Parents Matter: a new report on mental health support for parents of a seriously ill child

When a child is seriously ill, parents can experience extreme stress and anxiety, often for many months or years. Our new report, Parents Matter - The impact on parents’ mental health when a child has a life-threatening illness, shares parents’ stories of managing their mental health, and their advice to other parents in the same situation. 

Feelings of isolation, depression and anxiety are common. The report is backed by father Adam Proops, whose two-year-old daughter Iris died of cancer in October 2010. Adam is keen to raise awareness and eradicate mental health taboos when caring for a life-threatened child. Adam said:

After Iris died, I was hit by a deep depression and I was in a very low place. I remember one morning I sat on a park bench for several hours, unable to move or go into work. Suicide is the biggest killer of middle-aged men. Nothing that dark ever crossed my mind, but I was feeling hopeless.
I think a lot of men struggle to talk about their emotions and admit they are finding it hard to cope. But I learnt there is no shame in needing mental health support and the key for any parent going through this nightmare is to be able to seek help.”

Our report sets out how regular practical and emotional support can help parents develop their own coping strategies by providing regular time off from caring and by easing the burden on the family as a whole. In the last 18 months, more than a fifth, 22%, of families referred to us had mental health concerns cited as a reason for needing support.

The report encourages everyone to be aware of parents’ mental health needs when a child has a life-threatening or terminal condition. It provides a checklist for health and social care professionals to follow when working with parents of a seriously ill child, as well as parents’ tips for other parents in the same situation.

In a recent survey of 2,002 parents with a child under 18 shows that half of parents (51%) believe the greatest impact on their mental health would be their child dying or being diagnosed with a terminal or life threatening illness. The survey also reveals that 65% of parents would have no idea how to cope if their child became seriously ill.

Zillah Bingley, Rainbow Trust Chief Executive, said:

It’s about time that parents of seriously ill children have access to the mental health support that they need.
“While mental health has been prioritised by NHS England over the next decade, parents with seriously ill children can struggle to get the right support at the right time. We know that the support Rainbow Trust provides parents with a seriously ill child is absolutely crucial, helping them when they are at their lowest.
“We urge health and social care commissioners to review their funding of family respite services, known as ‘Short Breaks’, to make sure that parents of seriously ill children can receive emotional and practical support at the most difficult of times.”

At Rainbow Trust, we currently receive no central government funding and get just 1.2% of our funding from Local Authority grants. Read our new report here.

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