Present: Mary Bergin, Patrick & Janet Biss, Teresa Bryant, Lance & Angela Harris, Keith & Lin Hooper, Enid & Ted Jones, Sue Miles, Annabelle & Neil Povey, Barbara Sadler, Terry and Ann Starling, Yvonne Trapp, June Ward, Roy & Jean Wright, Robin & Val Young.
Apologies: Frank & Jane Devine, Barrie and Barbara Houston, Sue Hyatt, Peter Poll, Gill & Alan Rowe, Sylvia Sabu, Kath Vincent.
Carers: Julie Mullett had been booked as speaker, having been re-arranged from the October meeting which she had been unable to attend. Both Mary and Barbara S had repeatedly tried to contact Julie in recent weeks and when contact was eventually made, she was unable to come today as agreed. Mary has recently been in touch with Janet Chierchia from Carers Together, Hampshire. Janet is an excellent speaker and has agreed to speak at our July meeting. She has asked that during today’s meeting you write down the effect diagnosis had on yourselves, your partner, together and individually, how it affected you then and now, what were/are your fears, and what are your priorities. Members were asked to write their thoughts, comments and questions on this topic, on the paper and pens available in the break which will be passed to Janet to help prepare her talk.
Disability Action: Tracey Evans from Disability Action had been our speaker at the meeting on 30th Jan and it was agreed her session had been very interesting. The service is re-locating from Forest Dean, Christchurch Hospital, but once they have new location details, Tracey is happy for a link to Disability Action to be put on our web page. Leaflets about the service are on the information table.
Fundraising: On February 10th, Wells and Glastonbury Young Farmers presented a cheque to Mary for £1000 for the Poole Transverse Myelitis Group. They had been fundraising throughout 2008/09 and a further £7000 was given to the Transverse Myelitis Society for research. Mary thanked Patrick and Janet Biss for their effort and asked them to pass on our thanks to the Young Farmers.
Sponsored walk: 21 people took part in the sponsored walk on 18th April from Boscombe Pier to Bournemouth Pier and back (5kms). The weather was wonderful and Mary thanked everyone who came to walk and support and to everyone who has sponsored people. When all the sponsorship money has been collected, it is expected that more than £1000 will have been raised. Mary asked for all sponsor money (in cheque form) to be sent to her before the July meeting. She gave special thanks to Sue & Andy Bridge from Kingston, Surrey who came to Boscombe after reading about the walk on our website. Sue had an attack of TM ten years ago and to mark that anniversary and her continued determination to improve and maintain her mobility, she completed the walk and raised £675.
Webpage: Connie King is working on changes to the webpage to add fundraising and meeting photos.
Ideas for Group Funds: More ideas are needed for worthwhile use of the money we raise. Please speak to a member of the Committee or put ideas in the suggestion box. It has been suggested that a neuro physio could be available for an hour before each meeting. The Osborne Centre in West Parley now employs a physio for the three days each week it is open. Members were reminded that joining the MS Society for £5 a year and asking to be linked to the Osborn Centre makes their therapist and facilities accessible to them, which is a great advantage in maintaining progress in recovery.
There was a discussion about taking advantage of Gift Aid if members were willing to give their address and permission for Gift Aid to be claimed on voluntary donations made at our meetings. The suggestion will be further investigated by the Committee.
Committee: Teresa has stepped down as Vice Chair because of work and family commitments, but remains on the Committee. Mary hoped that members would not be shy and could be encouraged to join the Committee and introduce fresh thoughts and ideas.
Neurological Alliance (Hants) Summer Conference at the Maltings in Alton on 30th June 2010. The topic would centre around Diagnosis. Speakers to include Dr Chris Kipps, Consultant Neurologist, a Clinical Nurse Specialist, a patient, a carer and a representative from Social Services. More details from Mary.
What works for you? It would be of interest to know what alternative therapies, yoga, massage, reflexology, supplements etc had been found useful in people’s experience. Newly diagnosed people would be particularly interested if this was available on the webpage. There was a lively discussion about using dark linseed in preventing constipation.
Walton Centre Update: Dr Anu Jacob is willing to be consulted for a second opinion, but please do not email him directly. It should be arranged through your GP. The treatment of NMO is now provided in two specialist centres – The Walton in Liverpool and John Radcliffe in Oxford.
Article on Continence: Mary has had an article about TM and its effect on continence, published in the RCN forum magazine for nurses who deal with continence issues. A copy is now part of our information available on the table at meetings.
Group Leaders Meeting: June 5th London. Mary and Teresa will attend this meeting to discuss future plans for the Charity including another conference in 2011. (previous conference was held in 2007). A new support group has been set up in the South East in Tunbridge Wells. Mary has had discussions with Annie Schofield who is leading the group and has asked Mary to speak at their June meeting.
There followed a period of chat, and tea and excellent cakes (thanks again to Barbara Sadler). The raffle was drawn at 4pm – a lovely mixed hamper was won by Yvonne. A further hamper will be the raffle prize at the next meeting on 31st July at 2pm. The meeting will include a brief review of the previous year, an update on our accounts, a talk by Janet Chierchia, (Carers Together) and will finish with a Strawberry Tea to enjoy.
Look forward to seeing you there. |
