To celebrate the launch of Families Voice – the new and improved family-led feedback forum that helps direct change at Demelza – we spoke to Kirsty, mum to Ava-Lily, about her recent involvement in the group.

“We’ve been using Demelza for four years now, mostly using the facilities at the Sittingbourne hospice. Things changed quite dramatically as they responded to the pandemic and the unprecedented challenges that came with it; it’s been a difficult time, and not every change has worked for every family. I joined Families Voice in May 2022, as I felt I needed somewhere to voice my feedback in a constructive way – instead of just having a moan!

It’s been great attending the sessions as I feel our opinions as a group are being heard and acted on; it gives me, as a parent, an opportunity to talk directly to decision-makers and help them understand what it’s like from my perspective. We recently had a chance to talk to Demelza’s CEO, Vin, for example; we discussed Demelza’s five-year strategy and the aspects we think are most important. We also chatted about what it’s like for us day-to-day as parents and carers, what our real struggles are, and what we think could be done better by Demelza, and by the wider healthcare sector. I think it’s so valuable that we had that chance – to talk to the person at the very top and feel like we’ve been heard.

That being said, these sessions aren’t like board meetings – we’re not just sitting and going through items on an agenda. We have informal meetups too, like coffee mornings, where we can just chat with other parents and carers. It can be really isolating being responsible for a child with complex needs, so being able to spend time with others who just ‘get it’ helps so much. It’s always good to swap tips on the best activities in the area, how to get funding for certain things, and just generally offload some stress with other people in the same boat.

It’s really flexible too; if you can’t make a session because you have a hospital appointment (or because your kids are bouncing off the walls), you can just skip it and attend the next one. It’s all about what works for you, which makes it much less daunting to get involved.

If anything needs to change right now, it’s that the voices aren’t diverse enough. At the moment we see the same people at every session, and although we’re very passionate we can’t necessarily speak for everyone – and we don’t want to. I want to encourage other families from different backgrounds to get involved because, like me, they might not understand how beneficial it can be to get in a room and talk about your concerns instead of sending another email, or making another Facebook comment!"