Looking after a child with a serious, life-shortening illness is an all-encompassing job.
For many parents, even having a much-needed break for a few hours is incredibly difficult.
So people like Kate Abbott, a community nurse at Bluebell Wood Children’s Hospice in Sheffield, are a lifeline to the families of children with complex health needs.
Kate can give parents an hour or two to get on with everyday tasks which usually they would struggle to do.
The family of Zuzanna Wrona, who relies on a tracheostomy tube to help with breathing, say her help is “invaluable”.
Lukasz Wrona, Zuzanna’s dad, said: “When Kate comes to care for Zuzanna, that’s the only time we can leave the house together, so for us it’s so important.
“It allows us to do normal things, like our food shopping and we know that Zuzanna is being looked after by someone who knows her.”
Zuzanna, from Armthorpe, Doncaster, was given 18 months to live when she was born and was initially diagnosed with a degenerative illness.
Now aged two, she has defied predictions and is getting stronger as she grows. However she still has a range of health issues, so needs full nursing care if her parents need to take a short break.
Mrs Abbott can provide that and ensure that families like Zuzanna’s feel completely confident to leave their little ones.
She visits usually once a fortnight for around four hours and can communicate with the little girl using Makaton, a form of sign language.
Mrs Abbott said: “Initially Zuzanna’s diagnosis was that she had a degenerative illness and would continue to become more and more poorly, but she has done the opposite and has actually improved as she has grown.
“We’re starting to see that she can breathe without her tracheostomy tube for small amounts of time.”
As a community nurse, her role is to bring some of the services offered in the hospice itself to people’s homes.
Each week she and colleagues will discuss which families might benefit from a visit, while she will also go out and conduct initial assessments of children after they have been referred to the hospice.
“If I can see that a family is struggling, I will arrange to give them a short break,” Mrs Abbott added.
“I might go to their home for four or five hours to look after the child.”
Her role has to be flexible so she can respond to the ever-changing needs of youngsters whose condition can change quickly.
“I see Zuzanna once a fortnight routinely, but for other children whose health is a bit more unpredictable, I might go at short notice.
“I have to prioritise a child’s needs and any family can call us at any time and ask for support. If we can help, we will.”
In addition to going out in the community, Kate works at the hospice with youngsters who come in during the daytime.
She provides nursing care to those who need the extra support as they take part in other activities or so their family can take some time out.
Kate has cared for Evie-Mae O’Grady-Askwith, from Sheffield, for three years and helps support her parents.
Evie-Mae, four, has a chromosomal disorder and several other health issues which mean she needs specialist care.
Her mum Keeley said she was very grateful for the help from Mrs Abbott and the team at Bluebell Wood.
“Coming here allows us to spend time as a family and know that our daughter is being looked after.
“We can choose to stay, or leave Evie with the carers and know that she is being looked after. It also gives us the chance to enjoy our own hobbies like cooking or gardening.”
As well as giving parents a break, Mrs Abbott’s expertise can also be vital in ensuring poorly children don’t have to go to hospital unnecessarily.
“One part of the job is trying to keep children out of hospital. If a family phones and says their child is ill, we can go out and try and set up things like antibiotics straight away.
“We intend to provide a quick response to stop infections before they take hold.
“If the child is in a situation where they aren’t getting better, they might come to the hospice and be cared for on the end of life pathway.”
Children who come to the hospice do have conditions which sadly mean their lives will be shortened – but that still means that Mrs Abbott may care for them for years.
“Going into people’s homes gives you a better understanding of what their life is like on a daily basis,” she said.
“I’ve been working at the hospice for eight years now and some of the families I have known for that long.
“They may have a life-limiting condition and may only live until the age of 16 or 17, but you can spend years looking after them. You do forge very close bonds with families when you are meeting them regularly.”
The community team at Bluebell Wood, which Kate is part of, is just one of the services offered.
Our new Yorkshire Children’s Hospices Appeal aims to raise a total of £30,000 for Bluebell Wood, Martin House in Boston Spa and Forget Me Not in Huddersfield.
• Donate to the appeal online. Or, send a cheque, made payable to Yorkshire Children’s Hospices’ Appeal, to: Kayla Lindsey, Yorkshire Post, No 1 Leeds, 26 Whitehall Road, Leeds, West Yorkshire, LS12 1BE. You can also download our donations pack, containing all you need to know to help the appeal.
• Are you supporting the appeal? Tell us about it via social media using #ychappeal or email firstname.lastname@example.org.