Parent and carers have told us that having the appropriate advice and guidance at the right time is important on their neurodevelopment journey. In order to ensure we were representing the views of our families when were are working with 3 Integrated health boards that sit across Essex and the Providers, and we asked them some specific questions.
Click HERE to find out what families said.

Following the Local Area SEND Inspection in 2019, a number of working groups were formed to deliver the required improvements across the Local Area.

Essex County Council and, what are now, the three NHS Integrated Care Systems* in Essex, along with Essex Family Forum are working together to support the improvements of the ASD and ADHD diagnostic pathways and advise and support provided to families whilst on their journey.

As part of this work, overarching Outcomes and Effectiveness Measures were co-produced using the feedback Essex Family Forum had gained from parents and carers across Essex.

Outcomes and Effectiveness Measure 1
Focus on referrals

1. Families will experience a positive referral into community paediatrics. The referral process is clear and accessible for both CYP, Families and professionals. CYP and their families are referred by the appropriate professional when the need is identified.

Outcomes and Effectiveness Measure 2
Focus on the family’s journey

2. Families will have a clear understanding of their journey through the clinical aspect of the pathway from the point of referral. Families will understand the timescales for appointments, the information gathering process and the process of assessments if required, are clearly explained.

Outcomes and Effectiveness Measure 3
Focus on advice and support

3. Families will be provided with the right support at the right time that meets their needs, through effective signposting to appropriate early intervention, family support and post diagnostic support.

Outcomes and Effectiveness Measure 4
Focus on family views

4. Parents, carers children and young people will feel listened to and will feel that their views and wishes were considered and informed decisions.

We continue to represent parent and carers voices and have sought views through our Virtual Graffiti wall, Neurodevelopment Survey, workshops and online and in person events.  Whilst Essex Family Forum, is aware of the significant investment into the system and the improvement work undertaken to date, we are acutely aware that families are yet to feel the impact. We continue to hear that children and young people across the footprint of Essex are not yet receiving timely access to services and that access to appropriate advice and support remains varied across Essex.

The Essex Local Area SEND re-visit in May 2022 highlighted progress, but waiting times for diagnostic pathways for autism spectrum disorder and attention deficit and hyperactivity disorder remain variable”.

In response to the revisit, we have reviewed the Outcomes and Effectiveness Measures through dedicated workshops parents, carers, support services and charities. Listening to the feedback. We have agreed amendments to the existing Outcomes and Effectiveness Measures to ensure the voice of the families we represent remains at the centre of the improvement journey. The agreed outcomes can be found in the document below.

Essex Family Forum remains a key partner in Essex wide work and in the dedicated working groups within each ICS. We continue to strive to ensure that improvements are made so that every family will experience the agreed outcomes that parents and carers have asked for.

If you would like information on services local to you please visit the Autism and ADHD page on the Essex Local Offer:


* NHS Integrated Care Systems in Essex:

  • Mid & South Essex ICS
  • Suffolk and North East Essex ICS
  • Hertfordshire & West Essex ICS