Summary:
The APPG for Complex Regional Pain Syndrome was set up to raise awareness of the conditions among parliamentarians and lobby the government for increased funding for better research and treatments.
The APPG will also support other organisations and groups in the UK who are working to achieve similar objectives. Including sharing concerns, ideas and requests to MPs and Ministers.
The APPG will try to include sufferers, expert clinicians and other interested parties at every possible opportunity. This will include using social media and other communications tools to connect with sufferers.
The APPG was established on the 29th October 2015.
The Group’s current members are:
Iain Stewart MP – Chairman
Simon Hoare MP– Vice Chair
Stuart Andrew MP - Vice Chair
Baroness Young of Old Scone – Vice Chair
David Simpson MP
Rebecca Harris MP
Mark Durkan MP
Lord Stone of Blackheath
Affiliated members of the group include all sufferers and expert clinicians working on CRPS.
Aims for 2016:
⦁To increase awareness of the APPG and its purpose among MPs and Ministers.
⦁To improve understanding of CRPS as a condition among members.
⦁To attain initial clarification from the Department of Health and the Health Committee on how they currently view CRPS.
⦁To make all appropriate CRPS groups and organisations in the UK aware of the APPG.
⦁Keep members and other interested parties regularly updated on the group’s activities.
⦁Working with sufferers, clinicians and other groups to start improving understanding of CRPS through the APPG.
⦁Make Ministers aware of what is needed to address the lack of understanding and treatments for CRPS.
Proposed Actions for 2016:
⦁Write a letter from the APPG Chairman to all Ministers in the Department for Health, the Prime Minister and the Chair of the Health Committee informing them of the Groups creation and purpose.
⦁Secure an Adjournment Debate.
⦁Apply for a Private Members Bill.
⦁Invite expert clinicians to give a full briefing on the condition inviting all MPs and Lords.
⦁Research all groups in the UK working on CRPS and inform them of the APPG’s creation.
⦁Offer support to all groups in terms of lobbying, research and us of parliamentary facilities.
⦁Chairman and other interested officers to visit Royal National Hospital for Rheumatic Diseases.
⦁Set up a quarterly e-newsletter that will be sent to all interested parties informing them of the APPG’s activities.
⦁Invite Janes Ellison MP (Health Minister) and Sarah Wollaston MP (Committee Chair) to an APPG meeting.
⦁Request Health Committee do an enquiry into the current state of treatments for CRPS.
⦁Working with expert clinicians, publish a short discussion paper on the priorities for sufferers and clinicians going forward.
⦁Hold a forum inviting in wider groups such as the Chronic Pain Policy Coalition to discuss issues and solutions across the spectrum of Chronic Pain.
Brief Timeline for Events:
January – Officers to agree work programme. Chairman to write to Ministers, PM & Health Committee.
February – APPG Meeting (Invite expert clinicians to brief MPs & Peers on the condition). Write to all groups in the UK working on CRPS.
March – Visit to Royal National Hospital for Rheumatic Diseases. 1st quarterly e-newsletter.
April – APPG Meeting (Invite Sarah Wollaston MP).
May – Initiate work on discussion paper.
June – 2nd Quarterly e-newsletter. Write to Health Committee requesting they do an inquiry in the next session of Parliament (Sept 16). APPG Meeting.
July & August – Parliamentary Recess. Work continue on discussion paper.
September – 3rd Quarterly e-newsletter. Hold forum in Parliament on Chronic Pain conditions.
October – APPG meeting (Invite Jane Ellison MP).
November – Publish Discussion Paper.
December – APPG meeting. Review 2015 work programme. Create 2017 work programme. 4th Quarterly e-newsletter.
