LeagueNews - Cerebral Palsy League

Queensland Cerebral PalsyHealth ServiceLAST year, Minister for Health, the HonGordon Nuttall MP announced theallocation of $1 million to establish acoordinated health program to helpQueensland children with cerebral palsy.Queensland Health was pleased toannounce the current development of theQueensland Cerebral Palsy HealthService (QCPHS), which is due foroperation in June this year.The QCPHS was funded to develop anumber of specialist health servicesincluding:• Hip surveillance and treatment program• Botulinum Toxin Program Expansion(BTX-A)• Single Event Multilevel OrthopaedicSurgery (SEMLS)• Other new spasticity treatments, suchas Intrathecal Baclofen (ITB) Therapyand Selective Dorsal Rhizotomy(SDR)The QCPHS will work closely with stafffrom the League to ensure that its servicesare coordinated with the care that theLeague provides to Queensland childrenwith cerebral palsy, and their families.Dr Lynne McKinlay, RehabilitationSpecialist, and Ms Megan Kentish, SeniorPhysiotherapist with the QueenslandPaediatric Rehabilitation Service, RoyalChildren’s Hospital will coordinate the taskof establishing the service.“We are pleased to be given thisopportunity to improve specialist healthservices for children with CP and theirfamilies, and to continue our close workingrelationship with League staff,” DrMcKinlay said.“We are committed to improving thehealth of children with cerebral palsy inQueensland,” she said.Both Dr McKinlay and Ms Kentish arealready familiar with some Leaguefamilies through their valuable work withthe Botulinum Toxin program.Queensland Health has also employedNancy Hoyes as Project Manager for theQCPHS over the next 12 months, to workwith Dr McKinlay and Ms Kentish, to helpestablish the QCPHS.Ms Hoyes worked with the League duringthe 1980s and, after 20 years working withchildren through Queensland Health, wasexcited to be part of the project and theopportunities it would provide.During the next few months the QCPHSwill send information on its services tofamilies on the League’s mailing list.This information will provide further detailsabout the QCPHS and invite feedback,questions or concerns.Queensland Cerebral PalsyRegister:New hope for the futureprevention of cerebral palsyAUSTRALIAN of the Year 2003, ProfessorFiona Stanley, has spent decadesresearching the incidence of conditionslike spina bifida and cerebral palsy throughthe use of state-wide population registers.She advocated strongly for theestablishment of good informationsystems to investigate the causes ofconditions like these and, last year, theQueensland State Government agreed tohelp by providing ongoing funding for theestablishment of a Queensland CerebralPalsy Register (QCPR).The QCPR would be used to aid progresstowards the prevention of cerebral palsyas well as provide governments andservice providers with information toestablish better services based onoutcomes and circumstances of peoplewith cerebral palsy in Queensland.Never before in Queensland has therebeen a comprehensive source ofinformation where people with cerebralpalsy live, their housing needs, educationand employment circumstances, and thetypes of circumstances that contributedto their condition.Prevention and better servicesfor people with Cerebral PalsyThe QCPR will provide information thatwill:• Help researchers to find and preventcauses of cerebral palsy,• Help clinicians to understand theoutcomes of interventions by lookingat long term outcomes, and• Help services to plan and organise theirservices to meet the needs of peoplewith cerebral palsy wherever they live.For further information on theQueensland Cerebral PalsyRegister, Australian CerebralPalsy Register, how to register,or uses of informationprovided to the Register,please contact:A secure register for the bestinformationThe QCPR has a secure Web interface,which will allow people to see and updatetheir own information on-line, 24 hours aday.As a security measure, Information isprotected by two firewalls to preventunauthorized access, as well as a 128bit encryption password protected accessfacility, which onlyallows Queensland Databaseadministrators and the password holder,to see their personal information.Good choices for people withcerebral palsyAs QCPR is consent based, participantscan choose to place their information onthe register, or not.Once on the register, they can alsochoose to allow the registry staff to informthem of research opportunities.Participants can elect to allow nonidentifyinginformation to be provided tothe Australian Cerebral Palsy Register.These different consents can be addedto, removed or changed by participantsthrough the QCPR web interface, or bycalling the registry on 07 3358 8122.There is no charge, no delay and no limitto changes.Australian Cerebral Palsy RegisterOnce the Australian Cerebral PalsyRegister (ACPR) begins, it will housenon-identifying information aboutparticipants with cerebral palsy inAustralia.It will never collect or hold identifyinginformation which could be used toidentify individuals.If consent is given, the state registrieswill send relevant birth and health caredetails to the ACPR when children turnfive years old.The ACPR is a huge database, whichwill be used to identify the variouscauses of cerebral palsy and greatlyassist the progress towardsprevention.Emma BevisThe Database AdministratorQueensland Cerebral Palsy RegisterPh: 07 3358 8122fax: 07 3358 8143ebevis@cplqld.org.auwww.qcpr.org.au5