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

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

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