We spoke to Elisha, Demelza’s community nursing team lead in South East London, to find out what it’s been like building this service for families and the impact it has had.

No two days at Demelza are the same – that’s why I love my job.

I worked in the NHS for 16 years, and I was always working with children with complex needs; my most recent role was at the Central Children’s Long-Term Ventilation Service based at the Royal Brompton Hospital.

Previously I worked for a children’s hospice in London and I really missed that environment, that feeling of making a difference that you don’t get anywhere else – so when I heard about the community team lead post at Demelza I knew I had to apply, and I was thrilled to be offered the position soon after.

In my role I’ve been responsible for setting up Demelza’s community care service in South East London. I got to speak to parents and carers, children, and young people supported by Demelza to understand what they wanted out of a nursing and care service delivered in the home and community, then tailored what we offer directly to that feedback, which is really exciting! How this service looks in practice is different for everyone.

For example, I visited the park with one child during his most recent community care visit, so he could fly a kite and have some ice cream – which sounds really normal! However, this child is on a ventilator, and he had essentially been housebound for weeks because of the complexity of his care. We’ve been building up to this outing for weeks, and so this opportunity for him to be outside doing what he wanted to do was so special.

Another day in the same week, we facilitated a group outing for some of the younger children we support and went to the Discovery Centre in Stratford, which offers an interactive sensory story experience. Again, it was a really fun outing, but it was only made possible by our ability to care for each child and their complex needs.

I’ve also been visiting a child who is, sadly, coming towards the end of their life. They need a different kind of care; it’s more about managing symptoms and medications so they can be comfortable, and I’ve been visiting weekly to provide that care.

The service has developed to really become what the families had wanted, which is everything I had hoped for too. Our community respite isn’t just about clinical care, although we can and do offer that by necessity. It’s about fun. It's about getting the children out in their own community, doing what their peers would be doing. We need to be really creative in how we deliver it, to tailor it to specific children and their needs while still making it as enjoyable as possible.

I don’t think I could have delivered this anywhere other than Demelza, because Demelza offers you the time you need with families to get to know them and to form a connection.

The only thing holding us back now is staffing – we have more children and young people on our waiting list for community care, but we need more nurses to be able to deliver it. I never saw myself working at a hospice, but the reality is so different from what you expect and it’s such a fun and vibrant environment to be a part of. I hope more people see that and come to work with us, so we can continue to extend our reach to more families who need our support.

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