Sophie Evans is a Band 4 Specialist Carer at Noah’s Ark Children’s Hospice.
When asked why she wanted to work in a paediatric palliative care setting, she says: ‘You can be having the worst day in the world and then one of the kids laughs or smiles and you know why you do it. Also, just seeing how grateful families are, for me, it’s nothing, but for them, it’s everything.’
When asked what else she enjoys about her role at Noah’s Ark Children’s Hospice, she says: ‘I think one of the main things I enjoy is allowing children to be children. For a lot of these children’s lives things ‘happen’ to them like medical procedures and operations and they don’t have a choice because that’s what needs to happen to keep them safe. So, allowing them time to do things that they want to do is really important. Some of our teenagers come to The Ark and they want to stay in bed all day watching TV but why shouldn’t they be able to do that? We let them be themselves, and I think that’s really powerful.’
Sophie describes her role and says: ‘As a specialist carer, I go out into the community to deliver care to babies, children, young people and their families for short periods, normally around three hours. In that time, I’m there to provide care that meets the family’s needs. Whether that’s fully looking after the child or helping the parents look after the child. A lot of my families just go and sleep or do some cleaning or cook dinner. While I’m there I have full clinical responsibility for the child including enteral feeding, suctioning, oxygen, tracheostomy care, ventilation care and handling. The only things specialist carers can’t do is give medication or administer anything through a line. The other part of my role is working in The Ark to look after the children over weekends and school holidays, again taking clinical responsibility for that child but being overseen by a nurse.’
When asked what the benefits are to the children and families that she supports, she says: ‘It’s just being able to let the parents breathe and know that they have three hours where they can do whatever they want. It allows them to do day-to-day things and get back to something that feels like normal life. When you’re looking after a vulnerable child 24-7 you have to be really on the ball. It can only take a split second, and something can happen to cause them to become really unwell so just having a break from that responsibility makes a big difference. Families also spend that time with siblings or go to a parent’s evening, it’s not groundbreaking stuff, It’s just normal life.’
Sophie talks of the training opportunities that are offered to her in her role, saying: ‘We have a really good education team and there are so many in-house training sessions available to keep your knowledge and skills up to date.’
Sophie talks about the differences of working in palliative care as opposed to non-palliative care and says: ‘The end of a child’s life can be scary for families, so being able to provide support and comfort and to give the family the best possible experience of death that we can is really important. It’s a real privilege to be able to support families through that time and allow them to have some good memories of the worst time of their life.’
Sophie talks about one of the children she supports called Talin, age 8. Talin has hydrotherapy in our specialised pool with Sophie to relieve the pain from her scoliosis. Talin is non-verbal but always has a smile for Sophie, especially when she knows she’s going in the pool. Sophie says: ‘Talin loves being in the water and makes happy vocalizations for the whole session. I’ve never seen a child so happy, her face just lights up when she’s in the pool. She is generally a happy child but in the pool it’s more than that, it’s pure delight.’
Talin receives hydrotherapy from Sophie, her Specialist Carer, twice a week and during those sessions with pair have developed a close bond with Talin responding to and recognising Sophie’s voice. Zainab says of their relationship: ‘She really likes Sophie and is used to her voice now and that’s really lovely.’
Noah’s Ark Children’s Hospice also supports Talin’s sister, Fatma, with our specialised sibling groups and activities and she has her own volunteer. Fadi is a bit too young to come to groups but the whole family love visiting The Ark and having lunch in The Rainbow Café and coming to family days. The whole family are also supported by a dedicated Family Link Worker, Maria.
Zainab goes on to describe how she feels about the support she receives from Noah’s Ark Children’s Hospice: ‘It’s like heaven for me when I come here, I feel comfortable and happy, it’s like a second home.’