MSA News (issue 30)

You can tell Spring is upon us – there’s a sense of change in the air,including here at the Trust. Two of our longstanding Trustees havestood down from the Board – Lady Harriot Tennant and ElizabethBrackenbury. Both have been staunch supporters of the Trust and its

work for many years, and our heartfelt thanks go to both for their commitment overthe years. We are fortunate that Elizabeth will be staying with us as East MidlandsSupport Group Leader. On page 11 of the magazine she describes how she haswatched the Trust grow from anidea amongst friends and hersister, Sarah Matheson, to a stillgrowing charity supportinghundreds of families living withMSA.We also look at some of the

practical issues of interest tocarers, particularly the juggling actof caring and working, and justbefore we went to print theGovernment published its WelfareReform Bill and we will follow upon this on our website and infuture issues of the magazine.However, it appears that, for carerswho are currently means-tested,the Carer’s Allowance will remaina non means-tested benefit andwill be outside the new UniversalCredit. Carers currently in receiptof the Carer Premium means-tested benefits will be moved ontothe Universal Credit. Experts in this field, Carers UK, say they do not oppose thisin principle, as these carers are already means-tested and could be better off if theyare able to juggle work and care. They should be able to keep more of their benefitas they earn. We will update you as we learn more about the Bill.Spring change has also come to our website, as at the end of February we

went “live” with a new and more informative version. Please check outwww.msatrust.org.uk to have a look and also to find ways of getting involved,including helping us to raise awareness of MSA and the Trust.And on the theme of awareness-building – thank you so much to all the

members who helped draw attention to Rare Disease Day on 28th February, fromtalking to local journalists, linking to our new Facebook page and fundraising. Asthe saying goes, “Every little helps!” – and together we will get MSA on the map!

Nickie RobertsExecutive Director

Contents

Carers support 2–3

Medical researchand the Trust 4–5

Guide – hospital 6–8visits

Herbal remedies 9

Trust’s new website 10

The Trust’s early days 11

Regional groups 12

Fundraisers in 13–14action

Noticeboard 15In Memory; HonoraryTreasurer needed

How to get involved 16

Multiple System Atrophy TrustFounded by Sarah Matheson

The official magazine of the Multiple System Atrophy Trust

Issue 30 Spring 2011

Wanted –Honorary Treasurer!Please see page 15 for details

The Multiple System AtrophyTrust provides a support andinformation service to peoplewith MSA, their families and

carers, healthcare professionalsand social care teams.

We also sponsor and supportresearch into MSA.

Lady Harriot Tennant

MSA News Winter 12.qxd:SMarT News Autumn 2006 mike 22/2/11 09:51

MSA News – The official magazine of the Multiple System Atrophy Trust – Spring 20112

Carers UK have compiled a guide, Looking After Someone, which covers a range ofareas of interest to carers. Here’s their advice on carers in the workplace.

Working and caring

Juggling work and looking aftersomeone can be difficult. Having

an understanding and knowledgeableemployer or manager can make thiseasier. It is helpful to have access toinformation and advice in yourworkplace. Ask your employer if theyhave a carers’ policy. There may be arange of ways they could help you, eg,by providing access to a telephone.Companies sometimes operate counsel-ling services and have advice packs forcarers. Trade unions can also be a goodsource of information and support. Youhave certain legal rights as a carer in theworkplace.

Flexible workingMost working carers now have the legalright to request a flexible workingpattern from their employer to helpthem to balance their work and caringresponsibilities. There is a set procedurethat employers must use to considersuch requests. As a carer, you have thisright if:• you are an employee, and• you have worked for youremployer for at least 26 weeks, and• you are a parent with a child(ren)under 17 or a disabled child(ren)under 18, or• you are caring for an adult (over18) who lives at the same addressas you. If the person doesn’t livewith you, then he or she must be arelative

Flexible working could include:• flexible starting and finishing times• compressed working hours (eg,working 35 hours over a 4 dayperiod)• annualised working hours

• job sharing, term-time or part-timeworking• home-working or tele-workingTo apply, write to your employer askingfor the changes you would like and whythey will help. You will also need toexplain the effect, if any, you think thechange might have on your job and howyou think this could be dealt with. Forexample, could a colleague be trainedto take on additional tasks? You canonly make one request per year and, ifaccepted, the changes will mean apermanent change to your employment

contract, unless agreed otherwise, so itis important that you think carefullyabout any financial and practicalimplications before you apply. If youremployer refuses your request, whichthey can on certain business grounds,you can appeal their decision.

Time off in emergenciesYou have the right to take a“reasonable” amount of time off workto deal with an emergency involving adependant. This right also includessome protection from victimisation anddismissal. It is at the employer’s

Carer support


Carers support

MSA News – The official magazine of the Multiple System Atrophy Trust – Spring 2011 3

discretion whether the leave is paid orunpaid. Situations where this leavemight be taken include:• a disruption or breakdown in carearrangements• if a dependant falls ill, has beenassaulted or has an accident,including when the victim is hurt orupset rather than physically injured• to make longer term arrangementsfor a dependant who is ill orinjured• to deal with the death of adependant

Jobcentre Plus support for goingback to workIf you want to balance work with caringresponsibilities, Jobcentre Plus may beable to help you now or later if yourcaring responsibilities change. Forexample, you could go on a course tohelp you get a job or improve yourskills. Jobcentre Plus contact details canbe found in your telephone directory.

Giving up workMany people feel forced to give upwork when faced with intensive caringresponsibilities. It is very important thatyou think of all the options beforetaking this step. It can haveimplications on your income and

quality of life, but also your futurepension entitlements.A carer’s assessment must look at

how you are managing to balance yourcaring responsibilities with youremployment. If you are thinking ofgiving up work to care full-time, ask fora carer’s assessment (or reassessment ifyou’ve already had one). The fact that

your job is at risk means that socialservices must treat you as a priority andconsider what help they can provide toenable you to continue working, if thatis your wish.

Protection from discriminationThe new Equality Act came into forcein October 2010. It brings togethervarious pieces of legislation on equalityinto one single act, and extends somerights to groups not previously covered.For the first time, carers have protectionfrom direct discrimination. This meansthat employers and providers of goodsand services must not treat carers lessfavourably than those without caringresponsibilities.

This information has been reproducedfrom the Carers UK guide, Looking

After Someone 2010/11

Further informationFor more information, visit www.carersuk.org, your local Citizens Advice Bureau,the Government Equalities office (www.equalities.gov.uk) or contact theEquality and Human Rights Commission:

• England 0845 604 6610 (Textphone: 0845 604 6620);

• Scotland 0845 604 5510 (Textphone 0845 604 5520);

• Wales 0845 604 8810 (Textphone 0845 604 8820).

To find out the current position in Northern Ireland, contact the EqualityCommission there on 028 90 890 890.

“You have the rightto take a

‘reasonable’ amountof time off workto deal with an

emergency involvinga dependant.”

Getting help with continence and laundry servicesIf you are dealing with incontinence problems then your GP should be your firstport of call who, along with your local Primary Care Trust, can provide support,advice and information. Members of the primary care team include continenceadvisors or specialists, as well as occupational therapists, physiotherapists anddieticians.

The continence advisor may be able to provide small items and other equipmentwhich can help, including plastic or PVC covers to protect beds, disposable orwashable continence pads and waterproof pants.

Your social services department should be able to provide small aids andadaptations for the home, including hand rails, commodes and raised toilet seats. Some departments provide alaundry service for people who have incontinence, and you should contact your local department for moreinformation and, possibly, an assessment of your personal situation.

You can also buy your own continence products ranging from pads and pants to more specialised items. The Bladderand Bowel Foundation (www.bladderandbowelfoundation.org – Specialist Continence Nurse helpline: 0845 345 0165.General enquiries: 01536 533255. Fax: 01536 533240. Email: [email protected]) provides anindependent directory of incontinence products.


Research


When you give money for medical research, do you knowwhat happens next? How does a medical charity decidewhich scientists to fund, and to do what? And, veryimportantly, who ensures their projects are worthwhile?Trutsee and chair of our research advisory panel,Clare Fowler, explains

Medical researchand the Trust

Securing funding is a major pre-occupation for anyone running a

research laboratory. It is somethingwhich is done by obtaining grants. Thelaboratory director needs to have a wellthought out plan of what, in the contextof current scientific understanding,their team of research workers canusefully do and then apply for grants. Itis through awarding grants thatdonations get to those who are doingresearch. Each grant will only last for afinite time, perhaps three years, but tomaintain momentum based on adiscovery, a laboratory needs to have acontinuous supply of funding to keepstaff in post and so avoid loss oftechnical expertise which may havetaken many years to build up. Moneymust be found to pay laboratory staff,buy equipment, pay laboratoryexpenses and support the infrastructureof the organisation (usually a uni-

versity) within which they work. It’s atough job!Funds are in very short supply,

perhaps worse now in “AusterityBritain” than ever before, and thingsmay get worse: donations to charitiesare down all round and as peoplestruggle to make ends meet with risingcosts and perhaps precarious incomes,giving money to a charity to fundresearch may be a low priority.

Are donations being well spent?Donors to medical charities must feelconfident that their gifts are beingproperly spent, and there are severalwell-defined processes which have tobe followed for that to be the case. Acharity making research fundingavailable must advertise this widely inappropriate journals where all potentialresearchers will see the “call forfunding” in good time. A deadline is setand applicants complete a formdescribing the research work theyintend to carry out, the scientificrationale for that work, a detailedcosting and the justification for theircosts. These applications are thencollected in, and assessed by, chosenexperts in the field who will evaluatethe proposed projects against thebackground of known science. Theytake into account the likelihood of theproject producing “deliverables” based

on the feasibility of the proposals andthe track record of the applicants. Theexperts must declare any conflict ofinterest they might have with theapplicant, and must never be in aposition of awarding money tothemselves. The experts’ opinions arethen reviewed by the charity’s researchadvisory panel (as is the case with theTrust) or its equivalent, whichprioritises the applications for fundingbased on the expert evaluations.Recommendations are given to trusteesof the charity, who offer fundsaccording to money available.

Competitive processThere are some variations on thisgeneral scheme outlined above, but thatis now established as being the fairestmethod of funding for what areconsidered to be the most worthwhileprojects. However the number of grantapplicants and the sums of moneyrequested greatly exceeds fundingavailable, be it either from agovernment funded source such as theMedical Research Council or a small

“The number ofgrant applicantsand the sums ofmoney requestedgreatly exceeds

funding available.”

Professor Clare Fowler


Research


charity such as the Multiple SystemAtrophy Trust. This means thatresearchers spend a lot of their timewriting grant applications which areunsuccessful – a few years ago it wasgenerally reckoned that only one in 10applications was successful and thesituation is probably worsening. It willbe obvious from the description of theprocess that it is essentially com-petitive, and although the success orotherwise may be affected by the abilityof the applicant, it may be difficult forthat applicant if the answer to thequestion – “is it medically important andare a lot of people affected?” – is not“yes”. So, if we want to undertakeresearch specifically into MSA, theTrust must make funds available. That isnot to say that MSA will only beresearched by money that was specific-ally so given because that is not thecase, and there have been recentinstances of discoveries being madeabout MSA when researchers wereinvestigating other neurodegenerativediseases, but money restricted to MSAfunding certainly helps a lot.

Trust grantsIn 2005 the then Sarah Matheson Trustidentified the need to establish aResearch Advisory Panel (RAP) which

could develop the Trust’s support forresearch and oversee the allocation ofits grant money. A RAP was appointed(see Box 1 for list of members) andtheir first task was to decide what thecentral aim of research should be. Theunanimous view was that we should tryand attract “proposals for researchaimed at discovering the cause ofMSA”, rather than spending the moneyon a number of smaller patient-orientated projects.The Sarah Matheson Trust nomi-

nated Ms Darcy Hare as the Trusteeappointed to liaise with the RAP andassistance from the Sara Koe PSPResearch Centre was gratefullyreceived, allowing us to modify theirgrant application forms. Subsequentlywe received assistance from Parkinson’sUK with the grant assessment process.The grants which have been

awarded by the RAP since 2005 aresummarised in Box 2 and although it isnot the purpose of this article to detailwhat has been discovered through thoseprojects, it is enough to say that theirprogress has been impressive and theyare contributing in a significant way toworldwide efforts to discover moreabout MSA, its cause, how itsprogression might be halted and apossible cure.

1st UK MSA researchers meetingAlthough most of the funding has so farbeen given to researchers in Londonand the Institute of Neurology specific-ally, there has been great added value

from this. Under the chairmanship ofDr Janice Holton an “MSA ResearchGroup” was formed which has monthlymeetings in the Department of Neuro-pathology. Results are reviewed anddiscussed, but from these meetingscame the idea of arranging the first UKMSA researchers meeting. Theintention of this is to bring together allthose in the UK engaged in MSAresearch. It is perhaps surprising thatthis meeting can claim to be the firstUK MSA researchers’ meeting andalthough this really is the case, it is notto say that researchers in this field havenot met before. They almost certainlyhave and they know of each other’swork but, to-date, meetings dedicated toMSA research have been abroad ratherthan here in the UK. It is hoped thatfrom this meeting people will be able toestablish collaborations and plan toshare resources as well as discuss theirideas. This meeting is being planned for4 November 2011 at Queens Square inLondon and preliminary soundingshave produced a very positive responsefrom the research community. Certainlyany researcher reading this who wouldlike to attend would be most welcomeand should send me an email ([email protected]).

Reports about this meeting will becovered in future issues of MSA News

– so please watch this space!

Box 1. Research AdvisoryPanel (RAP) membersFrom 2005• Prof David Burn (Newcastle)• Prof Clare J Fowler (London)• Prof John Newsom-Davis

(Oxford) (died 2007)• Prof Martin Rossor (London)

From 2007• Prof Nick Wood (London)• Prof Gregor Wenning (Innsbruck)

Box 2. Grants awarded byRAPJan 2008• Prof Tamas Revesz and Dr Janice

Holton (London) were awardeda one year grant

June 2008• Prof Henry Houlden (London)

was awarded a 3 year grant

• Dr Janice Holton (London) wasawarded a 3 year grant

Jan 2010• Dr Shahin Zibaee (Cambridge)

was awarded a 1 year grant


Guide – hospital visits

Going into hospital can be an anxious time for anyone and people with medicalconditions like MSA have additional considerations. Being prepared can make thingsmuch easier for you.

Going into hospital

The following are important:• Nil-by-mouth This is theterm that describes the periodof fasting (usually 6-8 hours)before an anaesthetic orprocedure. Being nil-by-mouth can mean that youbecome dehydrated which canworsen your symptoms. Toavoid dehydration you mayneed replacement fluids byintravenous infusion: ‘a drip’.Even though you may be nil-by-mouth, you may still beable to take medication thatwill help your mobility orblood pressure in preparationfor the procedure. Theanaesthetist or doctor candiscuss this with you.

• Blood pressure People whohave postural hypotension (afall in blood pressure whensitting or standing) often havehigher blood pressure

If you have a planned admissionyou may have some time to getprepared but it is worth preparingin case you have an unplannedadmission.

Take all the relevant informationabout your condition and currentmedication whenever you go tohospital, including out-patientappointments. Use a folder tostore all this information in oneplace. Many professionals youmeet may not be familiar withyour condition.

Know your medicationAsk your doctor or pharmacist togive you a printed list of all yourcurrent medication as this willhelp the hospital doctors lookingafter you. Let them know if youare on any trial drugs, unlicensedmedication or herbal/homeopathicremedies. It is worth taking asupply of your usual medicationswith you.

Making life easierDecide which equipment you need totake into hospital with you (eg, walkingframe, wheelchair, lightwriter) andlabel these. You may want to consideradding valuable pieces of equipment toyour household insurance.

GP involvementSome emergency admissions can bearranged through your GP who canarrange for the relevant hospital doctorto see you in the Accident andEmergency department. This will save

you having to see the Accident &Emergency department doctors firstand may reduce waiting time.

Investigations and surgeryThese can have an effect on yoursymptoms. Find out as much as you canabout the procedure, what preparationis involved, how long the procedurewill be and what the planned aftercareis. You may be asked to attend a pre-assessment clinic as part of preparingfor surgery or investigation. This is theideal opportunity to get the informationyou need and to let the staff have moredetail about your condition.

recordings when laid flat. This issomething the anaesthetist needs tobe made aware of. Continue tokeep your bed in the same position(head up tilt), although this maynot be possible for someprocedures or surgery. You mayfeel dizzy when you try to sit upafter you have been lying flat. Yourblood pressure control can also beaffected by lack of activity orexercise. Doing leg exercisesbefore you attempt to get out ofbed is advisable, as well as sittingup slowly. Inform the ward staff ifyou have blood pressure problems.





• Mobilising One of the priorities ofnursing staff and physiotherapists isgetting people up and about aftersurgery. This is to reduce possiblecomplications and to help yourrecovery. However, you may findthat your progress is slower thanother patients because of yourexisting condition. If you tire easilyplan short periods of exercise andactivity frequently, ie, little but often.Avoid being in the same position forseveral hours. Try to be active whilstin bed or sitting in a chair by doinggentle leg exercises. Advise thephysiotherapist if you have “good”and “bad” days or your best time ofday to carry out your exercises.

• Breathing It is important whileyou are less active to keep up thebreathing exercises that the

physiotherapists and nurses willshow you. You may have yourbreathing and oxygen levelsmonitored, especially if you haveany breathing problems when laidflat or if you snore loudly. You willneed to continue using any equipmentthat helps you breath at night.

• Infection Staff should be madeaware that you are prone toinfection (urine or chest) becauseof your condition. They will needto monitor this and may need touse preventative antibiotics. Peoplewith MSA may not experience ahigh temperature when they havean infection.

• Recovery times Being in hospitaland having surgery are majorevents for anybody. If you consider

Top tips round-up for going into hospital

Before you go:• Ask your GP to arrange hospital transport if you are unable to get there yourself (some hospitals will

arrange this with you directly but check with your GP first)• If you need help with communication or require an interpreter, let the hospital know beforehand• Make a list of questions you would like to ask the consultant/specialist• Take a copy of all your current medications with you (and/or take your medications)• Ask a family member or friend to accompany you if you would like them to• Take a spare MSA guide (available from the Trust) with you in case there are people at the clinic who

are not familiar with MSA

When you see the consultant/specialist:• Ask questions if there is anything you don’t understand, particularly medical terminology• Make notes if you feel that would be helpful, or ask someone to do this on your behalf• Ask if you can have a copy of any letters written about you - most hospitals offer this service• If you are prescribed medication, ask what benefits you might expect to see and what the potential

side effects are• Ask what happens next – eg, dates of further appointments• Ask who should you contact if you have any further questions/concerns• Ask when you can expect the results of any tests carried out and who can explain these to you

After your appointment:• Keep a folder with any letters relating to your appointment. This is helpful for future appointments,

sometimes medical notes are lost!• Your GP can explain the contents of any letters you receive if you are unsure what they mean• Book any tests and put the dates in your diary. Arrange transport as above• If there is anything you are still unsure of, call the Trust specialist MSA nurses for advice

the additional factors related toyour condition, don’t be alarmed ifyou need some time to recover.Convalescence will be an importantpart of your recovery.

• Discharge planning Makingpreparations for going home shouldstart on admission to ensure thateverything is in place to get youhome safely. Have with you details,including telephone numbers, of thepeople who help you at home. It’sadvisable to avoid discharge over aweekend if you rely on home careservices. You will need a supply ofmedication to take home. Follow-upcare may include visits fromcommunity nurses and therapists, aswell as a hospital appointment.See page 8 for a useful template tohelp prepare for your hospital stay




Communication

Sleeping

Moving around

Eating

Drinking

Bathrooms

Anything else?

Currentmedication

Allergies

Equipment

Do you ...• have a quiet voice?• need a nurse call bell?• use any communication equipment?

• What time do you go to bed andget up?

• How many pillows?• Head up tilt?• Do you need help turning?• How do you get to the bathroom?

• What equipment do you use?• Do you need help?• How far can you walk?• Do you have a best time of day?• Does your blood pressure ormedication affect your mobility?

Do you ...• have a special diet?• need special cutlery?• need help cutting food?• need help eating?• need to eat snacks?

• What do you like to drink?• Do you need a special cup or straw?• Can you pour drinks?• Do you need help to drink?• Do you need your drinks thickened?

• Where are they?• Can you get there alone?• Do you need help undressing?• How often do you go to the toilet?

You may find it helpful to give the following information to hospital ward staff (eg, copy andcomplete) so they can help to maintain your usual routine and include in your “care plan”

Things to think about Describe your usual routine

Useful telephone numbersMultiple System GP Specialist Social Worker/Care Manager MSA Nurse SpecialistsAtrophy Trust Samantha Pavey – 0203 371 0003020 7940 4666 Katie Rigg – 01434 381932



Complementary treatments

Using herbal remediesin health care

It is worth remembering that some ofthe most powerful medicines usedtoday in the pharmaceutical industryhave been derived from plant sources. Aherbal remedy can have serious sideeffects and interact unhelpfully withother medication being taken at thesame time, so if you are taking anymedicines it's important to speak toyour GP or pharmacist before takingany herbal remedies.There are different types of

therapies that use plants as remediesincluding:• Ayurveda, which affects your mindand body together with herbalremedies, yoga, massage, diet andmeditation

• Kampo, which uses similartechniques to Chinese medicineand involves the study of herbs tohelp illness• Traditional Chinese medicine,which works on the sameprinciples as Ayurveda and usesherbs to boost or disperse qi(energy)• Traditional Tibetan medicine,which uses herbal remedies aswell as diet changes and therapiessuch as acupuncture to helpillness• Unani-tibb, which has an emphasison restoring balance byencouraging healing from within• Western herbal medicine

Examples of specific herbs and theconditions they are used to treat includethe following:• St John's Wort can be used to treatdepression• Echinacea may be useful intreating the early stages of a coldin adults• Serenoa repens can provide someimprovement in symptoms of anenlarged prostate gland• An extract of hawthorn, used inaddition to conventionaltreatments, may be of benefit topeople with chronic heart failure• Ginger may relieve thesensation of feeling sick andvomiting• Melissa officinalis (lemon balm)and salvia officinalis (sage) mayimprove mental ability in peoplewith Alzheimer's disease• Horse chestnut seed extract can beeffective in treating circulatoryproblems• Certain herbs including petasiteshybridus (butterbur) may be aneffective treatment for hay fever,although more research is neededto confirm this.

Herbal remedies are made from plant materials used totreat disease and maintain good health, mostly as acomplementary treatment (one given alongsideconventional treatments). Because herbal remedies comefrom plants, and thus are naturally occurring, they areoften mistakenly believed to be harmless. MSA specialistnurse, Samantha Pavey, explains.

Samantha Pavey


10

Complementary medicines

Virtual support

10

Our new website went“live” at the end of

February – we hope you’llfind it informative andeasy to navigate. It coversa wide range of topics andinformation, with specificareas on the treatmentand management of MSA,different aspects of livingwith MSA including a sec-tion for carers.We have an area on

support groups. Thisincludes a map showingwhere local supportgroups are held withcontact details of supportgroup leaders, venues anddates of meetings.The results of our membership

survey (undertaken last year) showedthat over half of respondents wereinterested in joining a virtual supportgroup – partly to overcome travel prob-lems and for general convenience. As a

New website unveiled

Risks associated with herbalremediesHerbal remedies may interact withother medicines. For example, St John'sWort can interact with medicines thatthin your blood, such as Warfarin andimmunosuppressant medicines.Like any medicine, herbal remedies

can have side-effects. For example,kava, used for lifting the mood, issuspected to cause severe liverpoisoning. Some Chinese herbalremedies have also been shown tocause serious kidney problems.The scientific evidence for the

claims of herbal remedies is of variablequality. Research is often conflictingand while symptoms of some illnessesimprove, the best evidence generallyfails to prove that herbal remedies cureillnesses. Herbal remedies have beenwidely used for many years and may beuseful for self-treating minor illnesses.However, natural doesn't mean harm-less and it's important not to exceed therecommended doses.There is no statutory regulation of

herbal practitioners at present. However,the UK government is in the process ofintroducing a system to regulate both

herbal remedies and herbal practitioners.Herbal practitioners who are members ofthe National Institute of MedicalHerbalists will have trained for at leastthree years, are insured and follow theInstitute's code of conduct.Some herbal practitioners work

alongside doctors and your GP may beable to refer you, but this is likely to beto a private practitioner.

It's important to be aware that the activeingredients in herbal remedies and

conventional medicines can interact, soALWAYS ask your GP for advice.


result of this feedback, we have set up avirtual support group – an onlinecommunity – in the form of Blogs andForums. We’re also aware from thesurvey that some people would like toaccess online support but are not very

familiar with computers.Please do call the office(020 7940 4666) if youwould like to talk throughhow to get the best fromour online support.Raising awareness of

MSAwas a key priority ofrespondents to the survey.Our new website includesa section on how you canget involved with this. Ifyou’d like to help theTrust increase knowledgeof MSA amongst thegeneral population, thenplease visit our GettingInvolved section on thewebsite and look for“Awareness”. We’ve pro-

vided a few ideas plus facts on MSAwhich you might like to share amongstyour Facebook friends, Twitterfollowers and local media.We hope you like the site, which you

can find by visiting www.msatrust.org.uk.


11MSA News – The official magazine of the Multiple System Atrophy Trust – Spring 2011 11

Regional support

Iam retiring as a Trustee and decidedto put some of my thoughts down.

Sarah Matheson was my sister. She wasdiagnosed with MSA in 1993 byProfessor Clare Fowler and ProfessorChristopher Mathias, Londonspecialists. At that time, there wasabsolutely no support systemwhatsoever in place for MSA sufferers.Sarah did receive great support fromProfessor Mathias himself, and alsofrom her friends and relations whorallied round and helped her. Sarahnever married and had a great manyfriends, both through her work at theRoyal College of Art and at theArchitectural Association. She also hadmany social contacts both in Scotland,where she was brought up, and inEngland where she lived and workedfor many years.Val Fleming (still a Trustee) formed

a committee of some of these friendsand relations, to which ProfessorMathias was invited. We met in oursister Margaret’s house, where Sarahwas then living. This was the birth ofThe Sarah Matheson Trust for MultipleSystem Atrophy. Very soon CatherineBest, the neurological nurse from theNational Hospital for Neurology andNeurosurgery in London, became ournurse specialist. She was absolutelybrilliant and was soon joined by asecond nurse specialist. Between themthey did everything from a very smalloffice in St Mary’s Hospital inPaddington, London. They started thenewsletter, brought out leaflets aboutMSA, started the lightwriter loanscheme, in addition to coping with the

Farewell but not goodbyefrom Founder TrusteeFounder Trustee and Support Group Leader, Elizabeth Brackenbury, recalls the Trust’searly days as she steps down from our Trustee Board.

dozens of ’phone calls and much else.The Trust was formed in 1997 and grewat a very fast rate, from 13 people withMSA on the books to over 800 today.Catherine did marvellous work with

her information days in hospitals allover the country, with teaching sessionsfor professionals in the mornings, andMSA patients and their carers in theafternoons. MSA was such a raredisease and unknown to most health-care professionals.By 2009 we had completely out-

grown the small office in St Mary’s.Catherine had left to work full-time forProfessor Mathias. The Trustees decidedto move into a bigger office in South-

bank House. We appointed a part-timeExecutive Director and a part-timeAdministrator, which was verynecessary to cope with the heavyworkload and to support our two nursespecialists. I feel very proud to havebeen involved with this fantastic projectfrom the start. I am very thrilled that theTrust has grown and has been able tofund some very good research projectsin the hope that we can eventuallyconquer this horrible disease.In 2002 I thought I would try and do

something in the East Midlands, whereI live. I was given a list of all the MSApatients in my area and asked them tolunch. After lunch I said, “Perhaps weshould do this again next year”. “Ohno” was the reply. “We want fourmeetings a year”. We actually have two.I had vaguely thought I was fundraisingbut found instead that I was running asupport group. It is really veryheartening that after this tentative start,there are now so many support groupsdotted round the country. I really dothink people are very reassured to findthey are not the only ones coping with astrange and relatively unknown disease.We try to make our meetingslighthearted and fun, as well as a chancefor everyone to talk and compare notes,if they want to.I am retiring as a Trustee but am

continuing with the East MidlandsSupport Group, ably supported by IanJones and Margaret PalfreymanBiddulph.Our next meeting will be held on 27

April 2011 from 2.00 pm to 4.30 pm atHolme Pierrepont Hall, Nottingham.

Elizabeth Brackenbury


Regional groups


Region

Blackpool

Cornwall

Derbyshire

Devon

EastMidlands

Essex

Gloucester

GreaterManchester

NorthernIreland

NorthLondon*

Scotland*

SouthernIreland

Southport

Surrey

Warrington*

Yorkshire& Humber

Group leader/Coordinators

Jo Hans

Jane HandyJan Pearce

Karen White

Kulwant Sehmbi

Dennis Westrip

Elizabeth Brackenbury(Trustee)Ian Jones

Lady Laurelie LaurieSir Bay Laurie

Janice Davies

Katie Rigg

RosemaryArbuthnott

To be confirmed

To be confirmed

George Hunter

Ann McLennanFraser Gordon

Peter Turvey

Linda Moss,Parkinson’s Nurse

Karen Walker(Trustee)

Email

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

[email protected]

Phone

01253 821693

01726 7479201726 861361

01283 735847

01271 378273

0115 93330830115 9199294

01206 210410

01242 224617

01434 382931

00353872525252

01704 56835301704 894129

01483 827395

01925 867710

07710 312552

Next meeting

Thurs 14th April 20112.00pm-4.00pm

No meetings currentlyscheduled for 2011

Late February 2011

Fri 4th March 20112.00-4.00pm

Weds 27th April 20112.00-4.00pm

Mon, 11th April 2011From 12.30pm

To be confirmed

Fri 25th March 20111.00-3.00pm

To be confirmed

To be confirmed

To be confirmed

To be confirmed

Thurs 3rd March 2011Thurs 2nd June 2011Thurs 1 Sept 2011Thurs 1 Dec 2011

Thurs 3rd March 20112.00pmThurs 2nd June 2011Thurs 1 Sept 2011Thurs 1 Dec 2011

To be confirmed

To be confirmed

Venue

Venue to be confirmed

Doveside Social Club,Hatton,DerbyDE65 5DT

Baptist Church, High StCullompton, DevonEX15 1AJ

Holme Pierrepont HallHolme PierepontNG12 2LD

Great Tey Village HallGreat Tey, Essex


Mayo Building,Salford Royal Hospital,Manchester M6 8HD






Shalford Village HallKings Road, ShalfordGuildford GU4 8JU



Regional support groupsThe following is a list of current and new regional MSA Support Groups. If you are interested in attending a Group,please either contact the Support Group Leader directly or register your interest with the Trust Head Office (020 7940 4666).

Support groups are open to people with MSA, their carers and family members. The groups provide an invaluable opportunity to shareconcerns in an informal setting, to find out about local resources and to make contact with people in a similar situation. Once you haveregistered your interest, you are welcome to attend whenever you can and whenever you are feeling up to it. The group leader willkeep you informed of forthcoming meetings and local information.

* New groups - details and dates to be confirmed



Fundraisers in action

Before I joined the Army my weekly exercise consistedof dancing at the weekend in my hometown, Bristol. I’dnever even thought of running a half marathon buthere I was, two years into my new career as a studentnurse, on the starting line of my SECOND BirminghamHalf Marathon!

As a military student nurse, I waslucky enough to spend one of myclinical placements at the QueenAlexandra Hospital Home which wasjust as fantastic as I had been told.During the placement I met GrahamShaw, a resident who has MSA. Ihad never heard of MSA before but,having learned more about thedisease, I knew that raising moneyfor the Trust would be a greatreason to run those 13.2 miles asecond time around!

I first ran the Birmingham HalfMarathon in 2009 and I rememberthinking that I would have to have avery good reason to run it again!Raising £220 for the Trust was sucha small contribution in comparison

to the work that staff, trustees and volunteers do yearround, but it was great to be part of it and I hope I cancontribute again this year - maybe by running theBirmingham Half Marathon for a third time!

Kelly Lupton

Student nurse takes on the Birmingham half marathon

So many people help the Trust by raising funds for our work. Their amazing

efforts make it possible for us to provide our services and fund research into

MSA. Here are a few of their stories, and a big thank you to everyone who

works so hard to support us.

Philip East of Ongar, Essex raised over£300 in memory of his wife, Celia,

when he cycled from Land’s End toJohn O’Groats from 15 May to 1 June

last year. Phil rode with a group of 22other cyclists, and they were blessedwith good weather for almost the entiretwo weeks. Phil says that although thejourney was sometimes arduous, it wasgreat fun too, especially after he and afellow cyclist adopted the habit ofriding their bikes straight into hotelreceptions on arrival at their dailydestination. On one occasion, and muchto the amusement of the hotel staff, theywere unable to resist the temptation toride their bikes along the red carpet thathad been rolled out for a weddingparty! Phil and Celia regularly attendedEssex Support Group meetings over theyears, and fellow members aredelighted that Phil continues hisinvolvement in the group.

A relaxed looking Philip

Riding from Land’s End to John O’Groats


Fundraisers in action


We are very grateful for all yourfundraising activities.

We would be grateful if any futurecheques be made payable to

‘Multiple System Atrophy Trust’

The perfect mix – cakes and golfSusan Parnell of Bicester, Oxfordshire,decided that the ‘Family Fun Day’ attheir local golf club (The Bicester Golf& Country Club) would be the perfectopportunity to try and raise funds forthe Trust. The picture shows Sue on theleft (in red fleece) with her helpers,including her grand-daughters, runningtheir fundraising cake stall. Sue’shusband, Pete, has MSA and says it wasa shame that all their hard work wasslightly ruined by bad weather – butthat didn’t stop people parting withtheir money in support of the Trust!

Swapping uniforms for festive gear!Pupils and staff at Killicomaine JuniorHigh School in Portadown, Co. Armagh,kicked a December week last year off toa good start by taking part in a non-uniform day with a twist to raise moneyfor charity. They were given the chanceto try out their festive creativity bycoming to school wearing clothes with aChristmas theme. They raised £400 forthe Trust on the day by donating moneyfor the privilege to dress up. Ms Fulton(right), classroom assistant and a memberof the Northern Ireland MSA SupportGroup, worked alongside Mrs Camblin(left) the school’s charity coordinator, toorganise the event and, most importantly,raise awareness of the charity.

Running the streets of ManchesterSusan Wood ran theManchester 10k in May2010 in memory ofDoreen Hatfield whowas diagnosed with MSAin 2006 and passed awaylast January 2010. Withhusband Andrew insupport, together with Doreen’s husbandPeter and daughter Kath urging her on, Suecame in a very creditable 1 hour 14 mins.Sue commented: “It was hard but I feltAuntie Doreen pushing me all the wayhome.”Doreen’s familywould like to say avery big thank you to Andrew and Sue fororganising the event in support of thefamily’s charity and also to the manyfriends and family who contributed to thewonderful sumof £350, includingGiftAid.

Steve Catterick of Wetherby, West Yorkshire took part in theBolton Iron Man Challenge in August last year in memory of hisfather-in-law, who had MSA. Steve trained incredibly hard forthe event which involved a 2.5 mile swim, a 112 mile bike rideand a marathon. He completed all this in a very impressive 13.5hours. An amazing achievement, made all the more significantby the fact that Steve raised £900 in support of the Trust.

Wetherby man takes on the Bolton Iron Man challenge



Noticeboard

� Terry Aldridge� Alan Birkbeck� Tung Biu Lo� Bronwyn Bond� Edward Clarke� Irene Davidson� Doreen Davies� Kevin Digby� Margaret Diston� Peggy Donovan� Malcolm Dunnell� Dorothy Gordon� Emile Harris

� June Harrop� Sheila Hibbert� Don Jackson� Robert Jess� Irene Jones� Robert Killone� Anne McCabe� Marinos Nicolaides� Marina Osmond� Alison Pearce� Ann Rushton� Denis Ryan� Myrtle P A Seabrook (Tigs)

� Berjinder Sehmbi� Diana Sharpe� Brenda Simpson� William A J Sketch (Tony)� Christine Smith

� Keith Smith� Gerda Still� Denis Tobin� Ruth Twena

In Memory If you have informed the Trust 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. Members passed away during 2010.

muchloved.commuchloved.com is a website dedicated to offering

personalised 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

The state of caring in 2011Carers UK is conducting a major new piece of research into the impacton people’s lives of caring responsibilities.

It is vital to gather experiences from every part of the country so thatthey can highlight how carers are affected differently.

Carers UK needs your help in making sure carers’ experiences in your area are counted, by:

• Completing their online survey at www.surveymonkey.com/stateofcaring

• Emailing [email protected] to request a PDF version of the survey to fill in and return to the charityusing FREEPOST

We’re on the lookout fora new Honorary Treasurer!Our Honorary Treasurer,

Nick Bunt, is lookingfor a successor!Nick is looking to stand

down from this volunteerrole within the next 12months and we’d be verykeen to hear from peoplewho might be interested ingetting involved in this aspect of theTrust’s work.The Honorary Treasurer is respons-

ible for ensuring that the Trust’soperational/strategic financial planningis undertaken and executed in the bestpossible way. He or she sits on theTrustee Board and works closely withthe Chairman, Executive Director and

Sharingexperiences

Have you got a story you’d like toshare with other readers of MSA

News about living with MSA? Perhapsyou have experience of speech therapy,going into hospital, going on holiday –or other aspects of daily life with MSAyou think readers might be interested tohear.Perhaps you have some tips you’ve

learnt that have made life easier, morecomfortable, more enjoyable?Well if you have, we’d love to hear

from you!Please write to Nickie Roberts at

the Trust’s office in Southbank Houseor email her at [email protected]. We will try our best toinclude your contributions.

the Trust’s Finance Sub-Committee. There are usuallyfour Trustee Board meetings ayear and two Finance Sub-Committee meetings; theTrust employs the services ofan accountant and auditor tocontribute to the preparationof internal and statutory

paperwork.If you, or someone you know,

would like to understand a little moreabout what the role entails, pleasecontact the Trust’s office for a roledescription and/or email Nick [email protected] look forward to hearing from

you!

Nick Bunt


16

Information, Support, Education andResearch in Multiple System Atrophy.

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

� Information leaflets and magazine� 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 BuntMichael EvansValentine FlemingProfessor Clare FowlerMs Darcy HareAlexander LoehnisHugh MathesonGeoffrey MurrayHon Mrs Clare PowellEileen Lady Strathnaver OBEKaren Walker

Executive Directorand MSA News Editor:Nickie Roberts

All correspondence andenquiries to:Multiple System Atrophy TrustSouthbank HouseBlack Prince RoadLondon SE1 7SJTel: 020 7940 4666www.msatrust.org.uk

The Trust is financed entirely byvoluntary donations.Registered Charity Number 1137652Company Number 7302036

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Current MSA members 820Other patient members 34Relatives and carers 531Professionals 1395Others 190Total 2970

Membership Numbersas of the end of 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 Trust 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 onwww.justgiving.com. This facility can be used for anything from a personal occasionto an in memorium for a person’s life.Contribute to MSA NewsSharing your experiences and tips with other members helps keep it your magazine.Form a local support groupLink with the Trust office and independently run a group to provide local supportfor people affected by MSA.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 taxpayer we can increase the value of anydonations made to the Trust. This Gift Aid could raise the Trust’s income by as muchas £20,000 extra per year. We have Gift Aid forms available at the office.

Donate now!If you would like to make a donation to the Multiple System Atrophy Trust (formerlythe Sarah Matheson Trust) please complete the form below and send to the office. Ifyou are a UK taxpayer we can increase the value of your donation by 28% byreclaiming the tax as Gift Aid.

The Trust endeavours to ensure the accuracy of articles in MSA News.Please note, however, that personal views and

opinions expressed are not necessarily endorsed by the Trust.

Ways to support the Trustand help it grow

Next issue All articles to be received by the office by 2nd May 2011

Name

Address

Post code

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 ‘Multiple System Atrophy 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 ‘MULTIPLE SYSTEM ATROPHY TRUST’

Multiple System Atrophy TrustFounded by Sarah Matheson


MSA News (issue 30)

Documents

Transcript of MSA News (issue 30)