October 2023 update


East Sussex Parent Carer Forum (ESPCF) is the parent carer voice organisation for families with children and young people with special educational needs and disabilities in East Sussex.

Our role is to bring the voices of parent carers to the table when decisions are being made about local services our families use. We are parent carer run, and work alongside organisations such as the NHS and East Sussex County Council to try and influence positive change and put families at the heart of decision-making.

Your feedback

We started the new term asking ESPCF members for their experiences on four topics, and we’re so grateful to everyone who responded.

Pathological Demand Avoidance (PDA) position statement

The PDA position statement, first published in September 2020, is currently being reviewed (as part of a regular cycle), and we asked parent carers for their views on what should be changed or updated. We received a number of responses from parent carers with lived experience of PDA children and young people, offering valuable insight and pertinent suggestions. The working group is now making the final changes to the statement, incorporating these submissions, and we’ll share it with you as soon as possible.

Home to school transport arrangements

ESPCF was aware from email feedback and comments in our closed Facebook group that there have been some issues in relation to home to school transport. We requested a meeting with the transport hub and our parent carer reps presented this feedback to a senior manager. Themes included contingency arrangements, communication with and information for families, familiarisation visits, training for drivers and passenger assistants, and the importance of supporting and understanding SEND (special educational needs & disabilities). A full summary will be published on our website shortly.

Exclusions review by the East Sussex County Council Scrutiny Committee

Councillors at East Sussex County Council have been conducting a review into school exclusions and were keen to learn about the experiences of parent carers and families. This issue is particularly relevant for families with children or young people with special educational needs as data shows these pupils are more likely to be suspended than their peers. ESPCF members shared their experiences with us, which included case studies of challenging and traumatic situations. We presented this to the local authority’s policy adviser who is supporting the committee, and we await news on the progress of the committee’s report. We very much hope the committee will take on board and reflect parent carer experiences in its recommendations.

Single Point of Advice (SPOA)

SPOA is a referral process provided by East Sussex County Council and Sussex Partnership NHS Foundation Trust. It is for families and professionals who are concerned about the mental health or emotional wellbeing of a child or young person in East Sussex. The SPOA service was discussed at a recent meeting with the local authority and ESPCF was asked to provide further information about families’ experiences of accessing and using the service. We are in the process of collating this feedback and will be sharing it with the SPOA operations manager to try and bring about some positive change. We’ll keep you posted.

EBSA for me

Last month we published a powerful account by an ESPCF member of her family’s experience of going through emotionally based school avoidance (EBSA). If you haven’t read it yet, and feel you can, please do. This parent kept notes during the some of the worst, most difficult times, and reading this family’s story brings into sharp focus the reality of what many families are going through.

It is not an easy read, but our hope – and this family’s hope – is that by sharing their story it might help others feel less alone. We are so grateful to them for allowing us to publish their story.

Click here to read EBSA for me

Neurodevelopmental pathway events

Our ESPCF engagement workers have been busy getting out and about, hearing from parent carers about their experiences of support, information, and advice if their child is on the neurodevelopmental pathway.

Karen (pictured here with a parent carer at Willingdon Trees Community Centre) and Serene have been to venues in Eastbourne, Bexhill, Newhaven, Heathfield and Hastings in recent weeks, with more visits coming up.

What is the neurodevelopmental pathway?

The pathway refers to the different steps of the process from when something is first flagged through to post-diagnosis support for neurodevelopmental conditions. It also includes those children and young people who are assessed but do not get a diagnosis.

Neurodevelopmental conditions are:

  • ADHD
  • Autism
  • Foetal Alcohol Spectrum Disorder (FASD)
  • Learning disabilities / developmental delay
  • Sensory processing disorders
  • Social communication concerns
  • Tics/Tourette syndrome

The ND pathway is something that ESPCF has been involved in for over a year. You might have seen our flyers on social media about visits to food banks, family hubs, playgroups etc. These events are so we can chat to parent carers of children and young people with neurodevelopmental conditions and find out what information and support they need. We feed this back to the Amaze navigation service so they know they are providing the right workshops, courses and information for families.

Get in touch if you would like us to come to a venue near you.

Ofsted and Care Quality Commission (CQC) area SEND inspection

We still expect that East Sussex’s SEND (special educational needs and disabilities) services will soon be inspected by Ofsted and the CQC as part of a local area SEND inspection. You can read our news story from earlier this year to find out what an inspection involves, and how parent carers should be involved.

The main message we’d like to share is the importance of the parent carer survey. This will be available on the day the inspection is announced, and there is only has a small window of time for parent carers to respond – six days (although we understand that the survey closes at 9am on day six, so it’s really only five days). This survey, along with the survey for young people, is the main opportunity for families to have their say as part of the inspection.

The more families who have their say, the better the picture that the inspectors will have on how things are working, or not working, for families.

We will email the survey link to all ESPCF members as soon as we hear that the inspection has been announced. We will also share it on social media.

Please share details about ESPCF with other families in East Sussex with children or young people (aged 0 to 25) with SEND, to make sure we can reach as many people as possible.

Click here to join ESPCF