Hidden costs of neonatal care

A closeup of a sleeping baby's upper body and head lying in an incubator, with a parent's hand gently placed on their head

While NHS services are free at the point of use, this does not mean that there are no financial implications of accessing services. Neonatal care for babies born premature or sick is no exception.

The issue

Hidden costs introduce inequity in family experience and in the care that babies receive, as they are unable to receive the same level of parent-led care.

Parents being partners in care delivery and decision-making improves outcomes for babies, 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.

What have we been up to?

The issue of hidden costs comes up time and again in our conversations with parents.

Parents we surveyed in 2022 paid £405 in additional weekly costs 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.
Parents also told us that on average they lose around £3000 in lost income during their baby’s stay.

Financial support for parents is a priority for our influencing in Parliament. We're asking the Government to introduce a neonatal expenses fund to support parents with travel, childcare and subsistence costs.

In June 2023, we hosted a webinar about the costs facing families, aimed at healthcare professionals, exploring the impact of financial barriers to families when their baby is in neonatal care and the impact the cost-of-living crisis has had on staff too.

I’m worried the house isn't warm enough for her, about the fuel costs of attending many appointments and about the cost of electricity for all the monitors and equipment she has.

Mother of a premature baby with chronic lung disease

What are we doing next?

Travel is the biggest cost, on average, for parents with a baby or babies in neonatal care.

Our 2022 survey found that despite spending more on travel, parents using public transport are more likely to have a household income of less than £25,000.

Therefore, we’re keen to influence policy to expand the Healthcare Travel Costs Scheme to include parents who have a baby in neonatal care.

How can you get involved?

In addition to getting involved with actions for our accommodation campaign, aiming to tackle a variety of hidden costs, you can sign-up to our monthly campaign newsletter to be the first to hear about involvement opportunities.

To take immediate action, you can write to your MP to raise the issue of hidden costs of neonatal care with the Government. You can do this by using WriteToThem. You can include a link to our Cost Of Living briefing (download below).