Bath Rugby Club visit Warminster
The Multiple Sclerosis Therapy Centre in Warminster is currently having regular visits from several members of the Bath Rugby Team who are receiving oxygen therapy to help with their sports injuries. Francois Louw is now receiving oxygen therapy for a sports injury which he incurred during their triumphant win over London Irish at the Madejski Stadium in Reading. Francois who is originally from South Africa and has been capped 28 times for his country uses the oxygen therapy centre on a daily basis to help him recover from his injuries.
Rosie Eliot, the Manager of the Therapy Centre, said: 'Oxygen therapy has been used by professional sports teams up and down the country for many years, and we are delighted to welcome our local heroes from Bath Rugby Club. Many of our members who use oxygen therapy regularly for their MS, sports injuries or cancers have been surprised to find a six foot five rugby player in the chamber with them and everyone is thrilled to have them at the centre. The players are lovely to have around and extremely polite.'
During this rugby season the hyperbaric oxygen chamber, based at this Warminster charity, has been used by other illustrious Bath players including Rob Webber, Jonathan Joseph (JJ) and Alafoti Fa'osiliva who have all received sports injuries such as ligament strains and sprains.
Brent Taylor, one of the physiotherapists for Bath Rugby Club said: “We are very happy to be using the oxygen therapy at the MS Centre in Warminster, and we feel the players are benefiting from using the oxygen on an intense and regular basis. The players are reporting very positive effects from using the MS centres' hyper baric chamber, by accelerating their healing and rehabilitation the players are able to crack on with their rehabilitation.” We are very grateful to this local charity for supporting us and being so kind and helpful to the players.'
Hyperbaric oxygen has long been used to speed up the healing of sports injuries. Without sufficient oxygen the strength of the tissue repair is much weaker than normal. Unfortunately oxygen is a gas and not available as a pill or injection. In order to get more oxygen into the blood and speed up the healing process it is necessary to use a special pressure chamber like the one used at the therapy centre. This Centre tries to help those who need oxygen therapy in an area ranging from Bath to Salisbury and Yeovil to Andover.
April 2014 Open Meeting Report
The April Open Meeting and AGM were held at the new Chilterns Centre on 13th April. Representatives attended from 24 centres. The Open Meeting began with an update of MSNTC activity: two surveys, relating to general activities and specifically to the provision of Physiotherapy and exercise facilities, are currently open; there are some new member centres and some resignations; and generic leaflets are being produced on behalf of the centres. Assistance in fundraising includes 10 Marathon places, 10 Ride London places, and the annual MS Challenge. For more details on all of these, see the 'Support Us' page.
Professor James presented on his book 'Oxygen and the Brain', due to be published, and then discussion turned to the Oxygen Advice Service. Full details can be found in the Members Area, including other related documents.
Warminster Charity Wins National Award
The Wessex Multiple Sclerosis Therapy Centre based in The Avenue in Warminster has been awarded the title of MY MS SUPER TEAM 2014 by the MS Trust. The MS Trust is a large national charity that once a year recognises a person or a group of people who have 'gone the extra mile' caring for people with multiple sclerosis. The therapy centre is an independent charity and provides therapies, information and practical and emotional support for people with multiple sclerosis, their carers and families. Centre Manager Rosie Eliot said “On behalf of all the staff, therapists, and volunteers I want to say a very big thank you to the MS Trust for making us feel so special, and to our members for nominating us. Our centre is a special place and we believe our work contributes to 'positive living with MS'".
The MS Trust received hundreds of nominations around the country and chose the Wessex MS Therapy centre because of the quality of the statements that where made about the hard work of the Warminster charity. Heather Haddow, a member who was diagnosed with MS 11 years ago uses the centre on a weekly basis said in her nomination "All the staff and volunteers treat me with so much respect and kindness that I'm sure they help my MS as much as the therapies. I usually arrive feeling pretty bleak about my increasing disability but I leave not only feeling physically better but thinking 'I can do this' .
For the third year running the therapy centre ran a Warminster wide MS Awareness day on Friday. A number of events where organised for the day including a supermarket collection at Morrisons in Warminster for the Friday and the Saturday. The Three 3 Horseshoes Shopping Mall played host to a Tombola and Cake stall which was very busy throughout Friday morning. 'Lots of lovely homemade cakes where donated by our members, staff and volunteers. People where keen to buy them for friends and family they where having over the Bank Holiday weekend' said the community fundraiser Tori Allison. The Avenue Primary school, which is also located in The Avenue, next to the therapy centre, where also keen to get involved and ran a non uniform day to raise funds for the charity. Centre manager Rosie Eliot said 'It is fantastic that the Avenue school is getting involved, working alongside their local charity. We have joined forces with the school on an art project for our therapy garden and we are delighted they wanted to help raise funds for the centre as well'. The whole day was supported by volunteers from the centre.
'Mad Englishman' walking the coast of Britain
Self-described mad Englishman Pete Hill is undertaking an extraordinary challenge: he is spending 10 months walking the coast of Britain. He is raising money for MS National Therapy Centres and the Spinal Injuries Association.
The actual perimeter of the islands than make up Great Britain is over 11,000 miles, but the practical route for walking is between 4000-7000 miles. He has set himself some rules - these include: to follow marked trails/paths; to use occasional short-hop ferries (as long as they don't exclude more than 100 miles of coast); if collected at the end of the day, he will resume the next day from where he left off; he is not going round any of Britain's 942 islands; and the distance will be measured using GPS and OS data.
He started in Southampton in February and is currently near Liverpool. So far, he has covered more than 1500 miles and climbed the equivalent of 8 Everests. His website has a detailed blog, and also a tracking system which shows his current position and each day's progress. Support is being provided by friends and volunteers, bringing his camper van to meet him each day. There are some spaces left for volunteers, particularly around Scotland.
To help, donate, or just read about his challenge, click here for his website: www.gbcoastwalk.com
January 2014 Open Meeting Report
A lively meeting took place, and the full details, presentations and documents can be found in the Members Area. Attendees were informed that the date of the AGM has been changed to 13th April 2014.
October 2013 Open Meeting report
The meeting commenced with general news about new members and potential new centres, and the regrettable potential closure of Sturminster Marshall in Dorset. Presentations followed on the recently published Epidemiology study and the Priority Setting Partnership: details of both of these are on the news section of the MSNTC website, with additional information/slides in the Members Area. Stuart gave an update on the MS Society’s project on ‘Working Together Locally’.
There was general discussion following these presentations, covering various areas. It was highlighted that the Royal Marsden is using O2T as part of their treatment of cancer patients and will be producing a report in early 2014. Centres were encouraged to put together a selection of case studies for both MS and other conditions for use at short notice, in case a journalist should get in touch seeking information. The MS Support Centre in Saltney is receiving 6-8 new members per month as part of their pilot with the local Clinical Commissioning Group, while Gibraltar treat 300 patients per week.
In the afternoon the discussion focused on the Strategic Review of MSNTC. Chairman Neil Kemsley shared progress to date, including a SWOT analysis, clearly defined strategic roles for MSNTC, and proposed updates to the Mission and Vision of the charity.
Before the meeting closed, attendees were informed that the role of Treasurer of MSNTC had recently become vacant, and were also reminded that that there is no need for centres or members to obtain the consent of GPs before giving treatment. The notification form is a courtesy to inform them that their patient is self-referring for treatment, and a way of letting them know that the centre is there.
Full details of all the above can be found in the News and Members Areas of the MSNTC website.
New study highlights growing number of people living with multiple sclerosis in the UK
The study at the University of Dundee, funded by MS National Therapy Centres (a national charity supporting member Centres across the UK and Eire), has found that the number of people being diagnosed with multiple sclerosis in the UK is falling but the population of those living with the disease is growing as patients are living longer.
Researchers say the findings have significant implications for resource allocation for MS in the UK.
Over two decades between 1990 and 2010 the number of people living with MS increased by about 2.4% a year, despite a fall in the number of people being newly diagnosed with MS over this period.
This was because people with MS are living longer - mortality rates fell by about 3% per year over the same twenty year study period.
Dr Isla Mackenzie, Clinical Senior Lecturer at the Medicines Monitoring Unit (MEMO) at the University of Dundee, led the study. She said, "Our research covers four million patients from a representative sample of GP practices spread throughout the UK. This study provides an up to date national picture of the epidemiology of MS in the UK."
"It is important to have this information on the prevalence of MS in order to understand the impact of this disease and to ensure that adequate resources are provided both nationally and regionally for people affected by MS."
The researchers estimate that, in the UK, just over 6,000 people were diagnosed with multiple sclerosis (MS) during 2010 and there were nearly 127,000 people living with the condition.
The peak age at which MS was diagnosed was between 40 and 50 years. MS is much more common in women than in men - 72% of people living with MS in 2010 were women. MS is also more common in Scotland than in other regions of the UK.
Dr Jonathan O’Riordan, Consultant Neurologist at Ninewells Hospital, Dundee, said, "There are probably genetic and environmental factors at play to explain why it is more common in Scotland."
Dr O'Riordan added, "The vast majority of newly diagnosed patients will have the relapsing remitting form of the disease and will be eligible for consideration of disease modifying therapies. These can cost anywhere from £5,500 to nearly £20,000 per year. This has ongoing cost implications for health care providers."
The study used data from the General Practice Research Database (GPRD) which contains patient records from 8% of GP practices in the UK.
The study was funded by the Multiple Sclerosis National Therapy Centres (MSNTC), a registered charity. Neil Kemsley, Chairman of MSNTC, said, "As more people in the UK are living longer with MS, the help and support provided by the network of Therapy Centres throughout the country will become even more valuable and important in helping them to achieve the best possible quality of life."
Mr David Pullar, who was diagnosed with MS when he was 20 years old, is a member of the MS Therapy Centre Tayside in Dundee. His diagnosis coincided with the opening of the Tayside Centre and in fact Mr Pullar was the first person to use the Centre in 1982. He has been attending there at least once a week ever since.
"I would be lost without the Centre," said Mr Pullar. "I use oxygen treatment and physiotherapy and feel that both benefit me enormously. I find that if I go away on holiday and don't go to the Centre for a week or more I begin to feel lethargic, but once I have oxygen treatment I pick up. I also can't speak too highly of the benefits of physiotherapy. Not only does it help me physically but it also has mood enhancing effects."
Mr Pullar also emphasised the importance of the social side of the Centre and being able to meet other people living with MS. "I used to visit the Centre twice a week but for the last six months I have only been able to go once a week because of the costs of transport. I would love to be able to go twice a week if I could," he added.
Incidence and prevalence of multiple sclerosis in the United Kingdom 1990-2010: A descriptive study in the General Practice Research Database. I S Mackenzie, S V Morant, G A Bloomfield, T M MacDonald, J O'Riordan, Journal of Neurology, Neurosurgery and Psychiatry
About multiple sclerosisMultiple sclerosis (MS) is a neurological disease in which the myelin coating the nerve fibres is damaged, causing a range of symptoms. It is an important health problem which can lead to high levels of disability and impaired quality of life. Interventions to help patients manage their symptoms include drugs, exercise and physiotherapy, oxygen treatment, diet and alternative therapies but at present there is no cure for MS.
About MS Therapy CentresThere are more than 60 independent Therapy Centres spread across England, Wales, Scotland, Gibraltar and Ireland which provide a range of non-drug services for people affected by MS. Each MS Therapy Centre is an individual charity which relies on dedicated volunteers and donors who give freely of their time and money to help people with MS. A high proportion of Centre directors/trustees are people affected by MS, reflecting their motto: "self-help is our way of action".
At present, all Centres are reliant on charitable donations and fundraising activities to finance their operations; collectively, they are the only significant providers in the UK of non-drug services to support the management of the symptoms of MS through the delivery of a range of services which are unavailable to people with MS on a regular basis through the NHS.
The majority of Centres are members of the national umbrella body, MS National Therapy Centres (MSNTC), a registered charity in England & Wales and Scotland (www.msntc.org.uk). MSNTC is a membership organisation which exists solely to support the continuing development of member Centres using the power of collective action. It was created by the member Centres and is directed and partially funded by them.
More than 15,000 people use the MS Therapy Centres each week. This new study indicates that many more people affected by MS in the UK could benefit from the services the Centres provide to help them manage their symptoms.
For more information about MSNTC or individual Therapy Centres please contact:
MS National Therapy Centres
PO Box 2199, Buckingham, MK18 8AR
Tel: 0845 367 0977 • Email: email@example.com • Website: www.msntc.org.uk
Registered charity in England & Wales No. 1031690 and in Scotland No. SC043250
July MSNTC Open Meeting Report
The first presentation came from Joanna Cole-Hamilton of MSTC Lothian, who described an exciting project which the centre is undertaking in partnership with local group KICC (Keeping Fit with a Chronic Condition) to develop appropriate exercise classes across the Lothians for people with long-term conditions. Funded by ALLIANCE Scotland’s Self-Management Impact Fund, the aim is to train instructors and use local venues and eventually create a Social Enterprise which can be spread further across Scotland.
Alice Syson talked about the work of the Health and Social Care Alliance (the ALLIANCE), focusing on projects relevant to the activities of the Therapy Centres, and then Deanna Wolf of the University of Stirling gave an entertaining and informative presentation on Fundraising entitled ‘It’s Not Rocket Science’. This covered all types of fundraising from grants to community activities to corporate sponsorship.
The afternoon session was an opportunity to catch up on the regular work of MSNTC, including details regarding Oxygen standards, finances, a recent Epidemiology Study on MS, and the Priority-Setting Partnership with the MS Society.
Professor Philip James spoke about his new book ‘Oxygen and the Brain’, which is due to be published in September.
Top 10 MS research priorities identified:
Putting People affected by MS at the centre of research priorities
For MS research to have life-changing impact, it is vital that funders and researchers focus on what matters most to people affected by MS.
Last year, alongside several organisations , MS National Therapy Centres embarked on a partnership with the James Lind Alliance (JLA) to find the top 10 research questions important to people affected by MS and healthcare professionals.
The JLA have an established process of bringing together people with health conditions, their carers and healthcare professionals to identify and prioritise research important to them.
After a year of extensively canvassing the views of a wide range of people, including many members of MS Therapy Centres, over a thousand questions were narrowed down to the top 10 most important MS research questions:
- Which treatments are effective to slow, stop or reverse the accumulation of disability associated with MS?
- How can MS be prevented?
- Which treatments are effective for fatigue in people with MS?
- How can people with MS be best supported to self-manage their condition?
- Does early treatment with aggressive disease modifying drugs improve the prognosis for people with MS?
- Is Vitamin D supplementation an effective disease modifying treatment for MS?
- Which treatments are effective to improve mobility for people with MS?
- Which treatments are effective to improve cognition in people with MS?
- Which treatments are effective for pain in people with MS?
- Is physiotherapy effective in reducing disability in people with MS?
Eight of these questions are about treatments already offered and supported by MS Therapy Centres. The MS Society, which funded the Priority Setting Partnership, has stated that it will be working to ensure that these priorities are addressed by research - and Therapy Centres can help them in that process since our Centres are the principal venues at which treatment of MS symptoms takes place on a daily basis.
This is a major shift in setting priorities for MS research. Beyond the MS Society it is hoped the top 10 will help researchers select topics when developing applications, and influence the decisions of other research funders.
The JLA priority setting process has been applied to other conditions such as type 1 diabetes and prostate cancer, with some really encouraging results. Previous partnerships have a track record of turning priorities into research projects by securing major funding for their priorities. This is really encouraging news and we hope to see similar things happening with the MS top 10.
For more information on the project visit: www.mssociety.org.uk/jla
People with MS to benefit from extended therapy services
Scottish Government funding will boost community outreach
More people with MS in Scotland will be able to take advantage of the invaluable therapy, support and advice available from Scotland's Multiple Sclerosis Therapy Centres (MSTCs) following awards totalling £270,000 from the Scottish Government.
The Therapy Centres in Edinburgh and Lochgilphead will use the money to develop their services and transport them to people further afield who are currently out of reach.
Scotland’s 15 and the UK's 60 MSTCs collectively offer over 40 therapies including, principally, Oxygen Treatment as well as exercise, holistic therapies, advice and support.
The news coincides with MS Awareness week 2013, (29 April–5 May), which aims to raise understanding about MS, as well as funds to support those with the condition.
MS National Therapy Centres Chairman, Neil Kemsley said:
"This funding boost is very good news for MSTC Lothian and MS Centre Mid-Argyll. We are grateful to Health and Social Care Alliance, which administers the funding via the Self Management Impact Fund for Scotland, for recognising the invaluable work taking place in the Centres and choosing to support them in extending their services.
"The thousands of people who visit the UK’s MSTCs each week are very forthcoming about their appreciation for the therapy and advice the Centres provide. Equally, the network of friendship and support that has grown up among those that attend the Centres, the staff and volunteers, is overwhelming.
"Our emphasis is on self help; assisting people with MS and equipping them to improve their quality of life. MSTCs offer a huge list of options for support, notably Oxygen Treatment, which significantly alleviates the symptoms of the condition; other services reflect the wide variety of symptoms MS can present and include physiotherapy, tailored exercise classes such as yoga and pilates, counselling and dietary advice. Some Centres run dance classes and offer hairdressing, an example of the kind of everyday activity that can become a struggle for some people with MS.
"People travel for many miles to attend MSTCs, which is where this funding is especially helpful. The MS Centre Mid-Argyll in Lochgilphead will now be able to take its services to less accessible parts of Argyll, where people can be particularly isolated. Nobody with MS or another long-term condition should feel cut off or lonely, no matter where they live. Over the next three years the centre will extend its outreach programme to Islay and Jura, upholding our vision of accessibility and affordability.
"MSTC Lothian will work in partnership with KICC, who train specialist tutors to provide adapted therapeutic exercise classes in local facilities; these activities are notably successful in uplifting the physical and mental health of people with MS."
Neil is also a Trustee of the MS Support Centre in Chester, whose outreach service is already established. John and Eileen Lewis’s 80-mile round trip to attend the Centre’s exercise classes has been eliminated by the provision of sessions closer to home.
John Lewis said:
"Eileen feels that she is a whole lot fitter thanks to the physio sessions. The level of attention is exemplary and is directed to each patient’s needs at the time. Eileen has been guided when she has a particular problem and has been given advice as to how to cope with any issues at home. This ensures that, if the MS is not going to go away, then it is, at least, being given a good run for its money!
"One knock-on benefit has been the friendships that have formed within the group. Coffee and a chat is a must after each session and, purely from a psychological standpoint, this has been a wonderful, unofficial development of the project."
NOTES TO EDITORS
- For details of the specific funding awards, please contact:
- MS Centre Mid-Argyll: Karen McCurry, 01546 606 303
- MSTC Lothian: Nancy Campbell, 0131 554 5348
- For information on the Self-Management Impact Fund, which is administered on behalf of the Scottish Government by the Health and Social Care Alliance Scotland, please call the Alliance directly on 0141 404 0231.
- MSTC Lothian and MS Centre Mid-Argyll are based in Edinburgh and Lochgilphead respectively. All the UK MSTCs are autonomous, independent charities, which are entirely dependent on donations, grants and fundraising. They employ a small staff body, but rely heavily on volunteers to help provide the therapies they offer. Most Centres are members of MS National Therapy Centres, a UK-wide umbrella charity, which provides them with a common voice and, crucially, sets the standard for Oxygen Treatment, working in conjunction with medical professionals. All Centres welcome direct enquiries about their work. For locations and contact details see www.msntc.org.uk.
- Around 100,000 people in the UK have MS, and the symptoms and severity of the condition are variable. MS is normally diagnosed between the ages of 20 and 40 and affects twice as many women than men; it is also more prevalent in Scotland than in the rest of the UK. More than 15,000 people visit MSTCs each week.
- The KICC (Keeping Fit with a Chronic Condition) model of yoga and Pilates exercise classes for people living with long-term health conditions has been running as a small voluntary group in East Lothian and Midlothian since 2009. It was set up by a group of self-managers who were unable to access appropriate therapeutic exercise. Specialist tutors were employed to provide local adapted classes, which allowed the group to remain physically active, practising self-management with dignity in the local community.
Vote for your top research questions
At the end of last year the MS Research Priority Setting Partnership was formed to find the top 10 unanswered research questions in MS - giving people affected by and involved with the treatment of MS a voice in setting priorities for MS research.
After canvassing the views of the MS community, the Partnership has developed an impressive list of research questions that need prioritising. There are over 60 topics which have been identified. Tell us now which questions you think should be prioritised for research. The most voted for questions will go forward to a workshop and narrowed down to the top 10.
If you have MS, are personally affected by MS or work in MS healthcare – please have your say and vote!
You can vote online – just follow the on screen instructions and don't forget that you can also volunteer for the workshop in London on Friday 12 July when the results of the voting will be finally prioritised into the “top ten” topics. The survey will remain open until Friday 24 May 2013.
To vote by post please contact Mital Patel on firstname.lastname@example.org
This partnership is supported by the MS Society, James Lind Alliance, UK MS Specialist Nurses Association, MS National Therapy Centres and Association of British Neurologists.
Link to survey: https://www.surveymonkey.com/s/K9JZSV3
Link to JLA page: http://www.mssociety.org.uk/JLA
Setting MS Research Priorities
The MS Priority Setting Partnership
MSNTC is working with the MS Society in a project to put people with MS at the centre of setting research priorities. It is crucial that research into MS answers the questions that are most important to people affected by MS. This project aims to find the top 10 unanswered questions in MS research.
Help us prioritise future MS research:
CharityWise - a new resource for Centres
CharityWise is a new set of learning materials from the Open University (OU), designed to provide free, flexible resources for training and development for those working in the voluntary sector. CharityWise is aimed at trustees and committee members, managers, trainers and advisers in the voluntary sector. The Swindon MS Therapy Centre has helped the OU to develop these materials so they should be useful for other Centres.
The learning materials are available online at www.open.ac.uk/blogs/CharityWise. CharityWise can help you meet the National Occupational Standards for Trustees and the site includes links to other free online materials and sources of information and support.