The Pepper Foundation has been working in partnership with Rennie Grove Peace Hospice Care for over thirty years. During that time, we have worked hard to ensure that the service has been fully funded and that families always have access to hospice at home care, should they need it.
Over the last four decades, the children’s service has changed a lot; we have seen the team expand from one part-time nurse in the 90s to a whole team providing specialist services to families caring for children with life-limiting and life-threatening conditions.
Sarah is well known to the Pepper Foundation and has been a children’s nurse since 2000, specialising in children’s palliative care since 2009. She’s one of four Children’s Hospice at Home Nurses with Rennie Grove, caring for children aged 0 to 19 with life-limiting conditions and supporting them and their families.
“I’ve worked here for a large part of my career to date, with a short break doing agency work,” explains Sarah. “I returned to Rennie Grove in April 2020, just as the first national lockdown started. The children’s service was more important than ever to families at that time. They knew they could get hold of the charity’s Children’s Nurses even as other services were forced to close, restrict their offer or focus exclusively on Covid.
“Often, children are on our caseload for many years. Their needs evolve, but their families still need the specialist, personalised care, support and respite we can provide. It was lovely to meet some of the children again whom I’d been caring for since they were tiny.
“Only a small minority of our child patients have cancer. Most have genetic or neurological conditions or complex metabolic disorders. Some children come to us without a diagnosis, and some may never get a diagnosis. But their care needs require specialist nursing. Alongside respite care and play, it can bring them a quality of life they might not otherwise be able to achieve,” Sarah explains.
Historically, Rennie Grove’s Children’s Nurses provided specialist care for children and respite support for their families. Now Healthcare Assistants (HCAs) provide respite support, freeing up nursing time for families whose children have complex nursing and respite needs.
Sarah continues: “Our four-strong nursing team currently cares for 43 children, 12 of whom are on my individual caseload. We do monthly reviews of all the children under our care, as well as planned visits to patients’ homes and responsive visits wherever necessary.
“Much of our work is around managing symptoms to avoid emergency hospital admissions. Regular reviews and a good rapport with parents means we can act quickly to support children’s changing needs. We can often pre-empt problems and we’re available to treat any new symptoms as soon as they occur. This can make the difference between a child having to be blue-lighted to hospital – or being able to stay as comfortable as possible at home.
“We liaise with all healthcare professionals involved in a child’s care, whether that’s at another hospice, in hospital or any other healthcare setting. We’ll also help with other things that could impact on a child’s wellbeing, accompanying families to some appointments if necessary. For example, visiting a new property with parents to check its suitability for their child’s specialist equipment, or attending a discharge meeting at hospital.
Monday to Friday, the children’s nursing service operates from 8am to 8pm. “At weekends and bank holidays, we’re available 24 hours a day,” says Sarah. “We’re always as flexible and as personalised as we can be, judging each case on an individual basis and adapting the care we offer to that child’s needs at any time. For example, if a child’s condition becomes unstable, we’ll offer the family 24-hour on-call nursing care. We do the same as a child nears end of life. If parents can reach us any time of the day or night at times of crisis, we can help avoid hospital admissions and keep the whole family as calm and comfortable as possible when every moment matters.”
You can help the Pepper Foundation ensure that nurses like Sarah are always available to support families by making a donation.