United Kingdom

The UK Support Group has been supporting the TMA for many years. Geoff Treglown (Ambleside) and Lew Gray (West London) handle TMA Newsletter distribution to members in all European countries. The first local support group started meeting in Telford (west of Birmingham) as far back as 1996. Now there are other flourishing groups meeting regularly in Scotland, Manchester, London and soon Bournemouth. We have about 400 members in the UK, including 28 families with children with TM.

Sally Rodohan was diagnosed in the Republic of Ireland with TM in 1958. She moved to London in 1964, got married in 1968 and had three children. She had never met or heard of another person with TM until 2003. One evening an article in a national newspaper with a picture of a young girl in a wheelchair headed, ‘Has to wait eighteen months to know if she will walk again’ attracted her attention. She was surprised to read the diagnosis was Transverse Myelitis and noted a web address for TMA. It inspired her to contact Sandy who suggested she contact Geoff Treglown in the UK.

She did and Geoff sent her a new member pack that included a newsletter and other useful information. She telephoned to thank him and enquire about fundraising in the UK. Geoff explained he was trying to open a British bank account to eliminate transfer fees but was experiencing many problems. In the meantime, he suggested she set up a support group in London.
 
The next development was when Christina, the HR manager of Computer Associates, contacted Geoff and explained that one of their employees, Karina Garcia-Casil had approached her requesting that the company, who do substantial fundraising, add Transverse Myelitis to their existing list of causes. Karina’s daughter, Zoe, contracted TM two years ago when she was two and a half. Geoff asked Sally to meet Christina and Karina to discuss the possibilities. Christina explained they were very willing to organise funding but could only do so if we were registered as a UK charity. Karina and Sally agreed to find out from other members how they felt about this action and what their needs were.

They organised the first London Support Group Meeting in June 2004. Geoff traveled from Cumbria to offer his support and knowledge. Twenty five people attended and it became evident that there was a need to raise awareness of TM, not only in the medical profession, but also throughout all the public services. In order to confirm the needs expressed at the meeting were felt throughout the TM community a questionnaire was produced and circulated to all members on the UK database. The response highlighted weaknesses of care across the country, from slow diagnosis to poor rehabilitation and aftercare. When the results were discussed at the September meeting we agreed members needed more support and Lew Gray offered his help and experience.

In late 2004 Lew, Geoff and Sally met in Lichfield to discuss the way forward. Despite all the good work, the UK, like most other countries, was still relying on US-based funding for postage. TM still had a terribly low profile in the UK, and we were only reaching a minority of people newly diagnosed with TM.

The first step was to apply for UK registered charity status. This would allow the TM Society to reclaim UK tax on donations (28p for every pound we collect) and help get finances onto a firm footing. Then the goal would be to fund the Newsletter distribution in the UK, then Europe and then hopefully contribute to Project RESTORE which is “the only game in town” when it comes to TM research.

One of the requirements for the application was to name the Trustees.  At the December meeting the Trustees were appointed: Sally Rodohan (Chair), Lew Gray (Secretary), Mel Corley (Treasurer), Yvonne Kolesar, Jean Anthony, Tony Brohn, (Tony has since resigned because his diagnoses was changed to MS) and Carmel and Therese Rodohan (Sally’s daughters). 

Once we achieved registration with the Charity Commission (in only three months as compared to the usual six), we found that we weren’t as alone as we thought we were! The Brain and Spine Foundation publishes an excellent booklet introducing TM, and also maintains a telephone helpline staffed by specialist neuro nurses.

We have accomplished to date:

• Opened a UK Bank Account;
• Registered with the Inland Revenue to obtain Gift Aid on donations;
• Secured suitable venue for meetings;
• Have quarterly London Support Meetings attracting regular attendees and new members;
• Formed a working committee;
• UK Website page expanded to include more up to date information with the help of Jim Lubin;
• Produced a leaflet suitable for distribution in hospitals, doctor’s surgeries and rehabilitation centres;
• Contacted many TM’ers by telephone; and
• Carried out considerable cleansing of the UK database.

We also joined the Neurological Alliance, an umbrella group consisting of over 50 charities (from ataxia to trigeminal neuralgia). The Alliance publishes great information, such as Getting the Best from Neurological Services. But even more important, it acts as a bridge between the voluntary/charity sector and the National Health Service and the government.

After years of discussion and lobbying by the Neurological Alliance and others, in April this year the NHS announced a new National Service Framework for Long-Term Neurological Conditions, which all NHS and social services departments are supposed to achieve over the next 10 years. The Quality Requirements include:

• a ‘person-centred service’ with full assessment of each person’s health and social care needs, information and education to be provided about the condition, and involvement in writing of an individual care plan;
• Quick referral to specialist, followed by prompt diagnosis and treatment;
• Timely, high-quality rehabilitation services including vocational support;
• Health and social services to work together to assist people to live independently, including wheelchairs, home adaptations, etc;
• Support for family and carers and palliative support as required.

So it’s nothing if not challenging!
 
Our Plans for the future:

• Continue to find better ways of making ourselves known to newly diagnosed people;
• Start organising fundraising activities;
• Set up more local support groups;
• Encourage involvement of more members in activities, such as visiting TMers in hospital, distributing leaflets;
• Telephoning members in local areas;
• Help with comments and ideas regarding website design and leaflet design; and
• Finance the distribution costs of the TMA Newsletter in the UK – next time round.

We have had an exciting year and have learned and accomplished a lot. We have met wonderful people and shared their concerns and experiences. We have endeavored to reach as many people with TM as possible and have been humbled by the appreciation extended to us for just a simple telephone call. We encouraged family members and carers to feel welcome in attending our meetings or contacting us by telephone or email and a number of people have.

Thanks to all members of the committee who have so willingly supported and given their time to getting us this far and to everyone at the TMA for their constant advice and support, to members who made long journeys to attend support group meetings and for the constructive feedback they sent to us. A special word of thanks to Geoff Treglown for ensuring new members receive their information packs promptly and for his reassurance on matters and guidance in getting us started.

We are looking forward optimistically to the year ahead and will continue to support the fantastic work of the TMA and Project RESTORE at the Johns Hopkins Centre.

Sally Rodohan and Lew Gray