finding a cure and I am willing to sign any form of disclaimer your dept requires. The savings in the costs of appointments and medication for Phantom Limb Pain sufferers alone would eventually more than cover the cost of the procedure and if it is a cure the savings could be in the billions.

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I successfully petitioned the EU and after an investigate they are looking into the need for EU wide guidelines on the treatment of CRPS but no idea how long that will take

[Bananas5]

Well I did ask!

Unfortunately tje preventative costs are far less than the treatment costs. But still no money available for initial outlay. The old provern...A stitch in time saves 9 is as true today as ever.

With all the cuts to MHS, social care and benefits only going to get a whole heap worse I am not sure what the answer is. We have only witnesed the tip of the iceberg with cuts to benefits with a further 60% cuts in welfare budget to come.

Keep going but not to the detrament to your own heath. Sadly the safety not for us all has gone.

Pat x

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Ok, there's a lot going on. Getting America to share their knowledge will be difficult. Are there any other countries with success? Eastern Europe can be surprising medically. They have strong physio success, there may be some cross over with neurology.

Don't exclude alternative therapies - I know people who use them are in a minority and there is a continual debate about whether they work or not, but the brain is powerful, if it can create pain it can stop creating pain. It is that simple. There are deep meditation techniques that can reach the part of the brain concerned. That would be a cheap solution too, and less risky to the patient than surgery.

We have become rather complacent as a society about surgery and the disabled, too many people have been failed by it. Or as in my case, I have been advised to wait until I am totally affected physically, so that if the surgery fails, I would be no worse off. I could have the op tomorrow, but it's 50/50, not good odds at all.

Your type of surgery needs a very high success rate 80%+ and the reasons for failure well documented and explored. Nobody asks about the failures prior to surgery, that's way more important than knowing about the successes, after all, you would be having surgery to improve your life, and any improvement is a bonus. But failure, compacts in a very different way.

Maybe a lesser Royal would help? Zara, D & D Windsor, Beatrice and Eugenie. Or an author, actor, radio person. Just choose carefully as reputation works both ways.

[Boozybird]

Prince Charles knows all about pain with his back! What was the reason you were given that he couldn't help? What were you asking him to do? And the other one - William? Perhaps Harry might be a better bet coz he does all that work with disabled war veterans?

[CarolineC57]

Ah right, I understand what you're doing now Kevscar. CRPS isn't what I've got so I'm afraid I know nothing about that condition. I've got fibromyalgia, osteoarthritis and possible auto-immune problems myself.

Good luck to you in your fight. It's great to see people actively involved in campaigning for better treatment like this.

[Michelle1974]

I would love to help as well but I can't. I am not to familiar with the royals,I have always felt a touch out of their league when I go and visit them.

Prince Philip is a good laugh and he is rude at times.

The queen,well she doesn't like me since I told her that I always fall asleep during her Christmas speach she looks at me like I'm below her,like she is more special. I don't get my jewellery from where she gets hers and my wrist and neck always have that familiar green line that Argos Jewellery leaves you with but so what,you must all agree that she dresses old fashioned. Put your Leopard skin patterned play suit on with a nice mink coat and red stilletoes and the look she gives ,well you would swear she thought you was a lady of the night.

Give up on the royals and just don't forget all these urgent issues you have.

Try number 10 hang around there dressed in what I wore when I met the queen and they grasp the right meaning,they won't humour you, if you can steal a mobile phone and go to those lovely journalists with the tale ,they will have the phone straight of you and that's not all,keep your dignity like me my husband says he should know I don't mess around with dignities and such like. They need to start treating me like someone special at least, the board of goveners moved me to a special school when I was younger,see I am special. I am the queens husbands ,best friends ,,daughter of their famous Aunt and Uncle,but then it goes on to me being adopted by someone they said the royals knew well and my parents can't remember them! Just my luck,bring back good old Prince Charles who will one day be supple enough from the Botox to smile or am I mistaken there is nothing for him to smile for and as for Botox Chamilla had all that.

Any way let me think on and go through my contacts and I may find someone who has a clue to what I am on about or maybe understand your kind self.

Hope it helps, it should

Michelle ( on a really good day!!)

You have a good day too. X

[brimstone1]

I know you must feel annoyed over this but sorry to say it doesn't do any of us whom have CRPS or cps any good. little has been even researched into pain management in the last twenty years and most of us whom have this condition have to fight ill informed doctors surgeons and other medical departments. Wish I knew the answer but until more funding is allocated we generally are guineapigs and have to pray for help until this condition is taken more seriously like which has started to happen in America. Understanding and being able to talk to other like in this group does help getting through the bad days with respect Peter

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Paton Based on 4 medical reports we have between 240 - 464,000 un/misdiagnosed in the UK from US surveys and our benefits system this costs the country between £3 & 4,5 billion a year. My steps would mean an increase in DoH spending of £500.000 and virtually no increase in the NHS budget.

Zanna Professor Howard Black runs a US Website which collects every medical paper that he has found and the Dutch have a library of all their research papers. No CRPS sufferer should have an operation unless it is to save their lives as it is virtually certain to cause a spread or to start at the incision point.

Boozybird I wrote asking if he would be willing to help raise awareness, the reply said he was too busy.

CarolineC57 The UK is the only country in the World where when CRPS goes full body, 4 limbs torso neck scalp eyes mouth and internal organs they change the diagnosis. At first the specialist refused to tell me what to, I later found out they change it to fibro.

brimstone1 That's what this briefing is about the DoH may e able to ignore my MP but if we get a big enough cross party group and the press then they cannot ignore us, also the press are the fastest way to find the un/misdiagnosed. We need sufferers there so the press have stories to run and not make it a one day story.

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Email every newspaper in the uk same with the leaders of the party's labour tory lib den ukkip Green Party contact the bbc itv sky cnn someone said get a famous face onboard they love the PR (A list) have you tried a online petition ? Change is another that gets attention from the public

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Started 9 petitions worldwide including change best one got just over 1200 signatures. 2010 sent to 60+ TV and radio stations, newspapers and magazines not one replied

International RSD Awareness Week 1 – 7 Nov

Dear Sir/Madam

Do you know what RSD is? Do you know what its sufferers go through? Before you read further please ask your colleagues the same question.

Like the rest of the UK population I will bet 99.9% said no. Unfortunately the same is true from my experience of 95% of the NHS. Of the remainder 4.9% know enough to be dangerous to sufferers. When I did an internet search for RSD Specialists in the UK I found 12 although there are probably more. Yet according to the McGill Pain index this is the most painful condition known to man. If you were to sit there at your desk now and proceed to saw off your hand the pain would still be less than what an RSD sufferer has to go through on most days.

This site is probably the best to show you what RSD is and what it does to it’s sufferers.

rsdhope.org/Showpage.asp?PA...

rsdhope.org/Showpage.asp?PA...

I cannot go into specific details of my own case due to forthcoming civil, disciplinary and it is highly likely criminal proceedings. However the surgeon whose operation caused the RSD stated on 2 occasions he had no idea what was wrong and had never seen anything like it before. It was not until 63 days after the operation that he sent me to hand therapists. They informed me that I had RSD, they did not tell me what it stood for or anything about the condition. Subsequent research found the NHS website, the right hand panel tells you who I should have been referred to immediately they made this diagnosis.

nhs.uk/Conditions/Complex-R...

They referred me to no one and started what I later found out to be the 2nd worst possible treatment for RSD and it now appears that that treatment may have caused damage to my blood vessels. They also used aggressive therapy another big no-no for RSD suffers. Somehow in approx 45 treatments they also missed that the lump sticking up from my hand was a broken bone.

When I discovered this I was referred to a different orthopaedic surgeon. He stated that I had signs of RSD and if I had more hand therapy and pain clinic he would break and reset the bone. Luckily when he discovered I was taking legal action against the hand therapists he went back on his word and said he would not see me again.. I say luckily because I later discovered that any operation in an area affected by RSD can cause it to spread or flare up in another part of the body.

The pain Doctor he sent me to did 5 operations under sedation to put nerve blockers in and arranged for acupuncture and tens treatments. None of these had any effect in reducing the pain levels. When he reviewed my treatment and I told him I was going to see an RSD Specialist at Addenbrookes he claimed he was an RSD Specialist which I found strange because there are American Medical papers going back as far as 1993 stating the type of block he used is ineffective against RSD and it is also well known that sticking needles into an RSD affected area can cause it to spread.

It wasn’t until a year after the incident that I got to see Dr Shenker at Addenbrookes Hospital. He wasn’t originally at the appointment but when the Doctor I saw realised how bad I was she phoned him and he came straight over. He spent about 2 ½ hrs with me even being late to go to a meeting. He tried to reassure me and promised all the support he could give but it became evident that there is no cure for RSD and all they can do is try to reduce the pain level through various types to medication.

One of the big problems with RSD is it takes away the ability to control your emotions in a lot of cases. The following day I saw a third orthopaedic surgeon but as I tried to explain things I kept breaking down in tears. He told me I did not need him I needed a psychologist. There lies the problem there are 10,000’s of people out there suffering because the medical professionals they have seen have never heard of RSD and tell them it’s all in their heads.

When I first started to research RSD I tried to explain it to my wife and she compared it to cancer. There is really no comparison.

Cancer NHS spends Millions every year on Research. As far as I can find out and I may be wrong nothing is spent researching RSD.

Cancer has Charities which finance research and give support to sufferers and their families. RSD has none.

Cancer can be operated on to remove the infection. An operation in an RSD area may cause it to spread.

Cancer Treatment can give a cancer free remission lasting years. RSD treatment may give a remission which means you suffer less pain for a while but there is still pain.

Cancer at it worst will kill you. RSD at its worst will make you pray for death. According to one story, the suicide rate for people with this disease is 900% higher than for any other group of people.

Given the choice between keeping my RSD or swapping it for Terminal cancer which would kill me within a month I would not hesitate to swap as I know my suffering would end soon.

RSD affects every part of a sufferer’s life. Despite being told by to different depts. at the Hospital to drive I knew and told them it was not safe and I could end up on a death by dangerous driving charge and I refused. They both made out that I was a work shy malingerer so I was forced to inform the DVLA who on looking at their records decided I was not safe and took my licence away.

Nothing can be spontaneous for an RSD suffer. Trips out need to be pre-planned and you have to psyche yourself up because you know what’s coming. The touch of a sunray makes my hand instantly feel as if it’s on fire, 50 factor suncream will give protection for about half an hour but after that a burning pain starts deep within the hand. Ok apply cream make sure you put it in your pocket. Wait there’s a cool breeze, this will turn my hand to ice instantly, 15 to 20 mins exposure or repeated short exposures cause it to spread to my torso. Bright sunny day and I am sat in the house wearing sweatshirt, cardigan and fleece shivering. Ok need to put gloves on. Wait hand is swollen and deformed, first touch of the material is painful, no can’t wear them just have to suffer. In the car, wife pulls away real slow because we both know what’s coming. Down the kerb god that hurt. 2 speed bumps to the end of our road, she goes as slow as she reasonably can but each one and every bit of uneven road surface sends a shooting pain through my hand. I don’t want to do this please let me go home, but I can’t I’ve put on 5 stone and she’s worried I will have a heart attack. It’s a 10 pain filled minute drive to the city and then the fun really begins. The slightest knock or someone bumping into my hand is liable to leave me curled up on the floor desperately trying not to scream loud enough to wake the dead. We can no longer hold hands, my wife has to walk in front to try and protect me while I hold my hand up across my chest to avoid people passing by. Every step sends a pulse up my legs, through my torso and down my hand to cause a wave of pain. After 10 mins I just have to stop, sit down have a cup of coffee and get ready for more. Another 10 – 15 mins walking and it’s no good I have to ask her to take me home.

Apart from Hospital/Doctors appointment I haven’t gone out more than 8 -10 times this year.

Sleep is badly affected by RSD. My average sleep period is 4 hrs, a good/bad night is 6 very occasional I have slept7 ½ hrs but during a recent bad spell I slept for a grand total of 22 mins before being awake for another 20+ hrs.

This is an improvement because for the first 5 months I did not sleep for more than 4 hrs once and once or twice a week I would be awake for over 40 hrs before the tiredness overcame the pain. I said good/bad night that is because the longer I sleep the more my fingers seize up and the more painful they are to get moving again in the morning.

When I started my internet search the only UK site I found had been shutdown some years ago so I ended up at the one in the first link I gave you. I e-mailed them but was told that as my pain was not chronic 24/7 I did not have RSD, yes even long time suffers can be wrong about this condition. So I was trying to cope with something I didn’t understand, pain I couldn’t believe and mood swings which I sometimes didn’t even realise were happening. Scaring my family so badly that my 2 youngest granddaughters no longer want to come and stay for the weekend.

In September after following links through 3 or 4 international sites I finally found a UK RSD website with a forum. fightingrsd.com/ The relief of finally finding people who understood what I was going through, who were willing to give advice and support was enormous. I also realised that in fact I was very lucky, surveys show that this spreads in 70 – 80 % of suffers yet despite all the mistreatments I had gone through it hadn’t. It showed there were people a lot worse than me who had been battling for years and been treated worse by the medical profession than I had. It also made me realise that something had to be done to raise awareness of this terrible condition throughout the country.

I know that normally all News Organisations are in competition for headlines and exclusives but I ask that you all work together on this occasion. Together you may have enough power to persuade the Health Minister to insist that every trust, surgery and private clinic in the country ensures that every one of it’s medical personal visits the NHS website and reads up on this condition. Together you reach every walk of life in this country so maybe the consultant who last week told Mr X that it was all in his mind will realise that his patient has a serious life changing condition. Together you may reach the Doctor, nurse or therapist treating Mrs Y and they may realise that she is suffering from this or that the treatment they are giving their patient could make things worse not better. Together you may reach the man in Cardiff curled up in a ball crying with more pain than you can imagine and he will realise that this is what’s wrong with him and he will be able to get specialist help or the woman in Glasgow in the same position knowing she has this but has no one giving her support will be able to visit the site. Together you will reach relatives who will realise that their loved ones are suffering this and they will be able to get them help. Together you may even help those of us on the site who all try to hide exactly how bad this is from our families. They may realise that this is why we suddenly turn snappy or pull out of a pre-planned event.

If none of these reasons are good enough for you then do it for yourselves because one day through something as simple as a sprained ankle or in my case a broken hand bone you could be going through what we have/are and this condition is not something you would wish on your worst enemy.

I am currently starting legal proceedings against the NHS in the hope of getting enough compensation to go abroad have the hand amputated and get an artificial one so I can get my life back and return to work so my name or story must not be used however there are people on the site who would be willing to be interviewed. There are stories on this site you may be able to use. rsdalert.co.uk/index.html The owner of this site is willing to be interviewed. rsdhelp.co.uk

This American site is a good source of information for you. rsdsa.org/index2.html as is this one rsdcrpslifesavers.org/index...

There are specialists in the Rheumatology Dept at Addenbrookes, the Bath Pain Clinic and the Walton Centre, Liverpool you could approach.

Probably the best story to start with if she is willing would be Danielle Brown the Commonwealth Gold Medallist and RSD suffer.

Based on US figures there are probably 240,000 suffers in the UK most of whom have been told it’s in their heads. I hope that between you, you can come up with enough for all of you to run a story everyday throughout the week and help thousands of people.

Kevin

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Lost track of who I e-mailed but it included Status Quo Noel Edmonds Olly Murs CEO's of all our top Companies Various Lords. Amazons CEO said they would only support cancer research Soe Lords re[lied stating it was for the House of Commons the vast majority never replied

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Have you done HM government petitions ? If email is not working ring them up facebook Twitter tumblr youtube all social media sites

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Yes Government petition only got 200 signatures you need 100,000, Facebook got some sufferers to e-mail their MP's other promised to but didn't

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Get back in touch with norman lamb says he's broken his promise on his Twitter page keep on at him i do hope you get somewhere don't give up keep fighting

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Lamb had his chance, Hopefully the press will force his sacking