How Jack and Jill climb the hill ev­ery day for vul­ner­a­ble fam­i­lies

The new chief ex­ec­u­tive of Jack and Jill on how its nurses both sup­port and speak out for vul­ner­a­ble fam­i­lies

The Irish Times - Tuesday - Health - - Front Page - Sheila Way­man

The lit­tle girl with an in­cur­able neu­ro­log­i­cal con­di­tion had be­come too big for her cot at home and she was en­ti­tled to an elec­tric care bed from the health ser­vice. But her par­ents were told that age, not size, de­ter­mined when she could have that big­ger bed.

Logic-de­fy­ing bu­reau­cracy can be the last straw for car­ers when they have to deal with all the other chal­lenges that look­ing af­ter a child with com­plex med­i­cal needs en­tails. In this case, two days af­ter a li­ai­son nurse from the Jack and Jill Chil­dren’s Foun­da­tion in­ter­vened on the fam­ily’s be­half, the bed ar­rived.

“I think that is a big prob­lem with the health­care sys­tem – we try to get peo­ple to fit into boxes,” says Carmel Doyle (51), who has just been ap­pointed (from Jan­uary 1st) as the new chief ex­ec­u­tive of Jack and Jill. “You have to go and talk to this per­son and that per­son, and a big part of what our nurses end up do­ing is li­ais­ing with the HSE on be­half of par­ents and show­ing them the way through and to fill the forms and how to tick the boxes.”

It should be the other way around; the health sys­tem should be look­ing to see how it can tick the fam­i­lies’ in­di­vid­ual boxes. “It should be child and fam­ily cen­tred, the way Jack and Jill is. That means the money should fol­low the pa­tient,” she says.

While most peo­ple would prob­a­bly recog­nise the name Jack and Jill, and know it works with chil­dren, that is of­ten as far as the un­der­stand­ing goes. What it does is pro­vide home nurs­ing care and respite, cur­rently to al­most 350 fam­i­lies spread through all 26 coun­ties, who have a child with neu­ro­log­i­cal and phys­i­cal de­vel­op­ment de­lay.

“These chil­dren have to be tube fed; they are oxy­gen de­pen­dent; they have seizures,” Doyle ex­plains. “They may never walk or they may never talk; they have syn­dromes, they have ill­nesses that are on­go­ing, or that may never be di­ag­nosed.” Some will be just listed as global de­vel­op­men­tal de­lay.

The or­gan­i­sa­tion works with chil­dren from birth to five and also pro­vides end-of-life care for chil­dren with any con­di­tion, in­clud­ing can­cer, up to the age of five. For or­di­nary fam­i­lies hav­ing to cope with ex­tra­or­di­nary cir­cum­stances, the 13 li­ai­son nurses are there not only to help them nav­i­gate the sys­tem but also as a rock of sup­port for the whole house­hold.

Jack and Jill funds fam­i­lies di­rectly to pay for, typ­i­cally, 64 to 80 hours a month of home nurs­ing care. They call it the “gift of time” – time for par­ents to get out of the house, to spend time with other chil­dren, to catch up on chores, to take a breather.

Hav­ing founded her own PR com­pany, Gem­ini Con­sult­ing, more than 15 years ago, Doyle’s back­ground is show­ing as she lugs a gi­ant model of a clock into Dublin’s Sandy­mount Ho­tel for this in­ter­view and photo shoot. The prop is used as a vis­ual re­minder of how ev­ery ¤16 do­nated to the or­gan­i­sa­tion buys one hour of nurs­ing care for a fam­ily.

Only those who have been plunged into the world of 24/7 home care can re­ally un­der­stand the un­re­lent­ing, emo­tion­ally-drain­ing na­ture of look­ing af­ter a child in this sit­u­a­tion. All that has to be jug­gled with, usu­ally, one par­ent go­ing out to work to pay the bills and both of them try­ing to main­tain a sem­blance of nor­mal fam­ily life for any other chil­dren.

“With all the sup­port in the world, the par­ents are the pri­mary car­ers and the peo­ple who do most of the mind­ing,” Doyle points out.

Bu­reau­cracy

Know­ing how badly these car­ers need breaks, Jack and Jill con­tin­ues to chal­lenge an­other piece of bu­reau­cracy, which, the char­ity ar­gues, is mak­ing fam­i­lies “vir­tual pris­on­ers in their own homes”. That is the HSE’s “in loco par­en­tis” re­quire­ment for pae­di­atric home­care. If both par­ents are go­ing to be out of the house while a nurse is there, they must nom­i­nate an­other adult to act “in loco par­en­tis”.

How­ever, it may not be pos­si­ble or prac­ti­cal for al­ready over­bur­dened par­ents to have an­other adult there in their home, in ad­di­tion to the nurse.

The pol­icy doesn’t di­rectly af­fect Jack and Jill, which doesn’t im­pose any such re­stric­tions on its nurs­ing care. But it sees “how it pro­foundly im­pacts some of the fam­i­lies we look af­ter and it puts a pre­mium on Jack and Jill home nurs­ing care for day-time cover for par­ents who want to leave the house”, Doyle ex­plains.

It’s not an is­sue at night be­cause the par­ents are asleep up­stairs. But it is dur­ing the day “for the par­ent who wants to go pick up an­other child and go down do their shop­ping, or walk around the block just to get head space – the rule is you have to nom­i­nate an­other adult to be there”. You don’t have to nom­i­nate a trained per­son, “you’re just tick­ing a box”, she re­marks.

Some par­ents now say they only want a Jack and Jill funded nurse dur­ing the day be­cause they want to take a break. “There is pres­sure build­ing up.”

Jack and Jill has been chal­leng­ing this rule since last April, through di­rect rep­re­sen­ta­tions and through politi­cians, and this will con­tinue, says Doyle.

“It’s a fight we shouldn’t have to get into,” she con­tin­ues. “We have a big­ger job to do - we hope sense will pre­vail here and some­body will get back to us and this will be changed.

“We want to be good part­ners with the HSE but we will chal­lenge bu­reau­cracy when it needs to be chal­lenged. We pro­vide a voice for par­ents who are too tired to shout out about things.”

In re­sponse to a query from Health and Fam­ily, a spokes­woman for the HSE says the nurses/health­care as­sis­tants are re­spon­si­ble for the clin­i­cal care of the child. The HSE po­si­tion, she con­tin­ues, is that there should be flex­i­bil­ity, “sub­ject to a risk as­sess­ment”, on the re­quire­ment for an­other adult if the par­ents are ab­sent.

“The re­quire­ment for the nom­i­nated per­son is to have a sec­ond per­son present in the event of an acute emer­gency such as res­pi­ra­tory ar­rest, de­canu­la­tion of a tra­cheostomy or sta­tus epilep­tus.”

New doc­u­ments on the care of chil­dren with com­plex med­i­cal con­di­tions in the com­mu­nity will be pub­lished in the first quar­ter of 2019, she adds. “This in­cludes a review of the ‘in loco par­en­tis’ pol­icy, and al­lows for greater flex­i­bil­ity sub­ject to a risk as­sess­ment.”

Like most char­i­ties, the work on the ground is one thing – rais­ing the funds to keep do­ing it is the other huge re­spon­si­bil­ity. Doyle likens the turn of the year to “Ground­hog Day”, when the clock is reset and the task of rais­ing nearly ¤4 mil­lion within 12 months starts all over again. Jack and Jill re­ceives a core grant of just un­der ¤600,000 from the HSE and this wasn’t in­creased when the up­per age limit for its ser­vices was ex­tended from age four to five in 2017.

Doyle would like to see this go up again to six years, but can’t see the re­sources be­ing avail­able to do that in the im­me­di­ate fu­ture.

“Zero to six is the def­i­ni­tion of early years in Ire­land and a lot more fund­ing and ed­u­ca­tional sup­ports kick in at six. But con­sid­er­ing the stretch go­ing up to five has put on us, we have got to be pru­dent and be smart about it. Our fam­i­lies know that – we can’t over­stretch our­selves, we have to keep it sus­tain­able.”

With more than 80 per cent of the bud­get hav­ing to be gen­er­ated out of the good­will of cor­po­rate donors and the gen­er­ous pub­lic, one pri­or­ity is “how to make fund­ing a lit­tle less ex­haust­ing and a bit smarter”. Doyle would like to see it open more

char­ity shops – cur­rently there are seven, in coun­ties Kil­dare, Laois, Wick­low and Wex­ford – as not only are they an im­por­tant source of rev­enue but also a “win­dow on to the com­mu­nity”.

Novel fundrais­ing idea

Hav­ing worked as di­rec­tor of com­mu­ni­ca­tions and strate­gist with Jack and Jill for 10 years, she knows the dif­fer­ence a novel fundrais­ing idea can make.

One such is its art ini­tia­tive “Incog­nito”, which has al­ready raised ¤174,000. Now in its third year, run­ning in Dublin’s Solomon Gallery (April 3rd-7th) and also, for the first time, Cork’s Lavit Gallery (May 16th-18th), artists do­nate post­card-size works of art for ex­hi­bi­tion and sale. Each is priced at ¤50 but while cus­tomers choose what they like, they don’t know the iden­tity of the artist un­til the pur­chase has been paid and the sig­na­ture is re­vealed on the back.

Iron­i­cally per­haps, Doyle cut her links with Jack and Jill and her other main com­mu­ni­ca­tions client at the time, Early Child­hood Ire­land, at the be­gin­ning of 2018. Hav­ing had no hol­i­day the pre­vi­ous year, “I just felt burnt out”, she ex­plains, and she took a three-month break from work to re-eval­u­ate.

There­fore, the call last April to step in as in­terim chief ex­ec­u­tive from June 1st, af­ter the de­par­ture of Hugo Jel­lett, came out of the blue. But that didn’t mean she was a shoo-in for the per­ma­nent role, which at­tracted more than 70 ap­pli­cants and in­volved her in three rounds of in­ter­views and psy­cho­me­t­ric test­ing.

In a quirk of fate, Doyle shares the same birth­day, June 21st, as Jack and Jill’s first chief ex­ec­u­tive Jonathan Ir­win, who founded the or­gan­i­sa­tion with his wife Mary Ann O’Brien af­ter the death of their son Jack. Just two days af­ter his birth on Fe­bru­ary 29th, 1996, Jack suf­fered neu­ro­log­i­cal trauma that left him with se­vere brain dam­age – deaf, blind, un­able to swal­low and need­ing full-time care.

In­sti­tu­tional care

The cou­ple were aghast at the med­i­cal team’s ad­vice that they would be bet­ter off aban­don­ing their son to in­sti­tu­tional care, be­cause there were no ser­vices to help if he were to be at home. They went ahead and brought Jack home af­ter three months, where a ded­i­cated team of nurses and car­ers from the neigh­bour­hood stepped in to help them nur­ture him through the 22 months of his short but highly sig­nif­i­cant life.

Ir­win and O’Brien set up Jack and Jill, with the mantra “no care like home care”, to pro­vide all the other par­ents af­ter them with what they wished had been there for Jack and their fam­ily. In the 22 years since, there have been huge im­prove­ments, but Doyle be­lieves there is much to be done still to make com­mu­nity care re­spond to pa­tients’ needs more ef­fec­tively.

In­tro­duced to Ir­win more than 10 years ago by friends us­ing Jack and Jill ser­vices, she knows she has big boots to fill. But she rel­ishes the sense of pur­pose that comes with her new lead­er­ship role, which, she is up­front, comes with an an­nual salary of ¤90,000.

She also dis­closes how an episode in her own fam­ily life gave her em­pa­thy for car­ers. Her hus­band, Gerry, with whom she has three chil­dren, aged 12, 14 and 16, was di­ag­nosed with oe­sophageal can­cer in 2011. It was only picked up be­cause as some­body with Bar­rett’s oe­soph­a­gus, rou­tine checks were rec­om­mended.

“He had no symp­toms – he didn’t drink, he didn’t smoke, he’s a Taek­wondo in­struc­tor.” When a fam­ily mem­ber un­der­goes a se­ri­ous oper­a­tion or a se­ri­ous ill­ness and you’re the carer, you just have to go through the process, she says.

“I could not men­tion the word can­cer for one year. I had to go and do my job, I had to keep things nor­mal with the kids.”

Gerry re­cov­ered well and went on a new tra­jec­tory in his life – he re­trained as an ac­coun­tant, he opened a new Taek­wondo club and got his eighth-de­gree black belt in the Korean mar­tial art.

“It was life-chang­ing for him, but for me too. It is only in the last cou­ple of years I have been able to talk about what I went through,” she says.

The or­deal gave her a huge ap­pre­ci­a­tion of car­ers and the mask they have to present to the out­side world. “The fact that they just keep go­ing, what’s their choice? Just keep go­ing, just keep go­ing, that is what we do as car­ers, un­til some­times you take a bit of a break and you say ‘oh my God did that just hap­pen to us?’”

Doyle could never have en­vis­aged then that five years later she would be say­ing: “I think the fact I went through that with Gerry will make me a bet­ter CEO.”

Carmel Doyle, the new chief ex­ec­u­tive of the Jack and Jill Foun­da­tion. Right: Jack & Jill launches ‘Incog­nito’ an art sale of 1,500 minia­ture, orig­i­nal pieces of art for ¤50 each in The Solomon Gallery, with a chance of pick­ing up a valu­able piece worth thou­sands of euro from a well-known artist. PHO­TO­GRAPHS: NICK BRAD­SHAW CHRIS BELLEW/ FEN­NELL PHO­TOG­RA­PHY

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