Transition of/for the LTV/NIV/CPAP patient

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Transition of/for the LTV/NIV/CPAP patient

• Neil Gibson MD FRCPCH
• Consultant in Paediatric Respiratory Medicine
• Royal Hospital for Sick Children
• Yorkhill
• Glasgow

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Some challenges

• Increasing physical dependency
• Life opening out for peers, closing down for
  patient
• Uncertain or gloomy future
• May exacerbate teenage mood issues
• Crises/acute deterioration
• Unplanned end of life crisis
• Inconsistent/non-existent paediatric-adult links

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Some more challenges

• Privacy issues
• See next slide !
• Changing family pressures
• Achieving independance
• Education/employment
• Whats the point?
• Structure of adult medicine care
• Nihilistic healthcare staff

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Adolescence
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The LTV/NIV/CPAP adolescent

• I am an individual
• I have a voice (might not be my own !)
• Please try to understand me
• Please remember I am a teenager
• I need encouragement
• I want options not a fait accompli
• Dont try to be hip (we dont use that word
  anyway)
• I know a lot about this ventilator stuff

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Changing expectations
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Neurodisability Care Plan

• Wheelchair / Seating Assessment
• Monitor Spine annual (ambulant)
• 6 monthly (non-ambulant)
• Symptom Enquiry respiratory, cardiac, pain,
• ECG / Echo
• Assessment of mood
• Respiratory Function
• Sleep Monitoring
• Resusitation Planning/Advanced directive
• Transfer to Adult Services

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Practical aspects

• Whose ventilator is it ?
• What about the other equipment ?
• Care packages
• Mono-speciality adult medicine
• Aging/splitting parents
• Loss of special status

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Clinical Situation
Clinical Expertise
Patient or Parent Preferences and Beliefs
Science/ Evidence
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Characteristics of good transition (Department
of Health 2008)

• Agreed process, strategically planned
• Clear pathway
• Clear identification of key worker
• Patient centered planning
• Multi-agency involvement
• Service responsive to young person family
• Minimal health inequalities/poor outcome
• Education, employment, social inclusion

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Characteristics of good transition (Department
of Health 2008)

• Flexible and timely response to problems
• Integrated multi-agency transition with choice
  and opportunity for independent living
• Option to develop self-management and
  self-referral
• Risk management esp. for vulnerable
• Involvement of primary care
• Transition team with appropriate skill mix
• Specialist commissioning, quality standards,
  measurable outcomes

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Adult OSA
Our patients
Adult spinal, etc
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Idealism !

• Joint clinics starting at paediatric service
• Possibly get DMD started within adult unit
• Multi-disciplinary approach
• Joint protocols/approaches
• Liaise with education and social services
• Flexible approach to age at handover
• Keep in touch after handover

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Summary

• Smooth transition is hard work
• Establish links
• Plan, plan, plan
• Be optimistic
• Get feedback