Fears raised  over the future of Bristol's children's hospice Jessie May as it is forced to use reserve funds - video Dailymotion

Fears raised  over the future of Bristol's children's hospice Jessie May as it is forced to use reserve funds

Transcript

00:00I looked at retiring just over a year ago and I did for a couple of months and I didn't like it.

00:06So I then saw the post for Jessie May, Family Liaison Officer.

00:10So I said to my family, I want to do this.

00:18A Family Liaison Officer supports families with a variety of needs.

00:24It's very much dependent on the family's needs.

00:27Grants are really important for families who have a seriously ill child.

00:32For many families, they do spend a lot of time in hospital.

00:37And as we know, that can be quite expensive, the travelling backwards and forwards to hospital.

00:42The extra needs for children back home, it all mounts up.

00:48A lot of my work has been grant-based, so a lot of form filling in.

00:53But while you're filling in the grant forms, you're actually building up that relationship, that rapport with the families.

01:00And it's time for them to actually talk about how it is for them.

01:06And there's often lots of tears, lots of frustration.

01:09The other thing that I've been doing a lot with mums is advocating on their behalf.

01:18A lot of mums have said to me that perhaps the care package hasn't been as they would like it.

01:24So a lot of my other bits of my time have been calling social workers, care agencies, etc.

01:33and alleviating some of that stress.

01:36I am a former trustee of Jessie May.

01:39I was a parent trustee.

01:40And over the years, I've just heard all about the wonderful work that Lynn's been doing through Jessie May helping families.

01:47She's worked her wonders specifically in pointing parents in the right direction when they're feeling a bit lost.

01:53Knowing that Together for Short Lives was there was just so helpful.

01:59They've got a helpline and that families can talk to them directly.

02:02And not just about finances, but about practical issues.

02:07Emotional well-being support, which is vital for families with very serious, ill children.

02:13I think challenges for me personally were that I felt I never had enough time to do everything I wanted for the families.

02:21I could see that there was always more I could do, you know, more wishes, more things for them to look forward to.

02:29It's just so important for families to have something to focus on and look forward to.