Present: Mary & Andrew Bergin, Patrick & Janet Biss, Teresa Bryant, Lilly Da Gama, Joe Da Gama & Maureen Wallace, Frank & Jane Devine, Lance & Angela Harris, Keith & Lin Hooper, Enid & Ted Jones, Malcolm & Mary Plested, Peter Poll & Barbara Sadler, Lorraine ?, Peter & Rita Reynolds, Gill & Alan Rowe, Yvonne Trapp, Kath Vincent, June Ward, Connie Wincott, Roy & Jean Wright, Val Young.
Apologies: Denise Budworth, Barbara & Barrie Houston, Sue Hyatt, Connie & Phil King, Judy Stanford, Graham Ward, John Withey.
Mary welcomed everyone to the meeting and apologized that the guest speaker, Julie Mullett was unwell and had cancelled at short notice. She is provisionally booked to speak on April 24th 2010, confirmation will be on our web page and sent on email or written reminders for the April meeting. Mary suggested that the carers in the Group might like to talk together in the Small hall about carer issues, but they were happy for the meeting to be a general open meeting with general chat and discussion.
Mary gave a brief account of the July meeting which had been an informal AGM with an overview of the previous year, and a very enjoyable cream tea. This meeting had a Halloween feel to it, Mary wearing a witch’s hat, the tables decorated with pumpkins and the cakes also decorated to the same theme.
Mary gave news of the sky dive on 6th September 2009 undertaken by Patrick and Janet Biss’ sons and son in law from the Glastonbury and Wells Young Farmers Club. We are very grateful to this Group for their fundraising throughout the year, the proceeds of which are going to the Transverse Myelitis Society and a proportion to our own Poole Myelitis Group. A total of over £8,000 has been raised, some of which will go to research. Members were asked for further suggestions to make good use of this money.
This led on to the next item – a suggestion box, with paper and pens, will always be available at each meeting. This had been agreed at the committee meeting as a good way of involving all members, hoping to gain feedback on what is good, or bad, at meetings, ideas for using the funds we raise, suggestions for topics for guest speakers – in fact anything you would like to see happening at the Group.
Val Young had Christmas cards for sale – proceeds going to our own Group funds. Packs of 5 cards were £4.00, large individual cards were £1.50.
The raffle this meeting was a large hamper for Christmas (value £50). Tickets were £1 each and the lucky winner was Kath Vincent. The committee would like to know whether having one substantial prize at each meeting was preferable to several items of smaller value. The January meeting will have smaller items again. Please let us know which you prefer.
It is important contact details are kept up to date, so please let us know by email, or in the suggestion box, of any changes to email address or phone numbers etc.
Mary gave an update on the work of Dr Anu Jacob at the Walton Centre. He is the only neurologist in the UK specializing in NMO and TM. He dedicates one day each week to TM research. He has been allocated £10,000 from TMS for research. He has set up a study of idiopathic TM and enrolled 297 patients, but of these only 31 were idiopathic in origin, the others were found to have an underlying auto-immune problem. He is now recruiting for more patients for the study from general hospitals, as it is too small a number for the findings to be of value.
A sponsored walk is planned for April 18th 2010 from Bournemouth to Boscombe Pier and back – a distance of 5km. More details will be available on the webpage to download, and more details and sponsor forms will be available at the January meeting.
New information and leaflets were available on the display board and table including a leaflet about Holton Lee which is an excellent facility just outside Poole offering accommodation and activities for both patients and carers, with care available so carers have a break too. There were several books available for loan, which Mary encouraged members to borrow.
A letter has been received from Elizabeth Richards a neuro physio based in Shaftesbury. She makes home visits in Dorset, Hants, Wilts and Somerset. She charges £55.00 (special offer £5 reduction on this price) for an initial hour assessment and follow up sessions for shorter periods, ie 30 mins for £30. Members living in Poole/Bournemouth area can make use of the facilities at the Osborn MS Centre at West Parley. It is well worth joining the MS Society for £5 a year, for the close link we have with the condition and the relevant and interesting information in the bi-monthly magazine which is sent to you.
Mary gave information about the consultation ‘Shaping the future of care together’ which is considering changes to DLA and AA. Members were given slips of paper with details of web links to look at, including a petition to Downing St which we should consider signing to preserve these allowances. http://petitions.number10.gov.uk/AttendanceA/
http://careandsupport.direct.dov.uk/greenpaper/execsum/
and email careandsupport@dh.gsi.gov.uk
Blue badge scheme – new online service available in Poole and Bournemouth to apply or renew
www.boroughofpoole.com/bluebadges or www.bournemouth.gov.uk/bluebadges . If you need assistance - 01202 633605 (Poole) or 01202 458744 (Bournemouth)
When you buy anything from Amazon don’t forget to log on from the link within our webpage or the TMS site. A 4% donation is then given by Amazon to TMS.
A vacancy still exists for a Social events organizer, or another volunteer to join the committee. Please let Mary know if you are interested.
The next meeting is January 30th 2010 when Tracey Evans, MS Nurse from Disability Action is the guest speaker. The meeting closed at 4.00 pm.
Further dates for next year’s meetings are April 24th, July 31st and Oct 30th. The Group has now been in existence for 4 years. We value your support and look forward to seeing you in 2010. |
