NEWS

                                                                             Nottingham Group News

• Group Leaders' Meeting
  The Nottingham group work with and support the national organisation FMA UK. The Association have invited Group Leaders and Help Line Support to a meeting with the Trustees in May, Nottingham are privileged to be hosting the meeting and look forward to welcoming every one attending.
  As Regional Co-ordinator, for the Association, of the Midlands' Groups and Help Lines, I would like to encourage all group leaders and help lines to attend this meeting. Not only will it allow us to discuss the way forward with the Association but give us a great opportunity to meet one another again and show support.
  
   

• Group Leaders Meeting May 21st 2005

• The Nottingham Group were privileged to host the Group Leaders Meeting on behalf of the National organisation, FMA UK. All the Trustees attended and some 25 groups-help lines were represented, Gerry Crossley chaired the meeting. Reports were given by the Trustees and of particular interest was the information from Janet McFarlene who represents the Association at the Fibromyalgia European Network,there are now 16 member countries involved in this network.

• Reports were made of the achievements of the Association over the past 12-18 months including the distribution of the GP Flyer, the New Professional Medical Information Pack and the success of the International Fibromyalgia Conference in London,September 2004.

• Pam Stewart has become Office Manager, Roger Ledbetter (South Bucks Fibromyalgia Group) has become Treasurer, two appointments that I welcome and isn't it great to see Pam remaining involved in the work that Bob was so passionate about. There were interviews on the Sunday for Trustee vacancies, I am pleased to report that Sharon Stephenson was appointed to the Board and has become Fundraiser, congratulations to Sharon.

• After lunch, Janet played host to all of us by splitting us into groups to "brainstorm", ideas including topics such as "How to attract group members to the Committee", this proved informative and interesting. I gave a report on the success of the NEC two day Professional Medical Convention, which was received well and the day concluded with a questions/suggestions section.

• The Group Leaders Meeting apparently may well turn into a yearly event and will be hosted by different groups each year.

• My thanks to all the Trustees and the Groups that attended, I look forward to the next meeting.

• National Group leaders meeting May 20” at Chorley.
  Michael and Florrie Jones were present at the Group Leaders Meeting to represent the Nottingham group, I was there in my role as Regional Co-ordinator for the Midlands region.
  Five groups from the Midland region attended the meeting including Nene Valley, Shrewsbury. Walsall, Burton-on-Trent & Swadlincote and Nottingham. The Regional Co-ordinators went into a separate meeting with the Trustees for the morning and joined the Group Leaders for lunch and the afternoon session.
  The group leaders spent the morning brain storming media ideas and the best way to promote fibromyalgia via their channel.
  1pm we were served with an excellent buffet organised by Janet Horton Trustee for FMA UK and Benefits advisor to the organisation.
  2pm, Des Wilson gave a presentation of the FMA UK website, www.fmauk.org
  2-3Opm, Survey Presentation by Robert Hardy Pickering regarding complimentary treatments for fibromyalgia, please request a questionnaire via the website link if you wish to participate in this study
  3pm, FMA UK report by Pam Stewart Chair of FMAUK and Roger Leadbetter Vice Chair of FMA UK.
  3-3Opm. Presentation of Volunteer Awards for 2006.
  Jeanne Hambleton for her work with the Family Magazine.
  Des Quinn for his work with the FMA UK website.
  Margaret Hobson of the Medway group.
  Barbara Kernan
  Mary and Ricky Stevenson.
  Christine Brown for the Midlands
  Jean Crossley, overall winner.
  Christmas Cards competition for new designs for FMA UK.
  A selection of cards were placed on the display board for all to see and select a winner
  and runners up,
  Winner was Linda Horncastle, runners up. Sheila Mannes-Abbott and Sue Tait.
  The Raffle for the day was drawn.
  3-40, refreshments were served.
  Questions and topics for the day were covered.
  Report from Jan Pugh of Shrewsbury about the FMS Clinic that is due to be trialled
  (Jan has offered to write a report for the Nottingham group news letter)
  Pam and the Trustees covered a variety of questions that had been submitted to the
  Trustees beforehand.
  5pm the meeting closed, the host for the Group Leaders meeting for 2007 to be
  discussed by the Trustees.
                                   Christine Brown - Awareness Co-ordinator for the Nottingham Group

                                                               The Fibromyalgia All Party Parliamentary Group

                                                                                               (FAPPG)

• We are delighted to report that a new Chair for this group has been unveiled. MP Robert Wilson has accepted the position and will be taking the Fibromyalgia cause forward, this was welcome news on the front cover of the September FaMily Magazine. The Nottingham group look forward to meeting and working with Rob and offering our support for the future.

• The FAPPG was a Nottingham initiative that evolved from one Nottingham group member approaching her MP, Dr. Nick Palmer, to inform him of all the problems associated with Fibromyalgia, such as patchy and inconsistent information, lack of professional support and the lack of awareness of this condition. Nick made enquiries and became aware that little was known about Fibromyalgia and this could lead to problems for the patient, from this meeting the FAPPG was born, Nick realising that there was much to be done became instrumental in bringing about the FAPPG group.

• The aims and objectives of the FAPPG are firstly to make MP’s aware of the issues of fibromyalgia, what it is, treatment and research issues.

• The second objective is to promote understanding in the Health Service, on one hand at the highest level where research decisions are made like the Medical Research Council and associated bodies to encourage scientific research into both diagnosing and treating fibromyalgia and hopefully finding ways to prevent it and thirdly to achieve better understanding across the services both Social Services and Benefits. 

• In the beginning Nick provided continuity with the APPG and has continued to support this important group, he has expressed that he will continue to help where he is able and he has continuously supported the Nottingham Fibro group, as has MP Vernon Coaker, for which we would like to thank them both. The Nottingham group members will be contacting local MP's to ask them to sign up to this extremely important group. At past APPG meetings at Westminster we have seen MP Vernon Coaker on a number of occasions and also MP Paddy Tippings. The majority of Nottinghamshire MP’s have been responsive to the Fibromyalgia cause and almost everyone of them have attended one of our group Awareness conventions over the past 3 years.

• We have requested that our members download the MP's letter that we have placed on our web-site and send it to there own MP. The group was re-established at its first meeting on December 5th at the House of Commons, which I attended to represent the Nottingham group.

• Christine Brown, Awareness Co-ordinator for the Nottingham & East Midlands Fibromyalgia Support Group .                                                           EXPERT PATIENT PROGRAMME.

•  The Expert Patient Programme is a six week course consisting of one two and a half hour session each week. You do not have to be referred by your GP or any medical professional, you can refer yourself. It is free to attend and is delivered by two co-tutors who have to be living with a long term condition them selves, all that is asked of you is that you attend all six sessions.

• The programme is aimed at helping anyone living with a long term condition, it might be Diabetes, it might be ME, Fibromyalgia, Chronic Fatigue Syndrome, you might have had a stroke or have heart trouble, you may have Arthritis but the course benefits all long term conditions. How can this be? No matter what long term health condition you have they all encounter similar problems, pain, poor sleep, loss of energy, anger, fear, frustration, depression, loss of confidence etc.

• The Expert Patient Programme will show you skills to help you live with your condition, to improve the quality of your life and put you back in control, it may help to change the way you view your situation and your future.

• The sessions deal with anger, fear, frustration, working with your health care professionals, medication, relaxation, nutrition, exercise and fitness, better breathing, communication, depression, problem solving, action planning, looking to the future etc.

• There may be up to 16 participants on the course, men and women, and you will receive an excellent manual on “Self Management of Long Term Conditions” which will be yours to keep and is a superb reference book that you will go back to time and time again. Courses are held all over the country, some times the title of the course may vary slightly in different areas, your local Primary Care Trust (PCT) will be able to tell you about your nearest course.

• For information about this positive empowering course, please visit the website at www.expertpatients.nhs.uk

• Those living with FMS may benefit from joining a course, fibromyalgia is for life and we need to be in control of the condition and not the reverse. If you wish to take control of your situation and live life as a fibromyalgia survivor go along and learn the techniques that, if you implement, will improve the quality of your life.                                                                                                                Christine Brown, Awareness Co-ordinator for the Nottingham Group.

• To all Nottingham Group Members

• May we ask you to please download the MP letter, add your MP’s name and your name and address and please post it to the House of Commons. A new Chair for the Fibromyalgia All Party Parliamentary Group (FAPPG) has been announced and we have been requested by the National Association, FMA UK, to ask our group members to lobby our MP’s to sign up to the FAPPG and endorse this group, the more MP’s we have supporting us the greater impact we can have when engaging Ministers and Health Departments. Please support FMA UK and your group in taking the Fibromyalgia cause forward. Thankyou.

• Click to download MP Letter   

• New Chair Of The Association

• It is with great pleasure that I am able to tell the members of the Nottingham group that Mrs Pam Stewart is the new Chair of the Board of Trustees, while being delighted at this appointment I must voice our sincere thanks to Gerry Crossley for taking up the mantle of Acting Chair in very regrettable circumstances. As you are all aware, very suddenly and very sadly Bob Stewart passed away in Febuary. Bob was so loved and respected that anyone taking over from him had a huge "pair of boots" to fill but Gerry very graciously threw himself into this role and brought continuity to the Trustees and carried forward the cause by continuing the work involved. On behalf of the Nottingham group I would like to give Gerry our thanks.  Whilst on the subject of the Trustees, I would also like to announce the new Vice-Chair of the Board of Trustees, Roger Leadbetter, Roger became a Trustees only recently and is Treasurer for the Association. I would like to offer our congratulations to Pam and Roger in their new roles and wish them every success for the challenges that lie ahead.  

CHRISTINE BROWN

Click For Home Page