As well as a 24/7 responsive hospice at home service, family support and range of day services for adults with cancer and other life-limiting illnesses, Rennie Grove Hospice Care has a specialist children’s nursing team too.
Funded by the Pepper Foundation and the Department of Health, Rennie Grove’s ‘Pepper’ children’s nurses visit patients aged up to 19 in their own homes at any time of the day or night, providing hands-on care, respite and advice for parents and specialist support for other healthcare practitioners.
Pepper team member Terry O’Toole is a paediatric and learning disability nurse. During Children’s Hospice Week (May 23 to 29), which aims to improve public understanding of children’s hospice care, Terry explains just how varied his role can be…
“A large proportion of the children we’re supporting are living with degenerative, diseases and our role is not just to provide care appropriate to their current condition, but also to plan with their other care providers for a future decline.
Working together to be prepared
“We’re constantly monitoring and assessing the child, using our experience to gauge their condition and predict the next step change that will need intervention – either in the form of medication, changing care needs or a change in lifestyle. We’ll talk to the parents, encouraging them to think about what they want to happen if their child’s condition deteriorates, we’ll liaise with the child’s consultant to ensure we have the appropriate pain relief in the patient’s home, with Occupational Therapists (OTs) to make sure the home is safe and navigable for the patient and we’ll work with other care providers to create a symptom management plan.
The importance of planning
“One of my patients – a 17-year-old with cancer – who wants to die at home, has been discharged from hospital with oral pain relief. That’s fine for her current condition but without a symptom management plan, there is no contingency for the likelihood that at some point she will no longer be able to take medicines orally, or that her system won’t absorb them properly because of the disease progression. We’ve arranged for a syringe driver to be available in her home and are working on getting the necessary pain relief prescribed well in advance.
Specialist support for professionals and families
“Without a plan in place, dealing with acute symptoms can become a distressing cycle for the patient and their family. I received a call one Saturday night from a hospital, asking me to come in and meet with a family who were en route. I’d met the family before: their three-year-old had had a transplant as part of his cancer treatment and I’d made six respite visits before his symptoms were under control and he started pre-school so the family understandably discharged him from our care. Sadly his condition had worsened and this hospital admission was the third in a monthly cycle of crisis interventions.
“The acute doctors could only deal with the crisis and couldn’t recommend a preventative option. I talked to the family about meeting with other specialists to discuss a pain relief plan to combat the increasing doses of chemo and break the traumatic cycle of hospital admissions.
“Supporting parents is another key part of my role at Rennie Grove. Many families don’t realise they are entitled to support free-of-charge, such as a social worker or health funding. Some of our referrals are children whose diagnosis means they will miss developmental milestones. Often the consultants can say little more than this but we are fortunate to have the time to work with the parent, refer them to specialist care providers and reassure them that in all probability their child will make those milestones at some point. I also accompany parents into schools, reminding staff about their obligation to provide appropriate support for pupils who come under our care.
Living life to the full for as long as possible
“As well as providing vital respite for parents, our visits are often about balancing risk with quality of life. For example, my 10-year-old patient with muscular dystrophy wants to play football. I can help him do this in a safe and controlled environment which reduces the risk to his brittle bones. A young teenage patient with a heart condition is at increased risk of stroke; I take him out and about monitoring him constantly for any signs of an attack. .”
“For me, what makes our roles at Rennie Grove so unique and rewarding is having the time to get to know our patients in a way that enables us to provide the best possible care at every stage of their illness. I feel privileged to be able to do that.”