Dr Gael Gordon Parent Perspective Getting it Right

Dr Gael Gordon Parent Perspective Getting it Right for Parents with Exceptional Healthcare Needs Scottish Parliament, 11 December 2017

My girl Rett Syndrome • “Normal” development 6 – 18 months • Developmental regression • Loss of speech • Loss of hand-use • Loss of mobility • Seizures • Breathing problems

A day in the life 24/7 care needs • Continuous monitoring • Seizure management • Autonomic Episodes • Meds • Feeds • Sleep • Appointments • Hospital admissions

What has worked well • Support around diagnosis • Joined-up approach • Partner in her care • Acknowledged as an expert in my child by Neurology and A&E; paramedics • Carer-friendly employer • Glasgow Caledonian University

What has not worked well • Speech and Language • 18 month wait for triage • 6 week block model • Not suitable for complex communication needs • Social Services • 5 years from referral until support awarded • Housing adaptations • No Disabled Facilities Grant • Short term solutions for long term problems

What we still need • Right to Speak • The Health (Tobacco, Nicotine Etc. and Care) (Scotland) Act 2016, Part 4 • Coordination of care & support • Appointments • Interactions between professionals • If it works for complex children, it will work for everyone • Long-term education/support strategy

Thank you