Update: “Improving Autism Assessment & Integrated Support for Children & Young People in Cheshire East”

The SEND Partnership has sent us the following update on Autism Assessment Pathways to share with parent carers in Cheshire East – you will see that there was a session in Macclesfield on 21 January and there are two lined up in Crewe where parents can meet representatives from this workstream and ask any questions
As always, CEPCF parent reps would also really like to hear your thoughts so that they can ensure they can represent you – please email cheshireeastpcf@gmail.com call 07794431768 or through the Facebook group

Update for Cheshire East Parent Carer Forum: Improving Autism Assessment and Integrated Support for Children and Young People aged 0-25 Across Cheshire East
(Publication of Integrated Autism Pathways)

As many of you will know we have been working hard to reduce the waiting times for autism assessments for children and young people across Cheshire East and to improve the overall pathway and support available.

We want to update you on some of the improvements we have made to waiting times and the extra support that is now available across Cheshire East and to share with you the Integrated Autism Pathways that have been developed as part of this work.

During our joint area inspection by Ofsted and CQC in March 2018, Inspectors found that waiting times for autism assessment and diagnosis were far too long in some parts of Cheshire East and that there were gaps in the service. This meant that children and young people were not always getting timely access to the services they needed.

By listening to parents, carers, children and young people, along with health, social care, education and local charity experts we have made improvements to the existing services and commissioned some additional services. 

We will be holding a Drop-in sessions at Autism Inclusive on Thursday 6th February, 10am – 12noon and Wednesday 4th March, 6pm- 9pm to provide more information about this improvement journey and to answer your questions.

We have already held a drop-in session at Space 4 Autism, which was really helpful to check our updates against your actual experiences. Feedback from this session is being summarised and we are also looking into some specific issues some people have highlighted.

We know that there is still work to do and more improvements need to be made but we feel that together we have made good progress. Some of the actions we have taken include:

  • An All Age Autism Joint Strategic Needs Assessment (JSNA) has been written. This helps us to understand the numbers of people affected by autism across Cheshire East and the types of support they may need both now and in the future.  It helps with planning and has informed the new All Age Autism Strategy for Cheshire East, this will be published very soon. 
  • We have invested in our autism assessment services to reduce waiting times in line with the three-month guideline recommended by the National Institute for Health and Care Excellence (NICE). As a result, waiting times for assessment and diagnosis have fallen  despite a large rise in referrals locally.
  • In October 2018 there were 478 children and young people waiting for an autism assessment  in Eastern Cheshire, (where waits were particularly long), with the longest wait being 104 weeks (almost 2 years). By 6th December 2019 there were 29 children and young people waiting longer than 12 weeks and the longest waiting time for assessment was 17 weeks. The longest waiting time from referral to start of a specialist multi-disciplinary autism assessment was 12 weeks by 31st December 2019.  Across the South Cheshire area the average time for an assessment has been between 10-16 weeks.
  • We measure the waiting time for assessment based on the Guidance from the National Institute for Clinical Excellence, which is from referral to the start of the multidisciplinary assessment.  We know that some children and young people have then waited after the assessment to receive the formal diagnosis and we have recently increased the medical time in the services to improve this wait and overall assessment process.  We are aiming for this to be reduced to a maximum of 4-weeks after the assessment has been completed. We are currently looking into all the cases where families have waited longer than this. We are also doing more work to review the overall waiting time from first appointment to the end of autism assessment and receiving the formal diagnosis to ensure that this overall timeframe is reasonable.
  • There has been recruitment for additional clinical staff to support the multi-disciplinary assessment of autism.  Speech and language therapists specialising in autism are now in post. The Clinical Care Coordination function is being reviewed with the aim of bringing greater consistency across the Cheshire East area.
  • A multi-disciplinary team of healthcare and education experts has been commissioned at East Cheshire NHS Trust on a recurring basis to complete autism assessments for pre-school children (age0 to 4 years) in Eastern Cheshire to ensure there is a consistent offer across Cheshire East. We are currently confirming the referral pathway into this service in response to questions from families.
  • We are offering consistent early intervention support as part of both a family-centred and settings approach with specialist support being offered in all children’s centres, including peer-led groups and workshops through our Early Start Team and seconded Health Visitors.
  • We have worked with local charities to commission additional pre and post diagnosis support and training for parents/ carers of children, young people on the pathway or with a confirmed diagnosis of autism. These community-based programmes offer practical help and strategies on issues such as sleep management, sensory advice, anxiety management and positive behavioural support. The programme in Eastern Cheshire has already supported 120 families and 466 training sessions have been delivered between 9th September and 13th January 2020. We have received very good feedback from people who have attended these courses and we are looking to expand them to offer more support for children, young people and adults living with autism. A similar support programme will commence across the rest of Cheshire East and Vale Royal in February (Northwich and Winsford) and March 2020 (Middlewich and Crewe).
  • We have developed an Integrated Autism Service Specification which is supported by a series of integrated pathways, to ensure that children, young people and their families can access appropriate help and support according to their level of need. These have been based on the Mental Health Child and Family Centred ‘Thrive Multi-agency Framework’. The aim is to ensure that services are working together around the needs of children, young people and families.

Click here for the Integrated Autism Pathways, which include:

  • Getting advice – first concerns/early identification (0-4 years & school age)
  • Getting help – local offer/specialist Autism assessment
  • Getting more help – pre and post-diagnostic support
  • Getting risk support – prevention of crisis/specialist risk support

We hope that this helps to provide you with an update on some of the improvements we have made. 

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