Carmela Scott, lead nurse for the Diana team at East London NHS Trust, shares a day in the life of her team as they support children with life-limiting and life-threatening conditions in the community
The day’s first communication comes from our on-call manager, who has been contacted by a family overnight via out-of-hours support. The on-call manager can help with symptom management or changes to care plans. The Diana team ensures all communication has been forwarded and identifies if an urgent response is needed.
Children’s palliative care is about the best possible quality of life and care for every child with a life-limiting or life-threatening condition. Giving families real choice is key to this approach, helping to prevent unnecessary admissions and enabling treatment to start at home. We work with the local hospice and specialist palliative care teams to offer this support, which allows for parallel planning of care within the community.
Time for our team meeting, with continuing care nurse specialists, a play specialist and the psychology team. We discuss the caseload, identify any concerns with individual patients and discuss patients’ current support needs, and what other services could be introduced.
Today, we receive a referral for a baby in hospital who has suffered a deterioration in his life-limiting condition. His parents have consented to referral and are aware of the diagnosis and prognosis.
First, a member of the team contacts the referrer to discuss the child in more detail. We will then contact the parents by telephone to introduce the service, with due regard to the emotions and sensitivity involved.
The team will visit the baby and family before discharge, to help with transition from hospital to home. We also meet with others involved in the child’s care and join up with the psychology team to discuss support within the community.
Families often don’t realise the amount of support they can receive at home and so may be anxious about leaving the safety of the ward. A meeting on the ward allows families to ask questions and make informed choices, and gives the team a chance to understand the family situation and their concerns before discharge.
The needs of our children can change regularly and prioritising unwell children can change a day’s outlook and require reallocation of care. We communicate via ‘Pando’, a messaging service for healthcare professionals, as well as by phone and email. There are safety precautions to cover lone working in the community.
Today, two team members visit a child who has been discharged home for end-of-life care. We put plans in place for symptom management and reviews, and supply medications for expected and unexpected symptoms. A palliative care doctor is asked to join the home visit virtually, enabling joint review and allowing the parents to have concerns addressed.
Today we are able to have lunch together, which is great! As a team, it is important to have that togetherness, and touch base on each other’s wellbeing. After lunch, we complete documentation and follow up our home visit, which must be done as soon as possible. This could involve the GP with regard to medications, checking supplies such as syringes in the home and discussing planning with other professionals.
The Diana team at East London NHS Trust (l to r): Carmela Scott, Katie Lewis, Nasayha Tahrim, Lizzie Sibanda
There is a CIN (child in need) meeting arranged by social care. Each child has an allocated nurse who attends these meetings to provide updates and share concerns. We discuss patients regularly, so another team member can step in if the allocated nurse cannot attend. We work closely with social care and most children with complex needs have a CIN plan, which is regularly reviewed, with any support needs or safeguarding concerns flagged up.
Another home visit for a child who is stable, but whose condition could change at any time. A team member reviews all aspects of the child’s wellbeing and care. Information is shared with professionals such as a dietitian and others involved in care, to make sure medications are optimised and the feeding regimen is maintaining the child’s weight. When we return to the office, we will update the system as needed.
Home time. Sometimes we phone another team member before going home to reflect on the day so we don’t take our challenges home. Our team is made up of parents, partners and people with families, so it’s important to wind down and enjoy our personal times so we can give our best the next day.
We are very proud of the service we provide in our community. It is extremely rewarding as it allows us to support children and families in their own home, providing health advice, reassurance, emotional support and forward planning as they navigate a very challenging journey.
What the role involves
- The Diana nursing team supports children requiring complex care, symptom management and end-of-life care within their home.
- The team in east London currently supports a caseload of approximately 65 children with life-limiting and life-threatening conditions, and their families.
- The Diana service was established as a tribute to Diana Princess of Wales.