Financial support in neonatal care

Ask the Government to protect families in neonatal care from the cost-of-living crisis in England

The rising cost of living is hitting families hard in England. In a survey by Bliss, the charity for babies born premature or sick, parents told us they:

spent an average of £405 per week while their baby was in hospital
lost an average of £3000 in missed income during their baby’s stay
this extra pressure stopped more than half of parents being with their baby as much as they wanted

Parents need to pay for things like additional travel, food and drink and ...

Ask the Government to protect families in neonatal care from the cost-of-living crisis in England

The rising cost of living is hitting families hard in England. In a survey by Bliss, the charity for babies born premature or sick, parents told us they:

spent an average of £405 per week while their baby was in hospital
lost an average of £3000 in missed income during their baby’s stay
this extra pressure stopped more than half of parents being with their baby as much as they wanted

Parents need to pay for things like additional travel, food and drink and childcare costs - essentials to help them be physically present at hospital every day.

Parents tell us they run down savings, borrow money and increase their debt to be at their baby's side.

Not everyone has access to savings or credit and as a result some babies will not see their parents every day because they cannot affort to be there.

That’s why we’re calling on the Government to protect families in neonatal care from the cost-of-living crisis.

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Dear Steve Barclay MP,

There are over 90,000 admissions of premature and sick babies to neonatal units in the UK every year. For their parents, the experience can be traumatic and life changing when instead of taking their baby home shortly after birth, they are admitted to a specialist hospital unit to receive care that ensures they have the best possible chance of survival and quality of life.

How long a baby will stay in neonatal care can vary, from days to weeks or months. For some of these families, their only concern will be the care that their baby receives at this time, but for others, the trauma and anxiety is exacerbated by the high hidden costs associated with having a sick baby staying in a specialist neonatal unit.

According to the charity Bliss, the average additional cost that parents responding to a survey had to pay was £405 per week while their baby was in hospital, these costs arise from parents paying for travel to and from neonatal units daily, relying on high-cost food and drink available on site at hospitals, paying additional unaffordable childcare costs. These costs are compounded by lost income, as many parents need to take time off work while their child is unwell, on average parents have reported losing around £3000 in missed income during their baby’s stay.

In the UK, neonatal units seek to provide family centred care – an evidence-based model of care delivery that supports parents to be partners in care delivery and decision-making. This approach is linked to improved short-and long-term developmental outcomes for babies born premature or sick and embedding this approach is a national priority as identified by the Neonatal Critical Care Transformation Review (2019).

Maximising the benefits of this approach is reliant on parents being able to spend long, uninterrupted periods of time with their baby on the neonatal unit. But the costs associated with having a baby in neonatal care are high and prevent families from being involved as much as they need to be. This contributes to inequity in experience for families, and ultimately the level of parent-led care babies receives.

Parents are an essential part of their baby’s care-team, but these costs have a clear impact on their ability to be involved in their baby’s care, this is particularly true for parents already on a low income. More than half of parents told Bliss that their finances impacted their ability to be as involved as they wanted to be and the rising cost of living in the UK is increasing the financial pressure on parents with a baby in neonatal care. In Bliss’ research, parents with a low household income were much more likely to say that the hidden costs associated with neonatal care stopped them being with their baby as much as they wanted.

In Scotland, the Government has already acknowledged the inequality introduced into neonatal care by the hidden costs parents experience by introducing a fund for families to claim back money for essentials such as travel and subsistence. An evaluation of this scheme found that parents reported that the fund relieved financial anxieties during a very stressful period, and helped them spend more time with their babies in the neonatal unit as a result of being able to claim

I want to urge you to introduce a scheme like this in England to ensure that parents do not need to choose between debt or being with their baby and to ensure no family is pushed into poverty by the rising cost of living. I would also ask you to look at extending the NHS Healthcare Travel Costs scheme to parents with a baby in neonatal care.

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