Contribution
My Lords, Amendment 90 in my name and that of the noble Baroness, Lady Bennett of Manor Castle, seeks to require the Secretary of State to report to Parliament on the barriers preventing parents of critically ill children being by their bedside.
I have been working with Ceri and Frances Menai-Davis for around a year. After their son Hugh passed away, they could have stepped back. Instead, they made a conscious decision to stand up and try to change the lives of other families. They are in the south-west Gallery today, as they have been for previous debates. They have turned the most devastating personal loss into a determination to make sure that other parents are not left to face the same failures that they experienced.
When Hugh died in 2021, Ceri and Frances left the hospital at 11.30 pm. When the doors closed behind them, Hugh was still in there, and suddenly they were out of the system. They stood outside with their bags, trying to work out how they could carry on. They had a three year-old child at home whom they had not seen for three weeks. There was no transport, which they did not expect, and they took an hour and a half taxi ride home in silence while the driver chatted about football and the weather, unaware that their world had just collapsed.
When they walked through their front door, everything was still there: toys, unfinished drawings and the remains of Hugh’s birthday cake still in the kitchen. The pain was unbearable. They woke the next morning and sat in silence. Then, Hugh’s younger brother, Raife, woke up, who they had not seen in three weeks, and said, “Where’s Hughie?” There was no guidance and no support, and they had to do what no other parent should ever have to do: look online.
Ceri tried to access mental health support, but no one could help. The GP was unaware of their situation and just offered sleeping pills. Charities said that there was a 12-week wait. Ceri has been very clear with me that he simply would not have survived 12 weeks without immediate support. By chance, he was introduced to a trauma clinic, and it literally saved his life. The GP and the community team never called; the family were literally on their own.
This experience is not rare. Research consistently shows that between 30% and 50% of parents of critically ill children meet the diagnostic threshold for PTSD, with symptoms beginning at, or shortly after, diagnosis, not years later. Studies show that mothers of seriously ill children face around a 50% increased risk of early death, driven by prolonged stress, cardiovascular strain and mental health deterioration. Fathers face significantly elevated risks, including higher rates of depression, substance misuse and suicide, yet are even less likely to be able to access support. Siblings—the forgotten children; the children not in the hospital bed—are often the most overlooked of all. Research indicates that they are up to three times more likely to experience long-term emotional or behavioural difficulties, including anxiety, depression and post-traumatic stress symptoms.
Despite these known risks, the NHS does not wrap its arms around these families. Instead, families are signposted to charities—charities that are themselves underfunded, overstretched and increasingly unable to fill the gaps left by statutory services. There is no consistent proactive pathway where a family is treated as a unit when a child receives a serious or terminal diagnosis. This stands in stark contrast to the support available for families with babies with a terminal diagnosis.
The amendment does not seek to assign blame for what has happened in the past. It does not mandate immediate spending or prescribe a single solution. What it asks for is something far more basic and overdue: it asks the Government to undertake a systematic review of how parents, siblings and families are supported when a child is critically ill or dies: from diagnosis, through treatment and, when it happens, into bereavement.
The amendment mentions
“preventing parents … from being by their children’s bedsides”,
but that does not have to be solely a physical presence. All too often, this means parents being mentally and emotionally available and present for their child. It seeks to ask why support is reactive rather than proactive; why mental health screening is not routine and moved into the community, with GPs and community nurses providing a unified effort to support these parents; why siblings remain invisible; and why families so often fall into the gaps between services. This is about understanding what works, where best practice already exists and how we can ensure that families are not abandoned at the point when they need support the most.
Just over two months ago, Ceri walked from the hospital where Hugh passed away to Downing Street, where he placed Hugh’s shoes on the steps of No. 10 —over 105 kilometres in two days. He carried a 20-kilogram rucksack on his back to signify the weight Hugh was when he died. He did this to signify the weight that parents carry when their child is diagnosed with a serious illness: a weight that most of us will never know or, thankfully, experience.
The amendment is about recognising that a child’s well-being cannot be separated from the well-being of their family. It is about making sure that no parent ever again has to walk out of hospital into the darkest moments of their lives and find that the system they relied on has simply disappeared. I beg to move.