Children’s Wellbeing and Schools Bill

Baroness Grey-Thompson Excerpts

Wednesday 21st January 2026 Lords Chamber

Moved by

[Baroness Grey-Thompson]

90: After Clause 27, insert the following new Clause—
“Report: barriers to parental support in the care and wellbeing of critically ill children(1) Within twelve months of the passing of this Act, the Secretary of State must lay before each House of Parliament a report on the barriers preventing parents of critically ill children aged between 29 days and 16 years from being by their children’s bedsides during periods of hospital care and the impact and potential harms this has on children’s care, wellbeing and family life.(2) A report laid under subsection (1) must include assessments of—(a) the adequacy of existing measures in facilitating the care, wellbeing and family life of critically ill children aged between 29 days and 16 years by their parents,(b) the barriers facing parents of such children, including—(i) financial pressures,(ii) pressures arising from the parent’s existing or future employment commitments, and(iii) mental health difficulties,(c) options for providing additional support to the parents of such children during periods of hospital care, and(d) the impact such additional support would be likely to have on such children’s care, wellbeing and family life. (3) In preparing the report laid under subsection (1), the Secretary of State must consult—(a) parents of children who have received care in hospital for an extended period,(b) healthcare professionals, and(c) charities and civil society organisations offering support to parents of children receiving care in hospital.(4) In preparing a report laid under subsection (1), the Secretary of State must have regard to the UK’s international obligations, including under the United Nations Convention on the Rights of the Child adopted and opened for signature, ratification and accession by General Assembly resolution 44/25 of 20 November 1989.(5) A Minister of the Crown must within the period of 28 Commons sitting days beginning with the laying of a report under subsection (1) make arrangements for a debate on the report by the House of Commons.(6) A Minister of the Crown must within the period of 28 Lords sitting days beginning with the laying of a report under subsection (1) make arrangements for a debate on the report by the House of Lords.”Member’s explanatory statement
This amendment seeks to require the Secretary of State to report to Parliament on the barriers preventing parents of critically ill children aged between 29 days and 16 years from being by their bedside during periods of hospital care, including financial and workplace pressures, and mental health needs, and the impact this has on the child’s care, wellbeing and family life.

[Baroness Grey-Thompson (CB)]

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.

[Baroness Bennett of Manor Castle (GP)]

My Lords, I will speak extremely briefly, having signed the amendment so powerfully introduced and presented by the noble Baroness, Lady Grey-Thompson. I did so after having met Ceri and Frances. I saw that the amendment did not have a second name attached to it and thought that there needed to be a demonstration that there is broader support there. I have no doubt that many noble Lords will have been moved by what we have just heard and would absolutely agree that action is urgently needed. We need to assess the situation and come up with a plan to deal with it, so other families are not put in this situation. Happily, this is relatively rare, but some 3,000 families a year are placed in this situation and they must be supported. I hope that we will hear some positive words from the Minister.

Briefly, Amendment 99 has not yet been introduced, but it seeks to address another tragic situation, where, again and again, children are born and taken away, usually from the same mother. I spoke extensively on that in Committee, so I will not repeat it now.

This is an important group of amendments. I hope we can see some positive direction forward and a further demonstration in your Lordships’ House that campaigning, often by people who have suffered so much, can make a difference and improvements in our society.

--- Later in debate ---

[Baroness Grey-Thompson (CB)]

My Lords, I thank everyone who has taken part in the debate today. I will not seek to sum up because I know we have a heavy schedule of business, but I think I am right in saying that there has been universal support for the amendment, which shows the devastating impact that situations like this can have on families.

I want to place on record the immense bravery and resilience of Ceri and Frances for keeping going. I thank the noble Baroness, Lady Shawcross-Wolfson, for sharing her experience, and I thank the Minister in another place, Josh MacAlister, for the letter that I received when coming into the Chamber confirming that there will be a report on this issue.

I have a few things to mention. I am grateful that the wording and scope of the report, as mentioned by Minister MacAlister in his letter, is up for some discussion. We need to look at the point of diagnosis, as well as, when we are talking about families, making sure that we properly include siblings in that. I welcome the commitment in the letter to keep working with me, Frances and Ceri, alongside other experts. I hope the report he has agreed will be commissioned will be called Hugh’s report, and that we will be one step closer to making Hugh’s law actually happen.

Given the commitments received today from the Dispatch Box and in writing, I beg leave to withdraw the amendment.

Amendment 90 withdrawn.