The BDFA started offering a Peer Befriending service in July 2022. Trained parent Peer Befrienders, all who have or had children with Batten disease, offer 1:1 support to parents over Zoom or the telephone on a regular basis and in a structured way.
It is this shared understanding of what it means to be the parent of a child with Batten disease that gives parents the confidence to use the Peer Befriending service. We have had many parents who have said how much they appreciate the opportunity to talk to someone who personally understands something of what they are going through.
The Peer Befriending service also incorporates regular online meet ups for parents and carers of children or young people living with Batten disease. These regular sessions are run by some of our volunteer Peer Befrienders and staff. You can find more information about these sessions on our events page.
Visit our Events page here.
The Peer Befrienders…
Our Peer Befriending service extremely successful with our first group of parent Peer Befrienders (5 parents) completing their training in 2022 and our second group finished training in March 2023 (3 parents) and our third in October 2024 (3 parents). Parents interested in becoming Peer Befrienders are either parents of children and young people with Batten disease or are bereaved parents. They are asked to fill in an application form and are interviewed by Mimi Petty, Family Support & Peer Befriending Officer. References are taken and DBS checks carried out.
Training compromises of a 6 week programme and training takes place on Zoom as parents live throughout the UK.
We find that parents feel well equipped to start offering Peer Befriending after having completed training, which includes such aspects as active listening, telling their parent journey, ways of coping and boundaries. The course is very interactive and each trainee has the opportunity to tell their own Parent Journey whilst the rest of the group listens. This can be very emotive but also very empowering as sometimes parents feel listened to for the first time.
Safeguarding and further top-up training is also provided throughout the year and has included such areas as listening and coping skills for families through the Maypole counselling service and training on how to support Siblings from the charity SIBS.
The BDFA know the importance of supporting our Befrienders so Group Supervision is provided on a monthly basis on Zoom. This proves to be an invaluable form of support as the group listen to and support one another and share ideas. Mimi also provides 1:1 support to the Befrienders as required.
Every year our team of volunteer BDFA Peer Befrienders meet together for a weekend away.
This time together provides invaluable face-to-face training and also the chance to meet in person to encourage and support one another.
Meet the Family Support & Peer Befriending Officer…
Mimi Petty has been in role as the BDFA Family Support & Peer Befriending Officer since March 2022.
Mimi is a bereaved parent whose son Bertie died of CLN1 Batten disease in 2019 aged 4. She and her husband Andrew set up Bertie’s Helpers and live in Kent with their sons Stuie & Henry.
‘I am so honoured to be able to help serve the Batten community by being part of providing the Peer Befriending service. The training is always an incredible time to get to know parents and to be able to help equip them with the skills they need to become excellent Peer Befrienders. This service is of enormous benefit to the Batten community. It provides regular emotional support to parents from other Batten parents who not only understand, but who are also able to listen on a regular basis and in a structured way, themselves being supported by myself and by Group Supervision.’
If you are interested in using the Peer Befriending service or in training to become a Peer Befriender then please email Mimi Petty, Family Support & Peer Befriending Officer, mimipetty@bdfa-uk.org.uk