How families of Ireland’s sickest children can fall into a financial black hole

The carefree days of summer were stretching ahead for the Mernagh family in June 2016, with one more week of school left for their eldest child Annabelle, who was just finishing junior infants.

Their younger daughter Poppy, a perfectly healthy, energetic two-year-old, was showing flu-like symptoms that weekend so her parents brought her to the out-of-hours doctor, who diagnosed tonsillitis. But he advised them to ring him that night if she wasn’t improving.

“We rang him and he told us to bring her to A&E, which we thought was a little bit dramatic but we went anyway,” says her mother, Jen Tymlin. “Thankfully, we did.”

Over the next 36 hours at the National Children's Hospital in Tallaght, it emerged that Poppy had contracted a rare viral disease affecting her spinal cord, acute flaccid myelitis, "which started to shut off all her muscles", says Jen.  The little girl was transferred to the intensive care unit in CHI at Temple Street, where she was to spend the next 17 months, and now remains paralysed from the neck down.

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Life changed irrevocably for the Co Wicklow family of four that June week – emotionally, logistically and financially.

Jen had to stop her childminding business immediately and spend Monday to Friday, day and night, up at the hospital with Poppy. Edward continued his job with a heating and plumbing company but cut back his hours so he could look after Annabelle, with the help of extended family. Then at weekends, he took over from Jen at the hospital, giving her the chance to return home to Rathnew to be with her older child.

Only few months before Poppy came out of hospital could Jen spend one night a week at home with Edward. “We weren’t a couple for a year.”

Parents of long-stay paediatric patients are still their primary carers. Not only do they want to be at their child’s bedside, they must be there. The hospital system depends on it.

You can't just disappear for a week

There is also lengthy training for parents to prepare to bring home a child who may be “peg fed”, where liquid nutrition is tubed into the stomach, and/or have a tracheostomy, that involves placement of a tube through a hole in the neck into the windpipe

“You are not allowed to leave – you can’t just disappear for a week. You are still responsible for your child in hospital, the nurses aren’t there to mind them,” says Jen. Indeed, any significant absences would be considered a case of child neglect and reported to Tusla.

Black hole

Yet they are not carers in the eyes of the State when it comes to support payments. Nor will they qualify for unemployment benefit – even though they have lost their job or, at least, their income – because they are in no position to be a “jobseeker”. They’re in a black hole as regards State financial assistance

On top of grieving for the loss of a normal future for their seriously unwell child comes the financial pressure of trying to pay regular bills on a reduced income, while bearing increased costs that living in hospital brings – from accommodation, travel and parking, to eating without cooking facilities and often extra childcare for siblings.

“There should be something for that situation, families just can’t sustain that,” says Jen. “They’re already going through something really horrible.”

Sheila May, a senior medical social worker in CHI at Temple Street, sees families of long-term patients fracture in front of her eyes.

“We are dealing with the sickest children in the country and the parents under the most strain, and then we are adding into the mix that they are being put under extreme financial pressure. We have kids living in the hospital for two years.

“Living in a hospital long-term is really, really tricky to manage,” she continues. “It takes a very strong couple to survive it.”

A mother having to give up work and father going part-time is a common scenario. Parents often try to work online from hospital, to keep something going. “Another family I worked with, both parents had to give up work. Their child was in ICU for over a year and neither of them could work, they had another child.”

As the hospital is a national centre, there are children there from every part of the country, says May. “At the moment we have a road traffic accident from Clare; a neurological case from Kerry; a little boy from Cork who is going to be here long-term.”

These children’s medical needs are so complex, the regional hospitals can’t cope, she explains.

Social workers help parents at the hospital apply for the Domiciliary Care Allowance, which is a non-means tested monthly payment of €309.50 for parents who can prove that their child has care needs far above and beyond a typical child of that age. This is also now linked to entitlement of a medical card for the child up to the age of 16, “which is huge”, says May.

Carer’s allowance

Parents receiving DCA will also get a respite grant once a year and are entitled to apply for the means-tested weekly social welfare carer’s allowance. However, even after being approved for the DCA, no payment and the knock-on entitlements are triggered until the child is discharged from hospital.

In the absence of the DCA, the social workers try to help get the child an emergency medical card because otherwise parents get an inpatient bill from the hospital, but at least that is capped at 10 nights a year, amounting to about €780 in Temple Street. More significantly, the card is needed to start planning for going home, as all the necessary equipment would be ordered through it.

Last February, in written Dáil replies to separate questions on the issue from Wicklow TDs Stephen Donnelly (Fianna Fáil) and John Brady (Sinn Féin), the Minister of State at the Department of Employment Affairs and Social Protection Finian McGrath reiterated that children qualifying for the DCA could have their application approved while in hospital, with payment starting on their return home.

“Any parent experiencing difficulty meeting the additional expense arising from having a child in hospital may qualify for a payment under the department’s means-tested exceptional needs payment scheme,” he added.

An exceptional needs payment is a once-off payment, May points out, “these parents need an income”.

Under current policy, parents who are already receiving the DCA will see their payments stopped if their child is admitted to hospital for more than 13 weeks.

“It would be different if you were getting a carer’s allowance for an adult and, when they go into hospital, you don’t need to be there all the time,” says May. “But if you are caring for a child and they go into hospital, you are still caring from them. They may be staying here but you are still the primary carer.”

Hospital staff are advocating for families who might have never had any dealings with social welfare payments. “All of a sudden they find themselves in a situation where they are under financial pressure, with everything else going on,” says May.

Couples with higher incomes often have bigger mortgages, she points out, so with the loss of one or more income, the debt of a heretofore financially comfortable family can spiral very quickly out of control.

The loss of income is huge but there are also the hidden costs

"There's a real issue with having a sick child driving people into poverty that weren't previously in poverty," says Anna Gunning, chief executive of Children in Hospital Ireland. For people who are coping well, "the loss of income is huge but there are also the hidden costs".

Her organisation is calling for some recognition within the welfare system of these non-medical costs of having a child in hospital, with the introduction, say, of a daily allowance. “It is the day-to-day costs that really drive people under pressure.”

Cliona’s Foundation, a small Limerick-based charity that helps parents with non-medical expenses, has estimated the cost of having a child with a life-limiting condition amounts to €145 a day.

Brendan Ring, who set up the charity with his wife Terry after the death of their daughter Cliona at the age of 16 in 2006 due to an inoperable brain tumour, says the DCA "needs to be totally reviewed. The family needs the allowance in place immediately, irrespective of whether the parents have children as inpatients or at home."

Gunning doesn’t believe the cost to the State of extending the DCA, or introducing something equivalent for parents of long-stay child patients, would be substantial, as numbers are small. But it would be a significant help for those affected.

At Temple Street, for example, only 80 of the 15,320 inpatient admissions last year were “long-stay”, which is defined as 31 days or more.

“Think of the profile of kids who are in hospital – they are usually in the very younger age group and the families have probably got a new mortgage and a new house, starting school bills and with other siblings. It is probably at the most expensive time of their life,” she adds.

For the Mernagh family, their €1,500 monthly rent and all the other regular bills had to be paid, as well as the additional expenses. With one of them in Dublin all the time, “it was like having two families”, Jen says.

“Edward would come up one night a week because he would miss us. He would maybe bring his mother up, and Annabelle would come up as well.” But trying to give the family time together in this way came at the cost of higher petrol bills.

The hospital’s parents’ accommodation cost €10 a night, until that was waived after the first four months. With no access to cooking facilities, it was take-aways, eating out or the hospital canteen – all costly and mostly unhealthy. With all that’s going on, self-care is a challenge.

“We have gone through counselling individually and together as a couple,” says Jen. Some was provided free, the rest they had to pay for. A friend in Wicklow offered play therapy for Annabelle, at half price.

“The money stops coming in and then you have all these bills to pay,” says Jen. In addition to what’s going on in hospital, “you’re on a constant fight as well to try to get everything in place to get home”, such as housing and a home-care package.

She uses the word “lucky” a number of times in describing the ways local people rallied around. But it’s an ironic term considering the tragic circumstances.

A mother at Annabelle’s school in Ashford, Scoil na Coróine Mhuire, recognised what the financial impact would be and immediately got a small group together to start fundraising. Some €30,000 was raised, of which €21,000 went on a wheelchair-accessible car for Poppy, which enabled them to bring her out for an odd day even before she was discharged.

Jen also believes it proved to be an advantage that they were private renters. Although they had to apply to the council for housing, it meant all the adaptations necessary for Poppy were funded. She has heard “horror stories” of home-owners who can’t afford to adapt their houses to enable the transfer of their children home from hospital, as grants available will only partially cover costs.

They were also “lucky” that the council ended up buying their rented, relatively new house from the landlord, a builder. The family didn’t have to move and the landlord did the required work for the council without delay.

As normal as possible

Almost three years after Poppy fell ill, they are trying to keep life as normal as possible. A “very bright child” who is cognitively fine, she’s nearing the end of her first year in the same school as her sister.  With all her limbs and internal organs affected, Poppy is confined to a wheelchair and uses eye-gaze technology for her school work.

“She can’t eat, she can’t swallow, she can’t cough and can’t clear her own airways, which is why she has the tracheostomy,” says Jen. It’s the tracheostomy which necessitates the presence of two trained people with Poppy at all times.

You need someone else there to call an ambulance

“If it gets blocked, you have to do an emergency change and it does take two – you can do it on your own but you need someone else there to call an ambulance, or if you have to do CPR you can’t do it on your own,” she explains. One person has to be awake with her 24 hours a day. “One is allowed to sleep because you can shout then if something happens.”

Jen and Edward are both trained, as is Poppy’s SNA at school, and home-care package nurses make up the rest of the time, enabling Edward to go out to work, which he is now doing six days a week.

The school is still struggling to get adaptations done. “There are no ramps; she can’t access the hall, she can’t go to some parts of the fields and a hoist is being used in a public area in the bathroom,” says Jen. But she praises the principal who is “very proactive” in fighting for further modifications needed.

As for Poppy, “she is kind of getting more and more aware that she can’t move”, says Jen. “I think she kind of had it in her head that she might move when she’s bigger and that this was temporary. She asks a lot of questions: ‘What can I do as a job when I’m older?’ ‘Can I have a baby?’. She’s five and she’s asking me these mad questions – can she get married; can she have a boyfriend? Basically, she’s thinking ahead, questioning it all.”

But she has made a few friends at school. “They’re just kids running around. I think when it comes to being teenagers and they just want to sit still and talk, she will be fine,” laughs Jen, who is already on the receiving end of her five-year-old’s wisdom.

“We were out for a walk last week and Annabelle [8] was being bold and I was giving out to her and Poppy said: ‘Mammy, come here, I want to talk to you. Maybe you shouldn’t say that she’s being a brat’. But, I said, she is. ‘But that is not very nice, I am sure that hurts Annabelle’s feelings’.”