01 April 2016

Caring for children

Jamie montageAs part of its care provision for patients and their families affected by life-limiting illness, Rennie Grove Hospice Care supports children as well as adults. The charity’s paediatric team, funded by the Pepper Foundation, has been providing responsive 24/7 Hospice at Home care for children for over 26 years. 

Six specialist paediatric nurses, known as the ‘Pepper Nurses’, work with families across much of Bucks, throughout Dacorum and into St Albans and Harpenden to provide individualised care and support for each child in their own home. 

Director of Nursing & Clinical Services, Sue Varvel, explained: “Providing a 24-hour service is at the heart of our offer, as it is for our adult patients.  We share the same goal: to prevent unnecessary hospital admissions and provide specialist, personalised care and support for as long as needed.  Where we differ is in our response to the care needed.”

Whereas 75% of the adult patients being cared for in their own homes at any one time have cancer diagnoses - with the remaining 25% suffering from other life-limiting conditions such as Motor Neurone Disease or Chronic Obstructive Pulmonary Disorder - this ratio is reversed for the children under Rennie Grove’s care.

Sue added: “Around 20% of our child patients have cancer; the vast majority have progressive, often congenital conditions that mean they are unlikely to live into adulthood.  Many have long-term needs, however, and we’ll provide long-term care accordingly, sometimes for more than a decade.  Sadly though, in some cases we might only be involved for a matter of days.” 

16-year-old Jamie Hodgson and his family have been supported by Rennie Grove’s Pepper paediatric nurses for the last six years.  They provide specialist nursing as well as personal care for Jamie and respite support for his parents.  Mum Christine explained: “Jamie was born prematurely at 30 weeks and has congenital heart disease.  When he was only nine months old, he had two heart attacks and total organ failure. He depends on us for all his needs and it’s crucial that he’s with someone at all times who would be able to resuscitate him.”

The Pepper Nurses take Jamie out and about and look after him of an evening to give his parents some time together.  “They administer his medication, wash him and put him to bed, none of which your typical baby-sitter would be able to do.  Without them we’d be stuck - we’d never go out!” said Christine.

Jamie has had a gastrostomy, enabling him to be fed directly into his stomach, since he was one.  He recently underwent surgery to alter the feeding device he uses because it had started rubbing on his ribs. The Pepper Nurses were on hand to help the family get used to the new device, helping them regain confidence after a difficult start to the new regime.  “Jamie had to undergo emergency surgery when the hole started to close up,” explained Christine.  “We’ve had to call the Pepper Nurses out on Sundays and even on Christmas Eve.  They are a Godsend.”   

As the needs of its paediatric patients vary so much and are so different from those of the adults it supports, Rennie Grove’s model of 24-hour care differs accordingly.  Instead of a separate night team, the core team of paediatric nurses work a shift system and operate an on-call service overnight.

“The responsive element of our work, where nurses react to emergencies during the night, is growing because advances in treatment mean children are living longer with increasingly complex medical needs,” explained Sue.  “Planned visits used to account for around 90% of the Pepper Nurses’ work; now over 40% of contact with families is responsive, urgent call-outs during the night.”

The Pepper Nurses are busier than ever, not just because of the growing number of emergency visits out-of-hours, but also because their caseload has risen exponentially in the last few years. 

“We were caring for around 40 children two years ago; now we have around 55 families on our books,” said Sue. 

After seeking extra funding, the charity was able to expand its paediatric service further into West Herts in February 2014, opening up its 24/7 Hospice at Home care to families in St Albans and Harpenden.

“We work with healthcare practitioners – including other children’s hospices - in all settings, so our model of care is well-known across the area in which we operate.  However, our concern is that the families themselves, who by definition are hard-to-reach because they are so tied up with their child’s care, are not aware that they can access our service at no cost, thanks to our generous funders,” explained Sue. 

“Please help us spread the word about this special service that can make such a difference to families.”

Find out more at www.pepper.org.uk and www.renniegrove.org/children