From empowering parent carer voices to encouraging common understanding of conditions : How parent carer forums are transforming lives

3 mins read

Tuesday 13 February 2024

The work parent carer forums are doing across England varies enormously. That’s why this February we’re sharing some of their stories with you and have designated this February, Parent Participation Matters month.

Bringing the words ‘You said, we did!’ to life in Essex

Essex Family Forum introduced introduced a ‘Graffiti Wall’ and encouraged parents to pin their concerns to it when they took the wall to parent events. This turned into a virtual Graffiti Wall during lockdown, enabling families to continue to share their experiences and concerns online.

The graffiti wall was such a success it became a regular fixture when the pandemic ended. Now parents post comments on the virtual graffiti wall regularly and the forum then convey this feedback in-person to the local authority. A group of senior leaders from Essex County Council meet regularly to review the feedback and ensure that questions and concerns are addressed in a timely manner.   

The forum has seen a big increase in parental engagement as a result of this initiative because families now feel heard, echoing the Essex Family Forum’s  ‘You said, We did’ ethos and commitment.

Find out more about what parent carer forums like Essex Family Forum have done and their impact.

Unlocking a path to understanding and recognition

SNAP PCF, the parent carer forum in Central Bedfordshire, were concerned about the increasing number of parents telling them they were struggling to get recognition and support for their children who have Pathological Demand Avoidance (PDA).

PDA is a condition, most often experienced by autistic people, where children go to extremes to ignore or avoid anything they perceive as a demand. Unfortunately, many aspects of PDA, including its clinical definition and how it is identified and managed, are currently contested by health care professionals.  As a result, parents faced an uphill battle with their local authority and services to acknowledge a diagnosis of PDA and getting it included into their children’s Education, Health and Care (EHC) plans.

The forum approached the PDA society and the local authority to see what could be done and worked with professionals across the health and education sector to coproduce a position statement to provide reassurance to families and recognise the need for extra support to children and families affected by PDA. 

The position statement is now available for all families and professionals to look at on the local authorities local offer webpage. As a result, clinicians within CAMHS are able to work with parents, carers and other professionals to try and understand the individual child’s needs and tailor a package of care and personalised support.  PDA training is now mandatory for any professional working for the local authority in a SEND role – and SNAP PCF are championing the training to schools and health services.

Read more stories about how Parent Carer Forums across England have made an impact.

Find out more about parent carer forums

Find your local parent carer forum.