I am a Senior Community Children’s Nurse from Oxleas NHS Foundation Trust and my role is to care for children in a variety of settings in the community. A request was made for our team to work with the care team at Demelza South East London so that they could relieve some of the pressure on The Evelina Children’s Hospital High Dependency Unit (HDU) in case it needed to receive COVID-19 patients. Demelza had accepted a seven-month-old infant who was born premature and required assistance with maintaining his airway. As I have experience in setting up care packages for children with tracheostomies and long-term ventilation, I decided to volunteer.

At first, I was a little apprehensive about being in a hospice environment and did not know what to expect. Would they have all of the right care equipment and the right Personal Protective Equipment (PPE)? On my first day my fears were soon alleviated. I was welcomed at the entrance by a lovely Health Care Assistant called Hilary who took me and my colleague Ana through the procedure for signing in and checking our temperature in case we had any COVID-19 symptoms, which if present meant we would not be allowed to enter. This was very reassuring as I knew they were doing their best to keep the staff and children safe.

Hilary took us to the staff room and provided us with a Demelza polo top which helped to make us feel part of the team. We then went on a tour of the hospice which had a very homely feel. The family bedrooms were like hotel rooms which must be very welcoming at the end of the day when caring for a child with complex needs or end of life. Some of the bedrooms had been adapted to become a ‘donning and doffing’ area for PPE which had been well thought out by the team. Red, amber and green zones had also been carefully discussed to avoid parents mixing with each other to ensure they and their children were kept safe during their stay.

Following an orientation of the hospice we were introduced to the Lead Nurse Fiona who welcomed us to the team. The nurse in charge for the shift gave us a handover and allowed us to read the notes of the infant being transferred to Demelza that morning. The child was being transferred on a trilogy ventilator which I was not familiar with and the Care Team reassured me that they would go through this with me when he arrived. When the infant and his mum arrived with the ambulance crew and escorting nurse it was all hands on deck to assist with carrying the equipment to the room in order to set up. With a team effort the room was set up in no time and the child and his mum were made to feel welcome.

Ana and I introduced ourselves and informed mum that we would be looking after them both during their stay at Demelza. The infant stayed at Demelza for about six weeks and I became familiar with his routine care. It was good experience for me as I was able to enhance my learning and feel more confident in the use of a trilogy ventilator especially how to trouble shoot if it alarms. I also learnt some new things from mum which is great as parents usually have up to date knowledge of how equipment works and are often able to explain things in a simplistic way which is easy to understand. It is important to build a good rapport and trusting relationship with children and families you are working with especially when providing respite care. Due to COVID-19 mum was encouraged to do most of the care and knew that we were there to support her when needed. If mum went home for the day she would be reassured that I was confident in all aspects of care.

I enjoyed being able to care for the infant, who was always very happy - apart from when his nappy needed changing! I also participated in some Zoom sessions with the music therapist and watching how he interacted with this. When the infant’s carers were fully competent in his care needs it was time for him to go home. The team were very sad to see him and his mum leave as they had made them at home throughout their stay.

I was given the privilege of escorting the infant home. This was a great thing to do as his brothers and sisters were excited to welcome him home for the first time. I felt confident in setting up the equipment ensuring it was safe before we left. I will always remember this experience as I had to don full PPE with visor and mask whilst sitting in the back of the pool car. Our ‘chauffeur’ was Vicky who also wore full PPE including a mask. I think we had some funny stares along the way but the infant didn’t seem to mind as he was used to us being dressed like that.

It was lovely to hear staff say things like, “I love my job” and “I love getting children bathed and dressed, making them cosy and reading them stories in bed”. This made me feel that these children were truly well looked after and that nothing was too much trouble. Despite these strange times of COVID-19 where wearing PPE can be a barrier to communication, the team including house keepers and chefs continue to deliver care in a clean and homely environment.

This experience has deeply moved me and I am proud to have been part of the Demelza Care Team who demonstrate dedication, care and compassion in supporting children with serious and terminal conditions and their families.

Alison Camden
Senior Children’s Community Nurse
Oxleas NHS Foundation Trust