1. Sutton Children and Young People’s Neuro-disability Co Production Event
Hosted by Sutton CCG in Partnership with London Borough of Sutton, Sutton Education Services & Sutton Parents Forum
Date: 29th June 2017

2. Overview
The purpose of the workshop was to engage with all the stakeholders about the current neurodevelopmental pathway
This is following a decision being made by SWL and St George’s NHS Trust to change the access criteria.
A wide range of stakeholders including local Counsellors, local authority officers, voluntary sector, parents and CCG representatives were in attendance
The outcome of this work will feed into the SWL work
The first section of the workshop was listening to the views and experiences of the parents and carers
The second part of the workshop was used to gain the views of the stakeholders, the outputs are contained in this presentation.

3. What works well? Health Services:
Once diagnosed, good information exchange – Sutton Integrated Digital Care Record supports good treatment
Tier 4 - very good support, but at too late stage. BUT no step down support. Support out of borough
Early assessment/intervention makes a real difference
Diagnosis works better through paediatric route than via CAMHS
Education Services:
Primary schools tend to provide much more support than secondary.
ASD for some children where the specialist nurse involved with families immediately following diagnosis. Worked closely with Social Services
Transition to base works really well - examples of best practice highlighted at Stanley Park Base
Simple adjustments made help child in school (education)

4. Thinking about the current services for ASD/ADHD what doesn’t work well? What needs to change?
Access to services:
Always 'expect' to fight for a service
Reason of enabling rather than disabling can be used to restrict services
Cannot find out what services are available
Parents with children with less complex needs, often cannot get parity of services
Saturday club waiting list 1996!
Often children will re-enter services eventually (MH) if they did not get seen
Service experience:
Diagnosis not together (ASD / ADHD)
A lot of unnecessary appointments
More like a continuing health assessment
Takes a long time to get what you need
Look at other therapies
Do not jump straight to medication

5. Education:
High density of schools (transition does not work well)
Currently relies on school identifying conditions
Issue for high funding children
Secondary schools don’t provide support when compared to primary schools
Integration for milder conditions is variable at some bases, a flexible approach is required
Core assets - no report for parents
Social Care:
Some services for disabilities very good once get involved. Understand support needed for families. But not enough!
Carers assessments direct payments

6. What needs to change? Fragmented services
Not enough early intervention (need more)
Always 'expect' to fight for a service
Try to change stereotypes around ASD/ADHD
CAMHS needs to change
EHCPs not helping to take integrated approach
Role of heads and teachers, SENCO for schools - some good and some otherwise
Assumptions about "bad parenting" – prescribing
Transition to adult services results in a loss of support

7. Thinking about the future service for ASD/ADHD what does good look and feel like?
Professionals listening and working together - not making patients feel like they are "annoying“
Early access to services and intervention
There is a gateway to support services
Integrated assessment pathway
Gender bias in assessment e.g. an understanding that in girls other mental health conditions follow
Better local provision / more comprehensive / 24 hour
Changing attitudes / public perception
Better forward planning i.e. places at Dragonflies
Better joined up work EHCP
Need to have an organisation that ensures that schools are accountable

8. What opportunities are there for strengthening early help services for children and young people with ADHD/ASD?
Paediatricians
- signposting to support groups
- courses 'challenging behaviour‘
Strategies to help children and parents e.g. End strategies for challenging behaviour
Do not exclude someone because they are fluent speech
Different agencies have different thresholds, there are opportunities to harmonise thresholds and ensure that all children have access to early help services
There are opportunities to reduce the variability between schools
Offer additional services without diagnosis
Should not be a push for 'formal' diagnosis before access to services
How to see through children who are masking? Under diagnosing in Sutton? - More awareness?
Strengthen the use of EHAT - Early help assessment tool - early intervention

9. How can health, social care, education, voluntary organisations work together to provide joined up services for children with ADHD / ASD?
Information - Everyone is different! About each child and family needs to be pooled. Single record, single point of contact
Better shared understanding - ASD, not MH, neurological, not LD
Diagnosis is key to joined up support
NHS diagnosis, CAMHS if needed, community paediatricians
Alternative pathways to diagnosis consider NHS, Education and Social workers
Key workers
Pooled budgets