ESPCF September 2022 update

This time of year can bring mixed emotions. For those children and young people happily returning to school or college, it can be an exciting time; for those unable to attend, it might be stressful and upsetting. So, starting any piece of writing with a blanket “it’s great to be back” isn’t necessarily what many families want to hear right now.

Instead, we’ll simply say that we’re thinking of you all, we’re here if you need us, and if you’d like to find out about what we’re currently working on, keep reading…

You said

These were the areas you flagged as needing positive change when parents and carers came together with East Sussex County Council and NHS representatives at our event at the end of June. Click here to find out more

The feedback from our three engagement events is intended to inform the local authority’s special educational needs and disabilities (SEND) strategy, which is currently being drafted and will be out for public consultation in the next few months.

More support for families with children & young people with neurodevelopmental conditions

We’re excited to welcome Serene and Karen who have recently joined ESPCF as engagement workers. Their roles are to ensure parents and carers are fully involved in shaping the new support service for families with children and young people on the neurodevelopmental pathway.

Over 100 people responded to our launch survey asking families about support courses/workshops/information and advice services and what has or hasn’t worked previously. We’re in the final stages of analysing the responses but the feedback has already provided some real insight, including the disturbing statistic that 60% of respondents do not know where to look for support. One comment clearly highlighted the lack of support saying,

“Post diagnosis is a very lonely and isolating place”

Serene and Karen are currently arranging focus groups and would really value hearing about your experiences. Dates to be announced very soon. We are also considering how to reach those who might not ordinarily engage with the forum but who have valuable insights to pass on, so please feel free to share the information with other parent carers in East Sussex.

Short breaks in East Sussex

We know from parent carer feedback that the availability of, and access to, short breaks in the county is a huge issue. For some families, this lack of provision can have a devastating effect.

Having met with the new joint commissioning manager at ISEND with responsibility for this area, we’re encouraged that change is hopefully now in motion:

  • Parents and carers have previewed a survey designed to capture essential information about families’ short breaks needs
  • A new statement will be published by the local authority setting out what services are available and how they can be accessed
  • We’ll be holding focus groups for parents and carers to discuss in greater depth the services they want to see – dates to be announced soon

Government’s SEND review

We’ve now submitted our response to the government’s SEND review which includes our concern and opposition to several proposals, for example mandatory mediation and the mooted ‘tailored list of placements’. Keep an eye on our news and resources page as we’ll be publishing our response shortly.

Fresh air!

It was great to see those families who came to our free event for ESPCF members at Knockhatch Adventure Park last Friday (9th September). It was an opportunity for families with SEND children and young people to access the adventure park out-of-hours, at a quieter time, and we hope you enjoyed it as much as we did.