epda 2003 annual report

2003Annual

Report

EPDA 2003 ANNUAL REPORT

CONTENTS

EPDA ANNUAL REPORT2

Board’s welcome

Executive summary

Networking

EPDA projects

European developments

Other activities

EPDA publications

EPDA business plan

Financial report

Member organisations

EPDA details

Extra information

3

4

6-7

12

18

19

16-17

13

14-15

8-9

10-11

5

This Annual Report designed and produced by Dominic Graham on behalf of the EPDA

BOARD’SWELCOME

EPDA ANNUAL REPORT 3

We would like to welcome you to our firstAnnual Report. The EPDA, now into its

twelfth year has never produced an annualreport that, as a registered organisation, itshould. We believe it is an attractive publica-tion and it will be placed on the website to befreely accessed and printed off. It will also beused as a marketing tool to promote not onlythe work programme of the EPDA but at thesame time enhance the public image of theorganisation itself.

In May, Bruno Dupont, Board member, whoresides in Brussels, decided to retire from theBoard having worked with the EPDA in anadvisory capacity for the European Commissionfor eight years. We would like to express oursincere thanks to him for his help behind thescenes during this time, especially for hisknowledge and hard work during the EPDA reg-istration process in Belgium in 1997/98.

The work programme reflects the furtherchanges, building on the infrastructure thatwas put in to place at the beginning of ourterm of office in 2001. The continued appoint-ment of the liaison/project manager hasensured that the EPDA has continued to grow,has become more efficient so that the member-ship receive information on a regular basis,which hopefully assists you with the work ofyour individual organisations and your mem-bership. This appointment has also meant thatthe role of the Board is a strategic oneenabling them to concentrate their efforts onproviding operational guidance.

We hope that you will find the annual reporta welcome addition to the EPDA publicationsand that it will demonstrate the importantwork that is being carried out in trying toenhance awareness and improve quality of lifefor people with Parkinson’s and their familiesliving throughout Europe.

The Board would like to thank the member-ship for all their support and interest in whatwe have tried to achieve throughout 2003. Ithas been a year of hard work and change, notonly in structure but also in the Board.

We would like to express our sincere thanksand gratitude to Dr Irena Rektorova, Louisevan der Valk and Raphael Medan for theirdedication and commitment to the work pro-gramme of the EPDA. Irena has provided hersupport, expertise and interest since 1996,

became a Board member in 1998 and servedas vice president since 2001. Louise was afounder member, initiator, and editor of theEPDA magazine until the summer of 2001 andsince 1996 she has been secretary. Raphaeljoined the Board as Treasurer in 2001 but hiscontinued, constant support has been evidentsince 1998. The EPDA owes a great debt tothem all and we look forward to our continuedworking together.

While saying farewell to Irena, Louise andRaphael, Peter and I would like to welcomeour newly elected Board Members for the nexttwo years Mariella Graziano, Branko Smid,Gila Bronner, and Svend Andersen.

The Board has many talents and expertiseranging from experience as carers, living withParkinson’s, running their own PD organisa-tions, physiotherapy, and sexual therapy. Theyalso have great enthusiasm and commitment,and together with Lizzie Graham, liaison/proj-ect manager, will continue developing thestrategic direction that the previous Board putin place during the last two years and provid-

ing validated information and resources forpeople with Parkinson’s and their families.

The EPDA has come a long way since ourhumble beginnings in 1992. We have initiatedand developed many projects, both Europeanand international, including 10 conferences (fivemultidisciplinary and five for the young onsetParkinsonians), but there is still much to do.

The new Board looks forward to continuingwith this never-ending challenge throughoutthe next two years and not least in developingan ever-closer relationship with the WorldHealth Organisation and the EuropeanCommission when there is changing legisla-tion which will impact on the quality of life ofpeople with Parkinson’s and their familiesthroughout Europe.

Finally, we would like to thank StephenPickard, legal advisor for his help and advice,despite having a very busy schedule; andLizzie Graham, liaison/project manager, forthe support and hard work that she has provid-ed to us all and to the membership in general.

A new report for a new year

The EPDA Board – full of experience, commitment and dedication

“The Board has many talents, fromexpertise & enthusiasm to commitment”

EXECUTIVE

SUMMARY

EPDA ANNUAL REPORT4

With the continued growth of ICT and emails, ithas been necessary for the Board to hold only

three administration meetings in 18 months, since theGeneral Assembly in June 2002. In addition, thelengths of these have been reduced to two days and areheld at weekends when travel and accommodation isless expensive. Where possible they are held in thehomes of Board Members in a further effort to savefunds. The first was held in October 2002 in TheHague, the home of Peter Hoogendoorn, and the sec-ond in January in Brussels and the third in the UK atthe home of Mary Baker. Every effort has been takenby the Board to find ways of reducing the cost of thesemeetings.

Overview of activitiesOur work continues to grow and to flourish and we aretrying to provide valuable, validated information thatwill help improve the quality of life of those peoplethroughout Europe, who live with this chronic neuro-

logical condition and those who care for them. Youcan read more about the projects on pages 6–7.

Collaborative Proposal and Guidelines The Board continues to try to raise funds to ensurethat the work already begun will continue. We havetherefore developed a document (visitwww.epda.eu.com) which will be presented to com-panies, including the pharmaceutical and biotechindustry, to encourage their support in becomingpartners to the EPDA, its members, mission andobjectives while at the same time raising the profileand credibility in a Europe that is increasingly con-cerned about the importance of health and the currentstate of healthcare provisions.

The EPDA will only partner with companies andorganisations of high standing and reputation and allpartnerships will be transparent to the EPDA and itsmembership, its key stakeholders, as well as toprospective partners and donors.

EPDA in 2003: the Board’s executive summary

Acknowledgements

The EPDA would like to thank the following peopleand companies for their support of the EPDA and its

work programme throughout 2003. Without them it wouldnot be possible to continue with our work programme.

PatronsIn March, we notified you that we had invited severalpeople to become patrons of the EPDA and were hon-oured and delighted to announce that the followingpeople, who have provided support and encouragementto the EPDA throughout the years, had confirmed theiracceptance of our invitation. � Christoph Cardinal Schonborn, Archbishop ofVienna � John Bowis, OBE, member of the EuropeanParliament� David Jones, CBE, chairman, Next plc� John Walker, executive director, Ford MotorCompany.

We are thankful that they will continue to supportour important aims and objectives in the years tocome.

We are continuing to approach other Europeans andhave invited Dr Alois Mock, Austria and ProfessorArvid Carlsson, Sweden, in the hope that they toowould also be willing to serve as Patrons for theEuropean Parkinson’s community.

Auditor: M J Read & CoIn January of this year, the Board took the decision toidentify an auditor who could provide the same excel-lent professional services at a cheaper rate and whoresided nearer to the EPDA office base.

Three companies were interviewed, all members ofthe Institute of Chartered Accountants in England andWales, registered to carry out audit work, and regulatedfor a range of investment business activities and M JRead & Co was appointed to carry out the audit for thefinancial year 1 January – 31 December 2002 and reap-pointed at the 2003 General Assembly for a further year.

Pharmaceutical IndustryThe EPDA could not carry out its work programmewithout the constant and consistent support of thepharmaceutical industry.

They help in many ways: by providing advertisingfor the EPDA Focus, funding the preparation anddevelopment costs of publications includingMedication Information Sheets, Patient InformationLeaflets, Flexicard, EPNN Journal and more, and byproviding funds to support projects and conferencedevelopment.

We gratefully acknowledge the support of all the fol-lowing companies who have worked so closely withthe EPDA in partnership throughout 2003.

Pfizer Inc

The need for networkingHow the working group on PD has been pro-actively engagedin building Parkinson’s disease’s profile to an all-time high

The Working Group onParkinson’s Disease, formed

by the World HealthOrganisation (WHO) in May1997, launched the GlobalDeclaration at the 7th WorldParkinson's Day InternationalSymposium in Mumbai, Indiaon 6-7 December 2003.

Following the first WorldParkinson’s Disease Day on 11April 1997 and the launch of theWorld Charter for People withParkinson’s disease, the WorkingGroup on Parkinson’s diseaseheld its first meeting at theWHO offices in Geneva.

The group consisted of leadingspecialists in Parkinson’s diseasefrom Argentina, Austria,Canada, Germany, Russia, SouthAfrica, Spain, UK, and USA andrepresentatives from the EPDA.In subsequent years the groupmembership has increased toinclude Africa, India, Japan andJordan, with annual meetingsbeing held alongside WorldParkinson’s Disease Day cele-brations in Spain, USA,Argentina, Japan and Russia.

The Group members reflectthe WHO Regions: America,Europe, East Mediterranean,Africa, South East Asia, andWestern Pacific. Their aim hasbeen to develop a GlobalParkinson’s Disease Allianceand to work in partnership withthe lay organisations in order to

transfer the ‘Charter for peoplewith Parkinson’s disease’ into aGlobal Declaration.

Parkinson’s disease, which isglobally distributed, affects allcultures and races, with the over-all prevalence in the world beingestimated to be 6.3 million withmore than one in 10 people withParkinson’s being diagnosedbefore the age of 50 years of age.

Demographic changes meanthat Parkinson’s is set to becomemore and more common with therise in the number ofthe elderly worldwide– the Netherlands esti-mate that for the period2000–2020, the num-ber of people diag-nosed with Parkinson’swill rise by 44.7%.

This increase iscoming at the sametime as a decrease inthe availability ofinformal carers andthe change in familyand career structures.

Therefore, it is thetime to urgeGovernments to pro-vide effective andappropriate manage-ment strategies, whichcould improve the qual-ity of life of those withParkinson’s and reducethe cost and impact onthe global community.

Launch of the Global Declaration onParkinson’s Disease: ‘Moving and Shaping’

The Working Group onParkinson’s Disease looks for-ward to the support of the globalPD organisations in promotingthis important event throughouttheir countries and regions.

It is planned to hold a furtherlaunch at the World PD Day cel-ebrations being held in Canadain April 2004 followed by a fur-ther launch at the EPDA confer-ence ‘Working in Harmony –The Team Approach, in Lisbon,Portugal, in May 2004.

NETWORKING


The fight’s on:Boxing legendMohammed Aliis just one ofthe high-profilenames to backthe PD GlobalDeclaration

The Global Declaration: to encouragea change in attitude towards PD

EPDA

PROJECTS

EPDA ANNUAL REPORT6

ProjectsOutlines of the main developments the EPDA has been working on in 2003

Medicines Partnership, a UKDepartment of Health initiative, is col-

laborating with the EPDA and a number ofother organisations to develop a project toevaluate the effectiveness of an extendedmedicines support service to be provided topatients with PD by specially trained com-munity pharmacists.

Given the many problems faced by PDpatients with medicines, community pharma-cists are ideally placed to provide local,expert assistance.

The pilot project will train 18 pharmaciststo offer regular, structured consultations withPD patients and/or their carers in which theywill identify and address patient issues andconcerns regarding their medicines and con-dition, including how medicines work, side

This three-yearstudy, funded

by the EuropeanCommission, is apartnershipbetween the

EPDA and Estonia, Finland, Germany,Greece, Portugal, Spain and the UK. Itinvolves 231 people with PD (over 65 yearsof age), 224 Carers and 291 health care pro-fessionals working in 58 focus groupsincluding medical doctors, nurses, psycholo-gists, therapists (physios, OT’s and speech),pharmacists, social workers and volountaryorganisation staff.

Sources of information have includedface-to-face interviews, written, audiovisu-al and PD Society support groups. It hasbeen identified that successful informationgiving is as a result of this being givenindividually, step-by-step, according to dis-ease severity, different information forpatient and carers, emotional support andteam management.

Barriers in information giving include: lackof communication skills, lack of profession-als’ time ; lack of interest of patients/carers;lack of general practitioner’s knowledge;lack of patients’ readiness to participate indecision making; poor communicationbetween professionals.

The Study so far concludes that:

� Between different countries there weremore similarities than differences concerninginformation needs, sources, experiences andbarriers in information giving� From time of initial diagnosis, patientshave ongoing needs for information � Lack of knowledge and fear concerningthe future gives a negative influence on qual-ity of life � The specific needs of carers require sepa-rate attention from healthcare professionals � The information needs are individual andchange during the course of the chronic ill-ness� Information should be given regularly,repeatedly, on individualised basis accordingto disease severity� Team management of PD with inter-pro-fessional communication is the most effec-tive approach� Patients with chronic progressive diseasesand their carers need education� The standardised materials have to beavailable in understandable languages� Professionals need easy access to a proto-col advising on best care. � Professionals need training in communica-tion skills�Well-informed patients and carers areempowered to contribute to decision makingas full members of the multidisciplinaryteam.

effects and interactions and practical aids tomedicine taking.

The service is planned to commence mid-2004. Sweden, has also expressed a sincereinterest in this project and Lars Nillson of theNEPI Foundation attended the last meeting.

It is hoped that the pilot project will laythe groundwork, not only for a widespreadservice for patients with PD in the UK, butalso for the establishment of ‘pharmacistswith a special interest’ in a range of diseaseareas.

The Health Services Research Unit at theUniversity of Oxford will carry out the eval-uation of the service, and MedicinesPartnership and Pfizer jointly fund the proj-ect. Further details are available atwww.medicines-partnership.org/projects

UK Community Pharmacy MedicinesSupport Pilot in PD

INFOpark

EPDA

PROJECTS


The paper Movement Disorders 2003 DOI10.1002/mds.10507 is available via the

Movement Disorder Website: www.inter-science.wiley.com/movementdisorders

The direct costs of care were evaluatedprospectively in a sample of people withParkinson’s disease (PD) in the UnitedKingdom in 1998.

A random sample of people with PD wasdrawn from general practitioner practiceswithin a representative sample of 36regional health authorities – and theequivalent.

A total of 444 resource-use questionnaires

with useable data were returned (responserate 59%). The total mean annual cost ofcare per patient for all patients by age was£5,993 (9,554 euros, n = 432).

Hoehn and Yahr stage significantly(P<0.001) influenced expenditure by stageas follows: 0 = I, £2,971 ( 4,736. n =110); II, £3,065 (4,886 euros, n = 89); III,£6,183 (9,857 euros, n = 120) IV, £10,134(16,155 euros, n = 87); V, £18,358 (29,265euros, n = 17).

National Health Service costs accountedfor approximately 38% and social servicesfor 34% of the direct costs of care.

This project, funded bythe NHS Health

Technology Assessmentprogramme, is a large,simple “real life” trial thataims to determine reliably

which classes of drugs provide the mosteffective control with the fewest side effectsfor both early and later Parkinson’s disease.

The main outcome measure is patient-relat-ed quality of life.

Progress� 525 patients recruited into PD MED � 402 in early disease� 123 in later disease

Literature supportA series of recent articles have called formore clinical trial evidence from studies –such as PD MED – comparing differentclasses of drugs. This trial has been specifi-cally cited in Rogers et al’s review of initialagonist treatment in the American Journal ofNeurology (Feb 2003) as an importantsource of data to help guide future clinicalpractice.

The trial is being carried out in the UKwith two international collaborators (theCzech Republic and Russia).

For further information visitwww.epda.eu.com or contact PD Med TrialOffice [email protected].

Many members will remember theenergetic discussion at the 2002 and

2003 General Assemblies about the needsof younger people with Parkinson’s – andthe consensus that younger people withPD do have special needs that should bemore systematically and thoroughlyexplored before ways of meeting them canbe found.

Since the last General Assembly, theBoard has considered how to progress thisimportant research, which unfortunatelygot off to a bad start in 2001-02.

It agreed that the most effectiveapproach would involve a mechanism fordata collection that would be rapid andanonymous while not demanding excessivetime and energy.

A survey was the most favoured method,and it was agreed the research team must beable to work collaboratively with service-

users at all stages of the design, implemen-tation and conduct of the study. Service-users must also be prepared to share thefindings in a way that would benefit partici-pants and future service-users and could beused to influence policy.

Questionnaire for younger people withPD – the Participation in Life survey

Economic impact of PD: A researchsurvey in the UK

PD Med

Strengthening the collaboration amongall stakeholders across European

organisations and with the EC is a majorEBC drive in order to further developbrain research and brain disorders.

It also proposes a separate programmeon “brain research” to be expanded with-in the forthcoming 7th FrameworkProgramme.

The EBC will seek to be activelyinvolved from the very beginning ininfluencing the content of the 7thFramework Programme.

This will involve gathering and scientifi-cally analysing data on the cost and bur-den of brain disorders in Europe.

This project will provide, for the firsttime, a single document containing thecosts of brain disorders in Europe in eco-nomic and social terms.

It also published a booklet “Brain con-nections” in collaboration with theEuropean Dana Alliance for The Brainhighlighting some important areas whereadvances in basic science promise newhope for patients with brain disorders.

EBC’s work programme for 2003

EUROPEANDEVELOPMENTS

EPDA ANNUAL REPORT8

European developmentsHere are some of the fine examples of how organisations areworking together to drive best practice across Europe

In the last twoyears, there

have been manyrequests fromParkinson’s dis-ease nurses aswell as peoplewith Parkinson’sthroughout

Europe as to whether or not there was a pos-sibility for a nurses organisation to beformed.

Such a network would have the opportunityof applying for research funding from theEuropean Commission and would help withthe many challenges that exist includinginequity of service, availability of medica-tion, which varies from country to country,and the lack of PD nurses in many EuropeanPD centres.

The aim of this European network is towork in partnership with other similar organi-sations such as PDNSA and the International

President,Jes Olesen,

neurologistand MaryBaker, vicepresident wereinstrumental in

the foundation of the EBC in March 2002. It has a unique structure – bringing

together as it does, a host of Europeanorganisations with a specific interest inthe brain.

Members include pan-European bodiesrepresenting neurologists and psychiatrists,as well as patient federations in thoserespective fields, neurosurgeons, basic neu-roscientists, and relevant areas of industryand commerce.

Nurses Group, for the benefit of people withParkinson’s and their families.

PD Nurses from throughout Europe wereinvited to become members of the EuropeanNurses Steering Committee and they are:

Annette Bowron, Alison Forbes (PDNSA),Jane Merrils, Kirsten Turner (Chair) – fromEngland.

Orna Moore – from Israel.Martje Drent, Josje Hilgers, Gill McLean

and Lidy Tinselboer – from the Netherlands.Liz Morgan – from Wales.

Lizzie Graham, EPDA liaison/project man-ager has been asked to co-ordinate andadminister this group during its developmentand separate sponsorship is being sought tofund the administration. The launch of theEPNN will take place at the EPDA’s 5thmultidisciplinary conference from 6–9 May2004 in Lisbon, Portugal. The nurses willalso hold a satellite symposium, followed bytheir first business meeting.

European Parkinson’s Nurses Network

European Brain Council (EBC)

EUROPEANDEVELOPMENTS


Mary Baker,President

of the EPDA andEFNA hastogether with herfellow Board

members, spent considerable time, workingwith the European Commission putting for-ward the patients’ point of view in the bigdebate in the Parliament about direct con-sumer information.

EFNA's motto is “Partnership for Progress”and the association really does try to achieveits aims by this route, combining the strengthand experience each of the member organisa-tions has acquired in the work for its ownparticular medical condition.

EFNA draws together all that experience tounite in a common cause, providing the inter-national medical community, politicians andother decision-makers with an active partnerand source of authoritative information acrossa broad, but extremely important and distinc-tive area of medicine – brain disorders.

EFNA's projects, which try to reflect thisbreadth include:�Working towards the elimination of stigma� Participation in production of consensusguidelines and procedures� Supporting the formation of a EuropeanStroke Patients' Group� “Parliamentary Partners in BrainDiseases”� Creation and application of a EuropeanMedia Pack� Bridging the Treatment Gap� Compliance in medicines

Publications include:� Common neurological symptoms & con-ditions – a guide for non-professionals.

Partners:� EFNA-affiliated associations � European Federation of NeurologicalSocieties (EFNS) �World Federation of Neurology (WFN) �World Health Organisation (WHO)

Neurological and general MedicalInformation:� InteliHealth� Mayo Clinic � MedicineNet� MedLineplus� NOAH – New York Online Access toHealth

Other general patients’ and citizens’organisations:� ADI – Alzheimer's Disease International � APAI – Associazioni PatologieAutoimmuni Internazionale � BEUC – European Consumer'sOrganisation � ECAS – European Citizen Action Service � EDF – European Disability Forum � EMSP – European MS Platform � EPPOSI – European Platform for Patients'Organisations, Science and Industry � EURORDIS – European Organisation forRare Diseases � IAPO – International Alliance of Patients'Organisations � PA – The Patients' Association

European Federation of Neurological Associations (EFNA)

Members include pan-European bodiesrepresenting neurologists and psychi-

atrists, as well as patient federations inthose respective fields, neurosurgeons,basic neuroscientists, and relevant areas ofindustry and commerce.

The European Federation of NeurologicalAssociations (EFNA) represents Europe-wide organisations for patients with neuro-logical illnesses, such as the EuropeanParkinson’s Disease Association, AlzheimerEurope, European Dystonia Federation etc.

The Global Alliance for Mental IllnessAdvocacy Networks (GAMIAN-Europe)represents associations of psychiatricpatients.

The European Federation ofNeurological Societies (EFNS) representsnational societies of neurologiststhroughout Europe and the European

College of Neuropsychopharmacology(ECNP) is a Europe-wide organisation ofpsychiatrists and pharmacologists andother basic scientists.

The European Association ofNeurosurgical Societies (EANS) is a federa-tion of national societies of neurosurgeons.

The EBC seeks to have industry represen-tation but, in most cases, industry does notyet have sub-divisions dealing specificallywith the brain at a European level.

Until that happens, the EBC accepts indi-vidual companies as representatives of theirindustry.

For example, AOK (AlgemeineOrtskrankenkasse), as the biggest Germanhealth insurance company – represented byAOK Schleswig-Holstein – is an EBC mem-ber and representative of the European insur-ance industry.

EBC: The Founding Members

OTHERACTIVITIES

EPDA ANNUAL REPORT10

The EPDA members and theirfriends from 23 European

countries gathered together for theannual General Assembly week-end in the lovely city of Paris inNovember. It was a time to meetold friends and welcome newones; to listen to many interestingpresentations; to share news andjoin in discussions. It was also thetime to say goodbye to electedBoard members who had decidedto retire from their positions ofoffice and to welcome new mem-bers who will continue to developand lead the EPDA work pro-gramme for the next two years.

Dr Irena Rektorova, CzechRepublic provided the annualupdate on EPDA Projects and ProfPille Taba, Estonia provided a fas-cinating and informative update onthe Infopark project (see pageEPDA projects page 6 – 7).

Annette Bowron, a seniorParkinson’s disease nurse special-ist at the North General Tynesidehospital in the UK and committeemember of the EuropeanParkinson’s Nurses Network pre-sented the results of a 12 monthstudy (funded by Novartis andOrion Pharma) involving interna-tional PD specialists to promotebetter recognition by both the

patient and physician of thesymptoms of wearing off.

A controlled survey wasdesigned by the group to comparethe sensitivity of a patient ques-tionnaire versus clinical assess-ment. It was completed earlierthis year and the data presented atthe EFNS congress, Helsinki, andat the Parkinson’s Study Groupmeeting, San Francisco, inOctober. For further informationvisit www.epda.eu.com

‘Dilemmas concerning sexualityand intimacy in Parkinson’s dis-ease’ was led by Gila Bronner,sexual therapist, Israel, who spokeabout the importance of intimacyand touch, and of how it is not

given the attention it deserves inthe management of Parkinson’s.Also, sometimes, the symptomsof PD can affect this normaleveryday activity – even kissingcan be difficult because of dyski-netic movements.

She stressed that ‘loving’ is apleasant activity for two peopleand if the expectation of one isnot matched by the other, thiscan lead to disharmony and canerode a relationship. In 2004, thecoming months, the EPDA willbe working closely with Gila tofind ways of increasing aware-ness and understanding of thisvery important quality of lifeissue.

Other EPDA activities in 2003/4

The beautiful sights of Paris greeted delegates at last year’s GA

General assembly unites old friends

One of the EPDA’s latest initia-tives is Parkinsonploy – an inter-active patient education resourcethat uses a board game analogy toengage patient interest and aidmemorability.

The first element of theParkinsonpoly patient initiative isa website which gives people withParkinson’s disease, their familiesand carers a concise, visual guideto structured information, adviceand help, to reflect their changinginformation needs over time.

The website includes contentfrom the new EPDA Parkinson’sleaflet information series andthese leaflets are further publi-cised under the Parkinsonpolyumbrella and can be downloadedfrom the Parkinsonpoly website aswell as from the EPDA website.

See www.parkinsonpoly.com

The EPDA Website,www.epda.eu.com, was

designed in 1998, redesigned in2002, and has now receivedanother face-lift – thanks to thesupport of one of our patronsDavid Jones.

His son has redesigned thewebsite so that it is more visuallyattractive and the information eas-ier to find. Paula Proctor, atSheffield University, has support-ed the EPDA since 1996 and hascarried out this work for us in herfree time despite having a verybusy schedule.

But times change, and with heragreement, the site was rehostedfrom 15 September 2003. Wewould like to thank Paula for herhard work, time, friendship, and herinterest in the work of the EPDA.

The production of theMedication Fact Sheets, PatientInformation Leaflets and

Parkinsonpoly have been as aresult of the collaborationbetween the EPDA and NovartisPharma AG and Orion Pharmawho provided an unrestrictededucational grant for theirdevelopment.� In June 2003, these leafletswere produced in a series of sixproduced with the active partici-pation of people with Parkinson’sand carers throughout Europe,and were added to the website.

They contain informationincluding treatment options,working together, talking aboutparkinson’s, taking control, whatis the latest science, and copingwith Parkinson’s.

Parkinsonpolysparks interest

EPDA website gets makeover

The EPDA isenjoying itsnew websiteredesign

OTHERACTIVITIES


The fifth EPDA multidiscipli-nary conference is being held

in Lisbon, Portugal, from 6 – 9May 2004 (see www.epdaconfer-ences.org).

It has been reviewed andapproved for CME (ContinuingMedical Education) by theEuropean Federation ofNeurological Societies.

It promises to uphold the EPDAMission Statement ‘to develop adialogue between science andsociety’ and to promote interna-tional understanding ofParkinson’s, enabling people liv-ing with the chronic neurologicalcondition and their families todraw on best caring practice byaccessing the latest medical andsurgical advice thereby enablingthem to make informed choices toachieve the best quality oflife possible.

Delegates, includinghealth and social care pro-fessionals as well as peoplewith Parkinson’s and theircarers, are expected. Andthere are dedicated satellitesfor PD nurses, physiothera-pists, occupational therapistsand Making Life Easier – aMultidisciplinary Approach,workshops, Meet the Expertsessions, and the final reporton the EuropeanCommission-funded threeyear project, INFOpark(Information needs ofPeople with PD and their

carers, and how professionals canhelp meet those needs).

Jan Herzog, a neurologist fromGermany, and Rui Vaz, neurosur-geon, Portugal, are workingtogether to lead a much neededsession on Deep BrainStimulation (DBS) – Some ofyour questions answered.

Many people with Parkinson’s,their carers and healthcare profes-sionals involved in their manage-ment want to know a lot moreabout DBS and they have manyquestions that need answering.

The EPDA wanted to provide anopportunity where people couldlisten to the facts about DBS andhave the opportunity of not onlylistening but also asking many oftheir questions and this interactivesession, has been designed to do

just that.One of the highlights will be the

launch in Europe of the GlobalParkinson’s Disease Declaration‘Moving and Shaping’, followingon from its highly successfullaunch in Mumbai in December2003 (See page 5).

But overall the programme hasbeen developed to allow debateand encourage the participation ofthose involved in the managementof what is a most difficult andchallenging illness.

Lisbon will come alive in May with the EPDA multidisciplinary conference

The newEPDAMedicationfact sheet

‘Working in Harmony’ encouraged by EPDA

At the General Assembly 2002the EPDA discussed the possibili-ty of collaborating with RotaryInternational on a project thatwould help the exchange of doc-tors in the field of Parkinson’sdisease.

Discussions have continued andit is anticipated that fund raisinginitiatives will be developed in2004 to fund bursaries to helpwith the integration of these doc-tors within the community andsociety while living within thecountries during their period oftraining.

Countries actively involved inthis project are the UK, Belgium,and Italy.

Regrettably, the FederationFrancaise des Groupements

(FFGP), had to take the decision,due to financial reasons, to cancelthe Euroyapp&rs conferencewhich was due to be held thesame weekend as the GeneralAssembly. With the appointmentof Svend Anderson to the Boardwith responsibility for youngonset the needs of the youngerpeople with Parkinson’s will be afocal point in our work pro-gramme and we hope that aEuroyapp&rs conference will beheld in the near future.� The EPDA is trying to continu-ally provide up-to-date and vali-dated information, which willassist not only people withParkinson’s and their families butalso the health professionals whocare for them.

We are using the EPDA Websiteto do this so that this informationreaches as many people as possi-ble. During 2003, the MedicationFact Sheet has been developed.

This replaces the printedEuropean Medication leaflet andcontains not only information aboutthe medication, where it is availableand in which countries, but alsoprovides graphics of the packaging.

2004 to see fundraising ideas withRotary International

No meeting for Euroyapp&rs

The conference promisesto uphold the EPDA

Mission Statement ‘todevelop a dialogue between

science and society’

EPDA PUBLICATIONSEPDA

PUBLICATIONS


EEPDA FFocus

WHAT IS IT?Focus is a way of sharing best practice and tips on how to manage Parkinson’s

and improving quality of life� We continue to seek funding for the Focus� Somevery kind people have sent donations and together with some advertising funds�we have been able to continue with the publicationHOW FREQUENT IS IT?QuarterlyHOW DO I GET IT?Contact Lizzie Graham

Flexicard

WHAT IS IT?In the summer of �� a Flexicard was produced and funded by Hoffmann�La Rochewhich stated ‘I have Parkinson’s disease� Please allow me time� In case of an emer�gency contact��’ Once again� thanks to Hoffman�La Roche� these cards have beenreproduced but this time in eight languages� These cards are available� free ofcharge HOW FREQUENT?Always availableHOW DO I GET IT?Contact Lizzie Graham

EPDA NNewsletter

WHAT IS IT?The Newsletter is to be redesigned and will be used as a marketing tool to promotenot only the work programme of the EPDA but at the same time enhance the pub�lic image of the organisation itself� We hope that you will take some of the newsand reproduce this in your own magazines and newslettersHOW FREQUENT?QuarterlyHOW DO I GET IT?See EPDA website

European PParkinson’s NNurses NNetwork ((EPNN) JJournal

WHAT IS IT?A new publication will be launched in Lisbon in May at the EPNN Satellite� run�ning alongside the ‘Working in Harmony – The Team Approach’ conference� It is avehicle for networking with international PDNS individuals and groups toexchange and promote higher standards of careHOW FREQUENT?QuarterlyHOW DO I GET IT?Contact Lizzie Graham

Patient IInformation LLeaflets

WHAT IS IT?The Patient Information Leaflet series on the EPDA website has also been publishedand produced with the help of people with Parkinson’s from throughout Europe�With the support of Novartis and Orion Pharma� these leaflets have been translatedinto other languages e�g� Bulgarian� Italian� Icelandic to name but a few HOW FREQUENT?Always availableHOW DO I GET IT?Contact Lizzie Graham

EPDABUSINESS PLAN


The ethos of the Association is to manifest a“partnership for progress”, bringing together

dedicated organisations representing the interests ofpeople living with Parkinson’s disease togetherwith their professional counterparts in medical, sci-entific, commercial, industrial and pharmacologicalspheres.

The specific focus of the association is on pro-moting a wider understanding of how Parkinson’sdisease impacts on the lives of patients, their fami-

The European Parkinson’s Disease Associationbusiness plan: What it is and what it will do

Mission satement: To develop a dialogue between science and society

Objective:To promote international understanding of Parkinson’s disease, enabling people livingwith Parkinson’s and their families to draw on best caring practice worldwide, to accessthe latest medical and surgical advice and thus make informed choices to achieve thebest quality of life possible

lies and carers, as a means to mobilising actions forremoval of barriers to their fullest possible socialand economic participation.

The EPDA seeks to make a significant impact onthe enormous costs of the current failure to:� Provide the maximum opportunity for those withParkinson’s disease and their carers to make a sig-nificant contribution to their community� Alleviate the social and economic burden on adecreasing number of carers and on society in general

The successful implementation of strategy iscrucial to the EPDA developing credibility as anadded value body supporting and complement-ing the efforts of its constituent organisations.

Key indicators for early actions that arepotentially affordable, are:� Have universal application to the EPDA� Influence understanding and communicationof the realities for those with PD� Distribute existing “best-practice” knowledgeand guidelines to all patient groups within theEPDA� Establish a database of facts, figures anddemographics which will support the “businesscase” for further actions� Already in progress with one or more of theEPDA constituents who are prepared to takethe lead in progressing further.

Key indicatorsProjects, which have been identified for possi-ble early adoption, from which a selection willbe made, include the following:

� Working with pharmacists to improvecompliance� Working with the media to improve theirunderstanding and more positive reporting onParkinson’s disease� Developing educational programmes withinthe sphere of Parkinson’s disease, with thepatient as educator� Counteracting discrimination and misunder-standing of Parkinson’s disease.

This list will be varied and added to through theongoing consultation processes with constituentorganisations.

Projects

Emerging strategies and implementation

Newly elected Board members

United Kingdom

Netherlands

Luxembourg

Slovenia

Israel

Denmark

President

Vice president

Secretary

Treasurer

Member

Young onset

Mary Baker

Peter Hoogendoom

Mariella Graziano

Branko Smid

Gila Bronner

Svend Anderson

Retired Board members

IrenaRektorova

RaphaelMedan

Louise van derValk

Vicepresident

Treasurer

Secretary

CzechRepublic

Israel

TheNetherlands

November 2003

EPDA 2003 FINANCIAL REPORT

INCOME

Members fees 10,285 0 10,285 7,910 0 7,910

Contributions 58,462 0 58,462 73,846 0 73,846

Working Group donations 46,408 0 46,408 0 0 0

EPNN donations 6,750 0 6,750 0 0 0

Goods sold and commission received 0 0 0 50 0 50

Advertising revenue 0 11,100 11,100 0 900 900

121,905 11,100 133,005 81,806 900 82,706

OTHER INCOME

Gains on foreign exchange 595 0 595 464 0 464

Deposit account interest 224 39 263 139 0 139

122,724 11,139 133,863 82,409 900 83,309

EXPENDITURE

Printing postage and stationery 765 586 1351 358 0 358

Euralia 0 0 0 0 0 0

Meetings – AB, GA etc 11,308 0 11,308 16,699 0 16,699

Officers expenses 3,506 0 3,506 8,930 0 8,930

Website 640 0 640 640 0 640

Purchases 0 0 0 0 0 0

Gifts and donations 0 0 1,650 143 1,793

Honorarium 0 0 0 0 0 0

Magazine costs 0 17,285 17,285 0 11,792 11,792

Consultancy and overhead costs 33,600 0 33,600 40,671 0 40,671

Travel expenses 452 120 572 4,970 0 4,970

Transfer to P D I Ltd 50,800 (50,800) 0 27,855 (27,855) 0

Working Group costs 20,983 0 20,983 0 0 0

EPNN expenses 2,883 0 2,883 0 0 0

Conference costs 0 0 0 12,931 12,931

10th Anniversary Conference (775) (775) 23,718 31,290 55,008

Grants repaid 0 0 8,408 0 8,408

Pharmacy Through Europe costs 5,000 0 5,000 0 0 0

Conference promotion 0 1,970 1,970 0 624 624

Companies House fees 0 15 15 0 29 29

Membership fees 301 0 301 0 0 0

Accountancy 0 2,350 2,350 0 1,800 1,800

Depreciation 0 92 92 0 92 92

Bank charges and interest 265 112 377 269 53 322

130,503 (29,045) 101,458 134,168 30,899 165,067

NET SURPLUS/(DEFICIT) (7,779) 40,184 32,405 (51,759) (29,999) (81,758)

EPDA£ £ £ £ £ £

EPDA

2003 2002

PDI PDITOTAL TOTAL

CONSOLIDATED INCOME AND EXPENDITURE ACCOUNT –FOR THE YEAR ENDING 31 DECEMBER 2003

FINANCIAL

REPORT


EPDA 2003 FINANCIAL REPORT FINANCIAL

REPORT


INCOME

Fixed assets:

Tangible assets 1 92 93 1 184 185

CURRENT ASSETS

Stocks 0 0 0 0 0 0

Debtors 19,033 1,014 20,047 762 4,602 5,364

Cash at bank 98,747 10,610 109,357 39,174 6,042 45,216

117,780 11,624 129,404 39,936 10,644 50,580

CREDITORS: AMOUNTS FALLING DUE

WITHIN ONE YEAR

Creditors and accruals 99,293 1,850 101,143 13,670 41,146 54,816

NET ASSETS 18,488 9,866 28,354 26,267 (30,318) (4,051)

RESERVES

Balance brought forward 26,267 (30,318) (4,051) 78,026 (319) 77,707

(Deficit)/surplus for year (7,779) 40,184 32,405 (51,759) (29,999) (81,758)

Balance carried forward 18,488 9,866 28,354 26,267 (30,318) (4,051)

EPDA£ £ £ £ £ £

EPDA

2003 2002

PDI PDITOTAL TOTAL

CONSOLIDATED BALANCE SHEET –FOR THE YEAR ENDING 31 DECEMBER 2003

Basis of audit opinion We conducted our audit in accordance with Auditing Standards issued by the Auditing Practices Board. Anaudit includes examination, on a test basis, of evidence relevant to the amounts and disclosures in the financialstatements. It also includes an assessment of the significant estimates and judgements made by theAdministration Board in the preparation of the financial statements, and of whether the accounting policies areappropriate to the Association’s circumstances, consistently applied and adequately disclosed.

We planned and performed our audit so as to obtain all the information and explanations which we consid-ered necessary in order to provide us with sufficient evidence to give reasonable assurance that the financialstatements are free from material misstatement, whether caused by fraud or other irregularity or error. In form-ing our opinion, we also evaluated the overall adequacy of the presentation of information in the financialstatements.

OpinionIn our opinion the financial statements give a true and fair view of the state of the association’s affairs as at 31December 2003 and of its deficit for the year then ended and have been properly prepared in accordance withthe association’s constitution.

M J Read & Co1 Cobden RoadSevenoaksKentTN13 3UB

EPDA MEMBER ORGANISATIONSMEMBERORGANISATIONS


Austria Parkinson Selbsthilfe Osterreich

Belgium Association Parkinson Belge

Belgium Viaamse Vereniging Parkinson

Belgium Association Parkinson (Fraiture-en-Condroz)

Bulgaria Fondazia Parkinsonism

Czech Republic Parkinson’s Disease Society

Cyprus Parkinson’s Disease Association

Denmark Dansk Parkinson Forening

Estonia Estonian Parkinson’s Society

Faeroe Islands Parkinsonfelagid

Finland Suomen Parkinson-Litto Ry

France Federation des Groupements de Parkinsoniens

Germany Forderverein Parkinson e.V

Iceland Parkinson Association in Iceland

Ireland Parkinson’s Association of Ireland

Israel Parkinson Group

Italy Azione Parkinson

Italy Parkinson Italia

Lithuania Lithuanian Parkinson’s Society

Luxembourg Association Luxembourgeoise de la Maladie de

Parkinson

Netherlands Parkinson Patienten Vereniging

Norway Norges Parkinsonforbund

Poland Kracow Parkinson’s Disease Association

Poland Stow, Choroby Parkinsona

Portugal Associacao Portugesa de Doentes de Parkinson’s

Russia The Regional Non-profit organisation for the

Advancement of Parkinsonien Patients

Slovenia Parkinson’s Disease Society of Slovenia

Spain Federacion Espanola Parkinson

Sweden The Swedish Association of Neurologically Disabled

Sweden The Swedish Parkinson’s Disease Association

Switzerland Schweizerische Parkinsonvereinigung

Turkey Parkinson’s Disease Society

Ukraine The Association for Parkinsonian Disabled

United Kingdom Parkinson’s Disease Society of the United Kingdom

Yugoslavia Serbian Association against Parkinson’s Disease

MAB AND ASSOCIATE MEMBERS MEMBERORGANISATIONS


Prof. Werner Poewe, Austria

Dr Chris Van der Linden, Belgium

Prof. P J Delwaide, Belgium

Dr Jean-Emile Vanderheyden, Belgium

Prof. Wenzeslav Bossnev, Bulgaria

Prof. P J Delwaide, Belgium

Dr Marios Pantzaris, Cyprus

Dr Jan Roth, Czech Republic

Dr Erik Dupont, Denmark

Prof. Pille Taba, Estonia

Dr Heikki Teravainen, Finland

Prof. Herve Allain, France

Dr Ferenc Fornadi, Germany

Dr S Sveinbjornsdottir, Iceland

Dr Michael Hutchinson, Ireland

Dr Nir Giladi, Israel

Prof. Tommaso Caraceni, Italy

Prof. Alberto Albanese, Italy

Mindaugas Socas, Lithuania

Dr Bucchler Pit, Luxembourg

Dr M Horstink, Netherlands

Dr R S Holmsen, Norway

Dr Anna Krygowska-Wajs, Poland

Dr Jakub Sienkiewicz, Poland

Dr A Castro Caldas, Portugal

Prof. Natalia Federova, Russia

Prof. Alla Guekht, Russia (Ass Member)

Dr Dan Pirtosek, Slovenia

Prof. Eduardo Tolosa, Spain

Prof. Olle Lindvall, Sweden

Dr Bo Johnels, Sweden

Dr M Sturzenegger, Switzerland

Dr Prof Sibel Ozemekci, Turkey

Dr Irina Karaban, Ukraine

Prof. Leslie Findley, UK

Prof. Nadia Sternic, Yugoslavia

Association of Physiotherapists in Parkinson’s Disease EUROPE (APPDE)

Atlantic-Euro-Mediterranean Academy of Medical Sciences

Division of Movement Disorders of the Russian Society of Neurologists

European Federation of Neurological Societies (EFNS)

European Federation of Neurological Associations (EFNA)

Long-term Medical Conditions Alliance (LMCA)

Movement Disorder Society (MDS)

National Tremor Foundation, UK

Associate members

Medical Advisory Board

National Temor Foundation

EFNA

APPDE

EPDA DETAILS


EEPDA AAdministration BBoard

The European Parkinson’s Disease Association: Here’sa glance at the people behind it and what it is they do...

PPresident: Mary Baker,United KingdomMary is serving her sixth termin office as president. She isalso president of theEuropean Federation ofNeurological Associationsand vice president of theEuropean Brain Council.

SSecretary:Mariella Graziano,LuxembourgMariella was born in BuenosAires, Argentina, and emi-grated to Great Britain in the80s, where she graduatedas a physiotherapist. She iscurrently the president of theAssociation ofPhysiotherapists inParkinson’s Disease Europe(APPDE).

VVice ppresident:Peter Hoogendoorn,NetherlandsPeter became actively involvedin the Dutch PatientsAssociation (PPV) in the early90s, initially as a member ofthe Publicity Working group. In1998 he was elected a mem-ber of the Board and has beenChair of PPV since 2000.

TTreasurer:Branko Smid,SloveniaBranko was born in Kranj,Slovenija, in 1956. In 1996he became president of theSlovenian PD Society. Underhis guidance, membershiphas increased from 30 toalmost 400 people. Brankohas had PD since 1986.

YYoung oonset:Svend Andersen,DenmarkSvend, has had Parkinson’sdisease for 13 years andworked as a clinical psycholo-gist full time from May 1978until August 1996 and sincethen he has worked part-time.He has also written and pub-lished, “Health is betweenyour ears” about living a goodlife with a chronic disease.

MMember:Gila Bronner,IsraelGila is a sex therapist andsexual health counsellor,active in the promotion ofsexual health since 1973.Her professional experienceincludes treatment of menand women with sexual dys-function. Her internationalactivities include training ofphysicians, nurses and socialworkers.

LLegal aadvisor:Stephen Pickard,BelgiumStephen Pickard is anEnglish solicitor working inthe Brussels office of a largeSpanish law firm, Garrigues.Stephen’s father, CyrilPickard, himself aParkinsonian, was treasurerof the UK Parkinson’sDisease Society in the1980’s. His role is voluntary.

LLiaison/Projects:Lizzie Graham,United Kingdomhas worked with the EPDAsince it was formed in June1992, in a voluntary capacityuntil November 2001, whenshe was appointed on a con-sultancy basis to organise,administer and co-ordinatethe EPDA calendar of events.She has two sons.

EPDA CONTACT DETAILS

Lizzie GrahamEPDA liaison/project manager4 Golding Road, Sevenoaks, Kent TN13 3NJ, [email protected]/F:++441732 457683M: 07787 554856

Avenue Nestor Plissart 4, 1040 Brussels, Belgium

www.epda.eu.comwww.epdaconferences.orgwww.parkinsonpoly.com

EPDA PATRONS

Christoph Cardinal Schonborn

John Bowis, OBE, MEP

David Jones, CBE

John Walker

EXTRA INFORMATION


European Parliament, meeting with MEPs,BrusselsEPDA Best Practice meeting with pharmaceu-tical/biotech industry, LondonEPDA Pharmacy Project meeting, London

Drug Information Association Meeting, Rome

World PD Day, Moscow

Working Group on PD meeting, Moscow

World PD Day, Belgium

Novartis Foundation, Basle

Amersham Health meeting, Seville

EBC Meeting, Nice

Novartis Foundation meeting, Colmar

Biotech Industry Meeting, Washington

Launch of EBC meeting, Brussels

APPDE Conference, Southampton

Medtronic meeting, Lausanne

EPDA Pharmacy Project meeting, London

Amersham Health meeting, Amsterdam

EFNS Congress, Helsinki

EFNA General Assembly meeting, Brussels

Neuroscience meeting in European Parliament,BrusselsAtlantic Euro Med Academy of Med Sciences,BulgariaWHO meeting, Geneva

First BMJ Patients Advisory Committeemeeting, LondonRelationship between Industry and PatientAssociations, CoventryWPDD International symposium & launch ofGlobal Declaration for PD, Mumbai 4th Annual Accelerating Clinical Trials, Geneva

EPDA Presentations/Meetings in 2003

January

February

February

March

April

April

April

May

May

May

May

June

June

July

July

July

August

September

September

September

September

October

October

November

December

December

Mary Baker (MB)

MB/LizzieGraham (LG)MB/LG

MB

MB/LG

MB/LG

MB

MB

MB

MB

MB

MB

MB

MB

MB/LG

MB/LG

MB

MB/LG

MB/PeterHoogendoom (PH)MB

MB

MB

MB/LG

MB

MB/LG

PH

epda 2003 annual report

Documents