Minutes from Poole & Bournemouth Transverse Myelitis Support Group Meeting

25^th October 2008 at 2pm, St George’s Hall, Oakdale, Poole

Present: Mary Bergin, Patrick & Janet Biss, Teresa Bryant, Frank and Jane Devine Barbara & Barrie Houston, Sue Hyatt, Elaine Knowles, Mary M^cRobie, Barbara & Peter Poll, Peter & Rita Reynolds, Yvonne Trapp, Kath Vincent, Jean & Roy Wright, and Robin & Val Young

Apologies: Andrew Berry, Phil & Connie King, Malcolm & Mary Plested, Gill & Alan Rowe, Judy Stanford, Graham & June Ward, and Amy White

Mary Bergin introduced herself to the group as new chair. Her background is nursing, having qualified in 2000. In April 2007 she was diagnosed with TM, and following a flare a year later, she was diagnosed with relapsing/remitting MS.

She informed the group that Yvonne has a fatigue diary if anyone wants a copy.

Regarding Connie’s setting up of the web page, it is almost finished, and should be complete by the end of next week. It will be very impressive.

Mary has visited several other support groups this year, and hopes to visit the remainder next year.

She went to the meeting in Liverpool, and met Dr Anu Jacob (Patrick & Janet Biss were also there). Dr Jacob has received a £10,000 grant from TMS for research. He has already written a paper regarding research carried out for the diagnosis of Acute TM. He specialises in rare neurological diseases.

There is a list of neuro-physiotherapists available on the website www.acpin.net.

Geoff Treglown, who was the co-ordinator for new members and sent out the packs to these members, sadly passed away in August, aged 65. He suffered from TM and Parkinson’s disease. There is now a vacancy for anyone wishing to take on this role.

Mary went to the last meeting in London. There was feedback on the conference held in Seattle in July, particularly regarding Project Restore at the Johns Hopkins Centre with Doug Kerr. They are now waiting for the go ahead for human trials of stem cell transplants for remyelination. Research has begun in Bristol.

Mary informed the group that there may be a possibility of being exempt from prescription charges, under the category of a long term condition needing much medication. TM of course fits this category, but it would seem to be down to individual GPs – some sign the form, some don’t. Robin Young has been successful, and so has Mary, but others said they had been refused. It is certainly worth asking, and forms are available from the GP.

The MS Society has changed its membership policy, and the national membership has been scrapped. When joining, you need to specify which group you want to join – it will Cost just £5 per year. The Bournemouth group is looking for volunteers to drive their minibuses to transport clients to the MS Centre. Travelling expenses are paid. For anyone wishing to join the Bournemouth branch, there is a neuro-physio there, which you can access. Mary is looking to see if it is possible to get neuro-physios elsewhere.

She attended the MateS meeting in September, when a MS nurse specialist was the guest speaker. Apparently a New Pathway is to be launched early November, and will be on the Department of Health website. It recognises not only the diagnosis of MS, but also single episodes of demyelination. TM fits this category. It will act as a diagnostic tool.

Professional support is frequently not given to those patients diagnosed with TM when they leave hospital. MS nurses are now beginning to be asked to see people with Clinically Isolated Syndromes, and TM is in this category.

Groups are asked to make suggestions for things such as coping mechanisms, helpful links for those newly diagnosed, what support is needed, etc. We need to spread awareness.

The proposed trip to Street has had to be cancelled. Robin and Val Young went there to check it out – there is Shopmobility there. However, the cost of transport was high - £20 per person – and this was felt to be too expensive. Val has resigned from the committee due to personal circumstances; a replacement social events co-ordinator is being sought.

The group was asked to make suggestions for future social events. Ideas raised included a lunch at the hall before our meeting in January, a trip to Salisbury, a trip to Haskins Garden Centre, and a pub lunch. These ideas will be further discussed at the next committee meeting.

Val Young had her lovely hand made cards for sale again, this time all with a Christmas theme. Profits as usual to the group.

Yvonne, our information co-ordinator, told us about the Disability Rights Handbook. She informed the group that Incapacity Benefit is to change to Employment and Support Allowance. Anyone already receiving Incapacity Benefit will not be affected. This ESA has 2 elements involved – 1) NI contribution based 2) Income assessed.

Cinema Cards – These can be purchased for £5.50, and need a photograph. Once you have one of these, a carer goes free. You need to look at the Cinema Exhibitors website for details.

Bus passes – if you get DLA with the higher rate for mobility, then you can get a bus pass. If you need a carer, a ‘C’ is placed on the pass, and the carer can travel free. However, you must then have a carer with you. Applications are made through your local council.

Disabled railcard – this offers reduction on rail travel. However, if you are a wheelchair user, then you can get 50% discount for both yourself and your carer, so the railcard then works out more expensive.

Sue, our librarian, has various resources available, including a book The Autoimmune Epidemic, with the foreward having been written by Doug Kerr.

Fundraising

Mary asked for ideas regarding raising funds. Ideas included a table of good quality items for sale at the meetings and a sponsored parachute jump. Janet Biss informed the group that their local Young Farmers Club, to which their 3 sons belong, have decided to nominate TM as their charity to support this year. The year runs from September to August.

Thanks to Barbara Sadler for providing such delicious cakes for the tea break, and thanks to both Barbara and Jane for the teas.

The leaflet for Family and Friends has been redesigned, including a new picture on the front cover.

Blue bands have been asked about. It was suggested to either contact Lew to see if he has any, or Jim Lubin.

Information has been requested by Yvonne. If anyone has any information such as equipment, alterations, good workmen, etc, could they please let Yvonne know so that she can add it to her repertoire?

Flu jab

There was a brief discussion regarding the pros and cons of this vaccination. Some members had felt some side effects following the vaccination, particularly in their legs, whilst others hadn’t. It would seem it is a very individual response. Mary did point out that live vaccine is no longer used.

Future meetings

At our next meeting 31^st January there will be a guest speaker – Caroline Hutchings. She is a Neuro Rehab Consultant at Southampton General Hospital.

In April a continence nurse specialist, based in Winchester, will be speaking to us.

The next meeting of the London group will be held January 17^th, when the guest speaker will be a consultant neurologist specialising in neuropathic pain.