SW London letter to CCG's final 190917

Date: 19th September 2017 To:

The Senior Children’s Commissioners: • Kingston CCG • Merton CCG • Richmond CCG • Sutton CCG • Wandsworth CCG

We write on behalf of the Parent Carer Forums, NAS branches and autism groups across Merton, Richmond, Kingston, Sutton and Wandsworth.

We hope that this reaches you before your meeting on 21st September which we understand involves all members of the Alliance of 5 CCGs who commission the ASD diagnostic service (forming part of the neurodevelopmental pathway) from South West London and St George’s Mental Health Trust at Springfield Hospital.

We are pleased that you are considering a joint approach and hopefully you will agree some overarching principles, although we understand (from feedback received so far) that there may be different commissioning arrangements and ASD neurodevelopmental, diagnostic pathways followed in each borough.

We are pleased to note from the recent communication received from each individual CCG that ‘South West London CCGs are fully committed to talking to local people before reaching any conclusions on the way forward’ and, as a starting point, we welcomed the recent local meetings with the Boroughs’ CCG Commissioners which gave us an opportunity to share some views and experiences of the current services.

Following on from these meetings, we would welcome a full consultation on any proposals for new neurodevelopmental and diagnostic pathways that you may have drawn up as a result of recent conversations with local groups.

We are keen to continue to work together to get the re-designed neurodevelopmental, diagnostic pathway right for families across all five boroughs.

In order to do this, we would welcome information from you on timescales for a full consultation on proposals for new neurodevelopmental, diagnostic pathways – be it one pathway across all 5 boroughs or separate pathways in each borough.

The local Parent Forums, NAS branches and autism groups within the five boroughs affected have, in the last few months, been bombarded by enquiries from concerned parents about what is happening with these pathways.

We have done our best to keep them informed and updated on developments but we feel it is important for them to be able to have their say through official, formalised channels such as a consultation.

It is vitally important that there is regular and clear communication with parents and families affected by changes to the neurodevelopmental pathways and diagnostic services.

There is a good deal of frustration about the existing neurodevelopmental diagnostic pathway and about intervention services provided by CAMHS. We feel that this is now the right time for CCGs and Local Authority Commissioners to review ASD diagnosis and NHS services for ASD/ADHD as a whole, and with full input from local communities.

For this reason, we are keen to hear when the consultation will begin and how it will be publicised to local groups and families most likely to be affected. We would also like to take this opportunity to suggest that the consultation engages families on the waiting lists for diagnosis and those who are in the process of being considered for a referral.

We look forward to hearing when the consultation will begin and how our organisations and all our parent members can be fully involved.

Yours faithfully, //electronic signatures included/// Romany Wood-Robinson Co-Chair, SFV Richmond & SFV CAMHS Lead

Caroline North Co-Chair, SFV Kingston

Parent Carer Forums for Kingston, Richmond, Wandsworth, Merton & Sutton:

NAS Branches / autism groups for Richmond, Sutton and Merton:

Autism support & advice group for Kingston and surrounding areas: