Swindon Neurodevelopmental Pathway Designed Together Links to WSOA Priority 1.1 and Priorities 6.5/6.7 “Climbing a mountain is hard, just like achieving our dreams, but we shouldn’t let things stand in our way and in the end it is worth it” Advice from Falcon Class, Uplands School

To work together to ensure successful implementation of this pathway To share the work on re-designing the pathway for neurodevelopmental conditions assessment and diagnosis To work together to ensure successful implementation of this pathway Aim of this session

A review of Children’s Services in 2016 established: This prompted the re-design of the ASD Pathway for Children and Young People Increase in the number of children being referred to the Community Paediatric Service resulting in long waiting times of over 12 months Increase in identification of SEND relating to autism, above national benchmarks Increasing demand for services No additional funding Background Swindon population aged 0 to 18 years will increase from 54,222 to 58,273 by 2031. 150% over national benchmarks In 2018/19, 1,108 referrals were made to the Community Paediatric Service. 739 referrals were accepted during this period. As of June 2019, they are seeing patients who have been waiting since January 2018.

What we did Mapped the existing and new pathways Formed a multi-agency ASD Strategy Group and Project Group Held three workshops during June and July 2018 to obtain the views of stakeholders and parents/carers on their experiences of the current pathway Mapped the existing and new pathways Worked with parents to develop an information leaflet and the new local offer platform My Life What we did

Better communication – parents didn’t know they were on a waiting list, how long it was or that their referral had been received Desire for a single point of contact for triage Early support whilst waiting for a diagnosis What we heard Consistency of approach and experience across the different agencies including schools, health, social care Some of the key themes that came out of those workshops included: Full completion of Early Health Records before referring to a Paediatrician. Parents do not want to be solely responsible for completion of EHRs Alternative provision/support for those who do not get a diagnosis and to clarify next steps for those that do have a diagnosis Information sharing between providers/agencies – clarity of roles and responsibilities of each contributor to the child

What is a Neurodevelopmental Condition? A group of conditions with onset in the early developmental period usually manifesting before the child enters school Conditions include: Global developmental delay/LD ASD ADHD Genetic syndromes Motor delays/disabilities Foetal Alcohol Spectrum Disorder (FASD) Tic disorders What is a Neurodevelopmental Condition?

Misconception: Children can only get support if they have a diagnosis ASD is often the default assumption for children with speech and language delay or challenging behaviour Once ASD is mentioned it can be very difficult to dissuade parents that the child does not have the condition ADHD is 4-5 times more common than ASD and causes secondary social communication difficulties Children and YP with mental health needs should not be on a community paediatric waitlist unless there is clear evidence of a possible neurodevelopmental disorder in addition Misconception: Children can only get support if they have a diagnosis The main challenges challenges

Quick Quiz Question 1: Question 2: Of the numbers of under 5’s referred with query ASD, what percentage actually get a diagnosis of ASD? Answer: 50% Question 2: Of the numbers of children and young people over 5 years referred with query ASD, what percentage actually get a diagnosis of ASD? Answer: 30% Quick Quiz Fact: Since 1 April 2019, 39% of referrals received have been for ASD Fact: Since 1 April 2019, 27% referrals received are for ADHD A diagnosis of ADHD is 4-5 times more common than a diagnosis of ASD, yet the Community Paediatricians receive more referrals for ASD

The New Pathway Will aim to: Remove assumed diagnosis by the referrer Reduce waiting times for assessment and diagnosis Provide a single point of referral for all Neurodevelopmental Conditions Streamline the assessment process Reduce the number of inappropriate referrals reaching the Community Paediatricians Provide a multi-disciplinary assessment at the earliest point The New Pathway

The Referral Process What we need from referrers The new referral form Describe what you see What are the difficulties the parent sees? How is this affecting the child in other environments i.e. school? Supporting documentation Evidence that the above symptoms are significantly impacting school functioning, such that teachers feel that this is holding a child back academically and socially Evidence that the above symptoms are significantly impacting the home environment and any support the parents have accessed to address these behaviour traits. Evidence that previous services have been involved, i.e. Educational Psychologist/Behaviour Support Service, with current behaviour plan and outcomes Copies of relevant reports Early Help Record and Plan Core Standards documentation (schools) School Nurse/Health Visitor report Education Psychologist report Speech and Language Therapy report TAMHS/CAMHS report SEN Plan The Referral Process What we need from referrers

The Referral Process For GPs via ERS For all other referrals, including schools, by post to: Referral Management Centre Swindon Clinical Commissioning Group The Pierre Simonet Building Latham Road SWINDON SN25 4DL All referrals will be triaged against a list of criteria within 3 days of receipt If accepted, the referral will then be considered by a Multi-disciplinary Team of Clinicians who will agree the next steps for the child If rejected, you may be asked to provide more documentation to support the referral The Referral Process

Any questions?