Round Up May 2024

welcome to pacc’s May round-up

This round up brings together updates about key areas of work as well as other news.

As we navigate through the late spring and early summer months, we acknowledge that this time of the year brings unique challenges for many of you. The end of the academic year is approaching, and with it comes a host of demands and changes that can be overwhelming for both parents and children alike. This can make your role as a parent carer be even more crucial and demanding and balancing these responsibilities alongside your usual commitments can be incredibly tough.

For parent carers, this time of year can also be difficult emotionally. It can feel that you’re on the outside looking in, seeing the educational opportunities and experiences available to other children whilst knowing that they are currently out of reach for your own child.

Parent carers are concerned about the summer holidays and whether their child will be able to access suitable short break activities during this period, providing parent carers with the respite and access to work they desperately need. This is particularly concerning for parent carers who have a child with severe complex needs.

PaCC continues to raise the many issues and difficulties families face with officers working in Brighton & Hove City Council and health, as well as highlighting the areas that are going well. Any feedback about your experiences would be most welcome and will help to inform the discussions we have with the council, health departments and others we work with. Please email any feedback to: [email protected].

Here are some updates from us:

New Parent Groups & Befriending Service – a Partnership Between PaCC & Amaze

Amaze’s Face 2 Face service is changing and being rebranded as ‘parent groups and befriending’. This new service is a partnership between PaCC, East Sussex Parent Carer Forum (ESPCF) and Amaze.

This new service will not only strengthen the emotional support available to parent carers (Amaze), but also the way PaCC engages with parent carers around the key issues that impact on their families.

You can find out more details about this new service and an update about PaCC’s coffee mornings here.

Introducing Chloe Willow

PaCC have recently welcomed a couple of new parent carer representatives to our steering group, both representing Amaze’s Parent Groups & Befriending service. We are very pleased to have Chloe and Anne Webster join us on the PaCC steering group.

Chloe has written an introduction to you all, which you can read here.

Short Breaks

There continues to be a lot of meetings and activity around short breaks at the moment (next meeting on this subject Monday 10th June, 11.30am – 1.30pm at the Friends Meeting House, Ship Street Brighton BN1 1AF). In the meantime, Fiona England, PaCC lead for social care and learning disabilities, has written this Short Breaks update for you.

Neurodevelopmental Pathway

A national project called Autism in Schools is now up and running in Brighton & Hove, focusing on two primary schools and one secondary school in the city. You can find out more about the project here.

PaCC work closely with East Sussex Parent Carer Forum (ESPCF) and West Sussex Parent Carer Forum (WSPCF), particularly around development of a PAN Sussex neurodevelopmental pathway. All three parent carer forums are concerned that plans to reform the neurodevelopmental pathway are not progressing at the pace required and families continue to be affected by long waiting times to access assessment, diagnosis and support. We have recently sent a position statement to senior leads in the Integrated Care Board (NHS Sussex). This position statement sets out our shared concerns.

You can read the position statement sent to the ICB here.

A summary version is available to read here.

PaCC will keep you updated and share any response we receive from the Integrated Care Board.

Transition to Adulthood PaCConnect Report

PaCC have recently released a report following the PaCConnect event we held around transition to adulthood. This report, which is a working document we will update with information and progress, has been shared with shared with professionals and leads from education, health, and social care.

You can read a copy of the report here.

SEND and AP Change Programme

Brighton & Hove County Council has released their first newsletter containing updates around the SEND and AP Change Programme and the progress made so far in Brighton & Hove. Moving forwards, BHCC will be releasing shorter, monthly updates which we will share with you.

PaCC recently wrote about the SEND and AP Change Programme and how PaCC are involved, which you can read here.

If you have any questions or feedback about the Change Proframme, please email PaCC at [email protected].

Celebrating our Children and Young People

PaCC is really keen to hear about your children and young people and their achievements and successes. We would really like to share these positive moments on our social media and website so they can be celebrated publicly and highlight how amazing our kids are. Please send photos and/or positives to [email protected]

PaCC Awards

Back in March, PaCC hosted our annual PaCC awards. This year was extra special, because we had our highest number of nominees and winners ever. Thank you to everyone who nominated someone for an award and to those who attended on the day. Congratulations to all our winners and a special mention and thanks to Lizzie Batten for the wonderful lunch she made for us all. You can read more about the PaCC awards and winners, here.

Become a member of PaCC

If you aren’t already a member of PaCC and would like to become one, here is how you can. 

Thank you for reading our PaCC update, please keep an eye on our Facebook page, and your email inbox too, for more updates about the work we’re doing.

Take care,


-Chair of PaCC


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