Smart News Winter 2007

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”.

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