Derian House is a place where every moment matters. As Children’s Hospice Week begins Fiona Finch reports on Derian’s latest fund raising appeal and learns how one nurse copes with the demands of working in end -of-life care.
Could you sponsor a nurse for a day at Lancashire children’s hospice Derian House?
That is the question being posed by Derian’s fundraisers whose latest campaign focuses on those who deliver end of life and respite care for youngsters with terminal illnesses.
It is a question with special relevance this week .
It is Children’s Hospice Week and Derian House on Chancery Road, Chorley is one of 54 facilities nationwide caring for children and young people with life limiting and life threatening conditions.
The week’s theme is “Moments That Matter” and Derian House nurse Kathryn Norris, a specialist end-of-life nurse who works in Derian’s hospice at home team, has gained many insights into why every moment is precious for those being cared for by Derian House and for their families.
She said: “People often ask how I can look after dying children?
“Well, I am at peace with the idea that I cannot fix or cure every child, as much as I may like to, but what I can do is
offer support, comfort and reassurance, and instil a sense of calm for a family in a world that feels like it is falling apart.
“Looking after someone at end of life is a huge honour and privilege. Something that as a nurse I never take for granted. ”
She continued: “For me, the key to achieving ‘a good death’ is preparation.
“I know that sounds strange- but once you know a child will die (when the all the ifs have been ruled out but the questions have become how and when) then at this point it is useful to have conversations with the family about their wishes, preferences, dislikes and worries.
“By having these talks, you can try to establish and understanding. You can also ensure that the families are able to make holistic and informed choices.”
For Kathryn there is she says “a huge sense of responsibility” to make those last moments the best they can be.
“When it comes to the moments where you are stood by the child in his or her final hours and minutes of life I feel a huge sense of responsibility.
“I often stop in that moment and realise that those parents are going to think of this very moment for as long as they will remember. I therefore try to remember the basics. I try to create a nice atmosphere – music and lighting. I offer to read stories or just stay with the family and encourage them to cuddle and hold the child if possible, ensuring favourite blankets or teddies are nearby for reassuring and comfort.”
Kathryn said she tries to explain the process of dying and prepare the parents for what they are about to see.
She said: “Despite seeing many deaths in my nursing career – being witness to the last moments of life is still a scary and arguably unnatural thing to do - your body goes into fight or flight mode.
“However, having an understanding of the families’ wishes and having a good relationship with them is key. Knowing this information, empowers me to know that I am doing what is right for them in that moment. I can’t stop it from happening but I can make it the best it can be.”
But she is keen to turn the focus from her role in those final hours: “In the end what I think or feel shouldn’t really matter but I would argue that I/we have done our jobs well if the family’s wishes have been met and the death is as peaceful and pain free as possible. All of which can and should be achieved if advance planning and preparation is done in advance.”
For Kathryn working for Derian House is a true vocation: “I truly love my job and in the end I aim to treat people how I would like to be treated. Being non judgemental, actively listening too and being a calming influence are a priority.”
Each year the hospice expects to offer respite and end-of-life-care to more than 400 children and young people aged 0 -25, as well as their families . Last year this included 2,096 nights of respite care, 798 hours of fun in the hydrotherapy pool, 81 day trips and 432 Derian at Home visits.
Fundraising Manager Kevin Bedford a said: “It takes a special person to be a Derian nurse. It’s not just the children we care for, we also put our arms around the whole family – including siblings, parents and grandparents too.
“The breadth of skills our nurses use in an average day at Derian is awe-inspiring. They might be caring for a child at the end of his or her life, and then have to turn their attention to joining in a sing-a-long or an arts and crafts session.
“Our nurses give families the chance to just be families, not nurses or carers. We give them a chance to make the very most of the time they have together.”
He stressed that the Sponsor a Nurse for a Day campaign is not just about fund raising, but also about recognising the work done by the team of 52 care staff. It costs more than £4 million a year to run Derian House with less than 10 per cent coming from Government funding. If every single day of the year is sponsored this would amount to £54,750.
The public is being invited to pick a special date to sponsor a nurse on, perhaps in remembrance of a loved-one, or as a special birthday gift . Schools, businesses and community groups are also invited to join the fundraising challenge.
Derian’s Communications and Marketing Manager Caroline Taylor said: “You can pay to sponsor a nurse for a day, or pledge to raise that money with a fund raising event, or club together in place of work or with friends or pay monthly. If you simply give 50p we’re grateful for every single penny people donate to us.”
The Sponsor A Nurse campaign includes placing videos on the Derian House website highlighting aspects of Derian’s work.
A forthcoming video will feature staff who were filmed reading unexpected feedback from families they have helped. Caroline said: “Some of them found it very overwhleming. They don’t really realise the impact they have on their families. It was lovely to give that back to them.”
* See www.derianhouse.co.uk/sponsoranurse