About the project

North West Autism Diagnosis and post-diagnosis project

Planning Travels

This is an open project intended to support and facilitate communication about autism diagnosis and post-diagnostic support across the different healthcare systems throughout the North West. We are looking to identify strengths in each area, and to support examples of good practice. The two staff members working on this project are employed by the National Autistic Society (NAS). They both bring senior management experience and lived experience of autism.

 

Through this project, we would like to support engagement at an early, shaping stage with the communities that use these services. In this instance, that means autistic adults, autistic children and their families, and autistic young people. This project covers all autistic people – those with a learning disability, and those without.

 

In April 2021 the Greater Manchester Autism Consortium project (GMAC), which is part of the National Autistic Society, was given additional funding by the GM Mental Health commissioning hub. This was a one-off grant, and the project operates completely independently. The areas covered by this project include Cheshire/ Wirral and Merseyside, Lancashire and South Cumbria.

 

The National Autistic Society recruited two new project officers in September 2021, each working 21 hours a week:

  • Nick Rosenthal in Lancashire and South Cumbria

  • Hayley Brown in Cheshire, Wirral and Merseyside.

 

 

What have we been funded to do?

 

We have been asked to do the following.

  • Map work already underway across the North West on autism diagnosis and post-diagnostic support to find out what is already happening.

  • To work with the Integrated Care System, local authorities, service providers, the VCSE, autistic people and their families to support them to improve their diagnosis services and post diagnosis support.

  • By diagnosis and post diagnosis, we mean pre-diagnosis, diagnosis and post-diagnosis. We anticipate that the biggest part of the project will relate to post-diagnosis, which we define as up to 12 months after an autism diagnosis and relating to information that supports the autistic person and or their families to understand and come to terms with the diagnosis and the impact this has on their life.

 

On this project, we will identify autistic adults and family members in the NW region and engage them in the work underway locally. We will do this by working with existing groups and charities, and also by seeking out people who may not be linked with any existing groups. We will act as a conduit between the autistic community and family members, service providers and commissioners.

  •  We will extend the GM diagnosticians group, which was established in 2020 as a peer support network and invite clinicians and practitioners from across the North West to join this network.

  • The project will share national, regional and local examples of good practice and support the implementation of the quality standards referenced in the National Autism Strategy published in July 2021.

  • The project will also open up the GMAC parent seminar offers (currently run online) to parents in the NW region. This includes seminars on managing anger, and sensory and transition.

  • There is currently no equivalent adult seminar offer in Greater Manchester, but there is work underway to introduce monthly adult focus sessions. The NW project will share any learning from this development and seek to identify other support that may be available to adults in the North West regions outside of GM.

 

What are the expected outcomes of this project?

 

  • To contribute to the creation of a more holistic process of diagnosis and post-diagnosis across the North West region.

  • Increased co-production with autistic people and their families. Good co-production needs dedicated resource to support that involvement.

  • To support diagnosis professionals to access peer support and feel more linked in with the regional work. The network has worked well in GM in the past year when all the diagnostic teams had to move diagnosis and post diagnosis virtually and the group have been able to share good practice and offer advice and support to one another.

  • Produce a set of recommendations for commissioners and service providers in the region to help them implement diagnosis improvements under the NHS Long Term Plan.

 

Who are GMAC and what do we do?

 

The Greater Manchester Autism Consortium Project is a National Autistic Society project, funded by the 10 Greater Manchester (GM) councils and health bodies as well as the GM Health and Social Care Partnership. The project has been in existence since 1993 and has two main functions:

  • To give information and expert advice to autistic people, family members and professionals across Greater Manchester,

  • To support the development of better support, training and services for autistic people through the GM Autism Strategy.

 

The GM Autism Strategy “Making Greater Manchester Autism Friendly” was published in 2019 and has 6 priorities. Those are Diagnosis, Housing, Criminal Justice, Transition, Employment and Reasonable Adjustments in Acute Hospital settings.

 

The Diagnosis element of this work has consisted of the following;

  • Developing a service specification for adult diagnosis and post diagnosis support in GM

  • Auditing the 10 areas against that service specification

  • Creating a forum for diagnosis professionals to meet called the GM Diagnosticians forum to share best practice and work together

  • Creating two groups (one for adults and one for children) to advise on how to improve post-diagnosis support in GM and suggest an ideal GM post diagnostic offer based on best practice.

  • Supporting the GM NHS Long Term Plan LDA and MH planning commitments with respect to better diagnostic and post-diagnostic support for autistic people of all ages. In particular, the project will help to identify unmet needs and suggest how some of those needs could be met based on the work of the working groups above.

Mari Saeki, Nick Rosenthal, Hayley Brown, January 2022

 

How to contact us:

 

Mari Saeki
Overall project manager

Mari.Saeki@nas.org.uk

 

Hayley Brown

Regional lead for Cheshire, Wirral and Merseyside

Hayley.Brown@nas.org.uk

 

Nick Rosenthal

Regional lead for Lancashire and South Cumbria

Nick.Rosenthal@nas.org.uk

 

 

 

 

 

Version dated 6.1.22