Group Leader/Chair    Mary Bergin    01425 610104   maryfairy@myelitis.org
Vice Chair    Teresa Bryant    01202 244356    teresa.bryant3@ntlworld.com 

Present: Mary Bergin, Denise & Graham Budworth, Teresa Bryant, Frank Devine, Lance & Angela Harris, Keith & Lin Hooper, Barbara & Barrie Houston, Enid & Ted Jones, Mary McRobie, Peter Poll & Barbara Sadler, Peter & Rita Reynolds, Gill & Alan Rowe, Ann & Terry Sparling, Sylvia Subramanyam, Yvonne Trapp, Kath Vincent, June Ward, Leah Welsford and Jean & Roy Wright.

Apologies: Hilary Barefoot, Patrick & Janet Biss, Sue Hyatt, Bob Leach, Connie & Phil King and Judy Stanford.

 After Mary had welcomed everyone to the meeting, Tracy Evans from Disability Action took the floor.
Disability Action was set up in 1990 by Dr Chris Moran as a research project based around 6 GP surgeries. It was identified that young disabled people needed ongoing support in the community. It was initially funded by the Logres Trust. The need for the service was proven, and the team is now funded and managed by Dorset NHS Primary Care Trust. There is to be further funding from Bournemouth and Poole. The focus of the team is to provide a specialist community service, providing support, management and treatment to adults with physical disability.  The team covers the former South and East Dorset PCT as well as the Bournemouth and Poole PCTs.
There is an active steering group, with members from Social Services, GPs, service users, carers, and link consultants. They meet every 3 months.
The team is made up of a Team Leader/specialist MS nurse, an Administrator, a Disability Nurse, a Physiotherapist, a Specialist Neuro Occupational Therapist and a Support Worker.
The Consultants involved are Dr John Burn, Consultant in Rehabilitation and Brain Injury, Dr Emma Murphy, Consultant in Rehabilitation Medicine, and Dr Claire Myint, Consultant in Rehabilitation Medicine, Orthotics and Wheelchair Service. There are also strong links with Dr Charles Hillier, Consultant Neurologist with specialist interest in Neuro-Inflammatory Disease.
The Criteria for involvement with Disability Action are as follows:

• Adults
• Diagnosis which leads to physical disability
• Physical disability and related diagnosis is the primary problem
• There is not another similar team or professional managing that patient

Out of 481 clients, 53% have MS. Other conditions include Epilepsy, Huntington’s, Spinal Cord Pathology, Amputation, Arthritis and Fibromyalgia.
57% of clients are from the Poole & Bournemouth, 42% from South and East Dorset, and 1% from Ringwood.
The service aims are:

• To act as Care Managers where appropriate
• To overcome activity limitations, promote autonomy and participation, and to facilitate psychosocial adaptation
• To support the client/family/carer in the process of adapting to their circumstances through the provision of appropriate interventions, information and advice.
• To act as a resource for other health and social care professionals

The referral process, which is instigated by a health professional (the waiting list is currently 6-8 weeks) is as follows:

• An initial assessment
• Goals and an action plan are formulated with the client and family
• Interventions conducted as appropriate
• Liaison with/referral to other professionals/agencies as appropriate
• Agreement on type and time interval for review
• Patients are not discharged, but may be dormant. In between times, a client can contact Disability Action, and there is an SOS system. If nothing has been heard from the client, after 5 years Disability Action will make contact.

Following an initial assessment Disability Action is able to pull everything together with other agencies. They have a physiotherapist for short term work (2 weeks), or they can refer a client on. There is someone in the team for communication. They can reduce unnecessary appointments by keeping within the Disability Action base. They can refer directly to other specialists.
This year they are to put together client centred information folders. These could include our TM new members’ packs.
Hampshire PCT have neuro rehab services, but clients do not remain on their books as they do with Disability Action.
Discussion followed Tracy’s very informative talk. Members are disappointed that other regions do not have a similar scheme. Neuro rehab consultants should know what teams are out in their regions – is this information made available?
Tracy was thanked, and there was a break for tea.

The Young Farmers have raised £8000 this year, of which £1000 is to be donated to the Poole & Bournemouth group. The remainder will go to TMS for research. There is to be a presentation 20th February – Lew and Mary are to attend.

The date for the sponsored walk is April 18th, meeting at Boscombe Promenade 12.30 for a 1 o’clock start. The walk will be from Boscombe to Bournemouth Pier and back, approx 5 Kms.
Sponsor forms are available from Mary, or can be downloaded from the web page. There is a Harvester restaurant on the sea front where people might like to go to at the end. There are toilets and 19 disabled parking spaces at Boscombe. There are also toilets at the BIC, IMAX, Bournemouth Gardens and the Pavilion. Mary will obtain Public Liability Insurance. Money collected will need to be handed in by the July meeting.

The web page has several links, including Disability Action and Wessex Driveability.

It has been suggested that alternative therapies be made known. If anyone uses or has opinions about these therapies, please let Mary know, and the information can be made available.

A suggestions box is available at each meeting. Mary will put the content to TMS, committee, members, web page etc as appropriate.
Alan Rowe had put the suggestion of a yearly subscription. This had been discussed at committee, and it was decided to continue with quarterly subs as at present. Alan’s suggestion could generate more income if it were gift aided.

Amy Edwards is a university student, who had TM when she was 13. Her final year project is investigating the link between TM and fatigue. If any members feel they can help her by completing a questionnaire, please let Mary know.

Doug Kerr has left Johns Hopkins, although he will remain involved with Project RESTORE. Dr Carlos Pardo will be his replacement.

Mary reminded members to look at the display board for information, which included leaflets on Disability Action. There are also library books and DVDs available to borrow.

There is a national cinema card available at a cost of £5.50 for a year to anyone in receipt of DLA/AA. This allows 1 free ticket for the person accompanying you. Further information is available at www.ceacard.co.uk

Our next meeting will be 24th April, with Julie Mullet Carer Support Officer. Both halls have been booked, so that carers can talk to her away from those they care for, allowing ‘freedom of speech!’

After the raffle, the meeting was closed.