Minutes of 2nd TM London Support Group meeting Friday 10th September 2004

At East Finchley Constitutional Club

Attendees: Sally Rodohan with daughters Carmel and Therese, Rachel Bond and husband Andy, Lew Gray, Cindy Morelli

Apologies: Karina Garcia Casil, Geoff Treglown, Simon and Loretta Turner, Corrin Tulk, Stuart Newton, Liz Holmes, Mel Corley, Sally Wilkinson,

Mark Harris, Tony Brohn, Amanda Harris, Regina Guard, Carol Lodge,

Abigail Evershed, Christine Clancy, Janet Fox, John Withey, Leigh Daskalova

1. Our second meeting was less well attended than the first one, perhaps because of location or being on a Friday night? We received apologies from people who couldn’t come for various reasons. Of the 4 people who attended this time, only Sally had been present at the first meeting.

Questionnaires feedback

1. We received 89 questionnaires back out of 220 sent out (nationwide, not all from London area). Unfortunately the Results Summary was not available at this meeting but is now available and will be sent out with these Minutes. Here are some highlights:-

1. 45% of respondents took longer than 1 month to diagnose. 70% said their GP was unfamiliar with TM. 54% were having no ongoing treatment. 74% felt setting up a UK charity to promote awareness was an “excellent” idea. 80% (71) said they would become a member. 43% (38) said they would volunteer to work for the charity. (NB these responses were nationwide and not just London.)

Purposes of London Support Group – where and when to meet?

1. We discussed what members want to gain from meetings. Most wanted to meet others and discuss experiences and mutual problems. Therefore our primary purpose was support and self-help. Raising awareness with medical establishment outside the group was secondary. Sponsoring research was lower priority. Do all members agree with these priorities?

1. If we are going to achieve support and self-help, then we need to have good attendance at meetings, good minutes to record experiences, suggestions and queries. Also we need to follow up with contact outside meetings using email or phone, so everyone feels they have someone to contact ie a support network. But how many members use email regularly? Should we try to have meetings at home rather than hotels or offices? Should we always meet in Central London or try to rotate our meetings around the area? Attendees felt that weekend meetings during the day might be easiest, especially if meeting in central London.

Experiences of TM

1. Attendees described their experience of TM, as usual very various! Although TM is usually a one off, Cindy had had recurring mild attacks. Cindy was advised by her consultant at St Mary’s to avoid vaccinations. Cindy asked, Was this a general advice for TM sufferers? (Geoff Treglown subsequently provided a 2-page summary of advice from different sources which is broadly contradictory – vaccinations document available on request from Lew). Cindy was also using a homeopath in central London who was very good – Lew asked for the name. Lew said he had twice experienced problems recovering after general anesthetic (recurring daily “spiking” fever). No one else had had this problem.

1. Cindy recommended the Brain & Spine Society’s booklet on TM. (Geoff T subsequently confirmed that this booklet of 15 pages was the best general introduction, and Geoff normally recommends it with the pack of information he sends to new members. It is also very good introduction for friends and family Individual patients can get this booklet FOC by phoning 0808 808 1000.Currently the booklet is shipped with inserted slip of paper which says there is no UK TM Society, but giving US TMA website and Geoff Treglown phone no.

1. Attendees felt the biggest need for awareness was immediately after diagnosis. Also sufferers needed guidance and backup after leaving hospital. Could we somehow get hospitals to refer sufferers to TMA website and UK support groups? (Geoff T subsequently mentioned that Margaret Shearer, who coordinates the Glasgow Support Group, provides a pack of info for sufferers to provide to their GPs, including scientific articles downloaded from the TMA website.)

Organising a UK charity

1. We discussed the idea of UK charity. Computer Associates Ltd in Slough (Karina’s employer) had promised financial assistance for our Group, but required that we should register as charity. Lew said he thought this was sufficient reason to register in itself. Lew had been organising TMA Newsletter copying and posting through his company for past 2 years, and it would also be easier to fund this via a charity (tax relief and VAT free). Several attendees from the first meeting had already volunteered to serve as officers/trustees, including an Accountant. So Lew and Sally agreed to get Charity Commission publications to learn how to register a charity and start the process. (This has now been done and ‘The Transverse Myelitis Society’ Constitution and registration application are now being prepared.)

Next meeting – Saturday 4 th December – Central London

1. Attendees agreed the next meeting needed to be before Xmas, but we had to find a suitable venue first.