Southend/Essex PMRGCA Support Group
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PMRGCA Support Group
Established 2007
Hon. President: Prof. B Dasgupta
Patron: Dame Helen Mirren
Aspects of the Support Group for people affected by Polymyalgia Rheumatica - Giant Cell Arthritis
PMR/GCA not only affects the life of those diagnosed; but also families and friends. This group is open to anyone whose life has been affected by these conditions. Polymyalgia usually shortened to ‘PMR’ is a rheumatic condition in which you have many (poly) painful muscles (myalgia) .
Giant Cell Arthritis shortened to ‘GCA’ is a related condition (sometimes called Temporal Arthritis) it is characterised by inflammation of the blood vessels (arteries) of the skull. We were founded in January 2007 and we expect to develop in response to our members needs.
Guidelines we ask members to respect
• That we run the group according to members needs in a clear and accountable manner.
• We welcome everyone equally and we take steps to make the group open and accessible.
• That we understand and respect confidentiality.
• That we listen to each other and respond with sensitivity.
• That we attempt to provide accurate and practical information but do not give advice or make recommendations.
Meetings
We aim to meet four times a year (minimum of three per year). Times and dates are circulated tomembers in advance.
Buddying Scheme
Link-up with a fellow member for support and friendship by phone or email telephone: Carol Smyth 01702 556407 or email ksmythe@ice.org
News sheets (minimum 3 per year) for information and developments on PMR/ GCA.
• Network with other members; share your experiences and have your say.
• Social outings/events and fundraising activities.
Suggestion Box
We welcome member’s comments and suggestions both good and bad, as ‘without feedback there is no change’
If you know of anyone who may be a good speaker let us know. Or maybe you are willing to help organise a social outing or event.
This online box is available at the following; apadbury@toucansurf.com or alternatively by phone/post to the Secretary or place in the ‘comments box’ at meetings.
Membership Entitlements
• Information of forthcoming PMR/GCA meetings and speakers (minimum of 3 per year).
• News sheets (minimum 3 per year).
• Up-to-date information and developments on PMR/ GCA.
• Buddying Scheme.
• Members handbook.
• Network with other members; share your experiences and have your say.
• Social outings/events and fundraising activities.
Subscriptions
Annually (April): £2.00 single, £3.00 joint membership
Committee Members
Chairman: Hannah Padbury
23 Wansfell Gardens, Thorpe Bay, Essex. SS1 3SW
Tel: 01702 587436
Membership Secretary/Treasurer: Pat James
15 Regency Court, Hockley, Essex. SS5 4TW
Tel: 01702 202654
Social Secretary/Fund raiser: Joan Fulcher
Harewood Avenue, Rochford, SS4 3AY
Tel: 01702 5472848
Hospital representative/ Coordinator:Jane Hollywood
Southend NHS Hospital Trust
Tel 01702 385347
(Volunteer Helpers: Becky Cox & John Smith)
Committee members hold office for a 1-year period and new elections take place every January. If there is more than 1 volunteer for each role then the members present will place a vote. Committee members can be re-elected indefinitely, but they should actively encourage other members to take on such roles. There will be a minimum of four committee meetings each year.
Useful Contacts / Information
ARC Booklet (Arthritis Research Campaign) on PMR/GCA Available at www.arc.org.uk or Tel: 0870 850 5000 and at most hospitals, health clinics etc.
For GCA see also booklet on ‘Vasculitis’ (addresses as above).
Suffolk/East Anglia: PMR Support
Jennifer Nott: 01449 720 545 Email uvenott@globalnet.co.uk
Dundee/Scotland: PMR & GCA Support
Jean Miller: Tel: 01382 778 596 Email pmrandgca@hotmail.co.uk
Arthritis Care: Helplines
020 7380 6555 or free phone 0808 800 4050. www.arthritiscare.org.uk
Prodigy Guidelines web site via Google
http://prodigy.nhs.uk/patient_information/pils/polymyalgia_rheumatica.htm
Live Life Exercise Referral Scheme (Chelmsford Area)
GP/Practice Nurse referral for a personal exercise programme. Tel: 01245 615058 for information leaflet.