PMR-GCA UK North East Region Support Groups Annual Report 2008-9
PMR-GCA UK N.E REGION ANNUAL REPORT: SEPTEMBER 2008 - SEPTEMBER 2009
BACKGROUND
9th June 2008, two of the original five members of pmrfighters, Mrs P Hildreth (who has PMR) and Ms M Smith (who has GCA) met together with Mrs M Wright (who has PMR) and Mrs D Reed and formed the first Support Group covering the North East of England. Mrs Reed was appointed as Treasurer and Mrs Wright as Project Co-ordinator. Mrs Hildreth as Secretary and Ms Smith as Chair.
It was determined to divide the region into two areas as it was realised that potential members could not travel great distances due to their illness and the cost.
Area 1 Covered Teesside, South Durham and North Yorks.
Area 2 Covered Tyne and Wear, Northumberland, North Durham and Cumbria
The Chair, Secretary, Treasurer and Project Co-ordinator are all volunteers, none paid.
July of 2008 applications were made to Gateshead Metropolitan Borough Council (GMBC) Community Grants Scheme for £1,000 and to The National Lottery Awards for All for £4,500.
We were very grateful to Lord Mackenzie of Framwellgate for his references.
In September 2008 - GMBC awarded the group £750 provided they could match fund the award. Awards for All granted the group £4,500 which also enabled us to use this money as match funding for the Gateshead award.
To enable us to set up a Community Bank Account through the HSBC Bank we were given a £20 donation. At varying times during the year we received small donations from various well wishers.
By the end of September 2008 we had the total sum of £5,270 for the sole use of:-
- Set up costs to purchase minor equipment such as 2 laminators, staples, date stamps, pansy logo’s for envelopes.
- Stationery such as letter heading, envelopes, paper and printing costs for posters and leaflets.
- Advertising, room hire costs, subsistence initial out of pocket expenses for guest speakers.
- Information booklets for hospitals, doctor surgeries etc
- The creation of a Web Site and maintenance costs
- The creation of a DVD about Polymyalgia and Giant Cell Arteritis for newly diagnosed patients
- The purchase of Medi tag bracelets for group members
We were given 12 months from the beginning of September to complete these projects. Advertise our work, create, print and disseminate information leaflets, set up support groups, network with the medical profession and complete the tasks we had set for ourselves. We could not have been able to do this without the support and generous funding given by these two organisations.
On the 14th March 2008 the founder members of PMR-GCA Fighters Mrs Pamela Hildreth and Ms Mavis Smith formed the first Support Group in the North East of England. Rheumatologist Dr. M. J. Plant kindly attended and gave a presentation about PMR and GCA followed by a lively question and answer session
An article about Pam’s story and support group by Karen Faughey of the Evening Gazette appeared in the paper in March 2008. Pam was inundated enquiries and thanks to the continuing support of Karen Faughey who regularly advertises our group meetings in advance, the group continues to grow from strength to strength.
Pam at the request of the James Cook University Hospital visits on a regular basis to give talks to undergraduate medical students about the two conditions and distributes copies of diagnostic procedures and information about North East Support Groups.
OCTOBER 2008
We commenced a series of advertising and publicity initiatives. Over 200 laminated colour posters were distributed to doctors, pharmacists and health centres across North Tyneside. Two advertisements together with a news article were placed in the Whitley Bay Guardian and Northumberland Post.
We already had an email address pmrgcafightersne@googlemail.com. Some people had read our advertisements and articles and sent them to friends and family members abroad, we were soon inundated with emails from all over the world from people desperately seeking support and advice, people of all ages from countries such as Canada, Australia, America, New Zealand and Europe as well as from people in the United Kingdom. To date over 125 people outside the UK and over 200 letters and emails were sent to people with up to date information on PMR and GCA from the Medical Profession as well as Rheumatologist Professor Bhaskhar Dasgupta our patron, together with information about the PMR-GCA North East Region Support Group(s) and lists of useful websites and books.
Previously PMR fighters had already devised a questionnaire for sufferers so Pam Hildreth and Mavis Smith collaborated with Elliott J Greene a microbiologist located in New Jersey USA and merged our questionnaire with his. The online PMR-GCA questionnaire, for which there is a link on our web site, is totally anonymous and results are available to view free of charge to anyone in the world.
As part of the funding from Awards for All we agreed to purchase for each member vital Medi Tag Bracelets which would contain necessary information with regard to the members contact numbers and inform medics they were on steroids, this would enhance the concept of the Steroid Blue card PMR and GCA sufferers are supposed to carry but often do not either because they have not been given one by their GP or by their pharmacist. These have proved to be very popular and invaluable for their own personal safety if they are in a medical situation.
Initial meetings also took place this month with regard to the contents of the DVD,
NOVEMBER 2008
We decided that Area 2 needed more publicity and more members and we needed to make Rheumatologists cross the North East of England aware of the support available to their patients.
We decided advertising through local papers was not longer the answer, letters to hospitals trusts would get lost in the mountain of paperwork Rheumatologists received every day. Hence we decided to focus their minds by sending them something, which would constantly remind them we were here. We designed Christmas Cards, Pens, and Diary’s and had them personalised at a very nominal cost.
On the 27th November Pam held another very successful support group meeting
DECEMBER 2008
In December we sent 30 Rheumatologists in every North East Health Trusts an introductory letter together with Pens with PMR-GCA UK NORTH EAST SUPPORT GROUP contact numbers printed clearly together with a diary and leaflets to hand to their patients, his certainly focused their minds and we soon received emails and telephone calls from both doctors and patients.
As we wanted to help people who were also disabled we were delighted to appoint Darren Shaw a young person who suffered from rheumatoid arthritis to help create our web site. We felt this would be good for his future.. So the initial work commenced.
Further discussions took place again with regards to the content of the DVD. Initially Dr. Saravanan consultant rheumatologist of the Queen Elizabeth Hospital Gateshead was to be the only consultant on the DVD, however his enthusiasm was such that although it would delay our completion target from May 2009 to September 2009 it was agreed that the delay would be worthwhile as he wanted to extend the contents to cover treatment, exercise an diet and to bring in experts in these fields. Over the following 6 months Dr. Saravanan and our team worked together to bring together all the experts as well as a wealth of knowledge from Rheumatologists in the North East of England. Dr. M Plant of the James Cook University Hospital, Dr Z Abdulla of the Queen Elizabeth Hospital Gateshead, Dr. D. Ashock of Durham University Hospital, Miss M. Dayan Consultant Ophthalmologist of the Royal Victoria Hospital, Newcastle. Scripts were written and re written then went off for review and accuracy to Professor Dasgupta, the RNIB and ARC to seek their permission to use some of their data in the scripts.
An article about our group was printed in the St. Georges Church Cullercoats magazine. This resulted in an offer to use the Church Hall for group meetings and once a group is running the Mothers Union have offered to make a donation. We also had various telephone calls in relation to the article and enrolled two new members. Sadly some members are unable to travel, they receive all the correspondence available.
JANUARY 2009
After a short Christmas recess we began again in our efforts to raise the profile of PMR-GCA North East Support Group
Mavis Smith entered into discussions with NICE to bring forward standard diagnostic and treatment procedure guidelines for doctors.
We were also contacted by Hans Kryswijk of the Marijke Foundation who was very interested in our work and Professor Dasgupta’s research. Since then we have built up a good friendship with the Foundation; they watch us with interest and are hoping to meet up with us in the near future. We have a link to their website posted on ours.
Gateshead Council’s Civic News published an informative article about us and again we were inundated with enquiries. This generated enough people interested to arrange an inaugural meeting to see if we could establish a support group located in Area 2.
FEBRUARY 2009
Pam held another very productive support group meeting.
The guest speaker Mr Harry Simpson, Personal Trainer, demonstrated gentle exercise for PMR/GCA sufferers (Appendix 1 minutes).
Work continued with supporting our groups abroad and meetings were held with regard to the contents of the DVD. The first of the filming took place at Bannatynes Health Centre with their kind permission, Pam was filmed on the Power Plate Machine with a personal instructor and her friends at the Aqua Class amidst much screams and embarrassment were filmed in the water doing their exercises showing how beneficial these exercises are to PMR sufferers.
MARCH 2009
Continued with the usual work of meetings, answering emails and telephone calls.
An initial meeting was held on the 23 March in St Mark’s Methodist Church & Community Centre, Durham Road, Gateshead. Those present decided to form the first support Group in Area 2, this support group is based in Gateshead. The next meeting was arranged for the Monday 8th June.
In March 2008 a meeting had been held in London called by Professor Dasgupta and attended by Patients with PMR/GCA from all over the UK. The people who were present took the decision to form a new charitable organisation. This meeting was attended by Mrs P Hildreth and Mrs M Smith who were members of PMR fighters and now are respectively Secretary and Chair of the PMR-GCA UK North East Region Support Group(s).
On 20 March 2009 PMR-GCA UK gained charitable status and it is hoped that it will be officially launched in the near future.
APRIL 2009
On the 14th April 2009 we held our Annual General Meeting and on the 16th of April we presented our ongoing report to the National PMR-GCA Group.
Sadly our Web Site creator Darren was too ill to continue, he had been in and out of hospital since December and we were sorry he was forced to relinquish the reigns.
MAY 2009
We were lucky to find through Pam another Web Site designer who agreed to design and maintain our web site for a reduced fee. Together with Pam, Frank Auffret of Desktop Solutions started building upon our web site.
At our Area l meeting at the James Cook University Hospital, our first members contact group emerged with 6 volunteers who agreed to ease Pam’s workload by becoming a first contact for those members who just wanted support and a chat. They call it C.A.P.S. (Call a Pal Scheme).
JUNE 2009
Area 2 Support Group met on June 8th. The Guest Speaker was Dr Saravanan, Consultant Rheumatologist Queen Elizabeth Hospital Gateshead.
Our Web site www.pmr-gca-northeast.org.uk was finally completed, checked over for accuracy and thanks to Pam and Frank’s hard work it went live in the 2nd week in June and up to the 30 June we had 100,736 hits. From 1 July to 19th 12,256 hits were recorded.
We received lots of compliments from all over the world. (extracts below).
“Congratulations on the excellent website. I have been very busy and have not yet got around to expanding on the research topics in more understandable terms
Regards Bhaskhar.
May I say that the website looks great – really professional and will be a fantastic resource for patients Very well done!!
Regards Dr.M J Plant Rheumatologist.
Congratulations! Good Luck Brian.
The Lord Mackenzie of Framwellgate OBE, LL.B House of Lords London
SW1AOPW
I think the site is fantastic and congratulations and well done. It will be very inspirational to anyone who happens to come across it and who is suffering with PMR. Do you know that one of the good things that came out of my PMR is getting to know you and some extremely lovely people. Jean Lyner.
Congratulations on getting the new website up and running – it looks great. (Elliott Greene USA)
Hi PAM Just had a quick look at your new site – very impressive! Brian Henderson
Have just managed to have a look at part of your new Website – what a feat! Once section by Prof Dasgupta has thrown up a great big question in my mind…..
Shirley O’Connor
I just wanted to say thank you for sending details of the PMR-GCA group website. I have started to read my way through it but wanted to congratulate you all on your efforts in putting this together and on the ongoing work you are doing on behalf of all the PMR-GCA sufferers. Angela Brown.
JULY 2009
On the 7th July we were delighted to welcome Ann Moody from Awards for All. Ann needed to do a monitoring visit and review our accounts to make sure we had spent the money as and met our obligations to AWA.
Friday the 17th July was D. Day for the filming of our DVD. The rain could not have come any heavier. But, all stops were pulled out and all our participants travelled from far and wide to take part in this important event.
We used this day as a twofold experience to network with our colleagues, and enable people to meet each other and to recruit new `helpers` in our quest for excellence.
GMBC provided free of charge two rooms for filming and hospitality. The staff were very kind and helpful and for that we were very grateful.
We started our day at 7am to set up and Alan Evans of AE Videos our Director and cameraman started the ball rolling. Consultants and many others from the medical profession from hospitals in the North East of England came together as well as the treasurer from the National Charity. Everyone delved into their scripts with veracity and great enthusiasm. We were delighted to welcome Davis Foster from the Regional Policy and Partnerships Office of the Big Lottery Fund who was able to meet all our colleagues and see the filming in progress. He also gives us invaluable advice on applying for further funding.
It was a wonderful day, it was hard work but very productive and informative.
AUGUST 2009
It is only two weeks to the end of out first year with Awards for All and GMBC Community Grant scheme. The proto type DVD has now to go to our members for editorial review before it can be finally completed. Our members and colleagues are eagerly awaiting the end product.
* Our DVD has been delayed until September and the delay has been agreed by Awards for All,
ON REFLECTION
The last 12 months have not been without our ups and downs and our disappointment that Darren was not able to complete the web site but our best wishes go to him for a speedy recovery.
Members to meetings in area 2 have been slow in coming however we appreciate travel is difficult for those who are ill, housebound etc but we still ensure they receive all the news letters and up to date information by either email or post.
We have been so inundated with emails, reports, newsletters, printing of letters and posters, and research documents on occasions our secretary and chairperson’s computers have been so overloaded they have crashed. They have both had them repaired and updated at their own expense.
However our success has been proven by the quantity and quality of people who are now volunteering to be part of our organisation, members who have joined us, as well as members of the medical profession who support us whole heartedly.
People from the UK, Europe and around the world who we are supporting and helping to set up their own support groups such as one they call a `chapter` in Seattle (No its not the Hell Angles Chapter).
OUR VISION FOR 2009 – 2010
We have come a long way since our first meeting which brought Pamela, Mavis, Dorothy and Margaret together on the 9th June 2008 and we are delighted in what we have achieved. We hope and trust there is more to come.
PMR-GCA UK North East Region Support Group(s) remains an independent organisation, which may in the future, affiliate to the National Organisation.
This will take some time as we are moving into uncharted waters and as funding is essential to make progress in the North East that is our first priority.
We will continue to liase with other support groups throughout the UK and on other distant shores.
Our first priority is the North East and to this end we are currently exploring and making contact with local organisations that we feel can be of some help to us in our quest for research into cause, cure and support.
Newcastle University Medical Research is a world-renowned leader for research in some areas of medicine and we hope that we can, in the future, get that organisation to widen its interest in autoimmune diseases. The forecast for the future incidence of these two diseases in particular is not good.
Building an organisation up from scratch is not easy especially as most of us are volunteers and suffer from PMR and GCA.
We hope to apply to THE BIG LOTTERY FUND ‘Reaching Communities to enable us: -
- Hold the launch of the DVD in The Sage, Gateshead
- To include in this launch a world wide seminar on PMR and GCA to raise the profile of support for sufferers and make the North East of England a centre of excellence in this field.
- To continue with our priority work in holding members support groups across the North East of England offer training and support in setting up these groups.
- To continue to raise the profile of this condition through parliament
- To produce a television documentary
- To work with other major medical and research organisations in the North East of England for the benefit of sufferers with PMR and GCA.
OUR AIM – still is to continue to make the North East of England the Centre of Excellence for PMR-GCA support.
Mavis Smith
Chair
PMR-GCA UK
North East Support Group
* Our DVD will follow late September – October after editorial review.
