Members of the ESPCF team have been hitting the road and attending workshops, school events, and conferences. We always set out with a view to raising awareness of what parent carers have been telling us: the key issues and challenges, the examples of good practice, as well as offering peer support and listening to experiences.
Parent carer get-togethers
We were delighted this year to team up with the support group ImPACT to host a series of monthly SEND information coffee mornings in Bexhill (SEND is special educational needs and/or disabilities). It’s an opportunity for parent carers in East Sussex to come together and chat, share stories and tips, as well as bringing any paperwork for signposting to legal information.
Some of the topics that came up included:
- The process for autism and/or ADHD referrals.
- The consequences of a lack of reasonable adjustments: things escalating from small to significant; an example shared was a child not showing a member of school staff the colour of their socks, leading to a whole day in isolation at school.
- Worries about the lack of support at post-16 level if a young person doesn’t have an EHCP.
- Access to speech and language therapy.
- Crucial information and evidence missing in EHCPs.
Our final session of this school year was particularly heartening, with a parent popping in to share the wonderful news that she had finally got the right school and support for her son, saying, “You gave me the confidence I needed”. A great example of the value of supporting each other in our community.
We’re keen to continue these sessions and hope to confirm the next round of dates soon.
Neurodiversity information sessions in Bexhill, Lewes, and Eastbourne
I arrived at this meeting in an absolute emotional state as a parent with a child that has just been diagnosed with Autism PDA. Everyone was so supportive and understanding and gave me so much help and support and I’m so grateful. If only we could have regular support sessions or catch ups it would be amazing .
This was honestly the best session I’ve attended since (if not before too) our son was diagnosed with ASC in 2020.You provided concise, incredibly helpful information, delivered it exceptionally well and we were very aware of the significant expertise and experience of those delivering it. We also felt really loved if I’m honest. A massive, massive thank you.
These quotes from parents who attended the sessions highlight one of the main reasons we try to offer information sessions and get-togethers for parent carers. Being a SEND parent carer, while wonderful in so many ways, can also feel very lonely and overwhelming. The groups we ran in Bexhill, Lewes, and Eastbourne, which all had a neurodevelopmental focus (e.g. autism and ADHD, plus topics like sensory processing) were a chance to share experiences, offer support, learn about different conditions, and hopefully feel less alone.
We were grateful to colleagues at the charity Amaze, specifically from the ND Family Support Service and from SENDIASS (special educational needs and disabilities information, advice, and support service) for joining us at the sessions and offering their expertise and support.
Workshop on neurodiversity and sleep
In June, we were pleased to welcome back Nickie Sutton from the organisation Peak Sleep. Nickie is a former nurse and sleep specialist, and she led an online workshop for parent carers all about neurodiversity and sleep. It was a really informative session and a big thank you to Nickie for sharing her knowledge and advice with us.
Nickie Sutton
Schools
Eastbourne Academy
Holly, ESPCF chair, was invited to support a session on the transition to secondary school for parent carers of children with EHCPs who are joining Eastbourne Academy in September. The discussions included:
- The importance of communication about special facilities in mainstream schools. One parent explained that they chose the school because of the facility, but they weren’t aware that their child couldn’t access it without it being named in their EHCP.
- The importance of access to safe spaces, and that ‘rage rooms’ can be just as important as calming spaces.
- Worries about bullying.
- Access to adaptations such as laptops.
We heard from staff who spoke really passionately about SEND in the school, and the work they have been doing over the last couple of years to try and improve support.
We hope to keep in touch with some of the families we met at this session and find out how things go in September and beyond.
St Thomas a Becket
Our engagement workers Ali and Corinne went along to the summer fair held by St Thomas a Becket Catholic Primary School in Eastbourne. The sun shone and there were lots of guesses for our ‘how many sweets in the jar’ game. And of course, some lovely chats with parent carers.
Ali and Corinne
Wivelsfield
Engagement workers Ali and Emmeline, along with the school SENCO at Wivelsfield Primary School, hosted a coffee morning in June for parent carers. The topic was emotionally based school avoidance (EBSA), but they also talked more generally about supporting children when they are struggling to communicate or express their ‘big feelings’. The discussions were around causes, signs, and understanding behaviour. Parents shared their experiences, including the challenges around supporting their children to get into school, part-time timetables, and the personal cost they have faced, including on their own mental health and family life.
St Leonards Festival
Ali and Corinne spent a lovely but very busy day in July at St Leonards Festival chatting to families, services, and other community groups. Plus a spot of drumming! Thank you to everyone we chatted with, and we hope you enjoyed the badge-making or having a chill in our gazebo.
Corinne and Ali banging the parent carer drum!
Conferences
Carers’ Voices Conference
This conference brings together the movers and shakers of the carers world: local carers and service providers, decision-makers – both local and national – health and social care professionals, and guest speakers. It is run by the local organisation Care for the Carers and the theme this year was how health (including mental health services) and social care can work better for carers.
It was a busy day; we shared a stall with Amaze and we also jointly hosted a workshop for parent carers. Amaze staff talked about the Neurodevelopmental Family Support Service, and our engagement workers explained the aims and impact of the Autism in Schools and PINS projects, including the positive feedback received from parent carers at the school groups we run.
A slide from our presentation showing quotes from parent carers
Mental Health and Emotional Wellbeing Conference
We also attended the Mental Health and Emotional Wellbeing Conference in Eastbourne, an event run by East Sussex County Council for school staff such as SENCOs, inclusion and mental health leads, pastoral staff, and safeguarding leads. Mental health remains a priority issue for ESPCF, and we’re always keen to share parent carer experiences and talk about what more can be done to support our SEND children and young people.
Corinne and Ali
South East parent carer forums conference
ESPCF chair, Holly, went along to the gathering of parent carer forums from the south east region. It was a chance to discuss what inclusion really means, as well as what early intervention – or ‘timely support’ – should look like.
Delegates also looked at what is most needed out of any national changes to the SEND system, and most importantly how to ensure that any law around supporting children and young people with SEND is enforceable.
It was also a great opportunity to connect with other forums and share ideas and support for each other.
Sticky notes with ideas and feedback
Last but not least
We can’t forget that in May this year, ESPCF chair Holly was invited to Buckingham Palace for a garden party for people who work in areas around education and skills.
Holly with the all-important tea and cake
Holly says:
I don’t know who nominated me, but I almost didn’t accept the invitation because it didn’t feel deserved – ESPCF is not about me, it’s about the incredible parent carer community I’m fortunate to work alongside, and our dedicated steering group and small staff team who all work just as hard.
I’m also not usually one for fancy events, but I was persuaded to go by colleagues who reminded me that I shouldn’t turn down any opportunity to highlight the work we do and the importance of listening to and collaborating with families.
(I also rarely turn down a free cup of tea – of which there was plenty!)
It was a lovely afternoon in the sunshine, but the recognition is for all of us.