Our latest report shares stories of families crushed under pandemic pressure while caring for a life-threatened child

The immense pressures on families caring for a life-threatened or terminally ill child during the COVID-19 pandemic are revealed in our new report launching today.

Pandemic Pressures - The struggles and resilience of families caring for a seriously ill child, highlights through a survey and powerful family testimonies how COVID-19 has caused vast new emotional and practical pressures on families already facing a high degree of stress and anxiety over the health of their child.

At the start of lockdown we conducted a survey of the families we support.* Just under 80% of respondents said that their family situation was worse or much worse than before. Nearly 60% said that their mental health was either ‘worse’ or ‘much worse’ than before the pandemic.

The report illustrates that restrictions on hospital visiting and loss of support has been particularly difficult for families where a baby or child has an acutely life-threatening condition. It also highlights how parents and siblings bereaved during the pandemic have not been able to grieve as they would have wanted.

The report features experiences from parents like Kelly, from West Sussex, whose baby, Kaia, who was born 14 weeks early just before national lockdown. The last seven months have been extremely stressful, made significantly worse due to COVID-19 restrictions.

At eight day’s old Kaia’s condition was so serious she was moved to Southampton Hospital, 50 miles from the family’s home. With no driving license and hospital accommodation for parents closed, Kelly had to endure four desperate weeks apart from Kaia whilst her tiny baby underwent two emergency bowel operations.

It was only when the hospital referred Kelly to Rainbow Trust that she was able to visit Kaia as her Family Support Worker drove her the 100-mile round trip once a week.

“She was an absolute life-saver, she was amazing. Without Rainbow Trust I wouldn’t have been able to see Kaia”

However, Kelly still had to visit on her own due to visitor restrictions, leaving her husband and three other children at home. She said:

“To go through it on my own was really hard. To see Kaia in intensive care on a ventilator, incredibly swollen, cannulas and wires everywhere... I didn’t even know how to touch her. Going through all that and not having my husband next to me was horrendous. I absolutely hated every minute of it.”

With further major bowel surgery facing Kaia in December, Kelly is feeling immensely anxious;

“If the same pandemic restrictions are still in place in December, my worry is that I don’t think I can go through it all on my own again.
“I’m not sure how I kept my head above water the first time. Mentally it was a massive strain. COVID-19 has made it incredibly difficult and a much lonelier journey than it ever should be. We watched the government briefings and nothing was ever mentioned about parents with babies in neonatal care - we’ve been forgotten about.”

Parents of seriously ill children, like Kelly, are having to rely heavily on charities to provide urgent practical and emotional support during the pandemic. Our report is therefore calling on Matt Hancock, Secretary of State for Health and Social Care, to urgently address the long-standing gap in funding for this vital support to benefit families at a time of great anxiety when they need it more than ever.

Zillah Bingley, our Chief Executive says:

“The pandemic continues to be a lonely and distressing experience for many families supported by Rainbow Trust who are caring for a life-threatened child. It is vital that the experiences of these families are heard by decision-makers which our report aims to do, so that they can help shape and improve the services required during this challenging, exhausting and frightening time.”

To read the full report visit rainbowtrust.org.uk//PandemicPressures.

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