msa news (issue 27)

From the executive directorBy the time SMarT News reaches you, I’ll have

been with the Trust for five months and theyhave flown by! During this time I’ve met, spokenwith or had letters from many people – members,volunteers and trustees – and I’ve been amazed atthe warmth and depth of feeling and commitmentthere is to the charity and the work it is doing. Inmy previous roles, I have worked as executivedirector of two other charities, The Blood PressureAssociation and The Prostate Cancer Charity andhave some experience of healthcare and researchcharities; it’s been a revelation to see just howmuch the Trust has achieved in the past 10 years.

As our Chair of Trustees, Eileen Strathnaver,said in the last newsletter, the Trust is goingthrough a period of change as it moves into the next phase of its development. Inparticular, we are looking at how we can develop our support services and alreadyhave some exciting news. In March we will be expanding our nurse complement andwill be joined by Katie Rigg who will be working in partnership with our existingspecialist nurse, Samantha Pavey. They will share responsibility for delivering – andhelping to develop – our services across the UK, Samantha concentrating on the UK’ssouthern area and Katie the northern parts of England as well as Scotland. We havealso created a new position, the Information and Support Officer, to help coordinate

and, again, develop our services. A veryimportant part of this new role will be tohelp our existing support groups and to findways of growing a “support network” acrossthe UK. To help us to develop our servicesto you, we feel it is very important that weget your thoughts on what we currentlyprovide and what you feel is missing. Withthis in mind, we’ve compiled a short surveywhich asks questions about the type of

information and support you’ve already had from us and what you thought of it, andalso asks questions designed to help us get a better idea of what you might find helpfulin the future. Surveys are never perfect, but they’re a good way of getting an overallpicture of people’s needs now and for the future, and your feedback will really helpus to plan our activities. Please look out for it, as it should be landing on your doormatin the next few weeks. It will also be available on our website around the same time.

So, there are exciting times ahead for the Trust and our intention is, of course, togrow and improve our services to you. I’m really looking forward to working as partof the team and getting to know you.

Nickie Roberts, Executive Director

SMarTContents

From theexecutive director 1Nickie Roberts introduces herself

The role of the SMT’sspecialist nurse 2Samantha Pavey gives a round-upof her work for the Trust

Care in the Home 3An update on the progress of theBill through Parliament

Information resources 4How would you like to help withthe Trust’s information resources?

Feeding difficulties 5Information for professionals

Research update 6-8Nerve cell mechanism explored;pain and quality of life

Carer news 9Respite holidays on offer

Regional support 10-12Reports from around the country

Fundraising 13-15Running, cycling, canoeing... andother fundraising ideasHow to get involved 16

NewsNewsNews

Sarah Matheson Trust providesa support and information serviceto people with Multiple System

Atrophy (MSA), their families andcarers, healthcare professionals

and social care teams.We also sponsor and support

research into MSA.

The newsletter of the Sarah Matheson Trust

Issue 27 Winter 2010

Nickie Roberts

Find out moreThe Information and Support Officer

position is currently being advertised

and details can be found on our

website, www.msaweb.co.uk, or by

contacting Linda in the office on

020 7940 4666. If you know anybody

who might be suitable and interested

in this role, please do encourage them

to find out more!

Specialist nurses

SMarT News – The newsletter of the Sarah Matheson Trust2

Telephone helpline

I run the helpline across the week fromMonday to Friday from 09.30-16.30and while I’m away from my desk theanswerphone picks up messages whichI reply to as quickly as I can. I receivecalls about many different aspects ofliving with MSA, from people with thedisorder and also from carers andfamily members. Sometimes calls areabout the physical issues of MSA,helping people to think through thepractical changes that might make lifeeasier, such as how to adapt thefunctional rooms at home such askitchens or bedrooms, and sometimesthey can be more about helping peoplewith any emotional concerns they mayhave. If you would like to call me, mynumber is 020 3371 0003.

Examining therole of the Trust’sspecialist nurse

Email enquiriesMany people prefer to have theirquestions answered by email, perhapsbecause it means they can get in touchat any time of the day or night and myanswer (I usually try to get back topeople within a few days) can be readwhen it is most convenient to them.Contacting me in this way can alsoprovide time for people to thinkthrough their query, and time to reflecton the content of my answer. If youwould like to email me, my address [email protected].

Liaising with your healthcareprofessionalOften when people join the Trust theyask me to visit them. Unfortunately I’mnot able to do this, but I can liaise bytelephone with your Parkinson’sDisease Nurse Specialist and any otherprofessional involved with your care.I’m also very happy for you to pass onmy contact details to any of theprofessionals involved in your carepackage. If you need assistance withcontinuing health care funding, I amalso happy to write a letter of support.

Trust support groupsThe Trust has a number of supportgroups around the UK run by anincredible band of volunteers. Theyprovide an opportunity for people withMSA and their families and carers to

meet, chat and share support and ideason living with multiple system atrophy.My aim is to attend each support grouponce a year to look at any MSA topicsof interest to people at the group, and toupdate everybody on current thinkingregarding treatment and research.

Education and awarenessA role considered very important by theTrust, is that of improving educationand awareness of MSA amongst healthprofessionals. Because MSA is notcommon, some health professionalsmay meet an MSA patient only once ortwice in their whole career. I offerteaching sessions to hospitals, hospicesand care homes supporting somebodyliving with MSA. I organise awarenessdays where a wide range of healthprofessionals attend a morning ofupdates and then the afternoon isavailable for people with MSA andtheir families to attend. I also currentlyattend special MSA clinics inManchester on a regular basis, and willsoon be starting clinics in Brighton andCambridge.

Samantha Pavey

Our new nurse, Katie Rigg, will bewriting about her role with the Trustin a future issue of the magazine, andwe will keep you posted aboutgeneral developments of the service.

“Sometimes calls areabout the physical

issues of MSA, helpingpeople to think

through the practicalchanges that might

make life easier.”

Please note, the telephone number for Samantha Pavey (Specialist Nurse)has changed but her email address remains the same.

Her contact details are:

Samantha Pavey (Specialist Nurse) 020 3371 0003

Email: [email protected]

Personal care

SMarT News – The newsletter of the Sarah Matheson Trust 3

The Personal Care at Home Bill hasjust finished its Second Reading in

the House of Commons. It now entersCommittee Stage which is followedby a report and then a Third Readingin the House of Commons. Thisprocess is echoed in the House ofLords with a final consideration ofamendments in both houses. Labouraim to pass this law before Parliamentdissolves for a General Election.However, if passed it could still berepealed by a new government.

Definition of who will benefitThose with “highest care needs” isdefined in two parts:• The person must fall into the

Critical band as set out in currentFair Access to Care Services(FACS) Guidance

• They must also require significanthelp with four or more activities ofdaily living (ADLs). Examples ofADLs include personal toilet,eating and drinking or managingurinary and bowel functions

During the Second Reading, Secretaryof State for Health, Andy Burnham MP,

advised that 170,000 people currentlyreceive free personal care at home, sowould be unaffected by the change;110,000 people currently pay and couldbenefit if they fit the definition of“highest care needs”. A further 130,000people will benefit from extra six-weekreablement programmes that are part ofthe proposals.

The role of reablement inreceiving free careCouncils will have the function ofdeciding whether or not free personalcare should be conditional on a personundergoing a period of intensivesupport or reablement for up to sixweeks before a formal community careassessment. This reablement processwill not be charged and may be acriterion for free care. This couldinclude physiotherapy, occupationaltherapy and the installation of telecareor adaptations.

Will carers benefit?The Princess Royal Trust for Carersfears that the Bill as it currently is couldexclude the option of the familyreceiving new support to improve thesituation in which unpaid personal careis given and received. Furthermore, aservice provided to the cared-for tomeet a need assessed of the carer, willnot be eligible for free personal care athome for more than six weeks.

The Princess Royal Trust forCarers’ recommendations for inclusionin the Bill:

• That carers who currently providepersonal care to a family membershould be able to reduce theamount of care they provide, withthe care-receiver able to take upfree personal care instead

• That where a carer currently providespersonal care to a family memberand wishes to continue to do so, theirfamily will nevertheless be able totake advantage of new free support,to an equivalent value of the newsupport that would be offered to thefamily if there was no carer, or if thecarer decided to stop caring

What you can doContact your local MP with your viewson the Bill (see www.parliament.uk/mpslordsandoffices/inde.cfm). You canalso contribute or start a discussionforum about how you feel about thisBill on www.carers.org.

To find more information about theBill and the role The Princess RoyalTrust for Carers is taking in pushingfor more support to carers and theirfamilies, contact Gordon Conochie(email [email protected]) or writeto him at The Princess Royal Trustfor Carers, Unit 14, Bourne Court,Woodford Green, Essex IG8 8HD. Wewould also be grateful for a copy ofany comments forwarded to Gordonto help us get a better sense of yourown experiences and views.

Article reproducedwith the kindpermission of ThePrincess Royal Trustfor Carers

An overview of governmentplans for care in the homePrime Minister, Gordon Brown, announced at the Labour Party Conference inOctober last year that people in England with the “highest care needs” wouldreceive free personal care at home. This Bill has been brought before Parliament tomake this a reality for people beginning 1 October 2010.

“A further 130,000people will benefitfrom extra six-week

reablementprogrammes that are

part of the proposals.”

Information resources


Irecently heard someone say, “Theonly thing that’s certain in life is that

nothing stays the same”. This isparticularly true for those of usliving with the effects of MSA.

When my husband, Graham,first developed symptoms in2003, I was serving as theBritish Consul in Zambia andGraham was running trainingcamps for wildlife officers inremote parts of the Zambianbush. Seven years down the lineand Graham is now a permanentresident of The QueenAlexandra Hospital Home fordisabled ex-service personnelon the Sussex coast and I have recentlytaken voluntary early retirement fromthe Diplomatic Service. Throughoutthis often turbulent time, one of the fewconstants has been the wealth ofinformation and support provided bythe Sarah Matheson Trust and itssupport group network.

I know that many members sharethe same positive view that Graham andI have of the Trust’s services. However,

Would you like an opportunityto help shape the Trust’sinformation resources?

there is always room for improvementand the Trust believes that some of theirinformation material would be even

better if it had the input of those whoultimately read it. So in the comingmonths the Trust would like to form auser panel comprising a representativeselection of those who use theirservices. The idea is that the panel willreview the whole range of materialprovided, how it’s written andformatted and make recommendationsfor developing it in a way that meets theneeds of as many current and future

users as possible. If you would liketo volunteer to take part in thisproject, please contact the office on

020 7940 4666 or [email protected].

It isn’t essential forvolunteers to have internetaccess so there’s no need to beput off if you don’t have acomputer, and there will be nomeetings to travel to. Theproject will be undertaken bypost and/or email as suits eachvolunteer best. The keyconsideration is that the panelshould reflect the broadestpossible geographical spread

and range of backgrounds/ages, both ofthose who have been diagnosed withMSA and their carers.

There will be a limited number ofplaces on the panel, so please hurry upand volunteer!Lyn Shaw, Trust Office Volunteer,

Feltham, Middlesex

Lyn and Graham

Helping children to understand disability

“Sometimes, when people are unwell, they need help from people or pieces ofequipment that we call gadgets. These gadgets can look a bit strange and a bit scarybut really there is nothing to be worried about. They will help the person you careabout to do the things they couldn’t otherwise do.”

The Trust has recently produced a very special leaflet written and designed to helpchildren understand disability in the family. Using comic-style, colourful drawings, itexplains in simple terms how different equipment can help those who are less able-bodied go about their daily lives, and looks in particular at equipment for use in thekitchen, bathroom and with talking and sleeping. Copies of this, and our othermaterial, can be obtained from the office by emailing us at [email protected] orby calling on 020 7940 4666.

“Gadgets” was made possible by the generous support of the Dunkerley family in memory of Peter

Feeding difficulties


Aworking party set up bythe Royal College of Physicians

and the British Society ofGastroenterology has published a guideon oral feeding difficulties anddilemmas. The aim of the report is toimprove care by providing healthcareprofessionals, patients, their familiesand carers with practical advice that hasa sound legal and ethical basis. Thereport’s authors (a multi-disciplinaryteam of healthcare professionals withan interest in nutrition matters,medico-legal experts and patientrepresentatives) have reviewed theclinical and ethical argumentssurrounding the tube feeding of patientswho experience swallowing difficultieseither as a result of neurological illnessor other disabilities.

The report’s recommendations are:• Oral intake, modified as necessary,

should be the main aim of anutrition strategy. Even if a patientis deemed to have an “unsafeswallow”, a risk managementapproach may offer the bestquality of life; “nil by mouth”should be a last resort, rather thanthe initial default option. Wheretube feeding is necessary, thisshould be additional wheneverpossible and done with clearclinical objectives in mind.

• To ensure patient-centred decisionsabout artificial nutrition andhydration are being taken, thereneeds to be a clear agreement aboutthe aims of any regimen. Suchdecisions should not be based onthe convenience of staff or carers.Nor should artificial feeding everbe required as a criterion foradmission to any kind of institutionproviding care.

• All primary care trusts and carehomes should ensure there aresufficient staff, especially at mealtimes, to assist and feed thosepatients who require a longer timeto eat an adequate meal.

• When oral feeding difficultiesoccur, a nutrition support team,ideally but not inevitably led by adoctor with special expertise innutrition, should be made availableto work with patients and theirfamilies.

Dr Rodney Burnham, co-chair of theworking party, said, “This report bringsconsiderable and much over-due

clarity to a very challenging area.Feeding difficulties can create greatuncertainties and even confusionamong healthcare professionals aswell as patients and relatives.” Theworking party expects the report’srecommendations to be disseminatedwidely amongst the professional bodieswho have endorsed its contents. Inaddition to the Royal College ofPhysicians and British Society ofGastroenterology, these include: TheAssociation of British Neurologists, theBritish Dietetic Association, the BritishGeriatrics Society, the Royal Collegeof Nursing and the Royal College ofSpeech and Language Therapists.

Health teams receive expertadvice on oral feeding

“This report brings considerable and muchover-due clarity to a very challenging area.”

Research update


Q: Could you give a summaryof the project’s objectives?

A:Multiple system atrophy (MSA) isa neuro-degenerative disease affectingadults. Its clinical features includeparkinsonism, cerebellar signs andautonomic failure. It is expected thatthis project will contribute toimproving the understanding of thedisease process which is essential forthe development of future treatmentsof MSA.

Q: What have been the mainareas you have concentratedon since starting the projectin March last year?

A: This project will use tissuesections from the brains of patientswho have died from MSA, and it isessential that we can accuratelyvisualise different cell types in thesesections when viewed using amicroscope. We do this by using

particular type of cell. We can thenuse coloured dyes to see where theantibody has bound. Antibodies thatidentify nerve cells and astrocytes arereadily available, but it is much moredifficult to find antibodies thatwill stick to different types ofoligodendrocytes. The first part ofthe project has been devoted todeveloping the method to do this,and we have had increasing successin this area but there is still furtherwork to do.

We are also establishing a straight-forward method to characterise thepattern of disease in MSA cases as

Glossary

About cells – Glial cells: The central nervous system (CNS) consists ofneurons and glial cells. Neurons constitute about half the volume of theCNS and glial cells make up the rest. Glial cells provide support andprotection for neurons. They are therefore known as the ‘supporting cells’of the nervous system. They supply nutrients and oxygen to neurons,insulate one neuron from another and clean-up their surrounding area.There are three types of CNS supporting cells, Astrocytes, Oligodendrocytesand Microglia.

Astrocyte: A supporting ‘glial cell’ with an important role in nourishingnerve cells and cleaning up the area around them.

Alpha-synuclein: A cell protein.

Axons: In effect the transmission lines of the nervous system, makingcontact with other cells at junctions called synapses in order to pass signalsfrom one nerve cell to another.

Myelin sheath: The insulation around an axon.

Oligodendrocytes: A type of ‘glial cell’ whose main function is to form theinsulating myelin sheath around axons in the brain and spinal chord.

Neurons: Also known as a nerve cell, these electrically “excitable” cellsare the core component of the brain. A common feature ofneuro-degenerative diseases is the loss of connections between nerve cellsand their eventual death.

Pathogenesis: The step-by-step process leading to the development ofa disease.

Dr Janice Holton, one of the Trust’s research grant recipients based at the QueenSquare Brain Bank in London, describes her research project, “The central role ofoligodendroglia in the pathogenesis of multiple system atrophy”.

A group of oligodendrocytes

Trust researchers explorenerve cell mechanism

a technique called immuno-histochemistry, which relies on theuse of an antibody that sticks to a

Research update


this means that we can see whetherthere is a relationship betweendifferent patterns and genetic riskfactors as we begin to understandmore about these.

Q: Why has this beenimportant to the progress ofthe project?

A: Developing this staining methodis crucial for the project as it providesthe essential tool for the next phase ofour work.

Q: What will your focus befor the next 6-12 months,and why?

A: We will continue to develop ourmethods for immuno-histochemistryand apply this to the collection ofMSA cases available to us.

We will also begin to develop themethods required for the next part ofthe project, which will be to find outwhether the amount of a-synucleinmade by ol igodendrocy tes i sincreased in MSA. We will approachthis using a technique called in-situhybridization.

Q: What are you anticipatingfrom this?

A: We expect to be able to find outwhether damage to oligodendrocytesin MSA results in immature forms ofthese cells being increased in numberin affected parts of the brain which

London research study: volunteers with MSA-P – Thank you!I am very grateful to those people who replied to my call in the AutumnSMarT News for volunteers for the research project in MRI scanning we’reundertaking here. We had an excellent response, and this means that I’vebeen able to fill all the remaining slots.

I’m very grateful to all of you who expressed an interest in this work andwill, of course, give you an update on our future progress.

With best wishes for 2010!

Luke Massey, Clinical Research Fellow, Institute of Neurology, London

“Developing this staining method is crucial forthe project as it provides the essential tool for

the next phase of our work.”

Janice Holton

could indicate an attempt by the brainto repair damage. If this happens, wewould like to know whether it occursall the time throughout the course ofthe disease, or whether such a repairmechanism is overcome as time goeson and the disease progresses. We willalso find out whether the damage to

oligodendrocytes and the myelinsheath that they make around axonscauses axons to be damaged, andwhether inflammatory cells areinvolved in this process.

Q: How do you feel theproject will contribute to theunderstanding of MSA?

A: At present very little isknown about how the accumulationof a-synuclein in oligodendrocytesin MSA leads to the death of thenerve cells. If we understood themechanism of this better, it mightbe possible in the future to developdrugs that can interfere with theprocess and prevent nerve cell death.

Research update


Many people with MSA, PSP andParkinson’s disease report their

experiences of pain to medicalprofessionals. However, there are fewformal reports of pain in theseconditions published in medicaljournals. Documented evidence thatoutlines who feels pain, and the locationand type of their pain, is needed tosecure funding for investigations intowhich treatments may be beneficial.

In addition to holding specialistmovement disorder clinics and supportmeetings for people with MSA and PSP,Salford and Manchester basedneurologists and specialist nurses havejoined together with neuroscientists toform the Greater Manchester MovementDisorder Group. Our group is an activeresearch team, currently investigatingand characterising pain in people withMSA, PSP and Parkinson’s disease. Thisparticular project is led by Dr MontySilverdale, a consultant neurologist andmovement disorder specialist.

When people attend their clinicappointments at Salford Royal (formerlyHope) Hospital, they may be invited totake part in a 30-45 minute one-off painassessment. If a person decides to takepart, they are seen by one of theresearchers working on the project, DrChris Koylecki or myself, either on theday or by appointment. Our teamencourages involvement of students,where possible, to enable future doctorsand researchers to become betterinformed of the practicalities and issuesthat people with diseases like MSA face.As such, we are sometimes assisted by amedical or psychology student.

Kathryn McDonald, senior research practitioner at the Greater ManchesterNeurosciences Centre, explains her involvement with a pain assessment study andits anticipated role in finding new treatments.

We have already had great supportfrom people attending clinics. In fact, werecently analysed information collectedfrom the first 29 people with Parkinson’sdisease who experienced pain. Wefound that nearly 40 per cent reported atype of pain called neuropathic pain,which requires different treatment to thekind of pain that typical over-the-counterpreparations are designed for. Thepresence of neuropathic pain was alsoassociated with increased levels ofanxiety. We now aim to perform thesame assessments in people withMSA and PSP, which will allow us to

compare types of pain in theseconditions to those in Parkinson’sdisease. In the longer term, we will usethe research findings to support fundingapplications for clinical trials ofmedicines to treat pain.

As the British philosopher, AlanWatts, once said, “We cannot be moresensitive to pleasure without beingmore sensitive to pain”. Alleviatingpain and anxiety would certainly play arole in helping an individual reach thebest quality of life possible. We hopethat our multi-disciplinary team canachieve a step towards this goal.

Are you interested in being involved in this study?

People who want to be involved:

• must be under the care of a consultant neurologist or specialist nurse atthe Salford Royal (formerly Hope) Hospital

• must be able to give informed consent to be involved in the study

• must have a diagnosis of either MSA, PSP or Parkinson’s disease

The only ethical issue stopping people being involved is if they have dementia.

People will need to be able to express opinions in response to many questions,so people with very severe speech difficulties may struggle. However, theresearchers are experienced in working with people who have speech difficultiesand will do their very best to accommodate those with such problems who dowish to take part. It may be helpful for a relative or carer to attend.

What is involved?

Up to 45 minutes spent:

• Answering questions about demographics (age, medication, etc)

• Answering questions about pain (type, location, frequency, etc)

• Answering questions about mood and anxiety

• Answering questions about how disease is perceived

• Completing a short assessment of movement, like that carried out inclinic appointments

A Participant Information Leaflet can be obtained from Kathryn McDonald,Senior Research Practitioner, Greater Manchester Neurosciences Centre,Salford Royal NHS Foundation Trust, Manchester. You can also emailKathryn on [email protected] or telephone on 0161 206 8508.

Helping people to getthe best quality of life

Carer news


Respite breaks are being offered tocarers in an initiative run by Saga.

The Saga Respite for Carers Trust willcover the cost of holidays for peoplewho care for their relatives and willensure continuity of care for the personwith MSA. Hundreds of holidays areprovided, including river and oceancruises, UK and European breaks andmore exotic locations further afield.Saga will also provide spending moneyand travel insurance where required.People will be able to nominatethemselves or can be nominated byothers.Key criteria for nomination are:• The carer must be over 50

(although the person they look aftercan be any age)

• The carer should have been caringfor someone for over 12 months

• The carer should not have taken aholiday away from their caringresponsibilities within the last year

Nominations invited forrespite holidays

I provided care for my wife mainly at our own home for eight years before she waseventually diagnosed as an MSA sufferer. She then became a full-time resident in a nursinghome to ensure her receipt of 24-hour care. She remained there for the last two years’ ofher life, but I visited daily to continue my share of the caring. I learned many usefulfacts and improved my caring skills by researching on the internet about her multitudeof ailments.

Since my wife’s death, I have learned that a number of the useful facts, which I onlydiscovered through tedious enquiries, are now contained in the booklet It’s all free for seniorsby John Clarke (new edition 2008 - ISBN 1-903904-16-1), published by the Windsor Group,Hamilton House, 2 Station Road, Epping CM16 4NA. It can be purchased on Amazon for £7.50.

The booklet contains so much good advice which I had managed to acquire the hard way indribs and drabs. I strongly recommend every senior citizen to possess, read and follow its recommendations asnecessary for their personal needs.

If you would like to share your tips and recommendations for making the caring of a loved one with MSA a littleeasier, please send them to the office or email to [email protected]. Please keep your contributions to no morethan 100 words. We look forward to hearing from you!

Our second contribution to our new Sharing the Caring column has been sent in by Mr E Sparrow from Dorset.

Sharing the caring

Nominations can be made onlineat www.saga.co.uk/health/carers fromJanuary to August 2010.

Alternatively, nomination forms canbe obtained by writing to: Saga Respite

for Carers Trust, Saga Building,Enbrook Park, Folkestone, Kent CT203SE, or by calling 01303 771111 andasking for the Saga Respite for CarersTrust.

Regional support


EssexOur last meeting took place in theGreat Tey Village Hall on Monday, 26October when 38 of us sat down to ourshepherd’s pie and pavlova or breadand butter pudding, and three more

joined us after lunch. That is notcounting Sue, Christopher, Marian andAmanda who were so busy lookingafter us that they didn’t have time to sitdown! On this occasion five newfamilies joined us and were warmly

welcomed. Unfortunately the Trust’sspecialist nurse, Samantha Pavey, wasunable to join us, but havingpreviously warned everyone that shewas not coming, it was encouragingthat so many turned up on the

Contact point

Mrs Jane HandyTel: 01726 74792Or, Ms Jan PearceTel: 01726 861361

Dennis WestripTel: 01271 378273

Mrs Elizabeth BrackenburyTel: 0115 933 3083Or, Mr Ian JonesTel: 0115 919 [email protected]

Lady Laurelie LaurieTel: 01206 210 410

Ms Janice DaviesTel: 01242 224617www.thehewlett.co.uk/index.htm

Samantha PaveyTel: 020 3371 [email protected]

Mrs Ann McLennanTel: 01704 568 [email protected] information on page 12

Ms Karen WalkerTel: 077103 12552Or, 01274 861 947

Region

Cornwall Group

Devon GroupNext meeting in March

East Midlands GroupMeets twice per year, next meetingin April

Essex GroupMeets twice per year, next meetingin April

Gloucester GroupMeets (possibly) twice per year

Greater Manchester GroupMeets (possibly) 3 times per year,next meeting in March

Lancashire & Merseyside GroupMeets 4 times per year, nextmeeting in March

Yorkshire & Humber GroupMeets twice per year, next meetingin April

Contact details

In the first instance, please phoneor email [email protected]

In the first instance, please phone

Holme Pierrepont HallHolme PierrepontNottsNG12 2LD

The Old Rectory,Little Tey,Colchester, EssexCO6 1JA

The Hewlett,Harp HillCheltenham,GloucesterGL52 6QG

In the first instance, pleasephone or email

72 Lynton RoadHillside,SouthportPR8 3AP

In the first instance, pleasephone or [email protected]

Regional Support Group ContactsFurther information on support groups can be found on the SMT website (www.msaweb.co.uk/) under ‘our services’.

Reports from our support groups

Regional support


DevonWe held our second meeting at theBaptist Church Hall in Cullompton onFriday, 6 November, and had a verysuccessful turnout with 12 people.

It was good to see four newmembers, two from Plymouth and twofrom Wedmore in Somerset. A lot of

ideas and different aids were discussedto help with the care of MSA sufferers.Tea, coffee and light refreshmentswere laid on for everyone, and manythanks to Brenda and all the carers fortheir help.

It was agreed that these informalmeetings were a great help and a

chance for everyone to meet socially. Asuggestion was made that we couldinvite a local healthcare professional totalk at a future meeting, and it wasagreed that the next meeting would beheld in March at Cullompton.

DennisWestrip

East MidlandsWe had a very jolly meeting. We werevery pleased to welcome a newmember, and some for the second time,as well as our old-timers. EileenStrathnaver, Chair of the Trustee Board,came from London and talked about thehistory and growth of the Trust. Shetold us about the appointment of ourExecutive Director, Nickie Roberts,and about the move from St Mary’sHospital to Black Prince Roadin Vauxhall, London. This is suchexciting news, and means we will reallybe able to grow and be far more

help to sufferers from MSA throughoutthe country.

I want to highlight here the existenceof communication aids. There have been

articles in SMarT News on the subject,and I believe the earlier you get aLightwriter the longer it can go on beingof use to you. With modern technologythey are improving all the time. Theyreally are such a help to people sufferingfrom the frustration of difficulties of longand difficult conversations.

We had our usual tea and raffle, towhich everyone gave very generously.We meet again here on Wednesday, 28April from 2-4 pm. We are lookingforward to seeing you all.

Elizabeth Brackenbury,SMTTrustee

CornwallSince the last SMarT News we havenot held a meeting although we haveeach received telephone calls. Wehave a problem in that we have MSAfamilies at each end of Cornwall –some in the Lands End direction and

others near the Cornwall-Devonborder. This is almost 100 miles apartso there is no mutually convenientmeeting place.

We would like anyone who wouldlike a meeting to contact us so that wecan make arrangements in the right

location for them. Any othersuggestions to keep our group goingare also welcome. We are stillavailable by telephone and email foranyone who would like to contact usin that way.

Jan Pearce & Jane Handy

day and the meeting went very well.This was largely due to Helen

Dunnell, to whom we are all extremelygrateful, who offered, with the help ofher daughter Claire, to hold a round-table discussion. This proved to be amost useful exercise. Everybody joinedin and many helpful hints wereexchanged. This lasted well over anhour and was finally brought to a closeat 4 pm by the arrival of tea and cakes.We held a small raffle which raised £97for the Trust and, during the afternoonwe also sold nearly 50 packets of SMTChristmas cards.

Our final guests left the building at5 pm, from which we gathered it hadbeen a happy and successful party. Weare looking forward to the next one

which will probably be on Monday,12 April, but this will be confirmednearer the date.

Lady Laurelie Laurie

If you are interested in borrowing a

Lightwriter, please ask your speech

and language therapist to contact the

Trust office

Regional support


These support groups are run entirely by members of the Trust for the benefit of those whose lives havebeen affected by a diagnosis of MSA. If you are interested in the possibility of running your own localsupport group, we would warmly welcome your enquiries and will assist in providing relevantinformation and guidance on how to start one up. Please contact the office on 020 7940 4666.

For information on future support group meetings, please see our regularly updatedEvents Diary on the website. Please go to www.msaweb.co.uk/events.htm

Yorkshire and HumberThe Yorkshire group tried out a newvenue in October 2009, meeting in theLady Chapel at St. Leonard’s Church inScawsby, Doncaster. It is hoped to usethis venue for our next meeting in April.Our thanks to Reverend Pay who verygraciously let us use the hall for ourmeeting without charge. The venue isclose to the A1(M) on the A635Doncaster Road. There is good accessfor wheelchairs and the hall was lovelyand warm when we were there.Hopefully at our next meeting we willbe enjoying warmer weather.

We welcomed some new membersto the group at our last meeting and hopethey found it helpful to be able to sharetheir experiences with other members.

Thanks also to one of our new memberswho provided home baked buns!

Some of the issues discussed at thismeeting included how to find out aboutand share information about whichhospitals offer better services for MSApatients, and how they’re provided. Thegroup shared their concerns that theycan only find out about types ofservices that might be available to themwhen they hit a particular problem, andfelt that often they do not getinformation that would help them toprepare for a problem if it was given tothem in advance.

One of our group members alsohighlighted to us the service offered bythe Royal British Legion to ex-servicemen and women, which is to

The very popular Lancashire & Merseyside Group islooking for a new Support Group Leader to carry onAnn McLennan’s fantastic work in setting up the groupand establishing its solid foundations.

If this is something you think you might beinterested in, please contact Ann on 01704 568353 oremail her at [email protected] and she will behappy to let you know what’s involved!

You can also call the Trust’s office on 020 7940 4666for further details.

Lancashire & Merseyside

� Derek Bayliss� Lesley Boulton� George Bryan� Terry Buckland� Ann Chandola� Barbara Davis� Brian Dunning� David Edge� Anne Edler� Malcolm Ford (2008)� Tony Foster-Taylor� Carole Grig� Doreen Hatfield� Alex Hay� Beryl Herridge

� Wendy Horniman� Brian Howes� Terry Jones� John Joyce� Duncan MacDougal� Colm Maguire� George Moorhouse� John Muir� Eileen Mullarkey� Kathleen Nunn� Ramesh Prajapat� Donald Price� Carole Reade� Graham Roberts� Brian Rodgers

� Sandra Scholes (2008)� JiePie Schouppe� Denis Sharp� Penelope Sheppard� Shirley Smith� Jennifer Thomas

� Michael Werrett� Mary Wheeler (2008)� Clifford Wright

In Memory If you have informed the SMT of a loved one’s death and their name does not appear below,please accept our apologies. Let us know and we will rectify this in the next edition. Some members passed away earlierthan 2009/10 and the corresponding year is shown in brackets next to their name.

muchloved.commuchloved.com is a website dedicated to offeringpersonalised website tributes in memory of a lovedone. MuchLoved is a UK registered charity set up tohelp with grieving and healing. The website can be

used without charge or obligation. To visit the websitego to www.muchloved.com

provide a mobile scooter to any whorequire one. Not only do they pay for it,they will also service the scooterannually. This seemed a very good offerof extra support for those MSA patientsthat have enough mobility to use ascooter and some of our membersthought they might look into thisscheme.

The date for the next meeting willbe in April. As soon as the meeting isconfirmed, a letter will be circulated forall members in the area. I look forwardto welcoming some of you at the nextmeeting; whether you are seasonedattendees or new members, a warmwelcome awaits.

Karen Walker,SMT Trustee

This edition of SMarT Newscovers the period until mid-January 2010.


Fundraising

Kate swims Lake Windermere forher Dad!Kate Grimshaw braved the waters ofLake Windermere in Cumbria as part ofthe 2009 Great North Swim, and raisedover £1,116 for the Trust.

Kate’s Dad, Eric Tarrant, wasdiagnosed with MSA as he was about toretire some four years ago. Kate waskeen to raise money for the Trust, so sheentered last September’s Great NorthSwim covering one mile of LakeWindermere. She was one of about6,000 people taking part over two days.The first wave of 250 swimmersentered the water at 9 am on Saturday,12 September and the final wave of 250swimmers entered at 3.30 pm on theSunday, so it must have been quite aspectacle on the usually calm waters ofthe lake!

Congratulations go to Kate who wassuccessful in raising over a thousandpounds, and managed to complete theswim in 40 minutes and one second!

Great North RunLondon SMT member, Allan Comette,has yet again amazed us with hiscombined running and fundraisingskills! Allan has raised over £1,488,having taken part in last year’s GreatNorth Run. With Gift Aid, that sumincreases to £1,894 which reallydemonstrates the value of encouragingyour sponsors to consider supportingyou with Gift Aid too.

Thank you again, Allan!

Wendy Horniman spent many happy hours with her family and friends inBridlington where she had a caravan. Now a bench has been placedoverlooking the sands and sea in memory of Wendy, who passed away inJanuary of last year.

Our thanks to Wendy’s daughter, Nicola Davison, for sharing this lovelyphotograph of her Mum’s bench and also to her family and friends forraising an impressive £212.59 for the Trust at a recent car boot sale.

A place to remember Wendy

(l-r) Alison Clifton, Louise Eichert, Gavin

Brett, Daniel Vigar and Nicki Hawkins

... and the back of Alison’s vest

The view from Wendy’s bench...

... and the Great South RunFive determined runners joined forcesto take part in last October’s GreatSouth Run, one of the group havingalready participated in the GreatNorth Run!

Alison Clifton says, “We were all

running for your charity in memory ofGavin’s Mum, Paula, who sadly lost herlife to MSA, and I was also running formy Uncle who also lost his life toMSA a couple of years ago. Between uswe believe we may have raised justover £1,200.”

Yet again, SMT members have proved themselves to be fantastic fundraisers!

We are always amazed and genuinely appreciative of the wide-ranging

efforts that SMT members and their families make in fundraising. Here are

some recent achievements...

Fundraising


We are very grateful for allyour fundraising activities.The Treasurer puts in a

small plea however. Couldany cheques be madepayable to ‘SarahMatheson Trust’(not MSA).

Cakes and raffles go down well inCounty DurhamAlan Alderson’s raffle fundraisingevent has so far raised over £400 for theTrust. Alan’s wife, Rita, has MSA andfamily and friends got together tosupport the work of the Trust byholding raffles at two local clubs.

One raffle was held in the localLadies Club, organised by Rita’s sisterwho is the Club Secretary, and the otherin the local over-60s club run by Alanand Rita’s local councillor. Both

Winning ways with cakes

Paddlers choose SMT as their Charity of the Year

The Port of Plymouth Canoeing Association (PPCA) chose the Trust as its 2009 Charity of the Year and to-date has raisednearly £2,000 at its annual major fundraising event, a sponsored paddle.

Watchers from the shore saw a colourful array of kayaks crossing the Sound as 27 paddlers set off on a “long paddle”heading out to Cawsands, skirting the back of the Breakwater to Bovisand and ending up on Mountbatten Beach –covering just under 12 miles and taking five hours to complete. Twenty-five equally intrepid paddlers took part in a“short paddle” of three miles to encourage those new to the sport to participate. All in all, a fantastic turnout of 52paddlers in short kayaks, long kayaksand other boats made a colourful andimpressive sight.

Many thanks to everyone at thecanoeing association, and in particularto Club member and senior coach,Malcolm Gilbert, who nominatedthe Trust as the Club’s 2009 Charity ofthe Year.

Malcolm Gilbert receives a cheque from PPCA Club leader, Terry Calcott, on behalf of

the Sarah Matheson Trust

were also donated by Alan, Rita, theirfamilies and friends.

Thank you to all in CountryDurham... the cakes look delicious!

organisers are cake decorators, andeach decorated and donated an icedChristmas cake to the raffle. Prizes

SMarT News – The newsletter of the Sarah Matheson Trust

And remember, the Trust has producedan A3 size MSA/SMT poster for

anyone wishing to use it for fundraising.We send them out in protective cardboardtubes. The posters have been welcomed bythose who have requested a display thatdescribes MSA and the work of the Trust.Please feel free to phone the office if youwould like one: 020 7940 4666.

...and don’t forget we have boxes and badges available too!

Posters for fundraising events

15

Fundraising

Cycling from England to Francein six daysIt’s not too late to get involved with theCycle to Cannes charity challenge!This amazing fundraising event runsfrom 11-16 March and tests theendurance and stamina of riders asthey travel from the South Coast ofEngland, across France to Cannes.Cyclists will ride a minimum of 130kms a day. Nick Hanmer, chief

Past celebrations in Cannes

executive of Cycle to Cannes, says“The ride is fantastic fun - anadventure with great camaraderie andis designed for fit commuters as wellas hardened roadies.” The Trust is veryfortunate to be one of the challenge’score charities, and received £20,000from the 2009 ride.

If you’d like to find out more,please write to Cycle to Cannes, c/oWordsearch, 85 Clerkenwell Road,

Well, you might get some ideas from“Just Events”, fundraising challengesrun by Across The Divide, which allowyou to raise money for the charity ofyour choice. Their flagship event is JustWalk, which sees hundreds offundraisers take to the glorious SouthDowns each year. Further afield, theysuggest a charity dog sleddingadventure that will take you and yourteam of dogs into the Arctic Circle withthe chance to see the famous NorthernLights. Their Just Trek adventures takeyou to Everest Base Camp, to the top ofMount Kilimanjaro or to the ancientInca Capital of Machu Picchu in Peru. Intheir words, “The choice is yours!”

If you’d like to know more aboutfundraising through Just Events, contactAcross the Divide on 01460 30456 oremail them at [email protected] information can also be found ontheir websitewww.acrossthedivide.com.

There are still spaces available for a walking event across the SouthDowns, and you can choose to participate in a 10km, 20km, 40km or awhopping 60km fundraising walk. There is a registration fee, but apartfrom that all funds go to your chosen charity. The event organiser,Across The Divide, provide help in preparing you for the walk with

training and fundraising advice. Duringthe event, they provide a medicalsupport team, safety back-up, eightpower stations along the route withfood, drinks, support and toilets, apacked lunch and a Just Walked t-shirt.

The Trust’s executive director, NickieRoberts, is training hard in preparation

for the 26 mile marathon walk. She will be walking the 40km (26 miles)on her 50th birthday in May and says, “I’m looking forward to thechallenge and will feel I’ve really earned my birthday celebrationchampagne at the end of the walk!” Nickie has set up a fundraisingpage on www.justgiving.com/nickieroberts and hopes to raise funds forthe Trust.

If you’re interested in joining one of the walks on Saturday, 15th May,contact Gemma at Across The Divide on 01460 30456. There’s still timeto train and fundraise!

Putting the “fun” into fundraising!Are you interested in taking part in a fundraising event, but are not sure what to do?

London EC1R 5AR or email Nick [email protected].

16

Information, Support, Education andResearch in Multiple System Atrophy.

Providing services to people with MSA,families, carers and professionals.

� Information leaflets and newsletters� Specialist nurses� Telephone help line� Regional support meetings� Training and education sessions� MSA research� Communication aid loans� Welfare gift scheme

Patrons:Sir Roger Bannister CBE FRCPProfessor CJ Mathias DPhil DSc FRCP

Trustees:Nicholas BuntMrs Robin BrackenburyMichael EvansValentine FlemingMs Darcy HareAlexander LoehnisGeoffrey MurrayEileen Lady Strathnaver OBELady Harriot TennantKaren Walker

Executive Directorand SMarT News Editor:Nickie Roberts

All correspondence andenquiries to:Sarah Matheson TrustSouthbank HouseBlack Prince RoadLondon SE1 7SJTel: 020 7940 4666Fax: 020 7940 4664www.msaweb.co.uk

The Trust is financed entirely byvoluntary donations.Registered Charity Number 1062308

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Current MSA members 836Other patient members 35Relatives and carers 478Professionals 1444Others 178Total 2971

Membership Numbersas of January 2010

Become a regular donorDonations can be made to the Trust by setting up a monthly or annual direct debit.Regardless of size, all donations help us maintain and improve upon our services.Don’t forget to Gift Aid any donations to increase the value of the donationgenerously given.Become a fundraiserEvents such as coffee mornings, car boot sales and a wide variety of sponsorshipopportunities bring the SMT valuable income every year. New ideas are alwayswelcome.Use our online fundraising/donation facilityWe have the facility for you to use an online fundraising package on:www.justgiving.com. This facility can be used for anything from a personal occasionto an in memorium for a person’s life.Contribute to SMarT NewsSharing your experiences and tips with other members helps keep it your newsletter.Form a local SMT groupLink with the SMT office and independently run a group to provide local groupsupport.Raise awareness about MSAShare our information with family, friends and the health professionals you meet.Gift Aid It!Did you know that if you are a UK tax payer, we can increase the value of anydonations made to the SMT. This Gift Aid could raise the SMT’s income by as muchas £20,000 extra per year. We have Gift Aid forms available at the SMT office.

Don’t forget: the SMT is your charity.Donate now!If you would like to make a donation to the Sarah Matheson Trust please complete theform below and send to the office. If you are a UK taxpayer we can increase the valueof your donation by 28% by reclaiming the tax as Gift Aid.

The Sarah Matheson Trust endeavours to ensure the accuracy of articles inSMarT News. Please note, however, that personal views and opinions

expressed are not necessarily endorsed by the Trust.

Ways to support the SMTand help the Trust grow

Next issue All articles to be received by the office by 30th April 2010

Name

Address

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Signature Date

� I would like to make a regular donation by standing order.Please send me the appropriate form.

� I would like to make a donation of £and enclose a cheque made payable to ‘Sarah Matheson Trust’.

� I am a UK taxpayer and wish all gifts of money that I have made in the pastsix years and all future gifts of money that I make from the date of thisdeclaration, until I notify you otherwise, to be treated as Gift Aid donations.

PLEASE MAKE ALL CHEQUES PAYABLE TO ‘SARAH MATHESON TRUST’

msa news (issue 27)

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