We cannot ignore family wellbeing any longer

Together for Short Lives received a call to our helpline from a mother in a desperate state. She was shielding at home, as a single parent with three children. Her daughter had a life-limiting condition and very complex needs, which required round the clock attention and support. She was sleep deprived and awaiting assessment for Universal Credit. She only had a few pence left in her purse. She was emotionally and physically shattered – perpetually anxious about her sick child’s fragile health and the well-being of her other children in equal measure.

While shocking and heart breaking, this is not an uncommon story for parents of seriously ill children. Sure, there are some pandemic impacts here. Shielding and homeschooling undoubtedly exacerbate isolation from friends and family and many of the excellent local services they might rely on in more normal circumstances have had to change and adapt themselves.

But the truth is, in Britain in 2021, one of the most developed countries in the world, this is the day-to-day reality for many parents. They often tell us that caring for a seriously ill child brings many life-enriching joys and experiences that, however bittersweet, they would not change for anything. But they also tell us that caring round the clock is exhausting and lonely and takes a huge toll on the whole family.

It has serious longer term impacts too. Research from Professor Lorna Fraser et al from Martin House Research Centre at the University of York just published in the Archives of Disease in Childhood made stark and worrying reading. The study clearly demonstrates that the mothers of children with life-limiting illness are much more likely to develop serious physical and mental health problems. These women have significantly higher incidence of depression, anxiety and serious mental illness than other mothers. They also have significantly higher incidence of cardiovascular disease and hypertension.

All this means that the risk of premature death was more than 50% higher in this population of mothers. Let that sink in for a moment. Women caring for their own children who have, through a cruel twist of circumstance, a life-shortening illness. Women who, along with everything else they have to contend with, are more than 50% more likely to die themselves as a consequence.

This is absolutely not acceptable, nor is it unavoidable. As the study concludes “much of this excess morbidity may be preventable through proactive healthcare incorporating both primary and secondary prevention initiatives”. We can do something about this if we choose to prioritise it. With 24/7 acute and community healthcare in hospital, children’s hospice and at home. With properly planned and funded social care. With respite breaks and psycho-social support.

The Budget was an opportunity to begin to right this glaring and unjust health inequality. It was an opportunity missed. The needs of children and young people were barely referenced. There was no mention of the promised plan for social care, nor of how the NHS can recover post pandemic. 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.

It is clear that the impact of this pandemic will be felt for many years to come. But the reality is that seriously ill children and their families do not have time to wait for the economy to fully recover. They need their services to restart now, to have immediate access to sustainable 24/7 palliative care. If we fail to support them soon, more and more families will reach breaking point. In the short term, this will increase demand for emergency health and care. In the long term, it will leave an avoidable legacy of poor physical and mental health among parents and siblings which could have a devastating impact for years to come.