This is the Speech I gave at the APPG yesterday

Iain Stewart has agreed to forward it to all members that couldn't attend

I would like to thank everybody here for giving up their time to come today, especially Iain Stewart who has fought to raise awareness since I first contacted him in 2011, Ian Stafford a Northern Ireland sufferer who unfortunately I will never meet, He was the first sufferer to contact me saying he wanted to help and then actually do something and to the 2 Alex’s Iain Assistants who have worked so hard to bring both of the meeting about. It is solely down to their efforts that we are here today.

You all know that CRPS is the Worlds Most Painful Incurable condition and I would like to ask 3 things of you which if you agree will I believe make history and give sufferers hope for the future, before I do that I want to run through some figures which I know some of you are aware of but need I feel to be restated.

There are approx 16,000 diagnosed CRPS sufferers in the UK but figures from 4 different medical sources indicate there could be between 240,000 and 460,000 un/misdiagnosed as well. Why because 95% of the medical profession have never heard of CRPS not just in the UK but in most other countries around the world, in fact as far as I know Spain is the only country which teaches CRPS in all it’s medical schools.

According to US studies sufferers are 900% more likely to commit suicide than any other group in the World and in the long term 25% do take there own lives that works out to 15% of the annual UK suicide rate however as most of them have not been diagnosed it will go down as depression or some other form of mental illness. I cannot tell you how accurate that figure is but what I can tell you is that last year I came across a US website with 13 members, 8 of them committed suicide within a 12 month period and the site is no longer live, Since I first started researching there are 30 – 40 sufferers who I was in regular contact with who stopped responding and whose e-mail address eventually went dead. I have also attempted suicide and have been told by many others that they have tried or at least seriously thought about it.

66% will never work again, it will spread in 77%, It is the only condition in the World that can start from something as trivial as a sprained wrist or twisted ankle, in one recorded case from a bee sting and go full body all 4 limbs, torso, neck, scalp, eyes mouth and Internal organs. There are sufferers who wanted to be here today but it was impossible for them to make the trip one lady I have known for around 3 years Sonia Green who designed the CRPS Ribbon is confined to her bed only leaving it for ambulance trips to hospital, she has to be given a general anaesthetic before she can even have her nails cut, had it in every part of her body except her hands but she has recently told me it is spreading into them as well now. It does this in approximately 10% of us. 7 – 8% of us may get wounds that take a very long time to heal and in the worst cases never do.

The DoH has failed to comply with my request for 2013/14 and 14/15 figures but these are the official ones for 2009 – 2013. Money spent on Cancer research £439.7 million. The Estimated real-terms expenditure on NHS cancer services for that period is £22.84 billion. The money spent on CRPS research in that period is £500,000 and the real-term expenditure is so low they cannot even guess at a figure.

According to Clinicaltrials.gov the number of cancer studies since the start of modern day clinical trials is 50597 for CRPS that number is 190

According to the Charities Commission there are 164,889 UK Charities of which 1027 are devoted to cancer, 13 bring in over 10 million a year, 39 bring in between 1 and 10 million a year, 24 bring in between ½ and 1 million, 85 bring in between 1 and 500,000, CRPS has none, there was one which shutdown in 2007, one person who claimed to be involved said they could not get enough donations to keep going even though you are only required by law to have an annual income of £5000. In 5 years and well over 1000 e-mails I have not been able to find any person organisation or company willing to help start and maintain a CRPS charity

That brings me to my first request, I know there was a lot of publicity that many of you thought your pay rise was too much so I am humbly asking each of you to consider making an annual £1000 donation to form the All Party Parliamentary Group Charity for CRPS, I know things are different in the House of Lords but I hope your Lordship will be willing to match the MP’s donations. I would request that 2 or 3 of you, Professor McCabe or one of her colleagues and 2 of my fellow sufferers here today become the trusties. It would allow me and my fellow sufferers to donate when we could, to arrange events to raise money for the charity and I know of a company willing to make items with our logo on and donate parts of every sale to the charity.

The aim of the charity would be to build and maintain a website with a forum and database which would bring sufferers together to form local support groups and provide CRPS Specialists with specific data which would help in their research, To promote an awareness campaign and if possible to provide interest free loans to sufferers who are left penniless while appealing ESA decisions repayable once the case is won and backdated payments are received, any money left over at the end of each year would be added to the CRPS research fund.

My second request if you agree to the first is that one or more of you submit an early day motion and if it’s possible do something similar in the House of Lords describing this condition asking for members to join this APPG and whether they are willing to do so or not if they are willing to commit to an Annual £1000 donation to the APPG Charity for CRPS. There are currently 1464 members of both Houses, if between you you could get 250 to commit to this donation it would allow us do the things I have outlined above and probably more.

Some of my fellow sufferers and I have come up with a list of things we feel need to be achieved, these are in no particular order.

1.The Government to recognise the 1st week of November as National CRPS Awareness Week.

2.The DoH to e-mail every trust, hospital, surgery and clinic in the country informing them of the existence of CRPS, it’s symptoms, the 3 treatments which must never be used and that eventually all medical professionals will be required to attend a CRPS Course. They have twice refused my request to do this even though on the second occasion I offer to pay the cost from my benefits

3.The DoH to form an office of CRPS Internet Liaison and Research staffed by at least 3 medically trained CRPS sufferers to make contact with specialist centres around the world, to Collect, Collate, Exchange and Disseminate CRPS Papers so that he UK becomes the leading CRPS information centre in the World.

4.The DWP to recognize that CRPS is a permanent debilitating incurable condition that can only be assessed by a qualified Doctor who has received training in the symptoms of CRPS by attending an approved course and can demonstrate extensive knowledge of the risks both mental and physical to the sufferer. That all benefit payments must continue uninterrupted until their contractors have sufficient doctors to do so.

5.The NHS be required to set up a £40 million CRPS fund from there Annual Budget

£10 million to be spent on teaching CRPS at all medicals schools and also in all hospitals until every existing medical professional knows the symptoms and how to diagnose CRPS under a teaching regime to be formatted by Professor McCabe and her colleagues. Each Hospital to form 2 multi-disciplinary CRPS teams as per the NHS Choices web page.

£10 million to be spent on sending newly qualified doctors abroad to receive specialist training until every hospital has at least one CRPS specialist.

£10 million to be spent on converting existing unoccupied buildings and wards into a dedicated CRPS Treatment Centre with both in and outpatient facilities staffed and equipped to a plan drawn up by Professor McCabe and her colleagues so patients can attend with the least risk to themselves due to extended travelling or long waiting lists.

Any remaining funds from the above 3 to be added to the following year’s £10 million research fund. I first read about stage 1 of Dr Goebbels Immugloblin trials in an article in Tehran news dated 2008. I spoke to Dr Goebels on Tuesday he first applied for funding in 2006 and only got funding for stage 2 in 2012/13 and the trial will not be complete until early next year. Once his papers have been submitted and accepted he then has to get funding for stage 3 so he believes that he will not get approval for general use of his treatment before 2021 at the earliest. If the US figures are correct using the lowest estimated UK annual increase figure over 12,000 sufferers will have taken their own lives in that period. If this happened with a trial for cancer there would be national outrage at the delay so the decision of where when and how the research money is spent must be given to a panel of CRPS experts lead by Professor McCabe and Dr O’Connell who knows more about Worldwide CRPS research than any other person I have come across. They must be allowed to do one off tests on a single sufferer so they can prioritize where the research money should go.

£40 million is 0.86% of what the NHS spends on cancer each year and 0.036% of the total NHS Budget; I do not believe this is an unreasonable amount to request for the Worlds Most Painful Incurable Condition

I have done some research into the most effective way to achieve these goals which leads me to my 3rd request; you will need to do your own research to confirm it but as far as I can see there is nothing to stop you working together to draft a Private Members Ballot Bill for CRPS and each one of you submitting it under your name and the same happening in the House of Lords. According to the Parliament website this is the best way to get our needs into law and the more bills submitted if it is allowed the more chance there is of one of them being picked and eventually passed.

Thank you for taking the time to listen to me.

[littleeffie]

And their reaction to this well thought out thorough insight to our Painful condition was?

Did their feedback sound hopeful?

Should I feel a might more positive that your obvious in-depth understanding and knowledge put to them will bring change to sufferers and suicide statistics?

I hope good news is forthcoming.

Sorry cannot Facebook if that's where the answers are so will check back here.

[Barnclown]

WELL DONE 👏👏👏👍👍👍👏👏👏

Looking forward to your follow up posts on this

Thanks for the link

Hope you're recovering as OK as poss

[Hidden]

Professor McCabe's Speech

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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

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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

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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.

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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.

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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.

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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 diand social care cost could be avoidable. Please