Transverse Myelitis Society

Minutes of 5 th Meeting of London Support Group

14 th May 2005

At Old Board Room, National Hospital for Neurology and Neurosurgery (NHNN), Queen Square, London WC1

Next meeting: Saturday 3 rd September 2pm same venue

Attendees (26): Jean Anthony, Farshideh Bondarenko (Lew’s physio guest), Mike Batho, Ramya Dayasinehe and husband, Lorraine Exley and partner Mark and 2 daughters Gemma and Zoe, Esme Fletcher and mother Jenny and aunt Kate Hobbs Lew Gray (Secr), Peter Hider and wife Jackie, Yvonne Kolesar, Lisa Mann and daughter Jessica and mum, Cathy Mayer and friend Anne, Sally Rodohan (Chair), Carmel Rodohan, Therese Rodohan, Roy Smith, Susanna van Langenberg

Apologies received: Wilma Atherton, Clare Blake, Rachel Bond, Tony Brohn, Teresa Bryant, Mel Corley (Treasurer), Margaret Duggan, Bayard Ficht, Karina Garcia-Casil, Angela Hawkins, Barbara Houston, Tony Irish, Carol Lodge, Ellen Nagle, Stuart Newton, Margaret Shearer, Betty Storey, Geoff Treglown, Corrin Tulk, Simon and Loretta Turner

Explanation re TM Society and London Support Group

1. The TM Society is a UK-registered charity. The TMSociety handles Newsletter distribution for the TMA, and the Committee is trying to make sure we have accurate addresses, phone numbers and emails for all UK members.

 

2. Since we have no specific UK Newsletter, these Minutes (and the website www.myelitis.org.uk) are the only UK-wide communication. So we will continue to send these Minutes to any member who requests them, preferably by email but also by post if you don’t have email. (Remember you can also view latest and all previous Minutes of all Support Groups – London, Scotland, Telford - on the website too.)

 

3. Part of the TMS mission is to encourage local Support Groups. Many members are keen to get to know other TM sufferers, carers and families locally, and of course many of us, even in the Southeast, find travelling to London difficult. The TMS Committee is happy to assist local groups to get started in any way including financial. Remember, Support Groups do not have to meet physically – even telephone or email contact is useful. The website also supports a bulletin board where members can post issues and questions, for others to comment.

 

4. So starting with these Minutes, in addition to London/Southeast members, we will send out Minutes by email to GROUPS of members in the other regions, so any of them can easily contact all the other members in the region. Any comments please email Lew Gray at l.gray@kpos.co.uk .

    

TM Society - General Charity Stuff

 

5. Mel Corley (Treasurer) was working on getting our bank account from NatWest (now complete!) and Gift Aid registration with Inland Revenue. In Mel’s absence, Lew explained how Gift Aid would allow us to claim 28p for every £1 donated, and therefore requested all members to sign Gift Aid forms whether or not they were making any donation now, since the forms were effective forever.

 

6. Many thanks for postal donations to: Felicity Hayward Northampton, June Adderley Cheshire, Leigh Daskalova E9, Judith Pottle Ipswich, Carol Lodge Walton, Irene Allen, Margaret Moran Lincs, Freeda Burford Bournemouth, Teresa Bryant Poole, Betty Storey Canvey I, Michael Bensley Wisbech, Eileen Anderson Co Durham, Susanna van Langenberg W6, Jane Batho Perth, Sandra Mitchell Birmingham. Plus attendees at meetings, who more than filled the hat when it was passed!

 

7. Sally,Yvonne, Carmel,Therese and Lew were working on contacting members by phone, where we had incorrect or missing email addresses (about 150). Jean offered to help. This work will continue into July. Many members had not received the Newsletters posted in February, probably post office failure. (If you have not received TMA Newsletter dated December 2004 – with UK members letter and DVD Order Form - please email l.gray@kpos.co.uk or phone 020 8568 0350.)

 

8. New members were most welcome to join the Committee. There was lots of good work to do, and lots of fun doing it! After cleaning the database, we hope to improve our website www.myelitis.org.uk (any suggestions? Contact Lew). [One suggestion received: we need more GOOD NEWS stories to appear on the website.] Then we want to encourage other regional support groups and get referrals / contact newly diagnosed TM sufferers. We get about 80 new members in UK per year, but we believe there are 300 new TM cases pa in UK, so we are only reaching less than one third. If anyone is interested, please contact Lew Gray (details above para) or Sally Rodohan (w 020 8349 6774 or h 020 8883 2721).

 

9. Yvonne reported on a good meeting with Brain and Spine Foundation that she and Lew attended. They run a Helpline staffed by experienced neuro nurses (0808 808 1000). BSF were very supportive of our objectives, offered to distribute our leaflet at RCN Neuro Seminar in June (TMS leaflet now complete). We have already rewritten the insert BSF send out with their Transverse Myelitis booklet, to give TMS contact details. We had a good discussion about the problems of getting neuro patients referred for support, either to BSF or to support groups like us.

 

10. TMS has also joined the Neurological Alliance a consortium of 52 neurological charities who lobby the government and produce useful publications eg Getting the Best from Neurological Services. The Neuro Alliance was active in getting the National Service Framework developed (see minute 9 below) and is now pushing the NHS to make sure the NSF gets implemented. TMS is also being listed in GPs’ PILS database of support groups, which is also available online at www.patient.co.uk .

 

11. Yvonne found out about a new NHS Expert Patient Program, which was a 6-session course held locally, to assist people with long-term conditions eg TM, arthritis, diabetes, to manage their conditions better. Yvonne or Jean or Sally would give the EPP course a “suck it and see” and report back.

 

12. The NHS has very recently announced a new National Service Framework (NSF) for Long Term Neurological Conditions. This is a very ambitious set of standards for improvement over 10 years, including:-
1. early diagnosis and appropriate treatment by neuro specialists
2. timely high quality rehabilitation and support to return home
3. full range of home-based advice and support to meet changing needs
4. support for family and carers

Lew distributed the new Information Leaflet about the NSF, and a lively discussion took place, regarding how much the NHS needed to improve!

 

Matters Arising and Members’ Feedback

 

13. TMA and TMS do not endorse any of the medications, treatments or products reported. We strongly advise that you check any drugs or treatments mentioned with your medical adviser. Members are reporting their own personal experiences with TM.

 

14. Margaret Shearer of Scotland Support Group has asked us to clarify the minutes of the last meeting which said she “recommended St John’s Wort (herbal) macerated oil for banding pain.” Margaret’s comment was:

    “Unfortunately I cannot recommend any drug but can say which ones I have found helpful. This medicine is not to be used with certain medications and it is therefore necessary to consult a medical herbalist to advise you whether you can take this remedy on the drug therapies that are already being prescribed. When I spoke to the two people you asked to contact me they were not on any meds at that time and I could tell them how the oils had worked for me, so it was up to them where they went from there. I have since heard that one person has already ordered it! I have also had others contact me after seeing it on the website, but I have had to tell them to go back to their GP, medical herbalist or consultant to check whether the medication they are taking is contra-indicated when taking St Johns Wort. NB. St Johns Wort among other therapeutic actions, improves the efficiency upon which certain medications are metabolised by a specific liver enzyme known as Cytochrome P450. Your medical herbalist, GP or Consultant will know which medications are metabolised by this liver enzyme and therefore which medications St Johns Wort may interact with. If any of the drugs being taken interact with St Johns Wort, it can alter the way in which these medications have their therapeutic effect and this can cause side effects. These side effects will depend on the individual’s own drug regime but could be serious if not monitored by a medical professional such as a medical herbalist, GP, Consultant.”

Mike Batho commented that his wife Jane (Scottish Group) had done well with a medical herbalist too, who had helped her with pain, coldness in her legs, energy levels and bowel and bladder control.

 

15. Felicity Hayward emailed from Lincs to say she “really couldn’t manage without” amitriptyline 25mg at night (for spasticity we think).

 

16. John Nash emailed from Brighton to ask if any other members were having trouble with insurance claims (Scottish Provident). Lew would like to know if anyone has suffered “loading” on their motor insurance in respect of TM.

 

17. Abby Evershed recommended www.ownersdirect.co.uk to find disabled-friendly self-catering holiday accommodation. Other options (from Able magazine) were Travel Options (0141 559 5500), Grooms Holidays (08456 584478) and Shirley Nicholson an MS sufferer who owns 2 new villas in Portugalshirley@quintadosol.net

 

London Support Group - New Members’ Experiences with TM

 

18. Sally welcomed new members to the Group and invited them to talk about their experience with TM. As at previous meetings, most new members have never previously met anyone else with TM, and everyone was delighted to be able to discuss their experiences with fellow sufferers.

 

19. Esme Fletcher (age 14) had contracted TM in Sept last year with very fast onset. She had recovered well enough (physio for 8 weeks only) to walk 2 miles (sponsored) in November! Esme was here with her mother from Gosport and her aunt from Nottingham.

 

20. Lorraine Exley had suffered various symptoms for 2 years following hepatitis B vaccination, only recently diagnosed TM, suffered from constant pain. Lorraine had had good experience with Prof George Lewith at the Centre for Complementary Medicine (www.complemed.co.uk) in Southampton General Hospital and London. Prof Lewith had got Dorset County Council to fund her homeopathy treatment for fatigue – “homeopath gave her hope whereas neurologist said no hope.” Lorraine was also taking Lambert’s high strength (1100mg x 2) fish oil supplements, to provide omega 3 fatty acids to improve myelin signalling efficiency, and also Solgar B Complex 50 vitamin supplements to remedy thiamine deficiency. She was also undergoing a “Neural Integration” therapy from an ex-chiropractor in effort to correct damage from lumbar punctures. Lorraine is happy to hear from other members by email or phone.

 

21. Peter Hider had contracted a “flu” in Spain (March 03), then came back to UK to see his GP, then had private MRI in Bath. Initial diagnosis was “possible tumour.” Symptoms progressed over a year until Peter was suffering from banding pain by May 04, also depression and fatigue. Peter had used various physios, now trying FES (electrical stimulation) – acupuncture made him worse.

 

22. Lisa Mann’s TM started with epidural while having Jessica (now 2), which gave her sharp pain and leg spasm in hospital, then typical TM collapse the next day. She was left forgotten in maternity ward initially, treated with steroids which worked OK and sent home. When symptoms continued (pain plus feet numb and over-sensitive to heat) and she sought a second opinion (at NHNN), the MRI showed nothing and she was dismissed as psychosomatic (“overachievers worry too much – get on with life”) and referred to psychiatrist. Eventually her GP diagnosed her as suffering from TM, after 30 emails to USA and Brain and Spine Foundation Helpline. Lisa was now 18 weeks pregnant again and getting physio from a pregnancy specialist – understandably she doesn’t want to see any more doctors!

 

23. Cathy Mayer’s TM started in her arms in July 04 following tennis elbow. She was diagnosed within 2-3 weeks after losing all sensation in arms. She had 7 weeks in hospital followed by 5 weeks in rehab. Current treatment was limited to baclofen for spasticity. Cathy suffered from pain getting worse last 4-5 months and sleeplessness and fatigue. Drugs and reflexology both made pain worse. Cathy is planning to try hyperbaric chamber via MS club.

 

24. In spite of the difficulties everyone had with TM, everyone agreed the meeting was tremendously satisfying and useful especially for partners and family members who attended. Jackie Hider commented she was worried by everything she had read, that the meeting would be 100% wheelchairs, doom and gloom etc – but she had been pleasantly surprised and enthused by the meeting. Members who had attended more than one meeting (Jean,Yvonne, Lew,Sally, Carmel,Therese, Roy,Susanna) found the atmosphere great, and the range of peoples’ experiences fascinating.

 

25. The UK members list indicated a “cluster” of TM sufferers in Bournemouth / Poole area (hepatitis B vaccinations?). Jenny Fletcher requested to see a copy of the TMS children’s list, which Lew was updating from the list cleaning.

 

26. £80 was collected to defray the meeting room cost and refreshments. Computer Associates staff (Karina’s company) had also contributed £180 in their staff restaurant during month of April, our first fundraising!

 

Next Meeting

 

27. The next meeting of the London Support Group will be on Saturday 3 rd September 2pm at same venue (NHNN).