Mags Naughton was working in the ICU at Temple Street Children’s Hospital in Dublin, a mainstay of children’s care in Ireland, for eight years when her good friend Mary Joe Guilfoyle got in touch. It was 1999 and Mary Joe, a former Temple Street colleague, had joined a young charity called the Jack and Jill Children’s Foundation the previous year. Now she wanted to know if Mags would join her.
“She said: ‘You know this new Jack and Jill I’m in? Would you consider coming on as the second nurse?’” Mags recalls. “To be honest, I didn’t give it a second thought. When you’re young, you don’t have any fear.”
It was certainly a step into the unknown. Jack and Jill had only been established in 1997 by Jonathan Irwin and his wife Mary Ann O’Brien, whose son Jack had a post-birth brain trauma that left him blind and deaf and reliant on a feeding tube. With no support for Jack outside a hospital, the family assembled home care with the help of local nurses. Jack lived for 22 months before he passed away at home in December 1997.
“Jonathan vowed that their experience would never, ever happen to another family – the complete isolation and sense of panic, really, of having a very sick child,” Mags explains. “That was the start of it. Before Jack and Jill, nobody really thought about these little ones and how difficult it is for families.”
Today, Jack and Jill is a nationwide charity that funds and provides in-home nursing care and respite support for families caring for children, up to the age of six, with severe-to-profound cognitive delay associated with complex needs. Typically, the child may be tube-fed, oxygen-dependent, have seizures, and require medication management and around-the-clock care.
Jack and Jill also provides end-of-life care for all children up to the age of six, irrespective of their diagnosis. The charity’s service operates seven days a week, with no means test, no red tape and no waiting list, Mags explains. A self-described “elder” in the organisation, she is one of its 14 highly-qualified and experienced Liaison Nurse Managers, working alongside two Heads of Nursing, two family co-ordinators and a ‘crew’ of approximately 500 community nurses and carers.
Mags explains how it works in practice. Referrals to Jack and Jill usually come from maternity hospitals, paediatric hospitals, Community Network Disability Teams or via family self-referrals, when it is obvious a child and family need support and may fall under Jack and Jill’s criteria. The charity’s core nursing team, including Mags, act as case managers, designing a home nursing care plan around the child’s unique situation and needs. “It’s a parallel universe for these families,” says Mags. “When you have a seriously ill child, you do enter a different world really.”
The Liaison Nurse Managers introduce local community nurses and carers to families, providing them with nursing care, respite support and practical advice. The charity will fund and deliver up to 80 hours care per month per child, and 100 hours per month for children at end-of-life stage.
Since its foundation in 1997, a total of 3,040 families have been supported by Jack and Jill; today, there are 414 families under the charity’s care across Ireland. Because of its unique commitment to families of up to six years, Jack and Jill’s nurses and carers really become part of the family, says Mags, who currently supports 31 children and their families in her area of mid-west Ireland.
She still vividly recalls her first day at Jack and Jill, doing a joint visit with Mary Joe to a family in the west of Ireland. “It was a very strange feeling going into a home, compared to the opposite, where people come into you in the hospital. At the same time – and I know this sounds very cheesy – it is a real privilege to be asked into somebody’s home,” she says.
Fast-forward to today and while the Jack and Jill offering has expanded significantly, its core service has not really changed. “When we get a referral, we visit a family – who are very distressed, naturally – and simply ask them what they need and what can we do to help support them,” says Mags, herself a mother-of-two.
She gives the example of parents of a baby with a serious illness that leaves them prone to seizures and requiring 24/7 care. “You can’t leave this baby with Granny or with babysitters. We bring in a nurse who is fully qualified to mind a child who has seizures. After three or four weeks of our nurse coming in, the parents will be comfortable leaving the baby and getting some time out for themselves, so that they can recharge, take a much-needed rest, meet a friend for a coffee, spend quality time with other children or do some errands – the things some of us take for granted that are simply not feasible for the families under our care.”
Parents who receive Jack and Jill services often speak about getting the ‘gift of time’, as well as help with the skills and confidence to look after their children at home. As Mags describes it: “We’re never going to take away their situation but at least we’re making it little bit easier.”
Mags and her colleagues also assist families in navigating the state benefits they may be entitled to receive, particularly if a parent has to give up work to care for their child at home. Largely thanks to Jonathan Irwin’s campaigning, Jack and Jill children are entitled to a medical card – giving free access to medical services and prescription medicines – and get parking permits from the Irish Wheelchair Association.
The charity is good at personal touches, such as sending birthday cards to its children, and has an annual family fun day where families in the Jack and Jill community are invited to come together, to meet one another, establish relationships, have fun and where siblings get to see other families who have similar challenges, and for it all to feel ‘normal’. Mags says Jack and Jill is acutely aware of the effect that having a sick child at home can have on siblings. “These little children need constant care, which can cause resentment. Often, a brother or sister would say, ‘I love when the nurse comes in because I get Mammy back’.”
Mags has been heavily involved in the expansion of Jack and Jill’s services over the years, including a steady increase in its age ceiling – from age four initially to six now – and its introduction of end-of-life care. She was instrumental in developing resources for supporting families at the difficult end-of-life stage and has been a key advocate for families in the area.
Sadly, about 30 Jack and Jill children die per year. The charity provides bereavement support and practical assistance to spare families from dealing with death-related documentation and cancelling state services. Reflecting on two children under her care who passed away recently, Mags shows a colourful glass Jack and Jill butterfly ornament which is sent to bereaved families. “It’s just a way of letting them know we’re always thinking of them,” she says.
Alongside her direct contact with families, Mags has a close relationship with the neonatal ICU in her local hospital and with other agencies working with these children and their families in the community. “My phone is always hopping,” she says. Managing the various elements of the job got easier after Clanwilliam – back then known as Helix Health – designed bespoke software for Jack and Jill ten years ago.
The technology was “a game-changer” for the charity in terms of capturing patient data in an efficient and secure manner, particularly given its nationwide remit. With Clanwilliam, Jack and Jill’s nursing staff can safely record and share sensitive data or request that paperwork is sent out to a family through the system.
“We used to write all our notes manually in folders that the nursing team carried from family visit to family visit,” says Mags. “Now we type them into the system and everything is there in the patient record. When you go on holidays, all your records are there for your colleagues. The scraps of paper are gone.”
Mags’s long experience at Jack and Jill is invaluable, not least in knowing how the health service jigsaw fits together. For example, she is active in advocating for Jack and Jill children to get continuing care after they pass the charity’s age limit of six and leave its services.
“We would love to take every sick child in Ireland but unfortunately we can’t, due to financial and resource constraints and as such, we must adhere to our referral criteria. Once a [Jack and Jill] child turns five, I will be applying for a home support service from another agency and advocating for them. Unfortunately, there are waiting lists for services, which makes me very cross.”
Jack and Jill needs about €7.5 million to fund and provide its services in 2024, with an estimated €1.7 million – about 22% – coming from the Health Service Executive (HSE), the public health system in the Republic of Ireland. “The HSE does recognise and acknowledge the work we do,” says Mags. “We are very much an established stakeholder in delivering care in the community.”
Fundraising comes from corporate, community and public donations, as well as Jack and Jill’s retail network. The charity has been recognised for good governance, ethical fundraising and transparency; it likes to say that there are really only two jobs in Jack and Jill: providing the service and finding, or minding, the money to provide the service.
Mags reflects on “seismic changes” since she joined Jack and Jill in 1999. Initially, she covered the entire west side of Ireland while Mary Joe covered the east. “I was really learning on the hoof. It was the first time I had a new car and the first time I held a mobile phone – I didn’t have a clue how to use it.”
“The work can be tough, but the rewards come from knowing we are making a real and tangible difference for the families under our care. We are giving them support, confidence and hope, and that is the most rewarding gift of all,” Mags says.
She sees the charity’s progress as a great tribute to Jonathan, the Jack and Jill cofounder, who died in December 2023, aged 82. An energetic figure in Irish life, he was always knocking on doors to get better care and support for sick children. “Jonathan was a very inspirational man,” says Mags. “I loved the can-do attitude he had. He used to say to us, ‘Darling, the answer is Yes. Now what’s the question?’”
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