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

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.

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)

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

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

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

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

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

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