00:00Hello, everybody.
00:09Thank you all for zooming in to join Catherine and I today at the start of Children's Hospice Week.
00:16I was going to start, before I asked all of you to share your experiences,
00:22by describing what I felt like when I first went to visit a children's hospice,
00:28Helen and Douglas House, I think it was about 13 years ago.
00:34And I have to admit, I was filled with a certain amount of trepidation
00:39because I wasn't sure what I was going to find.
00:42When I arrived, I was totally amazed by what I found, the feeling of warmth and laughter and happiness.
00:52And since then, I've obviously visited Children's Hospice Southwest
00:56and whatever hospice, Children's Hospice, I've been to, I've felt that same warmth and laughter.
01:04And obviously, the nurses and the carers who look after these children are the most wonderful people.
01:11And they just sort of inspire happiness.
01:15It's an uplifting experience, isn't it, going in, which was the opposite to what I thought it was going to
01:20be.
01:20Obviously, I'm a massive fan of the work that the staff do.
01:25And the fact that, you know, families are able to live as close to their home environment as they possibly
01:31can
01:31in what is really difficult circumstances is extraordinary.
01:35And it's credit to the staff, really, that can provide the environment to help them go through,
01:40whether it's long-term care or short-term care.
01:43It's really, yeah, it's really awe-inspiring.
01:44How is everything at the moment going for you within, you know, with the pandemic and everything like that?
01:50Has it put lots of extra challenges on the service that you provide for your families?
01:55Absolutely.
01:55It means that we've had to be very agile on our feet in terms of responding to the changing needs
02:02of families.
02:02Obviously, most of our families are shielding very vulnerable people, young people,
02:09and not wanting many of them to venture from their homes.
02:12So we've had to turn our family-based respite model into something else.
02:17We're still open for emergency and end-of-life care.
02:21But we're working in the community, which is something we haven't done before.
02:25It's been very welcomed and it's been enormously successful.
02:30And it won't surprise you to know that we're working virtually as well.
02:35So it's been a very interesting experience.
02:40And Claire, perhaps Sue at Helen House would like to tell us a bit about how you're getting on there.
02:47Our doctors have never done as many outreach visits and nor of our team.
02:52So a really different way of working and holding situations in the community,
02:59which are much more complex than we would have dared to before.
03:03Some of our families just don't want to come out of their homes.
03:07So actually, it's about putting them first and how we can look after them.
03:11So all our staff are now wearing fun scrubs and they look quite very, very child-friendly and PPE.
03:19So trying to think of different ways of adapting our service that we can be safe, but yet responsive.
03:25Change is always difficult and there's always a range of adaptation to change.
03:30But I think the very fact that they're able to provide what they can to families in these straightened circumstances
03:37lifts morale and it gives a real sense of purpose.
03:42How easy is it for other families to connect to each other at the moment and to share that same
03:47network that they perhaps have had before?
03:49It's really hard, actually.
03:51So normally if we had a new family, they'd come in and there'd be another family in.
03:56And at the moment, they're having to kind of do that almost from a distance.
04:01A little boy that died on Saturday, we were able to have his grandparents not in the building, but in
04:06the garden and the weather's been good.
04:09So it's looking in an ingenious ways of how we can help that to happen.
04:15Eddie, do you think you could tell us all about your experience with children's auspices?
04:21It was to Helen House in Oxford that my late wife and I and our two children, as they were
04:26then, went to receive the enormously valuable and loving care that we experienced there from 1984 until 1995.
04:38And our eldest daughter died there.
04:41And it was it was it was that place that you've both described.
04:45It was a place of of wonderment, really, of of of of people doing their utmost to care for your
04:53child as you wanted them cared for.
04:56And the utmost attention to detail and loving care just just scooped us up.
05:02And Kate, our eldest child, died in 1991 and our son, Tom, died at home in 1995.
05:12And in 1991, we set up Children's Hospice Southwest.
05:19And so what we can say this afternoon, I think, is that is that Helen House really inspired the whole
05:27of the children's hospice movement.
05:28There are now over 50 organisations in the country providing the very special care which has been described.
05:35So absolutely brilliant.
05:37How are you all doing as a family, Carla, obviously?
05:40And it hasn't been a huge, huge length of time since you lost your son.
05:47Up and down days.
05:51If I think we found it extremely hard through this lockdown, not being able to have our family and our
05:57friends, because it's not the same doing it via call, Zoom calling.
06:03How was the support that you received from each of the time?
06:06They are just such amazing people.
06:09They really are.
06:10The care was amazing, not just towards Fraser, making sure he was comfortable, but our well-being was met.
06:17We had a cooked meal provided every day.
06:21Stuart and Stewie were able to stay in the flat upstairs while I stayed in Fraser's room with him.
06:28The memories we made.
06:29We had Father Christmas visit.
06:32We also renewed our wedding vows because Fraser had always looked at our wedding pictures and asked where he was
06:39in those.
06:41And it was our 10th year in July.
06:44So we decided, actually, let's do it and renew our vows.
06:48And if you'd seen the change in the care floor that those staff had done in 48 hours, it didn't
06:54look like a care floor.
06:55It was amazing.
06:57It really was.
06:58Children's hospice go that extra mile, actually, and support families like yourselves, I think is, you know, is extraordinary.
07:04And they, like you say, they consider the whole family as well, which is really important.
07:09But I hear you've been doing lots of fundraising, which has been amazing.
07:14Well, I did do 5K every day in May.
07:17Who inspired you to start running 5K every day?
07:21Captain Tom did.
07:22Oh, Captain Tom.
07:24Captain Tom has done a lot for this country, hasn't he?
07:27He's inspired so many people.
07:29You must be very fit, Stewie.
07:31We'd like to thank everybody who works for hospices across the UK for the incredible job you do and allowing
07:41families to treasure their moments together.
07:44I think that's so important.
07:45And it's entirely due to all of you that it's able to happen.
07:51And thank you so much for coming on.
07:53Stay safe.
07:54Stay safe.
07:56Bye.
07:56Bye.
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