“It was probably just after I finished my first degree that I realised I wanted to be a nurse. I saw an advert for people to go into nursing and applied straight away. I liked knowing I had a career path I could follow.
“My first year was in adult nursing, but I swapped to paediatrics in the second year. After I qualified, my first job was in Guildford on a children’s ward. I spent a day at a hospice but I thought it wasn’t for me. After that I worked at the University Hospital of Wales in Cardiff in paediatric A&E for ten years. Then three years ago, I came to Tŷ Hafan and got a good feeling about the place and when a job came up and I went for it.
Coming here, I found out exactly what a children’s hospice does – respite care, symptom control, crisis support for families in real need. But there’s also everything else – the memory making, the community services and outreach family support. You build up a relationship with the families, building up trust. It’s about making memories with families as well. Our referrals include children that will live for many more years, but a lot of people think a hospice is only for end-of-life care and that it must be a sad place. Obviously our jobs do involve end-of-life care, but it can also be a really fun place – one minute you’re in the hydrotherapy pool, then going out on a day trip or painting with the children.
“With innovations in medicine and technology, there are new medications and new equipment that we’ve never used before. We have to keep up to date with it all. We’re learning all the time. At any time we could get a child in with a condition we’ve never seen before and are likely to never see again.
“We build up trust with the parents and they feed back to us. It’s mutually beneficial: we learn and they get the respite and the break they need.
“Some children have quite complex care protocols. We often have to medicate, use suction equipment, ventilators and control pain. When a child is in pain, they don’t always need medication – sometimes it’s the light or the noise, or they need distraction or repositioning. We react to what they need. Once you get to know the child you know what they need and sometimes you need to try different things.
“It must be such a frightening position for parents when they bring their child home for the first time and have to adapt to medications and equipment like suction machines, ventilators, feeding tubes. Sometimes they come home without even a diagnosis. I’m a father myself and I can’t even imagine being in that position. It’s a massive thing that takes over their lives and turns their world upside down. It’s overwhelming. First you’re a parent then you’re the nurse. You’re the number one carer. When they come to us and we do care plans with them they’ve got more knowledge about their child than we have. They tell us exactly what we need to be doing. But they’re not a nurse – they’ve just been thrust into this situation. Even a simple trip to the shops becomes a military operation.
“When families come to us for their first visit, parents and carers stay so they’ve got some control over the care we give. On the second stay they will often go, happy that the child is safe in our care. Or they will stay here and use our facilities, like the hydrotherapy pool and specially adapted playground.
“I remember a father coming up to me at the end of the family’s stay and saying ‘It’s like the holiday we can’t have. We come here, we know she’s in safe hands and we know we can go and relax and not worry about her because you’re with her”. That’s something I’ve reflected on, thinking about that situation. If I want to book a holiday I would just book one and go. But for these families they can’t.
“Nursing in a hospital is totally different to being a nurse at a hospice. In a hospital things have to be done now, especially in A&E. It’s more of a homely setting here. In a hospital you don’t get the time to sit down with parents and get to know them.”