Sec and Shadow Sec State for Health have been invited. We are also trying to get Ian Duncan Smith there as it is vital that CRPS is added to the list of conditions that ATOS can only assess by using a doctor.
The following organisations have been invited to send a representative.
GMC
BMA
Royal College of Nursing
Royal College of Physicians
Royal College of Surgeons
Royal College of General Practitioners
Chartered Society of Physiotherapy
NHS England
NHS Wales
NHS Scotland
Health and Social Care in Northern Ireland
Parliamentary Health Committee
The British Acupuncture Council
Unison
The UK's Faculty of Public Health
British Dental Health Foundation
Faculty of Medical Leadership and Management
Mental Health Foundation
Pain Relief Foundation
If you have contacted your MP and not received a reply or got an unsatisfactory one then please pass me your and their Name and my MP's office will contact them for you.
If you haven't please do so, this will be the biggest RSD/CRPS thing that's ever happened in the UK and we need as many involved as possible.
Please if at all possible come to London your voice needs to be heard
I notice that no one from STAT (The Society of Teachers of the Alexander Technique) has been invited and they have been treating pain conditions for years.
Any doctor making an assessment will not help. It needs to be a doctor who specialises in treating pain conditions. I have met some of the ATOS doctors and it was not possible to explain to them what pain does to you.
I will be interested in attending. Please can the CRPS briefing be in the afternoon. Train fares are less expensive for late morning travel than for early morning travel for those travelling from outside London.
Sorry Date and timing will be down to when Iain can get most people there. Never heard of STAT will look into them
Sorry they are a for profit business so they will not be invited.
From: info.public
Sent: Friday, December 12, 2014 3:15 PM
To: Kevin Scardifield
Subject: RE: Westminster briefing
Dear Mr Scardifield
Thank you for your telephone call to the BMA, and for sending us further details about your campaign work.
As mentioned on the phone, the BMA is a professional association and trade union for doctors in the UK. We are neither a clinical nor regulatory body, and as such we do not issue any clinical guidance to doctors.
I have checked with our Public Affairs team, who have advised that given the clinical nature of this issue, the BMA wouldn’t be able to attend the event or comment on the issues raised. The Royal Colleges have a more clinical remit and are involved in the postgraduate training of doctors, and would be better placed to comment on this clinical matter. You can find contact details for all of the medical Royal Colleges on the Academy of Medical Royal Colleges website at:
You might also like to contact the National Institute for Health and Care Excellence (NICE), the organisation which sets the clinical guidelines for the NHS: nice.org.uk/
While we are unable to assist, I hope this information is helpful.
Kind regards,
Public Information
Communications & Marketing Directorate
British Medical Association
T: 020 7387 4499 (calls between 10am – 1pm)
E: info.public@bma.org.uk
W:bma.org.uk
BMA House, Tavistock Square, London WC1H 9JP
Thank you for your reply.
I understand why you may not think it appropriate to attend but your members are in the frontlines of this fight and they are losing the battle badly. I don’t blame them, if you haven’t been told there’s a war going on you can’t arm yourselves with the weapons you need to win.
I have twice asked the DoH to send an e-mail to every Trust, Hospital, Clinic and Surgery in the UK informing them about CRPS and the 3 treatments which must never be used. Although I am crippled and virtually housebound I offered to pay for one of their staff to do this and a follow up e-mail a month later to those who had not replied from my Benefits but they twice refused.
I am asking if you are willing to lead the way before I even get to Westminster by doing an article on CRPS in your next newsletter and or adding a page to your website so as many as possible of your members become aware of the condition. I have attached a full list of symptom's and the generally accepted Budapest Criteria for diagnosis. If your members suspect that their patient has CRPS they need an urgent referral to a pain clinic and they need to advise any suspected sufferers that they must refuse the following 3 treatments.
Ice this will cause permanent damage to the blood vessels and blood flow and I have come across 2 UK sufferers where the damage was so bad gangrene set in and they had to have amputations to save their lives.
Hot and Cold Water Contrast Therapy, I was told to do this 3 times a day for 7 weeks, it has left white lumps visible in my blood vessels, some are swollen and blue, others have virtually disappeared, my heart can no longer pump the blood through the vessels hard enough to overcome gravity.
Aggressive Physio. This can cause CRPS to spread and permanently block any chance of remission.
They should also print this out and give it to their patients to take to any Hospital appointments. rsds.org/4/resources/pdf/ho...
The e-mail I sent to you was also sent to.
and I would like to go to Westminster and tell them that you have done what the DoH refused to do, even better if you were to change your mind and send someone to tell them and challenge them all to join in.
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CRPS. Who oversees treatment?
CRPS is there anyone out there?
Thoughts on CRPS compensation 
Hi all.Advice on CRPS pleeease.
