A voice for parents too tired to shout

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.

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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.

1) What parents do with the 'gift of time' from Jack and Jill nurses: "Sometimes I just sit in my car and rest – it's the only time I get to catch up on some much-needed sleep"

“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.

2) What parents do with the 'gift of time' from Jack and Jill nurses: "I get to go down to the chemist, the shopping centre to do the grocery shopping; that is part of my fun time"

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.

3) What parents do with the 'gift of time' from Jack and Jill nurses: "I can take my other son and help him with his homework, take him football training and swimming - it is so important that when they grow older, they will be able to say we could do what our friends could do"

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.

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.

4) What parents do with the 'gift of time' from Jack and Jill nurses: "A round trip to collect equipment, medication and I might be able to grab a cup of coffee before driving home with all the resources"

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.”

5) What parents do with the 'gift of time' from Jack and Jill nurses: "My hours give me the time to do all the paperwork that has to be completed for my child and the phone calls that have to be made to agencies for help"

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.”