Soaring cost of living leaves parents of sick children fearful about running medical equipment

Posted on October 11, 2022


Bliss, the charity for babies born premature or sick, has made several emergency recommendations to the Government to minimise the impact that the soaring cost of living is having on families with a baby in neonatal care or who has recently been discharged from hospital.

The additional costs to households with a baby in neonatal care, including travel, food and childcare, can be a serious burden on families. In a survey conducted by Bliss in early 2022*, the average reported cost was £405 per week on top of usual expenditure.

In a recent survey**, half of parents with a baby currently in neonatal care said that the rising cost of living was impacting their ability to pay rent, bills, or mortgage and 84% said it had impacted their ability to pay for travel to and from the hospital.

More than half of survey respondents said that finances had an impact on their ability to be by their baby’s side, with around 1 in 5 saying that finances impacted their ability to be involved in their care “significantly”.

The problem doesn’t end when babies are discharged from hospital. Families caring for a child or a baby who is reliant on medical equipment – such as home oxygen - will use more energy on average to keep their equipment running.

There is a serious risk to the health of anyone who uses at-home medical equipment if they must reduce how much energy they are using, or if they can’t keep up with costs.

Similarly, babies who were born very premature or who were extremely unwell after birth can be more prone to serious complications from common colds or viruses, like Respiratory Syncytial Virus.

To help keep babies well it is important that they are kept warm – yet 3 in 4 respondents to Bliss’ survey said it was likely the cost of energy could stop them from keeping their home warm this winter.

Bliss has spoken to parents currently using at home medical equipment that requires electricity to run – they have said that the rising cost of energy and fuel prices are very concerning for their vulnerable babies heading into winter.

One parent said they will have to return to work early to afford rising costs. And half of the parents responding to our survey who needed to run medical equipment for their child, said they were concerned that the cost of energy may impact their ability to do so in the future.

"I'll probably go back to work early to cover the winter bills, which is incredibly sad when I already lost so much of my baby's first year to the NNU."

– Kathryn, mum to a premature baby

Caroline Lee-Davey, Chief Executive of Bliss, said “When a family's world is turned upside down by a neonatal admission the last thing they should be thinking about is how they are going to afford the fare to the hospital, or keep on top of their bills. Yet this is exactly what families across the UK face at one of the most challenging times of their lives.

“The current cost of living and energy crisis is adding to these existing pressures - both while babies are receiving neonatal care, and once they have been discharged home.

"These pressures will be felt most acutely by families who are already struggling to make ends meet.

“We know that for babies to have the very best outcomes, their parents must be supported to be partners in delivering their baby's care. Yet our findings show starkly how extra costs are a barrier to parents being as involved in care delivery and decision-making as they want to be.

“Bliss is urging the Government to act now to provide financial support to parents who need it, to ensure all babies get the best start in life, regardless of their parents’ financial position.”

Read the full report here

Bliss research

* In February and March 2022, Bliss conducted a survey with parents of babies who spent time in neonatal care looking at the barriers they experienced to being involved in their baby’s care. This was promoted through Bliss social media/newsletters and other charity organisations supporting parents of babies born premature or sick. This survey had 1930 responses.

** In September 2022, Bliss conducted a survey looking to understand the impact of the increasing cost of living crisis in the UK in Autumn 2022. This was promoted through Bliss social media and had 164 responses from families with a baby in neonatal care (N=32) and those whose baby has been discharged from hospital in the last year (N=127).