Do you want this to become UK Law in 2016

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.

To do it we need as many MP’s and Lords as possible to submit a private members ballot bill, we need to flood the ballot box so at least one of the 10 picked is ours.

If so make your New Years Resolution to contact your MP, to ask family and friends wherever they live to contact theirs. To contact one celebrity and ask them to help raise awareness

Join us on Facebook, The All Party Parlimentary Group for CRPS

34 Replies

oldestnewest
  • Well I started reading your post but as I don't know what CRPS is, I stopped reading. Maybe don't assume that we're all into what you're on about and explain first, then I can come back and read the post again.

    Thank you

  • CRPS is the Worlds Most Painful incurable condition Complex Regional Pain Syndrome.

    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.

  • I really hope neither you, your family or friends ever get this but you could from something as simple as a twisted ankle or sprained wrist, there is even one recorded case of it starting after a bee sting

  • Try mosquito bite it has left me in a wheelchair.

    CRPS can occur after a very trivial injury

  • Hi kevscar I will get in touch with my mp in new year and get him or her on board

    It's coming up to six years I have had crps my specialist has told me that my right foot as be amputated in new year because he wants to stop it going up my leg he hopes

    Wishing u a happy new year and I hope u get all the MPs on board

  • Whilst those who post here do so to educate the rest of us I am terrified of the statistics that you post.I have CRPS and wish to help and be positive where ever I can.WE must fight this,the medical profession in general seems to know little about the condition and it is up to sufferers to share their experiences and their successes!There must be some?

  • Yogibe Amputation is more likely to make it spread than stop it spreading Read Professor McCabe Speech in the files section of our facebook page

    Diana we have a Medical Team which so far consists of Professor's McCabe and Rodham, Dr's Mann O'Connell and Lewis. They are going to be putting together a simple 1 hr teaching plan as a start to ensure every medical professional is aware of CRPS, how to diagnose it and the 3 treatments which must never be used

  • Sorry but the research you quoted is questionable 900% is an impossible figure, I think if you got some repuatable research with linksvyou may get more support

  • 900 is not an impossible figure, if 1000 is 100% 900% of that figure is 9000.

    Every time I post links to research papers or sites Healthunlocked deletes the posts

  • Sorry but your maths really does not add up no such thing as 900% learnt that in primary school

  • Of course there is such a thing as 900%.

    Imagine you are paid £100 a year in 1990.

    In 1991 you get a pay rise of 50%. Your salary in 1991 would be £150 a year - the original £100 plus another £50.

    Or in 1991 you get a pay rise of 100%. Your salary in 1991 would be £200 a year - the original £100 plus another £100.

    Or in 1991 you get a pay rise of 900%. Your salary in 1991 would be £1000 a year - the original £100 plus another £900.

  • Thank you, Bean. There are all sorts of ways to demonstrate it, and yours is accurate. As a former maths teacher I can tell you that I am 100% certain that 900% of something can make sense.

    For example, a secret research lab created 1 zombie, then it got loose and ate 9 of the researchers thus there are 10 zombies all together.

    There was a 900% increase in the zombie population.

    *Despite our pain situations, or maybe because of them, I feel a little humour is a good thing.

  • It must be Pain Concern who deletes your links, not HU. I'm a member of some other communities on HU, and my links don't get deleted on any posts on those communities.

  • I appreciate the sentiments, but I can't see that making laws is going to help or that using the law (or parliament) is the right way of going about this. Also, what about the other thousands of complaints that also need awareness, research, etc? Sorry, I won't be singling out CRPS to lobby for.

  • Well these people disagree and more are being recruited

    Iain Stewart MP

    Stuart Andrew MP

    Lord Stone

    Baroness Young CRPS sufferer

    David Simpson MP

    Rebecca Harris MP

    Mark Durkan MP

    Simon Hoare MP

  • How dare you, they have been happy enough to take mine and Professor McCabe's word and not demand proof, they have come together to fight for the sickest people in this country, for people with no charity fighting for them, with no possibility of financial gain in fact if they accept my request it will cost them money.

    In my book that makes them a lot more reputable than people who make generalisations

  • I agree, Dan. Let's take fibromyalgia, as an example and which has been known about for ages, there are still an awful lot of GPs who know nothing of it or who still think it's a figment of one's imagination, let alone know how to treat it. More needs to be done about the treatment of pain in general.

  • You say: "CRPS is a permanent debilitating incurable condition". This is false.

    It is highly likely to be incurable by standard medical practice. It does not mean that it cannot be helped by complementary medical practitioners who have a very good understanding how muscles actually work rather than the lack of understanding of how muscles work in the medical profession.

    The medical profession do not understand how the brain has an influence on muscle function and how faulty muscle function drives pain and discomfort. If the medical professors took time to learn how muscle and brain work together instead of writing about diagnoses a lot of people would be helped to cope with the problem rather than being diagnosed with it.

    You say: "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." Papers do not teach people how to move. Papers do not help people with CRPS develop a living understanding of the integration of spinal reflexes, proprioception, muscle movement and cerebral and spinal control of muscle movement. You are talking of yet another specialization where experts make money and patients who go to them receive diagnoses but no practical help from the experts.

    It is nice to have a diagnosis. A diagnosis has a comfort value. A diagnosis does not get a muscle suffering the effects of a micro-cramp working. Only a person with the hands on ability can get the micro cramp to release and the proprioception to work better.

    What you are proposing will not help a lot of sufferers get better. It will make many sufferers worse because it will divert funding to the writers of reports rather than the health practitioners with hands on ability.

    Something for you to think about.

  • Muscle spasm is a factor often ignored by many medical consultants. The body as an engineering system is often ignored by many medical consultants. The concept of system overload of an engineering system does not enter the head of many medical consultants.

    Muscle spasm is quite often a factor in pain, but it is only part of the picture. An ignored part of the picture in many cases. When some nerves are compressed by a muscle going into spasm a lot of pain is generated. A muscle in spasm has create difficulty unspasmingly itself.

    I could not find "Central sensati" on Google. Please can you explain what this is.

    I am familiar with the issue of nerve sensations of pain as put forward by neurologists. The same neurologists who often do not have a clue how muscles actually function in reality.

    I have met rheumatologists who are willing to make a diagnosis, but are unable to physically understand how the muscles actually work.

    Please, be forthright in what you think. I will not find it a problem.

    The medical profession is geared for instant diagnosis and what can be done now. This works well for many many medical cases. It does not work particularly well for the situations where chronic conditions are in existence. Here another approach is needed. The approach of individual investigation by the person with the health disability. The approach where the medical professional helps the patient with the chronic health condition develop the tools to investigate their condition.

    No one medical treatment is effective. There is often a need for multiple treatments. I am engaged with multiple treatments and I know from my own experience that no one treatment is effective by itself. Each treatment of the multiple that I am engaged with targets a particle part of the body's engineering system and the therapist has specialities in a particular part of the way the engineering system works.

    Look forward to your comments.

  • John it is a condition of the nervous system not muscles and even if you were correct you admit in your second para it is permanent because you say helped not cured

  • Hi Kevscar

    Did not answer before because I am only informed by email about replies.

    What does one mean it is a condition of the nervous system? This is a phrase that needs a closer look. There are many types of nerves and these feed data into the spine and brain. As a result of the data feeds there is a response by the spine and brain. The response can be allowed to develop into a positive feedback loop involving the muscles and the brain and the spinal reflexes. The response can be modified by physical therapies and by adapting what one does and thinks and by a process of skilful muscle control. The skilful muscle control comes from engaging in Alexander Technique, yoga, t'ai chi, Bowen etc..

    The medical profession has a tendency to make a diagnosis and leaves it to the patient to live with the diagnosis. The patient is expected to start from a situation of no knowledge to handle what can be a quite devastating condition. It is not surprising that so many patients end up in a condition of chronic pain. Meanwhile the medical profession having made a diagnosis consider that they have no faults in the development of the patient's chronic pain condition. A diagnosis has to be lived with. A diagnosis requires a great deal of mental skill to adapt to and to develop the time management and to develop the social management and to develop the physical movement management and to develop the stress management. What does the medical profession do in all this? In most cases absolutely nothing.

    There are lots of different types of management skills that are needed to handle health disabilities. If you get the management skills wrong you can end up in a stress overload condition where the body's engineering system breaks down. The stress overload condition receives the diagnosis. No help is given to take the stress overload condition back below the stress breakdown point.

    There are many conditions that are problematic and receive no diagnosis because the condition and the management of the condition does not enable the stress caused by the condition to exceed the stress breakdown point.

    Hope this makes sense.

  • The general Consensus is that for some reason the initial trauma scrambles the pain centre of the brain. After that incoming nerve signals from the affected area are translated into extreme pain signals and resent. It's a lot more complicated than that but it's all II understand. I believe there have been some sort of scans which confirm the brain changes

  • Thanks for the reply.

    The general conclusion as you say: "for some reason the initial trauma scrambles the pain centre of the brain." This is the easy option when no other input or outputs are looked at. When all inputs start to be looked at the situation can change quite dramatically.

    In the days when some of these proposals that "initial trauma scrambles the pain centre of the brain." were being considered Clinical Fraud and fraudulent papers by medical scientists were not considered as an option. All medical scientists were considered to be truthful and honest in regard to the way they looked at data. Once a hypothesis gets into the community's lore as being truth it becomes very difficult if not impossible to shift. The conclusion: "for some reason the initial trauma scrambles the pain centre of the brain." is one of those bits of lore that was put forth by so-called eminent scientists many years ago with no one closely looking at the research for the reason that they were so-called eminent scientists.

    1993 is a year that I will always remember. Before 1993 in the UK medical consultants dismissed chiropractic as snake oil. In 1993 the British Medical Journal published the results of a trial showing that chiropractic treatment was better than physiotherapy for low back pain. Pain Gate theory and "for some reason the initial trauma scrambles the pain centre of the brain." was in existence many years before and evidence about chiropractic and other therapies removing pain was dismissed as figments of the patients imagination.

    I know about this at first hand. I used to teach people how not to have painful migraine attacks. The local GPs used to say that it would not work and they were wasting their time. The people who I had taught gave me a different story.

    There is scrambling of the Brain's pain circuits. I believe this as well. However, the Brain's pain circuits feed into how the body responds. The body's response can set up a positive feedback loop where the action of the body can actually make things worse. Remove the action of the body making things worse and the pain response can become something different.

    I had my first MRI scan in 1995 and confirmation of the cause of my problems by MRI scan in 1998. The medical profession using the psychiatric professions to try and insinuate that my mind was causing the problem is not something I will ever forget. One of the insidious tactics used by the medical profession was the definition of personality disorder. An example of a person having a personality disorder is that they do not trust a doctor. This was used a lot before the exposure of Dr Shipman. The "5th Shipman inquiry" exposed how nurses used to cover up the bad practices of doctors. Patients were blamed and the evidence that showed different had been removed by the nurses and patients were none the wiser.

    I only know and can guess rightly or wrongly a small part of the picture. You live with your pain issues 24/7. And you look for solutions to the pain issues 24/7 same as I do. We form reasons for what we experience and rely on what others tell or show us. I find from my own experience that I have to constantly check any conclusions that I have come to. It is so easy to make errors of judgement.

    Hope I have been useful.

  • Unless you are going to find this privately no one is going to take a second look health unlocked actively promotes referencing of info. Until you back up these figures with research no one will take you seriously. As for the group where email addresses went dead I would advise that you don't use this as research!

  • Professors McCabe and Rodham Dr's Lewis Mann and O'Connell are all quite happy with my figures and have joined together to become the APPG's Medical Team.

  • My word is good enough for 2 Professors, 3 doctors, 2 Minsters who are unable to join the APPG but have promised their support, 6Mp's a Baroness a Lord a Paralympian and 100,s of my fellow sufferers worldwide. If it's not good enough for you that's your problem not mine.

    I don't have the time or inclination to go back through over 4000 hrs research to dig out all the papers and links which prove what I say.

  • I have no idea what you looked at the first MP s mine, He has fought with me for CRPS sufferers since I first contacted him mid 2011, refused to be fobbed off by the DOH, got a debate 9/7/2013 and when Norman Lamb filed to keep his word carried on fighting to get the APPG. Prior to me contacting him he was heavily involved with the local fibro group.

  • It was also good enough for the EU to launch an investigation into CRPS and whether it was necessary for EU wide guidelines for CRPS and an EU working group is being formed this year to do just that

  • What you should be more concerned about is what I can't prove but my experiences as a Police officer lead me to suspect could be extremely important. This is part of an e-mail I sent to our medical team.

    There are a number of things I have found out over the years, please don’t dismiss them but look at them through your medical training and even discuss the amongst yourselves. I don’t claim they are all correct but hey should make you think.

    In Oct 2011 I cam across a US paper which described CRPS as Phantom Limb Pain with the Limb removed, my immediate thought was you got it the wrong way round. 6 months later which made me feel this was even more likely, Everyone knows that Dr Silas Weir Mitchell was the person to first Diagnose CRPS but no I’ve spoken to realised that 7 years later he came up with Phantom Limb Pain, what if that Doctor was right and for want of a better term Phantom Limb Pain is CRPS Type 3.

    I would like you to watch the first 5 mins of this video, what if this is CRPS type 4.

    I became intrigued and contacted both the Chronic Pain Policy Coalition and the Pain Foundation but was left stunned when both said they don’t have a list of the pain conditions they are trying to help but have been left wondering if you come up with an effective standardised treatment plan and hopefully one day a cure for The Worlds Most Painful Condition how many lesser conditions would they be effective on.

    It was enough to get both the Chronic Pain Policy Coalition and NHS England's Specialised Pain Service Clinical Reference Group involved with the APPG

  • This is the Speech Professor McCabe gave to the APPG, Chronic Pain Policy Coalition and NHS England's Specialised Pain Service Clinical Reference Group

    Speech for CRPS All-Party Parliamentary Group October 29th.

    I would like to thank Mr Kevin Scardifield, and Mr Iain Stewart and his team for organsing this event and givng me the opportunity to speak to you today.

    Complex Regional Pain Syndrome (CRPS). I wonder how many of you had heard of this condition prior to the invitation to attend this event? How many of your family , friends, GP, local hospital staff, social services personnel would have heard of CRPS and know the devastating impact this syndrome can have on people of all ages? I strongly suspect, very few. Most people have never heard of CRPS until they become affected, resulting in incomprehension and anxiety for individuals and their families

    And yet, approximately 10,000 people in the UK develop Complex Regional Pain Syndrome each year, and this is just adults. We do not know how many children and young people in the UK develop this condition. We do know woman are affected 3 x more frequently than men and CRPS affects people of all ages, children through to the elderly but the majority are middle aged- these people are at their peak earning potential, often caring for children or elderly parents when their lives come to an abrupt halt and their future becomes an unpredictable and frightening prospect.

    CRPS was first described by Silas Weir Mitchell in the 1800s during the American Civil war. Weir Mitchell described soldiers who had sustained battle field injuries that left them with severely painful limbs. The pain was so intense they could not tolerate touch to their limbs and Weir Mitchell graphically describes one soldier who kept a wetted cloth around his limb with the hope of cooling the burning pain and preventing a casual touch or light breeze on his skin . Opium, the strongest of pain killers would not alleviate their pain and years later these soldiers were no better.

    We now know that CRPS commonly occurs in an arm or leg after trauma or surgery. In a few cases it can occur spontaneously, that is with no obvious cause. Limb fracture is the most common presentation. Typically a person reports intense pain within hours or days after the fracture, they may perceive their plaster cast is too tight and their limb feels so swollen they fear it will explode. On removal of the cast the limb is often discoloured, grossly swollen and the severe pain extends beyond the fracture site. The limb maybe significantly colder or hotter, sweatier than the unaffected limb, dark hair maybe present, and extensive nail growth. Or conversely the skin maybe shiny and hairless.

    It is important to note that CRPS is not chronic regional pain syndrome, a term

      2

     

    that would describe persistent widespread pain conditions, such as Fibromyalgia. Complex regional pain syndrome has well described signs and symptoms that make up the international Budapest diagnostic criteria for CRPS as published by the International Association for the Study of Pain.

    People of all ages with CRPS rapidly abhor touch to their painful limb and develop significant limitations in their daily living. They cannot tolerate clothing against their skin or the touch of their bedclothes at night. Movement of the limb evokes pain so patients quickly stop moving their CRPS affected arm, or avoid weight bearing through their affected leg. The limb feels alien to them, altered in size and shape and they would choose amputation over permanently living with a limb they loathe. When amputation does occur the CRPS related pain commonly extends into the residual or adjacent limb and is also manifested as phantom limb pain meaning a prosthesis cannot be tolerated. Amputation is therefor not a recommended therapeutic option.

    Recovery from CRPS can spontaneously occur over the course of a year but approximately 20% develop long-term symptoms. Chronic pain is not simply a milder but more persistent form of acute pain. Chronic pain is as intensely uncomfortable as acute pain, and frequently increases with intensity over time. Health-related quality-of-life in CRPS is worse than other chronic conditions such as diabetes, or chronic lung disease. More than 50% of people with CRPS suffer symptoms of depression.

    So what does CRPS cost the country?

    There are no published, robust healthcare costs from a general UK CRPS patient population. However, a 1998 Netherlands study reported healthcare, medication/aids and adaptations cost approximately €5,700 per patient /year. Converting to 2015 sterling prices, and assuming 10,000 new cases/year with 20% developing lifetime symptoms, the total healthcare costs approximate to £14 million/year. This represents a substantial NHS burden.

    What about the cost to the individual and wider society?

    Only 20-30% of CRPS patients return full time to their previous employment, which has devastating financial and psychosocial impact. Employers have commonly never heard of CRPS and have little understanding about how relatively small changes to a person’s working practice could keep them employed and contributing to society. Children will of course lose crucial months of schooling, reduced friendship groups and require extra parental care. People with CRPS have added prescription costs, travel for hospital appointments, they are commonly unable to drive due to their physical

      3

     

    disability and high levels of pain killers, which results in additional transport costs.

    The knock-on effects of CRPS for families and for wider social engagement are therefore immense. BUT social services and disability payment assessment organisations are ignorant of this condition. Commonly regarding it as just widespread pain that should be worked through and will reduce over time, perhaps like an acute back pain model. This means that access to the financial, and practical social care support this population so desperately need long term, are often denied to them.

    We do not know the cause of CRPS and there is no specific intervention that can cure CRPS. Research in the past ten years has demonstrated changes in the autonomic , immune, motor and sensory systems which happen from a peripheral to central pattern of spread, probably in a matter of hours or days. Imaging data of activity in the brain demonstrates rapidly altered communication pathways between the regions responsible for managing motor and sensory information and performance, with changes in the function of the centres responsible for assessing threat and emotional response to pain.

    Animal and human research has taught us much about the underlying mechanisms that drive CRPS but we still do not know what causes it, why there is variation in signs and symptoms across the CRPS population and why people vary in their response to treatment interventions. Furthermore, although we have excellent national guidelines for the management of CRPS , many interventions described in those guidelines lack robust scientific studies to back up their inclusion. We simply have to work with the limited knowledge we have in the absence of anything better. Large clinical research trials to test current treatment pathways and emerging new interventions, are desperately needed.

    So how do we treat CRPS?

    Despite the lack of a cure, early intervention should significantly improve outcomes. Royal College of Physicians UK guidelines published in 2012, recommend a stepped pathway of care starting with analgesics, advice and encouragement to move the limb; progressing to local physical therapy and pain clinic support if symptoms are not resolving quickly. If, with these interventions, symptoms are still non-resolving after a reasonable time period (approximately 3 months), or worsening, or severe at onset then specialised multi-disciplinary rehabilitation care is recommended.

      4

     

    However, uptake of guidelines has been disappointingly poor. Identification and management of CRPS remains frustratingly inadequate. Most GPs and community therapists may have rarely encountered CRPS and have no knowledge of the common signs and symptoms, diagnostic criteria or management principles. Even hospital based personnel in Orthopaedics, pain clinics, neurology and Emergency departments are not as familiar with CRPS as they need to be. CRPS-UK Registry data, which holds more than 350 data sets, demonstrates a ‘meandering pathway of care’ with multiple consultations and poor outcomes. The average time from symptom onset to diagnosis is 6 months but the range can be weeks to many years and people commonly see more than 5 different Consultants before the correct diagnosis is given.

    Once a diagnosis is eventually achieved a Pain clinic appointment can be months away, a physio appointment weeks, and psychological support may never happen. If physiotherapy is received, advice can vary between “ I can do nothing until the pain goes” to “you can have six sessions and that is all I can provide”. For those excellent pockets of care the therapist is usually having to find a way ‘around the system’ to keep delivering the months of care required.

    The NHS no longer recognises a chronic care model of service- the focus is on acute care practice and shorter hospital stays, to the considerable detriment of the complex health needs of those with chronic conditions. Over burdened and reducing pain services leave people to the whims of non-specialist, over stretched community services.

    Furthermore, the number of centres that offer CRPS specialised care are less than a handful, and residential, interdisciplinary care is offered by even fewer centres. This leaves people with intense pain, significant physical disability and limited transport options to travel significant distances away from home and family to access the care they need. At the CRPS National centre in Bath we receive 200 referrals a year, a drop in the ocean, and commonly people are not referred until a minimum of 18 months after symptom onset, many have suffered for 5 years or more.

    So, what can be done?

    A successful model we should draw inspiration from can be found in the Netherlands. Between 2004-2011 they ran a 8 year Interdisciplinary clinical research programme focused on conditions arising from trauma, which included whiplash, repetitive strain injury, but CRPS was the primary condition. This programme comprised a consortium of academic medical centers, universities and industry.

      5

     

    They were financially supported by an initial grant of the sterling equivalent of £16.5 million, half of this cost came from a government grant of £8.5 million. Remember the average randomised, controlled clinical trial costs 2-3 million. They involved universities and patients from across the Netherlands, conducted 68 research projects, published over 100 articles and had 31 PhD students. The programme ended at 8 years in part because they were struggling to find patients for their research. Their identification of CRPS had become so efficient across so many centres.

    However, applying their research into practice has proved more problematic as in the Netherlands there is a lack of an institution which acts on behalf of patients in order to establish the best care possible. Here in the UK we have the National Institute for Health Research. The NIHR regularly invites themed calls for their many funding streams.

    My first recommendation to this All-Party Parliamentary Group is for us to request a NIHR themed call for Complex Regional Pain Syndrome across all of their research funding streams. We now have well established national and international research networks and an internationally agreed common set of data collection tools. We are in a better place than we have ever been before to conduct the research which is so desperately needed, but we need funds.

    How can we cost effectively improve care and bring specialist care closer to people’s homes?

    Firstly, a significant public awareness, health professional and social care educational campaign is required to reduce the delay in diagnosis and initiation of treatment. This undoubtedly will need to be a multi-media intervention but could include such simple steps as every plaster cast for every limb fracture has a sticker with the key signs and symptoms of CRPS. With over 70,000 distal arm fractures alone in Britain per year, that would be a lot of stickers and a lot of informed people.

    Secondly, I propose we bring specialist expertise close to home via the recently launched NHS England Vangaurd sites. This currently takes such specialists as those at Moorfields eye hospital, to local regions. This has the dual benefit of educating local teams but also bringing the very specialist expertise, that requires further education and years of experience, direct to the patient in a timely manner. Using our current CRPS specialist personnel in this way is the quickest way, to my mind to make a significant difference. Retention of current services and the promotion of multi-disciplinary education must of course run in parallel with this, but the benefits of education will only be realised over time. I don't think we can keep waiting.

      6

     

    In summary, CRPS is a highly distressing and disabling condition which affects children and adults, is poorly recognised, often inadequately treated and under researched. Much of the personal burden, associated distress and unnecessary NHS and social care cost could be avoidable. Please help us make this so.

  • I noticed the following: "Despite the lack of a cure, early intervention should significantly improve outcomes. Royal College of Physicians UK guidelines published in 2012, recommend a stepped pathway of care starting with analgesics, advice and encouragement to move the limb; progressing to local physical therapy and pain clinic support if symptoms are not resolving quickly. If, with these interventions, symptoms are still non-resolving after a reasonable time period (approximately 3 months), or worsening, or severe at onset then specialised multi-disciplinary rehabilitation care is recommended. "

    This is the start of the mess. Advice and encourage does not help if the movement being done is done if a faulty muscular manner. Moving in a faulty muscular manner inflames the tissue. Inflamed tissue expands pressing on surrounding structures and surrounding structures apply pressure back on the inflamed tissue. This is easy to understand from an engineering and system viewpoint. Unfortunately, Feedback mechanisms and engineering is not part of a medical person's training.

    Local physical therapy tends to be do this exercise with no instruction on how to do this exercise. There is also no consideration of how the body needs to be balanced when the exercises are being done. So local physical therapy becomes a means of ticking a box. In that this treatment is done.

    Sorry not very impressed.

  • and this is the one I gave

    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. I would now like to hand over to Professor McCabe

  • Jeeze but it's a lot of stuff to get them to do ,but especially with such an unknown (in the UK that is) and difficult to believe one at that, and I'm not saying I don't believe, but as someone who has had pain for 30 years or so, and in the last 10, have banged my drum and head against a brick wall in trying to get someone to listen, let alone diagnose and to be accepted by the medical professionals, which in my opinion are the last ones to accept that pain over a long period is anything real, other than in your head, or that it is not something that one has to cope and fight (if you want some kind of life) possibly for the rest of your life.

    So I'm sorry I do not think it will ever be an accepted condition when so many other accepted condition's are fighting to be heard.

    I have heard of it, and accept it as a condition, but I can hear so many louder voices shouting it down due to cost alone, but I do wish you well , best Alex.

  • Thanks Alex This is a full list of the symptoms don't know if they match your problems. According to the Budapest Criteria you need 3 of the 4 main ones.

    CRPS Symptoms - Description:

    FOUR Main Symptoms/Criteria for a diagnosis of CRPS:

    •Chronic burning or freezing pain - includes allodynia; extreme sensitivity to touch, sound, vibration, wind, and temperature.

    •Inflammation - this can affect the appearance of the skin; bruising, mottling, shiny appearance, blotchy or pale appearance, and tiny red dots are some examples.

    •Spasms - in blood vessels and muscles of the extremities, called vasoconstriction,

    •Insomnia/Emotional Disturbance - (including limbic system changes such as short-term memory problems, concentration difficulties, and irritability).

    Not all four symptoms are required for a diagnosis but most patients do have at least three out of the four at any one time. There are a great many additional symptoms that can occur but not all patients will have all symptoms. Some of the symptoms may even be transient depending on the Stage the patient is in; the time of day, weather, noise level, current medications, whether or not the patient was treated with ice or hot/cold contrast therapy, etc. What makes this disease even more difficult for Doctors to diagnose and treat is that patients can present with different symptoms at different times, even from one appointment to the next.

    1) The CONSTANT PAIN can be described as a burning pain. It feels as if a red hot poker were inserted into the affected area. it is also described as throbbing, aching stabbing, sharp, tingling, and/or crushing in the effected area; this is not always the site of the trauma. The effected area is usually hot or cold to the touch. The pain will be more severe than anticipated for the type of injury sustained. This is a hallmark of the disease. Allodynia is typically present as well. Allodynia is an extreme sensitivity to touch, sound, vibration, barometric pressure changes, loud noises, wind/breeze, temperature, clothing, and even the gentle touch of a loved one. This makes it increasingly difficult on the spouses, children, and other family members; as their softest touch can now cause pain instead of comfort. If the patient has not been properly diagnosed yet and these sensations not properly explained, these symptoms can cause extreme duress and confusion to all involved.

    2) The INFLAMMATION is not always present in the same form but it can take various forms; the skin may appear mottled, become easily bruised, bleeding in the skin, small red dots, have a shiny, dry, red, and "tight" look to it. In addition; increase in sweating usually occurs as well as swelling in and around the joints (shoulders, knees, wrists). In some patients a lack of sweating may occur, and some even go back and forth between the two.

    3) The SPASMS result in a feeling of coldness in the effected extremity as well as body fatigue, skin rashes, low-grade fever, swelling (edema), sores, dystonia, and tremors. The spasms can be confined to one area or be rolling in nature; moving up and down the leg, arm, or back. They can involve not only muscles but also blood vessels.

    4) The fourth part of this square is INSOMNIA and EMOTIONAL DISTURBANCE. CRPS affects the limbic system of the brain. Doctor Hooshang Hooshmand described it well: "The fact that the sympathetic sensory nerve fibers carrying the sympathetic pain and impulse up to the brain terminate in the part of the brain called "limbic system". This limbic (marginal) system which is positioned between the old brain (brainstem) and the new brain (cerebral hemispheres) is mainly located over the temporal and frontal lobes of the brain." This causes many problems that might not initially be linked to a disease like CRPS; chief among them are depression, insomnia and short-term memory problems but also includes agitation, irritability, and possibly even poor judgement.

    CRPS can cause Depression, NOT the other way around.

    CRPS causes insomnia by not allowing the body to drift into REM, or rapid eye movement, sleep. This is the sleep that allows the body to use its own healing abilities. Without it, the patient's pain cycle continues and becomes more entrenched. As the body cannot heal itself, it becomes harder to achieve that sleep, which makes the pain worse and so the cycle continues. Many patients can feel they are losing their mind as their ability to remember things, short-term, greatly decreases. Things like: what someone told you an hour ago, what you had for lunch yesterday, whether you took your pills this morning, what you were just talking about, etc., are quickly forgotten. You are NOT losing your mind. Loss of short-term memory is part and parcel of CRPS. Other signs of problems here would include the inability to think of, um, well, ah, hmm, just the right word. The patient's ability to concentrate is also lessened while their level of irritability is increased. These problems get even worse as the sleep cycle continues to worsen, weeks and months on end building a sleep deficit you cannot seem to recover from.

    Do these symptoms sound familiar to you? Do you also sometimes have an increase in your pain when your stress level is higher? Or the noise level is higher? Do you want to crawl into a hole by yourself and pull it in after you? Does the simple rustling of a newspaper or the soft touch of your spouse send you through the ceiling in pain? Do you sometimes have trouble finding a certain word? Do you sometimes completely lose track of what you are saying? If these symptoms sound familiar, know this; you are NOT crazy and you are NOT losing your mind. You are also not alone, not anymore.

    ADDITIONAL SYMPTOMS

    There are many additional symptoms that can be part of CRPS besides the four main ones. These include but are not limited to;

    - changes in skin temperature (warmer or cooler compared to the healthy/opposite limb).

    - changes in skin color (skin may appear red, dusky, covered with red dots, cyanotic, blotchy, or pale).

    - hypersensitivity to touch, sound, vibration, wind, noise, temperature, barometric pressure changes, water temperature, etc.

    - irritability.

    - depression, fatigue, and/or insomnia.

    - changes in hair/nail growth (nails can become brittle, cracked, or grooved - increased/decreased hair/nail growth).

    - skin can become shiny, changes in sweating patterns - increase/decreases.

    - bone and muscle loss/changes, atrophy/weakness.

    - swelling and stiffness in effected joints.

    - throbbing, crushing, tingling, shooting, aching, stabbing, burning pain in the effected area.

    - tremors (shakes).

    - problems moving the effected extremity/body part.

    - migraines/cluster headaches.

    These symptoms can come and go and alternate over time, changing from month to month and year to year depending what stage the patient is in, what treatment they are on, what medications they are using, how successful these treatments are, how the disease is progressing, and/or what other disease(s) might be introduced along the way. One of the many problems for Doctors in treating this disease is that many patients present differently and the symptoms can vary not only with the stage the patient is in but even the time of day the patient sees the Doctor!

You may also like...