pharmacological treatments in cerebral palsy dr anthony b ward university hospital of north...
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Pharmacological Treatments in Cerebral
Palsy
Dr Anthony B WardUniversity Hospital of North
StaffordshireStoke on Trent, UK.
U.H.N.S
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Video
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Treatment of Cerebral Palsy
Directed at consequence of brain injury throughout childhood
Organised paediatric care Complex problem requiring MDT Transition to adult services Big “black hole”
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Cerebral Palsy
Reasonable standards of care during childhood
Moving to adult life Need to address wider issues Specialised service to address
these problems
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Maturation
Consolidate identity Achieve independence/autonomy Establish adult relationships Find vocation/fulfilling lifestyle
Hardoff D & Chigier E, 1991
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Disabled School Leavers
Problems
Teenagers!Fall Out of Paediatric CareNo Adult Service Transition
Adults!
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Disabled School Leavers
Transition Holes
N.H.S. 16 years S.S.D.s 18-19 years Education 14-16 years Careers service 19 years
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Epidemiology
Constitute 5% disabled pop. 2.5% of age group
Small numbers - high prevalence
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Epidemiology
Cerebral palsy (36%) Spina bifida (15%) Trauma (TBI, SCI) (12%) Rare neuromuscular conditions (28%)
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Major Issues in Cerebral Palsy
Physical Special senses Communicatio
n Cognitive
Behaviour Socialisation Education Development
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Mobility Motor control Coordination
Dexterity Sensation Special senses
Epilepsy Continence Tissue viability Swallowing/
salivation Pain Activities of daily
living
Physical Issues
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Evidence for Problems of Disabled Young People
Aung T S, Boughey A M, Ward A B. Clinical Rehabilitation, 1994; 8 (3): 147-153.
Ward A B, Chamberlain M A. Rehabilitation of the Physically Disabled Adult. 2nd Ed. London. Chapman Hall
Bent N, Tennant A, Swift T, Ward AB, Posnett J, Chamberlain MA. Lancet 2002; 360 (9342): 1280-1286.
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Constraints for Young Adults
Constraint Examples
•Resources•Personal ability•Family concern•Service mismatching
•Lack of appropriate facilities•Low self-esteem & self-image•Decreased aspirations for child & letting go of childhood•Failure to match client with facility
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Mismatch of Service Provision & Individual
Needs
Lack of coordinated rehabilitation service Shortage of skilled personnel in health and
social services Poor liaison between services fragmenting
responses to individuals Lack of accessible & up-to-date
information resource for service users & for providers
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Inadequate provision of certain services
Inadequate provision & lack of choice of residential accommodation
Inadequate day care provision outside city centres
Mismatch of Service Provision & Individual
Needs
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Problems for Disabled School Leavers
Lost opportunities Miss out on life
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Health Finance Transport Independence
Problems for Disabled School Leavers
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Health Problems
Unable to Access G.P. Dentist Optician Peer Group
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Health Problems
Visual acuity Hearing Orthopaedic difficulties Foot problems Dental hygiene Skin
Pressure sores Spasticity/limb
deformity Contractures Incontinence Constipation Mood changes
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Health Education
Contraception Nutrition Hygiene Taking control of health
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Disablement
Mood changes Self-harm Confidence
Autonomy
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Expectations
Poor in congenital & longstanding conditions
Better in acquired disability after age 12 years
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Evidence
Preventable medical problems Poor quality of life Fail to reach potential
Chamberlain MA, 1993
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Service Responses
Few Dedicated ServicesEdwards & Warren, 1990
Aims - Promote health -Improve quality of life
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North Staffordshire Young Adult Service
Established 1989 Identify needs of young people
with disabilities leaving paediatric care
Networking Provide treatment & services
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Disabled School LeaversProblems
What do they want? Statutory services Network of services to access
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Living Options Values
Disabled Person
Response point to user’s needs
Opportunities for personal
development
A place to live
Community access
Personal support services
Specialist services
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Young Adult Team
Client
Nurse
Doctor(GP/
Specialist)
TherapistPT/OT/
SLT
Careers Advisor
Disability Employment
Advisor
Clinical Psychologist
Advocate Family
Volunteer/ Information
Source
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Functions
Information Finance Independent living Mobility/transport Leisure & recreation
Occupation Education Training Employment Day facilities
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Young Adult Services
YAT vs. Ad-hoc servicesLancet 2002; 360(9342): 1280-1286.
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YAT vs. Ad-Hoc Services
Four locations in England YAT approach vs ad hoc approach Retrospective cohort study 254 physically disabled young
people 124 healthy controls
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Measures
Body function impairments Activity limitation Physical health Psychosocial aspects Participation
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YAT vs. Ad-Hoc Services
Absence of pain, fatigue & stress increased odds of participation
No more costly to implement YAT YAT more likely to increase
participation
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YAT vs. Ad-Hoc Services
Multi-disciplinary assessment YAT > sum of individual
components Expertise One-stop shop Also benefits inter-agency working
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Y.A.T. Benefits - Networking
Specialist
Services
Primary Care
Y.A.T.
C.R.T.
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Conclusion
Need for dedicated activity Brings statutory & voluntary
agencies together Valued by patients
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Video