Buckinghamshire Advertiser - - COMMUNITY -

AS 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 and clin­i­cal ser­vices Sue Varvel said: “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 per cent of the adult pa­tients be­ing cared for in their own homes at any one time have can­cer di­ag­noses – with the re­main­ing 25 per cent 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 per cent 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 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.”

15-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 per cent of the Pep­per Nurses’ work; now over 40 per cent 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.

Find out more at www.pep­ and­ chil­dren.

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