Issue 21 Winter 2007

MSA

SThe newsletMter of the Sarah Maatheson TrustrNNNeeeTwwwsss S

Contents From the Office MSA Petition 1 elcome to the long awaited SMarT news. I am told that an apology is not the best Sign our member’s petition to raise Wway to engage readers however I offer one here for the delay in getting the MSA awareness newsletter to you, in the hope that the content will make the wait worthwhile. There have Message from 2 been several staff changes in the office which have contributed to the delay. This is Trustees unavoidable with an office in the centre of London but is resolving even as you read. This edition has a focus on health and disability information. Information is Carers 3 important in helping people learn about, cope and adapt to any medical diagnosis but the advent of the internet means that people can experience ‘information overload’. Our Information about the ‘New Deal feature article, Finding Information, written by Bridget McCall a health journalist and for Carers’ long time supporter of the Trust, looks at sources of information Finding Information 4 useful to our readers and suggests ways to tell if its valid, good Bridget McCall highlights sources quality or reliable information. You can reread the SMT of general health and disability information with Bridget’s advice in mind and see how we information and gives tips on measure up. If you have any suggestions, comments or even how you can tell if its good criticism about the information let us know as feedback is a quality information. good way to improve our service. The blue and orange booklet a ‘Guide to MSA’ was Regional Support 8 originally written for people with MSA and their families but News from the groups in health professionals really appear to like it. It seems that Nottingham, Essex, Cornwall & even health professionals are at risk of ‘information Devon, Yorkshire and Merseyside overload’ and the guide helps prevent this. It does contain a Fundraising 10 lot of information but it is easy to access and can be read in sections. Informed health professionals provide better care which is what we all want. With this in mind the guide Find out what have members is available to all health professionals free of charge. Encourage anyone involved in your been doing to raise funds. care to have a copy. They can contact the SMT office to get the guide and other Gift Aid 12 information free of charge or you can request extra copies to give out. Catherine Best, Nurse Specialist A boon to our finances How to get involved 12 Government Petition

y husband Christopher was frequently crops up in conversation is The Sarah Matheson Trust Mdiagnosed with MSA in Dec. how rare this illness is and more provides a support and 2005 having first been diagnosed with importantly the lack of knowledge information service to people PD in Feb 2005. Through a meeting in that hospitals and GP surgeries have with Multiple System Atrophy Liverpool recently organised by about it. I'm sure you know that it is (MSA) and other autonomic Catherine Best we were able to meet up distressing for families that a loved disorders, their families and with one or two other people with MSA. one has to be admitted to hospital to carers, health care professionals Being able to talk to others be met with blank faces and little and social care teams. affected by this dreadful illness has support. Continued on Page 2 We also sponsor and support helped enormously but one thing that research into MSA News

Continued from Page 1 Message from the Trustees I have set up an E-Petition on the 10 Downing St website which is o All Our Readers: We apologise Catherine’s contribution to the Trust petitioning the Prime Minister to Tfor the long delay in getting out this has been invaluable and she will be create awareness in all hospitals latest edition of SMarT news. We have much missed. We are in the process of and GP surgeries about MSA. The had a number of staff changes in the recruiting a replacement. In the petition is running until April 2008. office in recent months and this has meantime the office will be manned, The petition which reads, ‘We the resulted in some disruption to the part-time but very ably, by Linda undersigned petition the Prime normal level of service we try to Campbell, a long time friend and Minister to Create awareness in all provide to all of you. supporter who has served as our office NHS hospitals and GP surgeries We greatly regret this and hope to be administrator in the past. We welcome about the debilitating neurological back up to speed soon. Sadly we are her back and thank you for all your disease Multiple System Atrophy’ losing our long serving Nurse Specialist patience and understanding as we can be found at: http:// Catherine Best, who is moving on to a rebuild our team. petitions.pm.gov.uk/Neurological/ post in full time patient care at the Eileen Strathnaver, National Hospital for Neurology. Chair of Trustees Carers

Our sympathies scientists of his generation. He was best known for his work on he Trust is deeply saddened by myasthenia gravis and related diseases T the death of one of our Medical but became involved in the Sarah Advisor Panel members Professor Matheson Trust when a family John Michael Newsom-Davis in a member was diagnosed with MSA. road accident in August. His great neurological knowledge and Professor Newsom-Davis was a experience coupled with his respected neurologist and pioneer of enthusiasm for research were a neuroimmunology. He was Professor wonderful combination to the advisory Our own GP Rob Caudwell has of clinical neurology at Oxford (1987- panel and will be greatly missed. signed it. I have contacted my local 98) and one of the most distinguished Our deepest sympathies are MP John Pugh and he has agreed to clinical neurologists and medical extended to John's family. sign it. Chris's daughter Catherine has been in touch with her MP A Strange Experience my shoe. It was a SMT lapel badge! Mike Wood and he in turn has As we all know SMT is a relatively written to the Secretary of State. If ave any of you been to Geneva small organization so what were the odds we get enough signatures we might Hlately? There is a good reason for of me stepping on that particular step, on be heard! asking this seemingly strange question. that particular escalator and finding a We do feel that support is My wonderful husband Donald died in SMT badge in a store in Switzerland growing and I would be delighted if June 2006 after being in palliative exactly six months since Donald had Sarah Matheson Trust members care for almost two years and died? Needless to say we were all sign the petition. You all know as a family we are very strong quite emotional and had to have about this illness and how supporters of the Trust and I some moments to come to debilitating it is and how difficult it always try to wear the Sarah terms with what we found. I is for families who are directly Matheson Trust (SMT) badge. like to think that Donald was affected by it. In December 2006 I went to with me in the store thinking ‘what Christopher and I can't make a Geneva with two friends for a weekend is she going to buy now!’ difference on our own but we both break. On our last morning we went into So if you have been to Geneva and feel that this is the best way we can the main store, Globus, and decided to lost your badge, rest assured that it has create awareness about it. Thanking start at the top and work our way been found. It is good to know that you all in anticipation. down. On the last escalator I felt other people are wearing badges and Karen Haigh something under my foot. When we got supporting what is a fantastic charity. to the top we examined what I felt under Ann McLennan

2 SMarT News – The newsletter of the Sarah Matheson Trust Carers

New Deal for Carers what ‘interventions’ would help a person back to work. The mental health part of the assessment has been he government has announced a Employment and Support Allowance extensively revised to make it more like T£33 million package of support and (ESA) the physical health assessment. The services for carers in England as part of ESA is the new benefit which will claimant will need to score 15 points on a commitment to updating and replace Incapacity Benefit and Income either physical health or mental health extending the National Carers Strategy. Support (for incapacity) for new claims grounds in order to be found incapable The package, which has been labeled from November 2008. It will have of work. There are a few circumstances the 'New Deal for Carers', consists of contributory and means tested parts. where a claimant will be treated as three parts: People will be able to claim on the having limited capability for work, but • £25 million for local authorities to basis of their National Insurance there are no plans to exempt people spend on providing short-term home contributions, on low income grounds from the new PCA. The second part of based respite care for carers in crisis or both. Currently, in order to claim a the new PCA assesses whether a or emergency situations; benefit through the ‘incapacity route’ a claimant has “limited capability for • £3 million to set up a national claimant must satisfy the Dept for work related activity” due to “a severe helpline for carers; Work and Pensions that s/he is level of functional limitation”. Some • £5 million for an Expert Carers incapable of working. Most people claimants will be treated as falling into Programme to provide training for have to do this by satisfying either the this group because of their condition. carers in how to better manage both Own Occupation test or the Personal Claimants who pass this part of the their own health and that of the people Capability Assessment. new PCA will get the additional support they care for. component. Claimants who are assessed How will the ESA work? as being capable of work related activity Welfare Reform All new claimants from November will get ESA with the work related Part of the government’s welfare 2008 will have to apply for ESA instead activity component. Claimants aged 18+ reforms planned for November 2008 of Incapacity Benefit or Income in this group are also subject to the third involves changes to Incapacity Benefit Support (for incapacity). The basic rate part of the new PCA which is the and Income Support (for of the allowance, which is requirement to attend a work focused incapacity for work). As equivalent to Job Seekers health related assessment. many carers receive these Allowance, will be paid for Warning! In all cases, failure to benefits in their own right you up to 13 weeks. During this attend an assessment without good may have concerns about the time the claimant will attend a cause may lead to benefit being stopped changes. The following work-focused interview and or reduced. information may answer go through a revised version some of your questions but if of the Personal Capability This information was written by you find you need further Assessment. Claimants Newcastle Welfare Rights Service and was included in the Autumn Carers help please see the ‘How to assessed as being capable of Newsletter produced by the Newcastle find out more’ section at the end of this ‘work related activity’ will then receive Carers Center. To find out more about article. an additional component as long as they the center, its range of services or to get comply with certain conditions. Some a copy of their newsletter please I already get Incapacity Benefit. people with severe disabilities will get a contact: What will happen to me in 2008? different additional component with no Carers Centre Newcastle, 6 Saville Place, Newcastle upon Tyne NE1 8DQ. Those already getting Incapacity conditions attached. Some claimants Telephone 0191 260 3030 Benefit and or Income Support (for will get extra amounts paid with their Fax 0191 230 150 incapacity) will remain on those ESA if they get Disability Living Email:CarersCentreNewcastle@ benefits. However, it looks as if Allowance or Attendance Allowance. btconnect.com existing claimants will eventually be Web:www.newcastlecarers.org.uk transferred onto a new allowance called What is the revised Personal For other information about the New Deal for Carers or benefit changes Employment and Support Allowance. Capability Assessment (PCA)? please contact www.direct.gov.uk or the The time scales for when this will The new PCA has been redesigned to National Benefits helpline 0800 882200 happen have not been announced yet. look more at what a person can do and

SMarT News – The newsletter of the Sarah Matheson Trust 3 Feature Finding and Assessing

Bridget McCall highlights some general health and disability information sources and discuss the issue of medical information in the media and how you can best identify valid materials.

hen you are living with MSA, information about health services or of those that concentrate on specific Whaving appropriate information conditions, you can phone their 24-hour medical conditions, there are many that on areas of health and care that affect nurse-led telephone information service focus more generally on health and you can make a big difference to you for advice. Local rate charges apply. If disability that may be able to provide ability to cope. This might include you live in Scotland, there is a similar you with the support and advice you resources on: service, NHS24 . The NHS Direct need. Examples include those • The nature of MSA, its treatment and website is also a useful resource for concerned with: management information on health conditions and • Ageing , such as Age Concern • Services available to help you issues – www.nhsdirect.co.uk. (www.ace.org.uk), Help the Aged • Self-help strategies On a local level, all primary care (www.helptheaged.org.uk), Counsel & • Useful organisations trusts have Patient Advice and Liaison Care (www.counselandcare.org.uk) • Family support Services (PALS). These aim to: • Disability issues such as equipment • Research. • Provide you with help and and rehabilitation, including the Finding the right resources is often a information on local health care Disabled Living Foundation matter of identifying what you need, services and support agencies (www.dlf.org.uk) and the Royal what is available from where and how • Offer practical advice to help resolve Association for Disability and to access it. Although we hope that the difficulties that you may have when Rehabilitation (RADAR – Sarah Matheson Trust has in the last ten using any NHS services or if you www.radar.org.uk) years made the search for MSA don’t know how to access them • Carers organisations like Carers information less difficult, locating • Give you a say in your own care and UK (www.carersuk.org), Princess materials on wider health and care how your local services operate. Royal Trust for Carers issues tends to be very variable. Your local primary care trust, GP (www.carers.org) and Crossroads – Sometimes it isn’t that there is a dearth surgery or hospital should be able to Caring for Carers of information, especially now the provide you with contact details for (www.crossroads.org.uk). Internet has made huge amounts of your local PALS. Citizens Advice help people resolve material available to anyone with their legal, financial and other problems access to a computer. Instead the Voluntary organisations by providing information and advice problem is sifting through it and The Sarah Matheson Trust is one of an free of charge. They can also signpost determining what is accurate, up-to- enormous number of UK voluntary you to other sources of local and date, evidence-based information and organisations that cater for a very broad national help. They provide what is suspect. range of need and interests. They usually independent advice from over 3,000 operate independently from government locations including bureaux, GP General sources of information or business on a self-governing, self- surgeries, hospitals, colleges, prisons Healthcare funding (through donations and and courts. This can provided face-to- The NHS has an information service fundraising initiatives) and not-for-profit face or by telephone. Most also offer for patients in England, Northern basis. Although many have paid staff, home visits where necessary and some Ireland and Wales called NHS Direct . they often rely heavily on volunteers to also have email services. They also If you are a member of your family fall help them run their activities. have an Internet advice guide ill or you want some general It is worth remembering that as well (www.adviceguide.org.uk), which

4 SMarT News – The newsletter of the Sarah Matheson Trust Feature Information

includes frequently asked questions in a Tips for assessing medical/health number of community languages. The number of your local bureau should be information you find in the phone directory or available from You may find it helpful to use the following checklist when assessing your library. You can also find them on any information you find on the Internet or anywhere else. the Citizens Advice website – • Who produced the information and why? www.citizensadvice.org.uk. Does the website clearly state its aims and objectives; who produces the If you want to locate voluntary information with details of their expertise and qualifications; charity organisations that may be able to help number (where appropriate); and contact details? Do they subscribe to you with particular needs, the National any codes of practice such as HON or DISCERN. Council for Voluntary Organisations • How current is the information? Is there a date provided so you can ensure the information is up-to- publishes the Voluntary Agencies date? Directory, an annual reference guide to • What sort of language is used? over 2000 national charities and Is the information balanced and unbiased or is it sensational and organisations connected to the emotional? voluntary sector (see www.ncvo- • What is the purpose of the information? vol.org.uk). See also Charity Choice Is it aimed at simply providing you with information or does the purpose published annually by Waterlow seem to be to encourage you to buy a product or service? Is the website Professional Publishing or available sponsored by particular commercial organisations. If so, does it seem online at www.charitychoice.co.uk. biased in favour of their merchandise? Patient UK is useful online resource • What evidence is it based on and does it clearly state this? produced by Drs Tim and Beverley For scientific research double-blinded randomised controlled trials are Kenny, two GPs who work in Tyne and the gold standard. They should also be published in peer-reviewed Wear in England. This evidence-based journals (i.e. where the quality of the research has been assessed before publication). website provides a wealth of Personal (sometimes called anecdotal) experience can be very information on health conditions, valuable especially in providing opportunities for exchanging ideas maintaining a healthy lifestyle and and providing mutual support but should not be used by itself as contact details for many voluntary ‘proof’ that a product works. It is important that websites make it clear organisations. See www.patient.co.uk when information is based solely on this. Remember that medical conditions often affect people differently so your experience may be Health information and very different from someone else’s. the media • Is the information from the UK or abroad? Health and science articles are Information from other countries can be very interesting but may not be extremely popular media items. As relevant to the UK. Drug names and other details may also differ. wonderful as it is to have so much • Check anything you are concerned about with your doctor. information at your fingertips, this If you want to try a complementary therapy, check with them that there availability has created a new problem are no contraindications between this and any treatments that you are already receiving. in its wake. Although lots of publications and websites provide excellent material, many others contain interesting area of health has many “research has proved their efficacy”. questionable material or make dubious, genuine practitioners and valid Even if this is true, there are different but persuasive, claims. disciplines, but also attracts people levels of research and sometimes the This situation is exacerbated by the peddling all sorts of “miracle cures”. ‘proof’ is based on very flimsy or fact that we now live in a ‘new age’ that Many of these are marketed in a way questionable standards. Providing a has resulted in a huge interest in that makes them seem more credible long list of references is no guarantee of complementary therapies. This than they are, often making claims that quality!

SMarT News – The newsletter of the Sarah Matheson Trust 5 Feature

A study by Dr Katja Schmidt and What are complementary therapies? Professor Edzard Ernst at the Peninsula Complementary therapies are non- herbal medicines is that they have not School of Medicine at Exeter conventional health treatments, often been subject to rigorous scientific University demonstrated how faulty the based on ancient systems, which may research and are not at present subject advice and claims made for some be used in addition to conventional to any government medical control, products can be. They analysed 32 medicine. Examples include although regulation of the profession popular websites that give advice and acupuncture, the Alexander is now in progress. Herbal medicines information on various complementary technique, aromatherapy, ayurveda, are commonly marketed in a variety of therapies used to treat cancer and found creative therapies (involving art, music, formulations that will have different that a significant amount of these were dance or drama), chiropractic, types and amounts of active a risk to people with the condition. Out conductive education, herbal ingredients. A licensed drug, on the of 118 cancer ‘cures’ of a medicine, homeopathy, osteopathy, other hand, has to go through an complementary therapy nature that Pilates, reflexology, tai chi, and yoga. extensive series of trials before it will were recommended on these sites, none be given its licence to ensure that it is could be demonstrated to cure cancer Why are they so popular? safe and effective and to ascertain and some of the advice offered was Complementary therapies are what side-effects there may be. The potentially harmful. However, two particularly popular among people drug will be quality controlled in the sources of excellent information on who have long-term conditions, such sense that the exact active agents and complementary therapy research were as MSA and Parkinson’s disease. This is amounts of these will be specified so identified – Bandolier and partly because although conventional that ingredients of a drug are known. Quackwatch . medicine can provide good symptom Another reason for the popularity Bandolier is an independent journal relief, it does not always provide all of complementary therapies is that and website about evidence-based the answer. Most people want to do all people like the holistic approach many healthcare written by Oxford scientists. they can to help themselves and turn adopt, i.e. one that treats patients as a On their website, they say that to complementary therapies as a whole, not only treating the disease “the impetus behind Bandolier was possible solution to their difficulties. but also taking into account the to find information about evidence Sometimes people also become person’s physical and mental state as of effectiveness (or lack of it), and disillusioned with mainstream well as their social background. put the results forward as simple medicine, while others are simply bullet points of those that worked and reluctant to take drugs and view What do ‘conventional’ medical those that did not: a bandolier with complementary therapies, especially practitioners think of them? bullets”. For more information see herbal medicines, as a more ‘natural’ The division between orthodox www.jr2.ox.ac.uk/bandolier option. This latter point is debatable as medicine and complementary Quackwatch is a non-profit many conventional medications are therapies has become more blurred organisation, run by Stephen Barrett plant-based. Even when they are over the past few years. Some who is a retired doctor. Based in the synthetic, this does not mean that they complementary therapies now have USA, it has an international focus and are inferior. The problem with many well established uses in mainstream attempts to “combat health-related frauds, myths, fads, and fallacies”. See www.quackwatch.org The British Medical Association people and healthcare professionals to See the panel for more information (BMA) publishes a guide to ‘Finding find reliable online health information. about complementary therapies. reliable health information on the Many health websites carry the HON internet’ on its website – see quality mark given to sites that follow Other guides to medical www.bma.org.uk/ap.nsf/Content/health their guidelines – see www.hon.ch. information in the media infonet. This provides some guidelines The British Medical Journal In recent years the issue of medical and references to other sources that (BMJ) has also recently launched a information and the media has attracted provide guidance on searching for website called Best Treatments that considerable concern from a number of health information. These include the aims to provide evidence-based organisations and individuals who have Health on the Net Foundation (HON), a information to lay people – see developed resources to help the general not-for-profit organisation, based in www.besttreatments.co.uk public. Switzerland, which seeks to help lay Contact a Family is a UK voluntary

6 SMarT News – The newsletter of the Sarah Matheson Trust Feature

Recommended reading A good general book on this • medicine – for instance various therapist you use is properly trained and subject is The Patient’s therapies are used for pain relief and affiliated to a recognised regulating Internet Handbook by Robert creative therapies are often employed professional body for the complementary Kiley and Elizabeth Graham, 2001, Royal Society of in psychiatry. Some conventional therapy discipline in question. Medicine health practitioners also train in (ISBN: 978-1853154980) complementary therapy techniques. As What research is available for • People who are interested in a result of this crossover between the their effectiveness with MSA? reading research papers may two, the term ‘integrated medicine’ is Although some people with MSA can also be interested in How to increasingly used to mean, provide anecdotal accounts of the use read a paper: the basics of ‘conventional and complementary of complementary therapies, we are evidence-based medicine approaches form parts of the one not aware of any research evidence (3rd revised edition) by process’. specifically about their use with people Trisha Greenhalgh, 2006, Blackwell Publishing In general doctors are more open with MSA. There has been some to the idea of complementary limited research in Parkinson’s disease (ISBN: 978-1405139762). medicine that they used to be, – see the Parkinson’s Disease Society especially if it is ‘integrated’. However booklet Complementary Therapies and own website, www.badscience.net A many still have reservations because Parkinson’s (see www.parkinsons.org.uk). book Bad Science will be published in few of the therapies used have been June 2007 by Fourth Estate (ISBN: the subject of rigorous scientific Where can I find more 978-000724019). research and only two (chiropractic information? DISCERN is “a brief questionnaire and osteopathy) are regulated Organisations such as the Institute which has been developed to provide through government legislation. for Complementary Therapies users of health information with a valid However, a recent House of Lords (www.i-c-m.org.uk) and the British and reliable way of assessing the Science & Technology Committee Complementary Medicine Association quality of written information on report recommended that several (www.bcma.co.uk) can provide you treatment choices for a health problem. others should also be regulated, with more information and details of It can also be used by authors and especially acupuncture and herbal professional organisations for the publishers of information on treatment medicine. The regulation of these two different types of complementary choices as a guide to the standard which therapies is now in progress and it is therapies. Your GP surgery may also be users are entitled to expect”. An likely that other forms will follow suit. able to provide you with details of Internet version is also being Complementary therapies should local practitioners. The Research developed. The project is based in always be used in addition to Council for Complementary Medicine Division of Public Health and Primary conventional medicine not instead of it. (www.rccm.org.uk) can also provide Health Care, Institute of Health If you are thinking of trying you with more information on Sciences, University of Oxford. See complementary therapies, discuss this research into complementary www.discern.org.uk for more further with your doctor. Make sure the therapies in general. information.

REFERENCES organisation that helps families with research and how you can ask questions 1. Schmidt K, Ernst E. Assessing disabled children. It has produced a of the science information presented to websites on complementary and good article on ‘Medical Information you. See www.senseaboutscience.org alternative medicine for cancer. Ann on the Internet; Seeking Quality’. See Bad Science is an entertaining and of Oncol 2004; 15 (5): 733-42. 2. Definition taken from DISCERN www.cafamily.org.uk/info.html illuminating weekly column, published website, www.discern.org.uk Sense About Science is an in the Guardian newspaper, written by independent charitable trust promoting Ben Goldacre – a medical doctor Acknowledgement good science and evidence in public working in the NHS. This focuses on This checklist has been compiled using information in Finding medical debates publishes a useful leaflet, I debunking scientific inaccuracy, information on the internet by don’t know what to believe…making quackery and pseudoscience. You can Contact a Family and Making Sense sense of science stories, which explains read the columns on The Guardian’s of Science Stories by Sense About Science. how scientists present and judge website (www.guardian.co.uk) or his

SMarT News – The newsletter of the Sarah Matheson Trust 7 Regional Support

Essex

Monday April 2nd 2007 was a To anyone thinking of starting a beautiful, sunny, spring day as we support group – DO IT travelled from our home in Harlow to the SMT Essex Support Group Our connection with SMT was meeting in Little Tey, Colchester. The through my sister Juliet Price who day became even better when we died in 1997 just as the Trust was arrived at the village hall and were being set up. However it was not welcomed by two very special until 2004 before we were people, Laurelie and Bay Laurie who approached and asked if we would run the Essex Group. be prepared to organise an Essex My husband, David, has MSA Support Group on the lines of the problems, specialists, grandchildren, and when we were first invited to one which Elizabeth Brackenbury, holidays etc. but most of all it is to attend the meeting two years ago we Sarah Matheson’s sister started in meet people with similar problems were very apprehensive. We had Nottingham and which has proved a and to exchange experiences. never met anyone else who had MSA great success. The group is well supported by and were, if we are honest, a little Our first meeting was with only the SMT and the last time we met afraid. Our fears were unfounded, 8 people including Alison and Linda Catherine came down from London everyone was so kind and it was from the London office and as it was and it was a great opportunity for us really good to share experiences, a lovely day, we had tea in our to meet her. At the moment, I believe exchange ideas and find out how garden. We have grown since then that there are only 3 or 4 other MSA affected other people’s lives. and we now have about 20 people Support groups in the UK and that is The meetings are very informal, more twice a year in our village hall. The not enough. They are so appreciated of a “get together”. As they are only benefit to all far outweighs the time by all who come that I would twice yearly there is always a lot of spent by us with 2 or 3 wonderful strongly recommend other areas to catching up to do. We have a lovely helpers to provide a simple lunch start a group. They fill a great need lunch and some friends from the and plenty of tea and coffee. and give a lot of satisfaction to all village tend to our every need. You We are now a group of concerned. share time with people who know FRIENDS with new ones joining at Laurelie and Bay Laurie – exactly what living with MSA really every get together. Talk is of Essex Group Organisers entails. No one is embarrassed; if you have a problem speaking clearly is being carried out, answered our attend them. probably the person sitting next to questions and asked us our opinions on The best part of the meeting you does too. the support group meetings. It was so (apart from Sue’s meringues) - WE At this meeting we were lucky to interesting that the meeting overran by LAUGH! It is good to know that have Catherine Best, the SMT nurse an hour. It is such a pity that more of with all the trials that MSA brings we specialist at our meeting. She talked these groups are not set up around the all still have a sense of humour. to us abut MSA and the research that country, we would encourage anyone to Christine Mead Nottingham understands how MSA can affect The Nottingham Support a person and family. This Group was our first regional experience and her warm nature group and was set up by Sarah mean that everyone who comes Matheson’s sister, Elizabeth to the Nottingham group gets a Brackenbury, although it is a wonderful welcome from family affair with Elizabeth’s Elizabeth and is soon at ease. husband Robin and son Robert Members of this group become both very involved. Sarah friends as they chat and listen to lived in London when she was each other. New members can diagnosed with MSA but came to live means that Elizabeth has first hand look forward to this and are always with Elizabeth in Nottingham. This experience caring for someone and welcome.

8 SMarT News – The newsletter of the Sarah Matheson Trust Regional Support

Cornwall & Devon to keep MSA under control. Our First Meeting Report • The standard of knowledge of The Cornwall and Devon Support healthcare professionals about MSA Group was formed in October 2006 at and related neurological disorders is an open meeting hosted by Catherine very variable. We were pleased to Best from SMT. After a number of note that many professionals, even at telephone discussions, we arranged our consultant level, admit their lack of new faces to our group. first independent meeting near knowledge and in some cases There was some talk about the Tavistock, West Devon on 8th February allowed the sufferer to lead the (American) National Institute of 2007 and 8 SMT members attended discussions. We were not so pleased Neurological Disorders web page and with a further 3 phoning in their to note that some neurology similar web pages. We will be making a apologies because of the snow which consultants in our area refused to commented list of all the web sites we arrived that morning. admit the existence of MSA. can find and seem to be useful. This will The meeting was a lively • Cornwall and Devon is a very big be circulated to our local members, if unstructured discussion around MSA, area which means our meetings will anyone else would like a copy, please its diagnosis and the people responsible always involve long travelling email or phone me (Peter Padmore, for making that diagnosis. A number of distances. Whilst we would keep the [email protected] or 01822 870642). key issues were discussed in depth: 2 counties approach, we would like Peter Padmore – • We believe there may be some form to split into much smaller areas for Cornwall and Devon Organiser of early trigger which starts a patient informal meetings. To be successful Ed Since these meetings Peter had down the MSA route many years we do therefore need more been very active in organising further before diagnosis. All those sufferers members, so would ask everyone meetings with the help of his harem of present reported one or more reading this to promote our group to helpers Liz, Jan and Jane. He has also symptoms which started in a minor your friends and colleagues. been writing and producing several way with a memorable event earlier Early in May we had our second local newsletters and journal articles in the sufferer’s life and developed meeting, this time in the New Memorial and speaking to groups of health into one of the standard symptoms of Hall in Summercourt, near Bodmin. professionals about the diagnosis and MSA. This idea is suggested as the Despite the weather (heavy mist and rain impact of MSA including those at the basis of some research amongst a this time), 6 people attended including 2 SMT awareness day in September . wider population of sufferers. Yorkshire • We suggest to all carers and again and I have said I will try to find a professionals that they should keep Just thought I would let you know how venue that is perhaps a little more saying “Stand up STRAIGHT” or things went at the first Yorkshire support accessible (e.g. just off the A1), travelling “Sit UP” to remind their sufferers of group meeting. into Bradford proved a little arduous for the need to maintain a good posture. We had three couples who came some, and to set a date in early (Ed - do this with caution if you along and one who had hoped to come, November. Karen Walker, have postural hypotension ) but when I arrived home, she had sent an Yorkshire Group Organiser • The free NHS Expert Patients email to apologise that the day had been Ed Since then Yorkshire have had Programme should be promoted to a bad one and she just hadn’t been able to another successful meeting which will sufferers at every opportunity. This face it. Another couple who had hoped to be in the next SMarT news. is a programme of six 2-hour come had put on the bottom of their reply Merseyside sessions which teaches the patient that they were awaiting news of their first how to set (and try to keep) daily grandchild and that might prevent them Ann McLennan arranged the very first objectives within their capabilities from coming along, so I am assuming meeting of this group for Dec 6th. Held and to think positively. Regular daily they became grandparents on or around at the SMT office we know it was a exercise, such as dog walking, was that day and couldn’t come. So not too success and send Ann and her helpers also highly recommended by all bad a start for the group. all our best wishes and look forward to present as one of the best treatments Everyone seemed very keen to meet getting a report on the day. The regional support groups clearly play an important part in reducing the isolation felt by having an unusual disorder like MSA. If you would like further details of any of the local groups or would be interested in setting up a group in your area please contact the office. We can provide information, practical help and financial support to start new groups.

SMarT News – The newsletter of the Sarah Matheson Trust 9 Fundraising

The trust is amazed, astounded and always appreciative of the efforts of our members and their families in fundraising. Here are some of their achievements.

Card makers people in the property, legal and Christine Fowler has been hand architectural professions and was a making cards for the Trust for several great success, raising more than years now and has raised over £400. £50,000 on the night. People were most Christine is grateful to Julie at 'Arrochar generous in their giving in praise of the Flowers' in Argyll who sells the cards in artists, the Katzenjammer piano duo, her shop and does not take any profit. and Rebecca Carrington, a cellist with a Some of our members will have seen Sharon, Val, Catherine, Nicole & Family difference. It is fair to say that, had Christine’s cards at awareness days and Margaret been there, she too would will know how beautiful they are. these wonderful daughters in person. have had a great time! Catherine Griffiths-Carroll Catherine also had the opportunity to Personally I am very pleased to have exceeded her target of making 100 catch up with Diane Collister. Nearly been given the opportunity to support cards which raised £125. She says that 10 years ago Helen who was a social the Trust in this way and it is my hope, ‘It has really helped me to focus on my worker bought a lady with MSA to father's death. Good luck with all your London where they met Catherine. work.’ Margaret’s Dinner A Hairy Story Margaret Watson suffered from MSA Sharon & Nicola Foulis who live which took her life but as the generous Ramsey in the Isle of Man decided that lady she was, she donated her brain and a dramatic approach was needed for spinal cord for medical research in the their fundraising activities and decided full knowledge no benefit would accrue on a hair style with a difference. Both to her but with the strong belief it might girls shaved their heads! Local benefit others. A statement which I Margaret Watson hairdressers Carl found impressive and thought and Alison from provoking! as it was Margaret’s that some good KD hair Salon Some years before she died I was research will be done which may lead to agreeds Kai, to made to promise I would raise money a much netter understanding of the wield their for SMT, specifically for research into condition, benefiting others in the scissors and the MSA, as she wished to do something future. Michael Watson Ellan Vannin for the benefit of others. This was a Runners and Riders pub on the challenge I accepted gladly, because it Sharon & Nicola quayside in gave me an opportunity to do Paul Stephens (below) completed the Ramsey turned something for the Trust to and at the Bath half marathon and raised over the deed into an event by letting the same time say, in my own way, a big £2000 which is an amazing amount. girls have their head shaves in front of thank you to her for all the generosity an audience. she displayed during our marriage. The sisters, who’s Mum Maggie has So it was on Friday 20th April I held MSA, decided to shave their shoulder Margaret’s Dinner, a night of length hair to raise funds and awareness entertainment and fun in Edinburgh for MSA. They raised an impressive with the specific purpose of raising £3100. Catherine Best, nurse specialist money for the Trust, to conduct the travelled to the Isle of Man to meet Val research as she wished. The dinner was and the Parkinson’s disease Nurse different in that the only speech was Specialist for the island and was able to mine in opening the proceedings but collect the cheque from Sharon and was otherwise to be a night of fun. It Nicola and to congratulate and thank was well attended, principally by

10 SMarT News – The newsletter of the Sarah Matheson Trust Fundraising

Scottish Madness so much for us. One of our runners, Ian Filby , was Ann McLennan and injured just a couple of weeks before her children Ross and the event, but signed up for the Sally incorporated the Nottingham marathon in September so SMT initials into their that the money raised would still come night of Scottish to us. Madness To remember Runners’ times: Donald. Held in a hotel in Simon Prower (left) on the London to Allan Comette 5 hours 07 minutes Brighton Bike ride Southport, this energetic Michael Gill 4 hours 40 minutes evening of great Scottish Gina Grasso 6 hours 06 minutes Simon Prower raised over £400 in traditions like eating Jeremy McGivern 4 hours 16 minutes 2 cycle rides in June. He wanted to drinking and dancing raised say…. For anybody interested in running over £2500. It was such a ‘A huge THANK YOU to all of you for the Sarah Matheson Trust next year, success that the McLennan’s are doing who sponsored me for my 2 bike rides. the Flora London Marathon takes place it all again next march. This is one kind The 54-mile London-Brighton bike ride on Sunday 13th April 2008. Please let of madness that everyone should have. (plus another 6 miles to and from the the office know whether you have been SMT in Schools start and finish) with 3 of my former successful in obtaining a place – all colleagues from Etihad, and another 35 entrants will be informed in early Several schools miles the following week on the December. We also have a small who have a Horsham cycle. We had a great time amount of Golden Bond places which pupil or staff amongst a great crowd of fellow can be shared between some of the member that competitors, in a fantastic and fun unsuccessful applicants, though we know someone atmosphere.’ cannot guarantee everyone a place. with MSA have Simon is the stepson of Ian Welsh Thank you again and we look raised money who is a SMT member. Both Ian & Sue forward to another fun day in 2008! for the Trust. Welsh are quite overcome and proud Donna Urshuline A huge cheque from that he chose to raise money for the Marcelle (left) College Northampton SMT. from Essex ran London raised the Brentwood £800 and Northampton School for A Huge Thank You to all our Mother half Girls who collected £400. Our thanks London Marathon Runners! marathon in to everyone involved at each school. Yet again, our London Marathon support of her Cycle to Cannes runners have managed to raise a Mum, Doreen wonderful amount of money for the Ellis, a SMT A distance of 1500km and four days of Trust. This year, the total amount raised member. As well as raising money grueling, round the clock exercise - this so far (with more still finding it’s way through sponsorship Donna made use is the challenge completed by a group to us) is over £20,000. We are very of a scheme at her work and her of architects and property professionals grateful to all those sore feet! After the employers matched her total which who cycled from London to MIPIM in long day in very hot conditions, most of meant Donna raised over £1500 Cannes. the runners managed to find their way Peter Murray, an ex SMT trustee Charity Concert to The Warwick pub nearby where a initiated the ride in 2006 and its success space had been reserved for the Trust. The Isle of Man has been very busy meant that it was repeated in 2007 but Hopefully the odd glass of liquid fundraising and making sure that all the in a bigger better fashion. The refreshment along with some delicious family get involved. Earlier readers challenge has been organised in aid of snacks went some way to ease the pain. learnt about Val’s daughters shaving the several charities; National Hospital The runners were joined by friends and their heads and Maggie’s husband for Neurology and Neurosurgery, family as well as some of the Trustees David organised a variety concert Architects for Aid, Tom ap Rhys Pryce and Catherine. It proved to be a lovely which raised £400. The whole island Memorial Trust and the Sarah afternoon and enabled the Trust to give must have heard about MSA now, well Matheson Trust. The SMT is very a little back to all our supporters who do done. grateful for the £55,000 received.

SMarT News – The newsletter of the Sarah Matheson Trust 11 Gift Aid — an unqualified success

MSA or the interest of readers I have the gift aid figures received by the Trust as Ffollows: for 12 months to July 2007 the sum produced by individual donors who have patiently filled in the relevant forms for return to the Trust, these being processed by the wonderful Liz Balmford so that the task of reclaiming the tax by Sarah Matheson Trust for Multiple System Atrophy me is no longer arduous, amounted to £8,384. On top of that a further £3,242 of gift aid was received from those donors using the Just Giving.com system. Information, Support, Education & These are extraordinary figures and underline the generosity of so many people Research in Multiple System Atrophy and other autonomic disorders. without whom the Trust would not exist. Even so and I certainly do not wish to appear to criticise, we could improve on these figures. The total received by way of Providing services to people with MSA, donations in recent years has averaged in excess of £100,000, including those from families, carers and professionals. Charitable Trusts where gift aid is not reclaimable. It is not possible to be precise; G Information leaflets and newsletters however I would hazard a guess by suggesting that between us we could double the G Specialist nurses gift aid figure without too much extra work. The forms are available in the office G Telephone advice line G Regional support meetings and don’t forget that if you are a top rate (40%) tax payer you can claim back 12% G Training and education sessions yourselves (28% having come to the trust via your tax return). G MSA research All of the above may seem as if we are less than grateful for the wonderful G Communication Aid Loans generosity of our donors. Far from it. We are shortly to pass the 10th anniversary of G Welfare Gift Scheme the formation of the Sarah Matheson Trust and this is entirely due to your support Patrons: and those who have sadly gone before. The Trustees join me in thanking all Sir Roger Bannister CBE FRCP concerned; it has been a privilege to be closely associated with the Trust throughout Professor CJ Mathias DPhil DSc FRCP its first decade. Val Fleming, Treasurer Trustees: Mrs Robin Brackenbury Linda Campbell Abbreviated Financial Statement Michael Evans for the year to 31st March 2007 Valentine Fleming £000’s Ms Darcy Hare Alexander Loehnis Income Christopher Marsden Donations 110 Geoffrey Murray Investments 13 Eileen Lady Strathnaver OBE Fundraising 49 Lady Harriot Tennant Total 172 All correspondence and enquiries to: Expenditure Sarah Matheson Trust Research Grants & patient welfare 27

Pickering Unit 3 7

Staff salaries 44 7

St Mary’s Hospital 8 8

Other various 4 8

Praed Street 6 8

London W2 1NY Total 75 0 2 0

020 7886 1520 n o n

020 7886 1540 (fax) Net income 97 i t r a www.msaweb.co.uk M l l

Total funds at 1st April 2006 270 a C

The Trust is financed entirely by . n g i

voluntary donations. s e

Balance at 1st April 2007 367 D

Registered Charity Number 1062308 Q N I y b d e

Membership Numbers t n i as of Nov 2007 Awareness Day dates for your diary r p d

Current MSA members 848 n a

Cornwall & Devon Support Meeting – January 2008 t Other patient members 42 u o

Aberdeen Awarness Day d Relatives & carers 398 – March 20008 i a l ,

Professionals 1332 Belfast Awarness Day – May 2008 d e n

All our members will automatically be notified of any Awareness Days held in g Others 151 i s e

their area; an invitation will be forthcoming once the date and details are fixed. D 12 SMarT News – The newsletter of the Sarah Matheson Trust