These are the key themes and discussion points from the CAMHS parent carer participation group held on Monday 1st December 2025.
The group was created for parent carers to share experiences and ideas with the participation team at CAMHS, as well as to ask questions about aspects of the service and hear news and updates.
Context for the suggestions made and questions raised
The group discussed some very sensitive issues about the experiences of people attending.
The group thought about young people’s need for a peer group they can belong to where they feel recognised and that school should be a place that can provide this. Academic outcomes feel less important. This echoed the feedback from the November meeting.
We noted the considerable impact to parent carers’ life and work choices by caring for a young person with SEND (special educational needs and disabilities). Parent carers explained that when already overwhelmed, having to process large amounts of information was often not possible. Instead, someone to hold one’s hand was preferred to help navigate and simplify tasks and information.
Parents spoke about how hard it is when a person in a supportive role does not really understand, acknowledge, or sometimes even believe the struggles faced by parent carers and their families.
Suggestions from parent carers
- More skill sharing between lived experience and trained mental health workers was requested, with a feeling that increasing the tools a parent has access to would help with their feelings of burn out and aid their role as advocate for their child.
- Bite-sized information sessions (30 mins) followed by 30 mins informal conversation with a cuppa (online or in person) on the following topics:
- ARFID (Avoidant Restrictive Food Intake Disorder)
- PDA (a new approach that brings in PDA-affirming tone and approaches. PDA is Pathological Demand Avoidance.)
- Communication tools such as those used in play therapy
- Emotional co-regulation
- Supporting parent carers when a child/young person is experiencing distress and feeling hopeless, possibly suicidal, and not knowing how best to help
- How to prepare SEND young people for adulthood and independence
- Discussing behaviour as communication approaches with schools
- Peer support to help address the sense of going through this challenging experience alone as well as providing opportunity for helpful information sharing. Not feeling alone was discussed as the most important factor.
- Some guidance on what to ask a school to inform decision-making about where to send a child. Include how to challenge a school that is not meeting SEND support or not meeting EHCP requirements.
Questions raised through the discussion
- How do I make sense of the education system and make a decision about the best provision for my child?
- What support is available to help my child attend school?
- How to help parents with the considerable trauma they experience of trying to navigate a system and cope with feeling burnout themselves?
The discussion raised specific questions for CAMHS to return to with feedback
A specific problem was identified regarding ARFID. Families who need a referral to Evelina London Children’s Hospital are being refused access on the basis that they should have exhausted all local offers before applying, but families report not being able to find any local services.
What can be done to support a child/young person who talks about suicide but is not identified as being in crisis? For those who are in crisis there seems to be little immediate support due to the long waiting list. Can anything be done to change this?