Good practice – South Bucks PDA Support Group

It is difficult to overstate how important support groups are. The PDA Society started out as a parenting support group - the PDA Contact Group was set up in 1997 when there was very little information available on PDA - and the PDA Society became a registered charity in 2016. Many parents and wider family members have found PDA support groups to be a true lifeline, regularly telling us how much they have helped increase their understanding of PDA, how useful it has been to share information and resources, and how much they have benefited from feeling understood and accepted. There are PDA Support Groups which meet up in different parts of the country, with many more online and also the PDA Society Forum.

The South Bucks PDA Support Group was set up by Hilary Harvey in 2015 and now has 150 members. Hilary kindly shared information with us on how to set up and run a support group. Here’s what some of the group members told us about how this support group helps them …

The support group is really empowering, I’ve made some great new friends and it’s also made me more confident standing up for my child and what they need. It’s also helped me accept our situation as seeing others who have trodden the path before me has been inspiring. Also been great to share laughs about everything we face, to know others get it and I’m not alone.

We can bring family members (grandparents etc) along so that they also can find out it's "not only in your family" and potentially stop "parent blame" and "he/she is just a naughty child" culture!!

It’s helped me not to feel like an outcast.

It’s amazingly uplifting to meet people who understand and who can offer positive feedback. Our coordinator regularly shares valuable information both locally and nationally and goes the extra mile to help any family in need. It’s so uplifting to receive a personal note making sure we’re ok when I know there are so many members. I’d like to say thank you Hilary for all you to do to support us, you’re our angel!
Given the near-total lack of understanding, let alone support from "official" sources such as the Local Authority SEN team, Children with Disabilities team within Social Care, Community Paediatricians, GPs, CAMHS, Social Care etc. as well as the non-existence of publications or other advice regarding "Next Steps" (e.g. upon diagnosis?!!) ... Parent Support Groups are an essential if not the only support network that affected families have and therefore a life-line.
It’s helped increase my understanding of the PDA profile through exchanges with other members – spending time with people who understand and don’t judge, and perhaps have other ideas and strategies to offer support. Also knowing about resources that are available or sharing information about options locally in terms of school and professionals. And the activities organised for members’ families helps enormously because our young people are very sociable but often lack friendships.

We hope that this inspires others to set up local support groups. If you’d like any help with this please get in touch with us.