Issue 18 Spring 2005

MSA

SMarTThe newsletter of the Sarah Matheson Trust NewsNewsNews

From the SMT office Contents As the year moves on through Spring, we are happy to report the continued expansion of the SMT - both in membership numbers and in the growing awareness Understanding of our work. We are delighted also to see SMarT News going from strength to Palliative Care 2 strength and really appreciate the input and feedback from our membership. Thank Research news 6 you all. As you can see from recent editions of SMarT News the fundraising efforts of NNIPPS update our supporters are increasing apace. We remain grateful to everyone who organises, Carers news 7 participates and donates; primarily because it enables our services to continue and Campaign bulletin allows the Trust to contribute to research. It also raises awareness of MSA which means that more newly diagnosed people have access to information and support at Hints and tips 7 a bewildering and isolating time. Remember that Niki can provide help to promote Extra sources of help and publicise your events, so please contact her. We are pleased to welcome on board another volunteer, Liz Balmford, who Fundraising 8 responded to Val Fleming's request in the last SMarT News. Liz will be helping to collect Gift Aid on all the fundraising donations, which given the increasing volume of fundraising is quite a task. For every £1 donated to the SMT by a UK taxpayer we can claim 28p from the Inland Revenue! This is a really effective way of making your donations go further. So we are indebted to Liz for this valuable help. Also new on board is Darcy Hare, our latest addition to our Trustees - bringing their number to eleven. All our Trustees have a link to MSA through family and friends. Darcy is Sarah Matheson's niece. She grew up in London, where she lived Marathon Mania with Sarah for several years. Darcy ran the London Marathon for SMT in 2004. She currently works as a project officer for the Independent Police Complaints Letters 10 Commission. Holiday report, help with home The feature in the last edition about brain donation clearly caught people's insulation & council tax reduction attention judging by the response both here at the SMT office and at the Queen Square Brain Bank. It was a challenging subject to write about but we have Articles on offer 11 expanded on this experience in bringing you this edition's feature on palliative care. Membership There is a clear move within the palliative care community to extend their skills and Numbers 12 services beyond the traditional remit of cancer services. Some of our members are already benefiting from this and we hope that as a result of the article many more members will also have this opportunity. We look forward to meeting as many of you as possible as we go out and about this year. Invitations to all our Awareness Days will, as usual, be posted to all our local members. Catherine, Alison & Niki

The Sarah Matheson Trust provides a support and information service to people with Multiple System Atrophy (MSA) and other autonomic disorders, their families and carers, health care professionals and social care teams. Next issue: We also sponsor and support research into MSA Speech & swallowing Palliative care

Misconceptions about palliative care abound. To encourage members to use them at the right time, we have asked some palliative care professionals together with some of our members who have used palliative care to share their experinece. Understanding Palliative Care

s you find out about Multiple community care are just two such ASystem Atrophy you may have services. Palliative care is committed to “If you think that read or heard the phrase 'palliative care'. helping people experience pain-free If a disease is not curable then palliative comfortable deaths but they are just as palliative care is treatment will manage and reduce the committed to helping people to get as only about problems caused by symptoms. much as they can out of each day so Palliative care is a coordinated way to hospices are often vibrant dynamic depressing hospices treat an incurable illness in its advanced places. – think again.” stage. A progressive illness like MSA fits If you thought that palliative care is into the range of services and symptom only for people dying with cancer - management that palliative care offers the message we give about the role of think again. In the past palliative care once the advanced stage is reached. palliative care in the longterm has been centred around hospices for management and care of those with people with cancer however there is An integral part of health care MSA. now an increased awareness of the need Providing palliative care should be an Palliative care can be very useful in for this type of care for other non integral part of every health and social MSA in several ways. Firstly it can curable conditions like heart conditions, care professional's role (NICE, 2004). focus on managing difficult symptoms kidney failure and neurological (brain If palliative care is useful in MSA why such as swallowing or breathing & nerve) conditions. doesn't everyone get offered it? problems. If you think that palliative care is MSA is an unusual condition and Secondly, palliative care teams may only about depressing hospices - think not every health professional may be be able to offer additional care either at again. While hospices are often central aware that palliative care is appropriate. home, in hospice day centres or respite places for hospice care they are Some care professionals may also not care. increasingly only one part of a variety have had the training and support Finally, while the primary focus of of palliative services. Day centres and required to discuss difficult issues such palliative care is always the person they as living with an incurable disease and are treating, palliative care teams dying and others may not recognise the recognise that MSA impacts not just on “Palliative care can advanced stage of MSA so won't know the individual and place great emphasis when to refer to palliative care teams. on supporting the whole network of focus on managing The SMT are working on all these family and friends. difficult symptoms problems by educating health care To dispel misconceptions about professionals. Members of palliative palliative care and encourage members such as swallowing care teams are regularly attend the to consider using them at the right time or breathing education sessions at our Awareness we asked a group of professionals in Days. They add to the discussion palliative care together with some of problems.” amongst the health and social care our members who have used palliative professionals present - and reinforce care to give us their views.

2 SMarT News – The newsletter of the Sarah Matheson Trust Palliative care

What are palliative care Qservices? The palliative care nurses from the local hospice visited my husband at ■ Palliative care should work in home, assessed his needs, decided on the best action to take to relieve his partnership with existing services, be symptoms and liaised with his GP. They also offered emotional support available on the basis of need and and bereavement counselling at the appropriate time. available to all patients. The range of We were also offered 'hospice at home' and Crossroads for Carers services on offer may vary slightly from who both offered much needed help to sit with my husband at night. Margaret Smith region to region but will include symptom control, psychological and emotional support, spiritual support, ● Complementary therapies offer care should incorporate the following and social support (including benefit relaxation and reduction of anxiety principles: advice and liaising with social services through therapeutic massage, ● Affirms life and regards dying as a for support at home). Mark Perrin massage, , normal process and can be offered to ● Neither hastens or postpones death ■ Palliative care services are provided inpatients, outpatients and relatives. ● Focus on quality of life by multidisciplinary teams of ● Bereavement teams offer support to ● Holistic/whole person approach professionals and may include: relatives following the death of a ● Care of the patient and also those ● In-patient units offer admissions for loved one. Melanie Carthy who matter to that person symptom control, respite care and ● Respect for patient autonomy and for terminal care. Admissions tend What is palliative choice to be short term for the management Qcare? ● Emphasis on open, sensitive and of symptoms or fixed respite ■ Randall Jones, Clinical Nurse honest communication periods. Specialist on the Palliative Care Team, ● Community palliative care teams St Mary's Hospital, London feels that it Can palliative care help offer advice to generalist healthcare is the care of patients with an advanced Qconditions like MSA? professionals such as district progressive illness. Involving the ■ Palliative care specialists, through nurses or GPs and offer support to management of physical, psycho- working in partnership with general patients and their relatives with logical, social and spiritual problems, healthcare professionals can offer monitoring and management of by offering support in helping people helpful advice on a number of symptoms and have knowledge of achieve the best quality of life. symptoms. They can offer expert advice their local area with regard to on the assessment and management of available services including ■ The staff at St Giles Hospice, pain, dizziness, bowel and bladder voluntary organisations. Lichfield added that “the goal of problems, swallowing and breathing ● Hospice at home teams can offer palliative care is to optimise the quality difficulties, mood changes and fatigue. crisis intervention at home to of life for both the patient and their They can also act as a referral point prevent admission to acute family.” to other specialist services such as hospitals. This may be while occupational therapy, speech and awaiting admission to a palliative ■ In addition Mark Perrin, Clinical language therapy and physiotherapy. care unit or while awaiting the Nurse Specialist, Compton Hospice, Advice can also be given on financial provision of more permanent Wolverhampton stated that palliative benefits, respite care and hospice packages of care at home. Periods referrals. Randall Jones of respite at home may also be I feel that continuity with the offered by hospice at home teams or many health professionals that ■ This may include liaising with other by volunteer sitters, allowing carers become involved was a very health care professionals, including to have some periods of time for important part of the care and specialist neurology nurses, in the shopping/visiting friends/ attending enabled good communication management of symptoms and co- appointments etc. between us as changes in the ordination of care within the ● Day hospices provide the disease happened. Concerns community. Melanie Carthy opportunity to attend, usually one were able to be voiced and day a week, for access to hospice taken seriously with both of us I thought hospices were services and therapeutic activities, being able to be involved in the Qonly for people with cancer. either individually or as part of a timing of any decisions made. ■ Many adults receiving hospice care Gill Sugden group. Continued overleaf

SMarT News – The newsletter of the Sarah Matheson Trust 3 Palliative care

will have cancer, although increasingly people with other life threatening We were informed of various services which could be accessed whether conditions including neurological for symptom control or arranging respite care. This gave reassurance at a patients are supported. Mark Perrin difficult time and indeed we did take up the option of day hospital respite care, one day a week, at the local hospice which, contrary to some ■ Like all palliative care services there peoples' perception, was a place of much chatter and laughter. is a concerted movement within Gill Sugden hospices to be more open to dealing with medical conditions other than Although there are times when there is home. Complementary therapies can be cancer. Where appropriate, neurological sadness, there is also a lot of laughter to offered to help reduce stress and patients should be able to gain equal be heard. Mark Perrin anxiety. Often simply knowing that access to all the services a hospice there is someone they can speak to with offers. Randall Jones any concerns can be enormous comfort. “Palliative care Melanie Carthy Which symptoms can they workers aim to Qhelp manage? look at the patient Most of the time I cope well ■ Common symptoms are pain, Qbut sometimes I feel fatigue, anxiety, depression, reduced and their family as worried about the future and mobility, and increased dependence in even frightened. Could palliative the management of activities of daily a unit, who should care make a difference? living. Melanie Carthy be offered any ■ Definitely. Many of the services offered by palliative care could help. ■ In MSA, this would include trying to suport that is Especially the support of a palliative manage postural hypotension, resolving necessary and care nurse giving time to listen as and preventing constipation, trying to concerns or fears are voiced. Similarly address any sleep problems and appropriate.” attendance at a day hospice offers breathing difficulties, trying to promote support not only from staff but also urinary management, providing dietary from patients as well as the security of advice, trying to address difficulties Can my family be regular contact with all the hospice caused by reduced mobility, pain Qincluded? offers. Complementary therapy can control, emotional support (to both the ■ Palliative care workers recognise help with relief of anxiety and give a patient and their loved ones), that caring for someone with a serious feeling of well-being. Melanie Carthy addressing social issues and providing illness can have a great effect on a spiritual care. Mark Perrin relative's physical, financial and What is a palliative care psychological well-being. They aim to Qnurse? I imagine hospices are sad look at the patient and their family as a ■ A palliative care nurse is a registered Qplaces, am I right? unit, who should be offered any support nurse, who has undergone further ■ Some people imagine hospices to be that is necessary and appropriate. specialist training and education in the sad places and are often surprised on Randall Jones area of palliative care. These nurses will their first visit. Hospices attempt to ■ Families can benefit from respite be able to provide advice and support make a patients stay as relaxed as care for their relative either as an regarding any physical symptoms that possible for both the patient and their in-patient admission, day hospice may occur as a result of MSA, offer the family. There is often a lot of staff and attendance or hospice at home services. time and opportunity for patients and volunteers on hand to talk and share This support will allow them to their families to talk about their feelings with and to help address any needs. continue to care for their relative at and anxieties, discuss any difficulties at home, advise/apply for relevant benefits and link in with all other available The palliative care and support offered by the local hospice was palliative care services and existing invaluable. When I could no longer take care of my husband he was nursed there. The care given was the best and I was at liberty to spend as health/social care services. Mark Perrin much time with him as we wished. As I had cared for him throughout his ■ illness, I was allowed to continue my involvement, which I wanted to do. They are sometimes called Mac- Indeed it was encouraged. It became a home from home. Judy Bara millan nurses or Marie Curie nurses (these professionals can care for anyone

4 SMarT News – The newsletter of the Sarah Matheson Trust Palliative care

Community Care workers provided by Social Services gave practical day- “Often simply to-day help with hygiene and dressing. District Nurses also provided much needed practical help around the clock. The same Community Care knowing that there workers and District Nurses had been visiting for some time before they were needed for palliative care which meant their involvement at this is someone to difficult time was made easier for all of us because they had become speak to with any familiar faces. These services meant that Steve would stay at home, in familiar surroundings, with his family around him. Margaret Smith concerns can be an enormous comfort” We learnt about the hospice by chance, as it was through a suggestion and recommendation by a district nurse. She felt that I needed a break, to which my husband wholeheartedly agreed, and she recommended the hospice. As a result, my husband went into respite care on a regular basis, ■ At St Giles Hospice patients and where he was in the hands of skilled professionals – an enormous relief relatives can also self refer. We expect to us. Judy Bara patients to be informed of their diagnosis; we don't make contact if we with a progressive life threatening How can I get are aware that the patient has not been illness, not only cancer). Randall Jones Qreferred? informed of the referral. Melanie ■ In many cases a GP or district nurse Carthy Can I get help is the main point for referrals to Qat home? palliative care services in the ■ Yes. Community palliative care community. My husband passed away over services are available to patients in Many hospitals also have palliative two years ago now and I am still involved with the hospice. I think their homes and as stated earlier, they care teams who are willing to meet with that speaks for itself. Judy Bara aim to work in close partnership with patients and their carers whilst they are your GP and district nursing teams to in hospital and can refer onto supply support and advice. Randall community colleagues as appropriate. We are grateful to the following Jones Randall Jones Nurse Specialists and the Palliative Care Teams where they work for contributing to this National Council for Palliative Care article: Lucy Sutton, Palliative Care Policy Lead from the National Council for Melanie Carthy Clinical Nurse Specialist, Palliative Care is interested in engaging with groups like the Sarah Matheson Community Team, St Giles Trust Hospice, Lichfield “Of 534,423 deaths per year only 25% are cancer related with 19% related Randall Jones to heart disease, 14% related to respiratory disease and 11% strokes and related Clinical Nurse Specialist, disorders. However about 95% of patients who receive care in the UK from Palliative Care Team, St Mary's hospices and Specialist Palliative Care providers have cancer. It is estimated Hospital, London that about two thirds of people dying from causes other than cancer would Mark Perrin benefit from some palliative care. With this in mind the policy unit of the Clinical Nurse Specialist, National Council for Palliative Care is setting up groups to look at these areas Compton Hospice, - one of these is specifically looking at neurological conditions.” Wolverhampton The National Council for Palliative Care is the umbrella organisation for all those who are involved in providing, commissioning and using hospice and Our thanks also go to the following carers who palliative care services in England, Wales & Northern Ireland. It promotes the contributed: extension and improvement of palliative care services regardless of diagnosis Judy Bara, Essex in all health and social care settings and across all sectors to government, Margaret Smith, Staffordshire national and local policy makers. Gill Sugden, Yorkshire

SMarT News – The newsletter of the Sarah Matheson Trust 5 Research news

NNIPPS Update have the results, we will of course inform NNIPPS: Natural History and Neuroprotection in Progressive people through the newsletter. Those Supranuclear Palsy and Multiple Systems Atrophy – a double-blind, people taking part in the study will be placebo-controlled Clinical Trial of the Efficacy and Safety of Riluzole contacted by their trial centre. Until then, (200mg/day) versus placebo in PSP and MSA. we have a supply of Riluzole medication The NNIPPS Trial has now been teams of researchers with expertise in which has been provided by the completed across France, Germany and each of these areas who will co-ordinate pharmaceutical company, Aventis, which the UK. We would like to thank all those access to the data for researchers and participants are able to take through the people who have put enormous amounts ensure that the information is used in the 'open label' study until the results are of time and into taking part. best possible way to improve our known. Thanks to your willingness to under- knowledge and understanding of MSA We are very excited at the prospect of go all the extra visits and tests and to and PSP. having the trial results through soon and complete all our rather tedious Most centres who took part in the again would like to thank all those who questionnaires, we now have a huge trial have agreed to continue to see took part, as well as their families and amount of information about MSA and participants in an 'open label' study, carers who also contributed their time PSP to work with. This includes whereby people who completed the and energy to the study. We will also information gathered from regular NNIPPS trial are offered active Riluzole keep you informed through the neurological examinations, MRI scans, medication until the results are available. newsletter of information relating to genetic blood tests, neuropathology We will not know whether Riluzole research projects using the NNIPPS data sampling, neuropsychological tests, has benefited people until late this year, in the future. health economics questionnaires and as it will take time to enter all the data Caroline Murphy quality of life questionnaires. We have and conduct the analysis. As soon as we NNIPPS Trial Co-ordinator, UK

Personal experiences of health ation and possible treatment options for You can add your own experiences and illness: conditions including a few neurological onto the site and ask them to do a focus DIPEX Website disorders but this is not what makes the on your condition. The other important The Department of Primary Healthcare site unique (after all there are an ever aspect of the site is in providing this at the University of Oxford have a increasing number of sites offering this). information to health care professionals. research team that carry out research into The strength of the site lies in the This site offers an excellent way of the experience of health and illness from video, audio and written interviews of seeing things from a patient perspective the perspective of the patient. DIPEX is real people who discuss the actual which could have a terrific impact on the a charity that funds this research team experience of illness. Rather than way managers provide health services in and also produces a website that reflects concentrating solely on just the health the future. its findings and invites further interactive implications it addresses the effects on Please let us know what you think. research with patients. relationships, work and daily life www.dipex.org The site does have health inform- making it very comprehensive.

Follow–up Questions from the Brain Bank Article (SMarT News Issue 17) After reading the feature article on brain donation in the last form) then the QSBB's Nurse Specialist will contact the issue of SMarT News, we received these questions from next-of-kin offering support and explanation of the results, members. We are grateful to Susan Stoneham for answering usually by telephone. A letter is then sent out to the next-of- them on behalf of the team at the Queen Square Brain Bank kin offering the opportunity for them to discuss the report for Neurological Disorders. with the nurse specialist. If requested, the QSBB's Q. How long does it take to get a result (the administrator will send the neuropathology report to the diagnosis) following brain donation? patient's hospital consultant or GP. The next-of-kin is given A. We aim to provide a definitive diagnosis six months the opportunity to stay in touch with the QSBB regarding after receipt of the brain. diagnostic findings and research if they wish. Q. How will I find out what the result is? If any members have further queries or would like A. If a definitive diagnosis has been requested by the next- information on brain donation please contact Susan of-kin (this is done by ticking the appropriate box on the Stoneham, Secretary/Administrator on Tel: 020 7837 8370 Queen Square Brain Bank's (QSBB) post-mortem consent or email: [email protected]

6 SMarT News – The newsletter of the Sarah Matheson Trust Carers news

“Right to Care” Campaign “Back me up” campaign This campaign has been set up by a group of organisations This is a campaign spearheaded by Carers UK. Essentially who are seeking for all nursing and personal care to be free it recognises the need of most carers for emergency back for individuals funded from general taxation. At the moment up support. many people pay for some aspects of their care and there is Carers UK are calling for the following: much confusion about who should be funding what. Often • Investing in the right solutions through a carer emergency long term care is funded by individuals and their families, scheme and better services. this brings financial burdens at what are undoubtedly • Giving carers the back up they need to live normal lives difficult times for any family. through professional help Scotland introduced state-funded personal care from July • Ensuring carers are better informed of their rights 2002 through a series of grants and allowances for people through information,technology, case management and receiving care. Following pressure from the RTC campaign, carer’s rights. NI introduced free nursing care in October 2002 and funding A carer emergency scheme would work in the following for free personal care is being looked at. Wales is also way: carers would register and, with help, draw up their looking again at funding for personal care. England is emergency plan. The plan would be held by the scheme currently way behind. who would man a 24 hour response line. In an emergency, For further information on this campaign and the you would call the Scheme. An operator would look at your organisations behind it, log onto the following website: plan and make arrangements for replacement care. www.righttocare.org.uk or call 01273 234822 for For further information, visit the following website: more information. www.carersuk.org/backmeup

Tips and hints

The Cinema Exhibitors’ Association Card Volunteers Week 2005 This is a national card that can be used to verify that the Did you know that 2005 is the Year of the Volunteer? holder is entitled to one free ticket for a person Research carried out by the Community Service volunteers accompanying them to the cinema. shows that volunteers reap health benefits from the To apply for the card, you will need to meet one or volunteering they do. more of the following criteria: Volunteering improves health and fitness, helps • Be in receipt of the disability living allowance or individual volunteers lose weight, reduces consumption of attendance allowance. chocolate, cigarettes & alcohol. National Volunteers week • Be a registered blind person. for 2005 is 1st – 7th June. • Be a holder of a disabled person's rail card. More information about volunteers’ week can be found For further information, including how to apply write to at www.volunteersweek.org.uk The Card Network, Technology Centre, Rossmore Business Park, Ellesmere Port, Cheshire CH65 3EN Help from local volunteer agencies Telephone: 0151 348 8020 More and more people are getting involved in local Minicom/Text phone: 0151 356 7113 communities as volunteers – there may well be local Website: www.ceacard.co.uk; email: [email protected] services that can support you with volunteers. For details of your local volunteer bureau contact Unsolicited mail to bereaved families Volunteering England, Regents Wharf, 8 All Saints Street, Continuing to receive junk mail for someone close who has London N1 9RL died can be very distressing. The Bereavement Register Tel: 0845 305 6979 offers a free service which should help stop junk mail being Website: www.navb.org.uk received. Email: [email protected] You can register for this service by writing to: The Bereavement Register, Freepost SEA8240, Did you know… Sevenoaks, TN13 1YR If you are registered disabled you can use directory enquiry Telephone: 01732 460000 and ask for The Bereavement services for FREE! Register Helpline Dial 195 to register for this free access. Website: www.the-bereavement-register.org.uk

SMarT News – The newsletter of the Sarah Matheson Trust 7 Fundraising

London Marathon 2005 On Sunday 17th April nine runners completed the 25th London Marathon for SMT. This year’s runners were: Susan Bourke (6.38), Allan Comette (4.49), Clare Dixon (6.12), Christine Fergusson, Hayley Lemas (4.0), Joseph Rham (4.14), Mark Steel (4.07), Nick Webster (3.52) and Stuart Yoxall (4.26). Well done all!

Post Marathon Event We were overwhelmed by the support we had at our first post London (top left) (clockwise from left) Marathon event. The afternoon, at the Mark Steel , Mike Evans, Nick Webster, Red Lion in the centre of the West End, Hayley Lemas; (bottom left) The Stone proved to be a real success with the family with Mark Steel; (above) Susan Bourke with her Dad, John runners, their friends, families and members of the Sarah Matheson Trust all joining in the celebration. Christine Ferguson, Nick Webb and day – either as a runner or spectator, as As the Marathon runners joined us Susan Bourke to enjoy the occasion, the well as to meet other people connected from the finishing line wearing their food and the well deserved drinks! It with MSA. medals and smiles, they all got a great was wonderful to be able to meet We look forward to keeping up the round of applause not just from the together afterwards and thank the momentum and building upon the SMT crowd but from everyone in the marathon runners for their magnificent success of this year’s event, in 2006. pub. Five of the runners made it to the efforts to raise funds for SMT. It was Thank you again for all your support. pub: Hayley Lemas, Mark Steele, also fun to share the experience of the Michael Evans, Trustee Fundraising events across the UK & beyond Wembley Collection musicians to raise funds for St Mary’s completed the Snowdon Marathon Allan Comette once again proved to be Church and the SMT. Rhiddian Jones raising £460 for SMT in memory of a star and collected £247 for SMT at a was a former member of the St Mary’s David Humphris. boxing match held at Wembley. Singers. Redevelopment of the Wembley Arena Flora Light Challenge site means we may not have as many Anna & Sarah Folan completed the opportunities to collect this year – this challenge for SMT and have raised in one was offered the day before but excess of £200 for SMT in memory of Allan turned up trumps for us. Those of Patrick Folan. you who have kindly offered to help if available will be contacted for any Forthcoming events future events offered. ● SMT Family Picnic — Battersea Park, Sunday 7th August Christmas Gifts This year the SMT team are moving the The McLennan family and friends annual get-together to Battersea Park cutting his cake decided this year to donate the money and invite you to bring a picnic and join they would have spent on Christmas 60th Birthday Celebration us. There are lots of facilities in the gifts to SMT. We received a generous Friends and family helping Brian park to keep a range of age groups total of £360. Dunning to celebrate his 60th Birthday amused, the rest of us have an donated over £375 to SMT in lieu of opportunity to sit and chat in the Concert gifts. glorious surroundings of a London St Mary’s Singers of Swaffham park. More details of where we will be Bulbeck donated £340 from their Snowdon Marathon gathering are available on request from annual concert given by the singers and On 31st October 2004 Paul Humphris the SMT office.

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

Fundraising Football Competition Until recently I used to play football; badly. Indeed there were those who would dispute my description, but I turned up and drank my fair ● First SMT Nottinghamshire share. Our team is called Chesham Thursday FC: Sponsored Walk – September 11th 2005 6-a-side on a Monday night and occasional 11-a- Hugh Matheson will be leading walkers side fixtures with similar veterans’ teams. raising funds in this new event – When I was diagnosed with MSA, about a Courtesy of the Bucks Examiner guiding the route and talking about year ago, I asked my team-mates if I could what they will be seeing as they walk continue to play. They agreed I should while I through Thoresby Park, Nr Ollerton in felt comfortable with it. I continued to make Nottinghamshire where they will see little impact on the pitch and stopped playing (but Trevor Munns some of the few surviving parts of the continued drinking) when I considered it unsafe. ancient woodland of Sherwood Forest. I started planning a sponsored walk that was to be in aid of the SMT, but Walkers will be invited to gather from time seems to pass quicker now and before I knew it, it was too late in the year. 10.45 with the main party of walkers Then in February, some of “the Thursday” who had volunteered themselves for setting off at 11.30 to reach the the walk proposed a fundraising event this spring. I was speechless that people advertised and mapped lunch stop at were willing to put so much thought and effort on my behalf. “Gosh” I said. 12.30. The less mobile will find plenty The event we settled on was a 6-a-side football competition with an of interest within close reach of the car attached family fun day. The aim is to provide enjoyment for the maximum park. It is planned that there will be number of people, while maximising revenue to the Trust and spreading some kind of gathering at the end of the information about MSA as widely as possible (we are sending or handing out walk where walkers and non-walkers hundreds of flyers about MSA and the SMT). By asking old friends to help, will be able to congregate together. or enter a team or donate a raffle prize I am taking the opportunity to tell them Further details will be published in the of my condition without casually dropping the ‘degenerative neurological Summer edition of SMarT News and disorder’ bombshell into a conversation. sponsorship packs will be available So a football competition it is. Up to 30 veteran’s teams (over age 35) if from the SMT office. we are lucky and 10 under-14s teams (the age group I used to coach)... with a bar and barbeque and band and bouncy castle and beat the goalie and a balloon race and a raffle and soccer skills workshop and a carom competition and maybe some theatrical events and maybe a footballing celebrity and much, much more. And to top it all, Alison says there should be one or more people from the Trust! It is all happening on Saturday 18th June starting at about mid-day until Thoresby Hall (a Warner hotel & spa) about 6pm (play 1pm until 5 pm ish). The venue is at the Chesham ● Great North Run September 2005 (Buckinghamshire) Campus of Amersham & Wycombe College, at the top of On the 18th September Helen & Simon Nashleigh Hill (Lycrome Road, Chesham HP5 3LA) on the road to Parker will be running in the Great Berkhamstead. There are due to be some road closures in Chesham town North Run for SMT and When You centre that day so it would be best to approach from the A41 at Berkhamstead Wish Upon a Star, the charity that if possible (between Junction 20 M25 and Aylesbury). Do come. Trevor Munns fulfils the wishes of children with life For more details contact Stephen Young (07748653942), Pat Drew threatening illness. Anyone else (07798566822), Ken Smith (07952185978) or Trevor Munns (01494727003) planning to run please let us know so that we can help you with your “We are planning to start fund raising 826449 or [email protected] . fundraising efforts – including an proper around June when the weather is To find out more look at the trek online sponsorship facility. warm and so that a trek over freezing website at www.etsplc.com/everest.asp . glaciers to Everest will seem even more We will publish any reports and ● Everest Trek October 2005 awesome!! Everyone now has their photographs in the Summer edition Clive Grove and Andrew Griggs will be flights booked and so we depart on the of SMarT News. Please let us know of organising the group of 9 who set off to 8th October”. Anyone wishing to any fundraising events taking place walk to the foothills of Everest in the sponsor them in this mammoth effort so that we can let the Sarah beginning of October. Clive reports that can do so by contacting Clive on 01202 Matheson Trust membership know.

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

hotel and arranging your own flights as A ‘Health Hotel’ in Tenerife this works out a lot cheaper. We booked As my husband Geoffrey’s MSA any atmosphere and reminds you of a the flights with Monarch who were most progressed we found ourselves unable to canteen! Of course, there are numerous helpful with regard to wheelchair take the holidays we had enjoyed so restaurants in the area and eating out assistance. much in the past. Also, since our darling need not be expensive. As many tables I hope this information will be daughter lives in Tenerife, it had also are outside the restaurant, this does help helpful to others in a similar situation as become impossible to visit her as to make them accessible to all. ourselves as I feel the therapeutic Geoffrey could no longer cope with We can strongly recommend “Sugar benefits of a break in routine are even stairs or with the lack of facilities in an & Spice” an Italian restaurant in the more important now. ordinary home/bathroom. admittedly more “brash” area of Las Marion Wooldridge, Cheshunt Happily, we found the answer and Americas, a steep ramp but quite have had two visits and are planning a wheelchair accessible. Another good third to the Mar y Sol (www.marysol.org) choice is one of the Little Italy chain at A warming hotel in Los Cristianos, Tenerife. This Playa Fanabe where you can watch the hotel is described as a “health hotel” and sun go down over the sea. There isn’t a tale for all is organised around disabled people and ramp but a small step that with a kindly memebers anyone with restricted mobility. The waiter’s assistance is easily managed. rooms, including the bathrooms, are Also, for a treat, try the “Molino I said that I would send you some spacious, allowing good wheelchair Blanco”, again steep ramp but well information on two helpful schemes access, with walk-in showers and any worth a visit. We have also had which some members may not be aware equipment required (e.g. raised toilet takeaways delivered to our room to eat of. Neither of them is means tested and seats, wheelchairs, bath lifts, etc. etc.,) out on the terrace which are equally as I have recently taken advantage of both. can be hired from LeRo, a company enjoyable. Nearby is “Rosie’s Cantina” The first is for home insulation and based in the hotel (www.lero.net). – they do not deliver but if there is heating improvements. I had just Literally, any equipment you can someone who can pick your meal up installed a new central heating boiler think of can be hired from them for your and you enjoy Mexican food they are and double glazing before I found out stay and will be in your room when you very good. Also for delivery to your about this scheme from Warm Front so arrive. LeRo will also arrange for your room, if you are wheelchair bound, did not need help with heating, but they transfer via a specially adapted coach or undoubtedly the best Indian food we arranged for 10 inches of insulation in minibus. have ever had anywhere can be ordered the loft as well as cavity wall insulation. The low season at Mar y Sol is from from “Tigre Tigre” (www.tigre- The work was carried out 1st May to 30th October and would tigre.com) (Tel: 922 79 15 16). Of professionally and quickly; it did not strongly recommend that period as the course, if mobility is not a problem, far cost me a penny. time to visit as, lovely as it is to break up better to visit the restaurant itself which Members may also be eligible for a the winter, the prices almost double is between Los Cristianos and Las reduction in council tax if they need an between 1st November and 30th April! Americas at El Camison. extra room, bathroom, kitchen or extra The only criticism we have of this This holiday can be booked through space to use a wheelchair. I applied to hotel is the food which we considered Accessible Holidays but I would my council tax office and my council very poor plus the restaurant itself lacks recommend booking directly with the tax was lowered by one band. If you think it might be helpful, you may wish to publish this information in East Midlands Support Group SMarT News. Some members might be unaware of it; I certainly was! The next meeting of the East Midlands group will be having an information Best wishes, David Lee (Waltham Support Group is to be held on stand at the Long Eaton carnival. If Abbey) Wednesday 27th April, when the guest anyone in the East Midlands area knows Contact: Warm Front 0800 952 1555 speaker will be Mr David Richmond. of a summer carnival where it would His talk will be about “The Golden Days possible to have an information stand of Hollywood”. The meeting will be please contact me. We welcome letters that share news and held at Holme Pierrpont Hall, Ian Jones, Secretary, experiences from all our members. We Nottingham commencing at 2pm. [email protected] will publish as many as space permits in On Saturday 21st May the support Tel: 0115 9199294 each issue of SMarT News.

10 SMarT News – The newsletter of the Sarah Matheson Trust Articles on offer

Discovery Mk2 4 wheel scooter Excellent condition, 18 months old, one The Chatterbox communication aid careful owner – now unable to use. Includes swivel seat, basket, owners manual and charger. Cost when new £2250, will accept £800 ono. Buyer must collect (St Albans, Herts.) For further details contact Chris Dunkerley on 01727 856706

Mercury 4 wheel scooter, 2 speed Hardly used. Comes with swivel seat and canopy. Cost when new £2500, will accept £700 ono. Buyer must collect (Edinburgh). For further details contact Dorothy Newlands on 0131 339 5609 My wife passed away late in 2002, I had been caring for her since 1996. It was thought she was suffering from PSP, however after her death it was found that Cruiser 2E electric wheelchair she in fact had MSA. During the long slow deterioration of her health she Good working order - folds to lift into began to loose the ability to speak clearly. Her movements became very car but not very lightweight. Asking limited, eventually having movement only in her lower arm and wrist. In spite price of £300 – SMT will receive a of her suffering it was her inability to converse with me that caused her the donation from this sum. Buyer must most distress and anger. collect (Wickford, Essex). After making enquiries into available aids to help us solve this problem it For further details contact Jenny Ward appeared there was nothing within our budget to help. I decided to make on 01268 764034 something myself, a communication light box. The operation at first proved little slow, but with patience we managed at last to be able to talk to one another. The SMT recommends that you are I later improved on the model and designed the Chaterbox (see photo) assessed by an occupational therapist which are now available in limited numbers at the cost of the materials only. before obtaining disability equipment. These units are simple to operate taking only 10 minutes to master. The SMT does not accept For more details please contact me on 01444 881444 responsibility for the safety and Ken Chipperfield, Hickstead suitability of any advertised items.

In Memory ● Christine Hampson ● Roy Russell Donations received with gratitude in ● Enid Hill ● Tony Shaw memory of: ● Chris Jones ● Stephen Smith ● Susan Abbott ● Paul Latimer ● Agnes Stark ● Ian Adams ● (Sheila) Wendy Lord ● Julie Sutehall ● Trish Adams ● Sheila Macfarlane ● Malcolm Threlfall ● Nancy Ansbro ● Peter Male ● Stella Trivass ● Dennis Barker ● William McGinness ● Raymond Walker ● David Bran ● Allen McGuinness ● Gale Watson ● Joan Callingham ● Eileen Moor ● Eddie Whiteside ● Christopher Cordingley ● Carole Ann Oakes ● Ron Williams ● Bill Curry ● Gilbert Peters ● Maureen Wyatt ● Piers Eggett ● Evelyn Petty ● Ray Young ● David Eglinton ● Cyril Read ● Patrick Folan ● Ernest Reffold Legacies received from the estates of: ● Ken Forster ● Christina Richardson ● Mr M Szell ● Albert Glover ● Jenny Rollitt ● Mrs SW Lord ● Paul Greensill ● Jean Rowles ● Mrs JH Smith

SMarT News – The newsletter of the Sarah Matheson Trust 11 Ways to support the SMT MSA and help us to grow • Become a regular donor (a birthday or anniversary), a Donations by monthly or annual direct sponsored event (such as a spellathon

Sarah Matheson Trust for debit however small will help us for your school) or maybe in memory Multiple System Atrophy maintain our services. Don’t forget to of someone who supported the SMT. GiftAid any donations to increase the Information, Support, Education & • Contribute to SMarT News value of your donation by 28%. Research in Multiple System Atrophy Sharing your experiences and tips with and other autonomic disorders. • Become a fundraiser other members helps keep it your Events such as coffee mornings, car newsletter. Providing services to people with MSA, boot sales and a wide variety of families, carers and professionals. • Form a local SMT group sponsored events bring us valuable Linked with the SMT but ● income every year. New ideas always Information leaflets and newsletters independently run to provide what the ● welcome! Specialist nurses local group wants (e.g. information, ● Telephone advice line • Use our online mutual support, social contact). ● Regional support meetings fundraising/donation facility • Raise awareness about MSA ● Training and education sessions We now have the facility for you to use Share our information with family, ● the online fundraising package on MSA research friends and the health professionals ● www.justgiving.com . You can create Communication Aid Loans you meet. ● Welfare Gift Scheme your own personalised online sponsorship page to raise money for The SMT staff can offer practical Patrons: the SMT for a sporting event (such as a guidance if you are interested in Sir Roger Bannister CBE FRCP marathon or trek), a personal occasion taking part in any of these activities. Professor CJ Mathias DPhil DSc FRCP Gift Aid It! Trustees: Did you know that if you are a UK taxpayer we can increase the value of any Mrs Robin Brackenbury donations you make to the SMT by 28%? This could raise the SMT as much as Michael Cook AO £20,000 extra per year to support our work. Michael Evans Valentine Fleming We now include Gift Aid in all the sponsorship forms and fundraising packs. Ms Darcy Hare Gift Aid declaration forms are available from the SMT office. Alexander Loehnis Christopher Marsden Dates for your diary Hugh Matheson ● Guernsey – 6th July Peter Murray ● Liverpool – Glaxo Centre, 13th July Eileen Lady Strathnaver OBE Lady Harriot Tennant ● Cambridge – 20th July. Toby Chuchill Limited, Over ● Cornwall – 8th September All correspondence and ● Edinburgh – Scottish Health Services Centre, 12th October enquiries to: All our members will automatically be notified of any Awareness Days held in Alison Abery (Nurse) Catherine Best (Nurse) their area; an invitation will be forthcoming once the date and details are fixed. Nikita Ranade (Administrator) For details of meetings outside your region please contact the SMT office.

Sarah Matheson Trust Newsletter Mailing: For the eagle Pickering Unit St Mary’s Hospital Membership Numbers eyed amongst you it may have been Praed Street as of May 2005 noted that this edition of SMarT News London W2 1NY Current MSA members 672 has arrived by an automatic mailing. 020 7886 1520 Past MSA members This will save us money and hopefully 020 7886 1540 (fax) (since 1997) 416 speed up the delivery to you in the www.msaweb.co.uk Other patient members 41 future. We would like to assure you that The Trust is financed entirely by Relatives & carers 300 your address details are not held by the voluntary donations. Professionals 1232 mailing company to maintain your Others 116 privacy. Please continue to advise us of Registered Charity Number 1062308 any change of address details. Designed, laid out and printed by INQ Design. Call Martin on 020 8688 8773 12 SMarT News – The newsletter of the Sarah Matheson Trust