Charley Bird is one of Noah’s Ark’s Band 6 nurses and has previous experience in a range of clinical setting but settled on paediatric palliative care, she explains why: ‘I think it’s being such an integral part of somebody’s journey and helping them feel empowered to make decisions about their life, literally life-changing decisions. It’s a complete honour to be involved.’
Charley talks about what she enjoys about her role, saying: ‘I’ve always had such an interest in children with complex needs and building bonds with the families that I support and here I can. I can be with them for the whole of their journey to support them and sometimes that support isn’t clinical, it can be simply having someone to text to bounce ideas off or to ask advice. It’s amazing how much something can mean to someone even if it feels like the smallest thing to you.’
Charley goes on to describe the benefits of the care she provides: ‘Many of these families are limited to what extra care they get; any kind of added care is very sought after. So, depending on the care package the family has we add to it but in some cases, we are the only care they get. A lot of the children we support have extremely complex needs, so there usually isn’t someone else in the family that can take care of them. I think just knowing that there’s somewhere they can go that know their children and their conditions so well is a real comfort.’
Charley has also previously worked in other hospices but says The Ark is different, she says: ‘We’ve got really good management, there are always more senior people that I can go to for support but also within the team. There are also lots of training opportunities and you get regular protected time to do things like study days. Where I worked previously focussed on respite and end-of-life care but here the care is truly holistic. The Family Link Team provide one worker that stays with a family for their whole journey to join up their care and The Family Activities Team provide fun for the whole family. I’ve never seen that before.’
She describes the differences of working on an NHS ward and here at The Ark: ‘We build rapport and trust with families. In hospitals there are so many staff but here the families see the same familiar faces. But also, just for families to be able to pop in, say hello, have some lunch and let their child have a bath if they don’t have an accessible one at home – it’s invaluable. It can also be a big change for nurses, the pace is slower, that’s not a negative it can just take a bit of time to get used to but the upside is you have more time to develop relationships with children and families and be there every step on the way with them. You also get to devote precious one-to-one time to these children, because usually, even in hospital, they would never get one-to-one care. So, to be able to do nice things like give them a bath or take them for a walk, you just wouldn’t have time to do things as compassionately in a busier environment.’
When Charley was in her previous NHS role, she got to know a little boy called Arthur and his mum and dad, Christina and Jack. Coincidentally Arthur is also a Noah’s Ark child, Charley says: ‘I had the honour of meeting Arthur and his family in my previous role in an acute care setting. It has been lovely to see his journey within a different care setting. I had the opportunity to care for Arthur at home to give Christina and Jack some time together, spent away from the family home to celebrate their anniversary. Arthur has complex needs, and I like to think that my depth of knowledge and experience allowed them to feel comfortable leaving Arthur in my care.’
Christina, Arthur’s mum said on the standard of nursing care at Noah’s Ark Children’s Hospice: ‘They’re exceptional in everything that they do. The nurses at The Ark are the ones we trust the most with Arthur. Arthur has complex needs and at hospital it has taken mistakes to happen in order for them to understand and learn but with Noah’s Ark you don’t have to keep explaining or justifying yourself, they respect you as the parent and that you are the expert when it comes to your child.’ She goes in to talk about Charley specifically, saying: ‘She’s known Arthur when he’s been acutely unwell from a very young age and also now when he’s well, so she’s seen Arthur’s full journey. Charly really does go the extra mile, and she is a great asset to Noah’s Ark.’
Charley’s role at Noah’s Ark Children’s Hospice is very varied, she explains: ‘My role as a Band 6 Nurse is to lead and co-ordinate clinical shifts in The Ark, overseeing all aspects of the children’s care, allocating nurses to children for them to administer medication and physio plans. A lot of stays at the weekend are respite so we’re essentially replicating everything the children’s parents do for them plus fun things like the hydrotherapy pool and visits to the nature reserve. I also do on call shifts on a rota system where I am the main nurse in the office, answering calls that come in and being on the other end of the phone for other professionals who need support. In the community, I complete assessments and care plans to be followed by specialist carers and other nursing staff. I also attend multi-disciplinary meetings with the families to co-ordinate their care, including joint assessments with Great Ormond Street, including out-of-hours end-of-life care.
When asked about what important choices her care gives to families, Charley says: ‘One of the biggest choices we give families is where their child receives end-of-life care. Without qualified nurses caring for their child in The Ark or at home their only choice would be for their child to die in hospital.’