New research shows that mothers of children with life-limiting conditions are much more likely to develop serious physical and mental health problems and have a premature death, compared to mothers caring for children with no long-term health condition.
The research reveals stark findings, the risk of premature death for mothers of a child with a life-limiting condition was more than 50% higher compared to mothers with children with no long-term health condition. And mothers caring for a seriously ill child have a significantly higher incidence of depression, anxiety and serious mental illness, and physical conditions such as cardiovascular disease, type 2 diabetes, hypertension and obesity.
The research was developed by Professor Lorna Fraser and colleagues from the Martin House Research Centre at the University of York and was published in the Archives of Disease in Childhood last week. Earlier research from Professor Fraser shows that the number of children with life-limiting conditions has grown significantly over the last 20 years, rising to around 86,000 children in England alone. Many of these children will have very complex health conditions and need round the clock care.
Responding to the research, Lorna Cobbett, Mummy to triplets Roman, Essie and Eva said:
“The current system is broken, it is pushing all mothers, fathers and carers of children with life-limiting conditions to breaking point. It is a constant fight to get any support and help. Hearing “no” is relentless and it wears you down, it stops you fighting to hear a “yes”, which will give you time to make memories. We are living a daily life where the death of our child is imminent and expected. It places stress and strain on our mental health in a way you cannot imagine, nor do I ever want you to.
I saw this first-hand with my severely disabled daughter, Essie, who was diagnosed as life-limited at 11 days old and died aged 18 months. Essie didn’t sleep, as her epilepsy was so bad. She didn’t like the light; she liked the darkness. Sleep deprivation almost broke me, I didn’t sleep more than a few hours a night for the first nine months of her life.
Then we got a nurse for one night a week, it felt like heaven to get more than a few hours’ sleep in one night. But it wasn’t enough. I was almost pushed to breaking point and now, over three years after Essie’s death, I still have PTSD flashbacks about many things that I experienced, felt, and heard. I wish I could say that I’m surprised by the findings of my namesake’s research, but I’m not. I am forever broken by being a Mummy to my darling Essie, but I wouldn’t change my experience of loving her during life – and death – for anything.”
The current system is broken, it is pushing all mothers, fathers and carers of children with life-limiting conditions to breaking point. It is a constant fight to get any support and help.Lorna Cobbett, Mummy to triplets Roman, Essie and Eva
Reacting to the research, Together for Short Lives, the UK charity for seriously ill children and families, is calling for urgent action to improve support, social care and healthcare for families caring for seriously ill children, saying these stark adverse health outcomes are preventable with the right investment.
“Families often tell us that caring for a seriously ill child brings great joy and rich experiences that they would not change for anything. But they also tell us that caring round the clock is exhausting and takes a huge toll on the whole family,” says Andy Fletcher, CEO for Together for Short Lives.
“This important new research makes for stark and very concerning reading. Not only is it unacceptable that mothers face such devastating heath impacts in modern day Britain, it is also avoidable with the right care and support.
We need investment in 24/7 acute and community healthcare in hospital, children’s hospices and at home, and properly planned and funded social care. The Budget was a missed opportunity to begin to right this unjust health inequality. Yet, the needs of seriously ill children, young people and their families were barely referenced. There was no mention of the promised plan for social care, nor of how the NHS can recover post pandemic.
“We can and must change this. It has never been more important that the forthcoming Comprehensive Spending Review and the newly reformed NHS urgently prioritises the needs of this growing group of children and families.”
This important new research makes for stark and very concerning reading. Not only is it unacceptable that mothers face such devastating heath impacts in modern day Britain, it is also avoidable with the right care and support.Andy Fletcher, CEO for Together for Short Lives
Professor Lorna Fraser, Director of the Martin House Research Centre added:
“There is an expectation now, that parents of children with complex or life-limiting conditions become health care providers as well as parents, often 24 hours a day, seven days a week. This must have an impact on their health and wellbeing, as shown by this research study. Our health and social care system must be more flexible to support the needs of these parents and children.”