‘When Rosa was born, I knew I had to start fighting for the parents of other premature babies’
MSP STARTS CAMPAIGN FOR MOTHERS AND FATHERS CRIPPLED BY COSTS OF NEONATAL CARE FOR DESPERATELY ILL BABIES.
ANEW campaign is under way to introduce a “family fund” to help low-income parents of premature babies who face crippling costs while their child is in hospital. MSP Mark Griffin, whose baby daughter Rosa nearly died after she was born 12 weeks prematurely, wants to ease the financial burden on thousands of Scottish families facing similar traumas.
Due to time lost at work as well as other costs such as travel, accommodation, food, and care for other children, parents spend £282 every week their infant is in neonatal care or £2,225 on average over a child’s total stay in hospital.
Griffin, a Labour MSP, said: “I’m paid well, but even we felt the squeeze so I can’t imagine how people on low incomes deal with these costs that see their bank balances collapse. It’s such a big outlay.
“There were babies born by C-section so the mums were not able to drive and had to rely on taxis and public transport.”
More than 2,000 babies born at less than 37 weeks receive neonatal care in Scotland every year.
Griffin and wife Stephanie were told in April that their unborn daughter Rosa would almost certainly die after an infection that nearly killed the baby’s mother.
Despite weighing just over 1lb when she was born, Rosa is now back home with her parents after 22 weeks in intensive neonatal care, four blood transfusions and an operation.
Griffin spoke about how, when their daughter was being cared for, he and his wife travelled from their family home in Cumbernauld to hospital in Wishaw every day.
However, he said they encountered other parents who had to come from much further afield and could not afford daily visits.
On average, parents of premature babies spend £53 every week on food and drink costs, because they have to buy from expensive franchises and hospital canteens.
Parents also had to travel an average of 27 miles to visit their premature baby with average weekly costs of £100, research has found.
Griffin said the expense meant some mothers were unable to get to hospital every day to breastfeed their babies. He claimed that can make the difference between life and death for premature babies.
Speaking about the trauma facing such families, Griffin said: “We went from Cumbernauld to Wishaw, but there were other people coming from Paisley, Dunfermline, Airdrie and Ayrshire.
“There were people who were struggling financially so there were some who were there one day and not the next. Mums who can’t be in hospital feel so bad about that.
“One of the main things for the health of a premature baby is ensuring that the child gets access to breast milk to deal with the risk of infection. It’s ridiculous if a mum is prevented from doing that. That’s the key point in all of this and it could make a difference to a life.”
Griffin is writing to Health Secretary Shona Robison and Social Security Minister Jeane Freeman asking for a fund targeted at low-income parents of prematurely born babies.
The Central Scotland MSP said ministers could use existing powers or newly devolved responsibilities over welfare benefits to deliver it swiftly.
Griffin said that if ministers failed to act he would bring a Private Members’ Bill to Holyrood. Griffin has also proposed legislation for an optout system for organ donation.
He said: “The Scottish Government needs to step in and set up a family fund that is targeted at low-income parents. It’s not a big cost we’re talking about. It’s a payment for a short while, it’s not something that’s permanent. If the Government came up with a reasonable figure or even if they said there would at least be a contribution, it would be a step forward. I hope they’ll be able to do it without legislation, but if it comes to it I’ll put forward a Private Members’ Bill.” Griffin claimed there was an anomaly as he said financial support is available for parents of premature babies once a child is sent home but not while they are in hospital.
He said: “It’s strange that at home there is support available, but that there is nothing to help those in hospital. The Government should address this gap.”
Last night, Griffin’s call was backed by Bliss, the leading charity for sick and premature babies, which found that 72 per cent of parents saw their family finances worsened as a result of their baby’s stay in neonatal care.
Caroline Lee-Davey, chief executive of Bliss Scotland, said “Across hospitals in Scotland, a lack of facilities, accommodation and financial support is keeping parents from being with their babies when they need them most.
“The Scottish Government must take urgent action to deliver on their commitments to these families by providing support through a family facilities fund.”
Robison said she was “delighted that Mr Griffin and his wife have now been able to take their bonnie wee daughter home”, adding that the Scottish Government “wants to ensure that every woman and baby in Scotland gets the best maternity and neonatal care”.
She said the Government would consider Griffin’s proposals.
Labour MSP Mark Griffin, whose daughter Rosa, left, was born 12 weeks prematurely, says his family felt the squeeze on their finances with all the extra costs of dealing with a premature baby in hospital