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That was. . . Children’s Hospice Week 2020 

News and comment
Harriet Alexander Devine Nurse

Phew, what a week. We’d like to say an enormous thank you to everyone of the amazing families, supporters and children’s hospice services that have taken part in Children’s Hospice Week 2020 over the last seven days.

This year has been so unusual for everyone and has brought unprecedented challenges for many. Children’s Hospices have been at the very sharpest end of these challenges: they have had to adapt their care and services to continue to support children and families who are some of the most vulnerable and seriously ill in the country, while meanwhile seeing income from fundraising and charity shops evaporate. Many face real threats to their ability to survive over the next six to 12 months.

That’s why it’s so important to not only celebrate the children’s palliative care sector for a week, but to support it in the long term as well.

We thought we’d finish the week with the words of Harriet, an Alexander Nurse at Alexander Devine Children’s Hospice Service – though they could be from any of the amazing staff and carers at any of the 54 children’s hospices across the UK. To you all, we say thank you, and over to you Harriet:

“The families are so hugely grateful that we continue to be there for them and I see first-hand how much of a positive impact our children’s hospice service makes on their lives. Especially in these anxious and worrying times, we are a familiar face that they trust and that can give them reassurance and the support they need.

“As a team, we are adapting the way we work in order to offer continuity to families whilst also enabling them to access our services in a way that suits them. Although we miss being able to provide Day Care, we can still provide so many elements of our services in our community visits. However, for some of our families who have taken the tough decision to totally shield themselves, we are finding different ways to stay connected with them and make sure they don’t feel alone. Amongst other things, I call them regularly as well as dropping off vital resources and equipment on their doorstep.

“Every visit I do is so different and as well as clinical support, it is also crucially about easing the pressure on families and giving them the break they desperately need. There is no such thing as a typical visit for me. This morning I was able to help a family by getting their child out of bed, administering medication, bathing, dressing and providing a tube feed. However, on other visits it might entail more engaging activities with the children such as sensory games, reading, listening to music or perhaps some arts and craft.

“We are also continuing to get referrals for our services and I have recently visited a number of new children and their families to discuss how we can support them, now and in the future. For most of us it is difficult to imagine the challenges these families face each day, but I am grateful that myself and my colleagues are able to help make their lives a little easier.

“But of course we could not do what we do without the donations people make to our charity, so I want to take this opportunity say thank you to everyone who support us. Whether a small or large donation, it is invaluable to our families.”

You can find out more about the work of Alexander Devine on their website and if you want to keep in touch with our work sign up to our e-Bulletin or follow us on Twitter or Facebook.

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