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

2. My girl Rett Syndrome “Normal” development 6 – 18 months
Developmental regression
Loss of speech
Loss of hand-use
Loss of mobility
Seizures
Breathing problems
Rett: 1 in 10,00 girls

3. A day in the life 24/7 care needs Continuous monitoring Meds Feeds
Seizure management
Autonomic Episodes
Meds
Feeds
Sleep
Appointments
Hospital admissions
(e.g 4 months in 2015)

4. What has worked well Support around diagnosis Partner in her care
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

5. 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
it would take 700 years on 1/2 hour a week to equal the language exposure of a typically developing child

6. What we still need Right to Speak Coordination of care & support
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
Provision of communication equipment
The Scottish Ministers must, to such extent as they consider necessary to meet all reasonable requirements, provide or secure the provision of—
(a)
communication equipment, and
(b)
support in using that equipment,
to any person who has lost their voice or has difficulty speaking.”.

7. Thank you