Present: Mary & Andrew Bergin, Patrick and Janet Biss, Teresa Bryant, Frank & Jane Devine, Angela and Lance Harris, Keith Hooper, Marian and Bob Leach, Peter Poll, Annabelle and Neil Povey, Gill and Alan Rowe, Barbara Sadler, Yvonne Trapp, Kath Vincent, Roy and Jean Wright, Robin and Val Young

Apologies: Hilary Barefoot, Barbara & Barrie Houston, Sue Hyatt, Malcolm Plested, Judy Stanford and Graham & June Ward,

Mary opened the meeting and welcomed everyone to the Annual Review which will be followed by a Strawberry cream tea and raffle. She also introduced the speaker Janet Chierchia from Hampshire Carers Together.

Mary commented that it has been an exciting and eventful year since July 2009. The group continue to meet every quarter, on the last Saturday in January, April, July and October from 2-4pm. 11 new members have joined since July 2009; (the previous year there were 19 new members) and it is always good to see new faces.

Committee

The committee have all agreed to stand again for the next year, if nobody has any objections. There is a new committee member - Lance Harris. Mary said she was sure he will be an asset to the TM committee and group.
She gave personal thanks to Barbara Sadler who bakes the cakes and serves refreshments for the group with June Ward and Jane Devine. She also thanked Barbara Houston, the secretary for her help and for taking such super minutes. She then thanked Teresa Bryant, the previous chair who has been a great help to her as both a vice chair and friend, and Yvonne Trapp who is the information co-ordinator. She passed thanks to Frank who is now organising the Welcome Packs for new members and Sue Hyatt who is treasurer and organises the books, claims and Hall bookings for the group.
Any new members would be very welcome to join the committee; if anyone is interested please speak to any committee members.

Fundraising

A financial breakdown from Sue Hyatt, treasurer, was available to all. There are two accounts - a Community account which has £423.87, and a Business Money Manager account which holds £510.58 as at 5th April 2010. This does not include the £1,000 from the Young Farmers. The total for the two accounts is therefore £1934.45. These are looking much healthier.

The skydive by the Glastonbury and Wells Young Farmers’ group on 6th September 2009 raised over £8,000 and they kindly donated £1,000 to the Poole TM group, whilst the remainder went to TMS with a cheque presented on 6th February 2010.

Our Sponsored walk 18th April 2010 was from Boscombe pier to Bournemouth pier and back.  21 people participated and we raised approximately £2,500 including the estimated gift aid. This money is to be earmarked for Dr Anu Jacob’s research into TM. All cheques are to be sent to TMS on Monday 2nd August to their treasurer. When Mary has the final total she will put a write up and photos in the New Milton Advertiser and Times, the Lymington Times and the Bournemouth Echo.
She gave a special thank you to all of the 21 people who went along and took part, and particular thanks to Sue Bridge from Surrey who raised £700!

Welcome Packs

These were developed by Mary and the committee for new members in paper format, but are now also available to download from our web page. However, it has room for improvement and we will be adding a copy of the Brain and Spine Foundation booklet on TM which has been updated for 2010.

Research and Presentations

Dr Anu Jacob from the Walton Centre in Liverpool is conducting research into TM. However, of his initial 297 patients only 31 were found to have an idiopathic TM. They have now developed another centre for NMO at the John Radcliffe Hospital in Oxford. Patients north of Birmingham are seen at the Walton. A few members have seen Dr Jacob for a second opinion with their TM diagnosis.

Amy Edwards the Degree student from Liverpool University with TM has conducted her research into TM and fatigue. However, she failed to contact our 4 members who were willing to take part, which is a great shame.

Mary had been lucky to have the opportunity to speak about TM at the Southern Counties Continence Forum in September 2009 defining the diagnosis between TM and MS. She had an article published in January 2010 in the Royal College of Nursing Continence Forum Newsletter about TM and continence. Most recently Mary spoke at the new South East TM Group in Tunbridge Wells about TM and MS in June where she was their guest speaker. There are now 9 UK support groups up and running.

Meetings since  July 2009

July 2009               Cream tea and annual review
October 2009         Halloween theme
January 2010          Tracey Evans MS nurse specialist from Disability Action 
                                 as guest speaker
April 2010              Sponsored walk on the 18th and meeting on the 24th with
                                carers’ theme. Gaining feedback from carers and TMers
                                to present to Janet Chierchia in July
June 2010             TMS UK group Leader meeting in London to discuss future of TMS
July 2010             6th July Mary and Teresa attended a Neurological conference in   Dorchester. Patient and public involvement event, managers and support links in Neurology spoke and had stands. This was an opportunity for Mary to feedback pros and cons of TM and MS, and services for NHS in Dorset and Bournemouth and Poole area. Mary fed back concerns about lack of neuro physio, and support and awareness from health professionals about TM.

Purchases

Teresa has purchased a laminator for the group to produce a professional looking display, thanks to Janet Bliss for the suggestion. A suggestion box is available for group members to write thoughts, concerns and ideas for the group.     

Future for the Group

At the meeting in April the idea of having a neuro physio provide a one hour session before our meetings, using some of the money raised and donated, was discussed. The committee have looked into using the BPC physiotherapists who provide the Neuro physio at the MS centre in Parley. BPC is run by a husband and wife team Andy and Helen Curtis. Andy is a sports physio and Helen a Neuro physio; they also have another neuro physio working for them, Nycky, who covers the MS centre sessions. This group session would be immediately prior to the meeting and would involve no extra cost to members; however, there would be the need to keep up the fundraising efforts.
BPC are also starting Pilates classes at the Osborne Centre from Sept on a Wednesday morning, 10.30-11.30. (They may also start Friday evening classes 6-7 in the future). Places need to be booked and you need to join the MS Society at a cost of £5 a year to be able to access their services and qualify for the subsidised fee of £3.50 per session, if you block book. Mary commented that this all sounds very exciting. She will keep the group posted as there may be a physio session held before the October meeting.

Website

The web page is updated periodically with useful links about TM, Neurology and disability support, so it is worth keeping an eye open. There is now a photo tab. Jim Lubin in the states is to put on pictures from the meetings, skydive and sponsored walk.
The TMS website is to be revised and improved following discussions at the TM group leaders’ meeting in June. It was felt it needed brightening up and making more positive and interactive.
When accessing the link for Amazon, log onto TMS or our Poole web page, as just by doing this 4% of any money you spend is donated to TMS.

Conference 2011

Discussions at the June meeting in London again got ideas flowing for the second TM conference to be held in 2011. It is to be held at the Wyboston Lakes Conference Centre near Birmingham, with dates to be confirmed, but either 25th / 26th March, or 1st / 2nd April. It will be a day and a half long, half day Friday and all day Saturday. The cost will be £70 per person ; accommodation with disabled accessible rooms will be available at Wyboston and other hotels on the same complex, with 19 accessible rooms in total. Friday will cover children’s neurology, continence and depression. Saturday’s topics will include Doug Kerr talking about stem cell therapies, fatigue, rehab, neuropathic pain, and there will possibly be a speaker from the Walton. The agenda is not yet finalised.

Ideas from last meeting

• Janet Biss suggested a book swap for the meetings with people bringing in read books for people to buy for 50 pence. The committee discussed this but felt a volunteer would be needed to bring books to meetings. Janet Biss and Jane Devine have kindly agreed to take this job on, for which they were thanked.
• Janet also suggested a trip to Wells, something maybe for the future but would be tricky with group members coming from 5 counties.
• The cake stall at the meetings will continue, as will lunch annually, along with larger fundraising events.
• There is an aim to organise another sponsored walk for 2011 with money raised to go towards the Poole group.
• Gift aid for subs was discussed with Lew Gray and we are unable to claim this as we are affiliated to the main TMS charity number; only they would be able to claim gift aid. We can set up a Just Giving site for future fundraising events and claim gift aid via TMS charity number.

US Conference

The 2010 Rare Immunologic Disorders Symposium is being held 24th-26th September in Texas at a cost of $225 for patients and family numbers. The TMA website has more details.

HNA

The June conference was cancelled due to lack of interest; a future date is awaited.

Janet Chierchia from Hampshire Carers Together

Janet told the group a little about how she first got involved in caring. 33 years ago she had a daughter with Downs Syndrome and realised there was the need for a support group, so she set one up. Her father then developed Macular degeneration, and then developed cancer, and her husband had a stroke, so she has a lot of personal experience as a carer.
Hampshire was the first county to realise carers needed support, and to help set up this valuable resource, helpers came from lots of different backgrounds.
Hampshire County Council gave the group a £2,500.00 to get started and help with the cost of producing a newsletter. They then received a 3 year lottery grant and the group are still going strong after 25 years.
They understand the needs of carers as they have “been there and done that”.
Carers naturally have fears and need to know they are not alone, they are all different, some feel guilt, some need to go through the grieving process and ask why me?
The government estimate that £58 million pounds is saved a year by carers looking after loved ones, all of course unpaid.

Priorities for Carers
Hampshire Carers Together (HCT) provide access to/information on:

• A source for information so that carers can make an informed choice on what help  they need and how to access it
• Links to other carers to network, exchange information and ideas and support each other
• A freephone listening line is open 9am-11pm 365 days a year
• 60 part time staff who help at home giving carers respite or help filling in forms  e.g. DLA applications
• Links to the 40 carers groups operating in Hampshire
• Carers awareness training

Caring with confidence courses were run in Hants and the Isle of Wight but as funding has been pulled these will cease. HCT has the course content.

HCT suggest a clear action plan set up in case of emergencies. Full personal and medical info is written down, including medications, so this can be given to doctors and paramedics quickly if needed. The Department of Health initiative to develop a personal profile and has been given a year’s funding.

Carers’ rights 2000- 2005 - Carers have the right to work, to have breaks, have leisure time, however, in practice………!

Janet pointed out:

• Some dial a ride mini bus services may be available at weekends with volunteer drivers.
• Carers need “time for you days” so take up a hobby
• Our group may be able to get our own charity number
• Although they are only able to help people living in Hampshire most counties now have similar groups, so it may be worth people trying to contact theirs.

Mary thanked Janet for her talk and Teresa presented her with a bouquet of flowers. There was then a break for strawberry cream teas. The scones had again been baked by Mary’s mother.

The raffle was held and the hamper was won by Peter Poll.

After tea the meeting was closed and all wished their thanks to be passed on to all involved in the wonderful summer treat.

Our next support group meeting is on October 30th at 2pm. It will be an open meeting with a cake stall with Barbara Sadler’s cakes and Hand Made Christmas cards by one of our members, Val Young.