Kai and his mums, Leanne and Sara, have been accessing Demelza’s services since 2020, after Kai was diagnosed with a serious brain injury just a few days before Christmas – it causes severe epilepsy and cerebral palsy.
“I’m very new to Families Voice, but it’s a great opportunity; a group run by families, specifically to provide feedback and help inform the choices Demelza is making going forward.
I wanted to throw myself back into something; it’s been quite isolating caring for Kai the past few years, especially during the pandemic, and I’ve been looking for opportunities to get involved in more groups and socialise more with other adults. Families Voice is great for that – not only am I chatting with other parents, it’s other parents who all have similar backgrounds. There’s no stigma around Kai’s injury or disabilities generally, so it’s really easy to speak openly about our experiences as a family. I also think that, even if I’m a little bit nervous to bring up an issue I’ve been facing at Demelza, once I’ve brought it up in Families Voice I’ll find I’m not alone.
That shared understanding also makes it easier when things don’t go right! With a child like Kai you’re constantly juggling medical appointments, and his health can change suddenly; it’s good to know that if I can’t attend a Families Voice meeting, there’s no backlash. I can just drop them a line letting them know I won’t be there, and pick things up again at the next meeting. Demelza has made it really clear that flexibility is key going forward, and I think that will be great for getting more families involved.
I’m also really excited about my role specifically – I’m dealing with family events at Demelza, helping to shape what they offer in future and the way they communicate it to families like ours. It’s great that I’ve been able to shape my own involvement in the group; I expressed what I was interested in, and we worked towards making that my focus straight away. I have a ton of ideas, like incorporating more adult-only events for parents and carers – stuff that gets you outside of your four walls and interacting with other people who understand what it’s like. I’ll obviously be speaking to other families and incorporating their feedback as well.
That’s my biggest hope for the group. I’d really love to see more families attending, so we’re helping to make changes that everyone wants. I actually think this is a really exciting time for Demelza, and we’re about to see some changes that have been a long time coming – it just needs as many parents and carers as possible to get on board!"