Baroness Grey-Thompson:

Moved by Baroness Grey-Thompson

97: After Clause 26, insert the following new Clause—“Serious childhood illness pay and leaveThe Secretary of State must, by regulations made by statutory instrument subject to the affirmative resolution procedure, amend section 171ZZ16 (entitlement) of the Social Security Contributions and Benefits Act 1992 and section 80EF (neonatal care leave) of the Employment Rights Act 1996 so that the provisions in those sections extend to parents caring for a child up to the age of 16.”Member's explanatory statementThis Amendment introduces a right for parents to be absent from work for a prescribed period, and to be paid during that period at a prescribed rate, to care for a child between the ages of 29 days and 16 years who is receiving, or has received, specified types of medical or palliative care.

My Lords, I will speak to Amendment 97 in my name. First, I thank the Ministers for taking the time to meet to discuss this important matter, and specifically the noble Lord, Lord Katz, and his team, for meeting over the weekend.

This is a simple amendment about protecting the families of sick children. It is being called Hugh’s law. Hugh died of cancer at the age of six. His name is now etched into this amendment, not as a symbol but as a legacy. I would like to thank Hugh’s parents, Ceri and Frances, for being here again today. They are sitting in the Gallery, as they did in Committee.

Since Hugh’s death, his parents have devoted their lives to ensuring that no other family has to endure the trauma of watching their child suffer through endless treatments, sleeping on hospital floors with their life on pause, and without financial protection, job security or peace of mind. I cannot imagine anything worse than watching your child die and having to make the choice between being with them or potentially losing your home. This is an important time not just for parents but for siblings. I know that my noble friend Lady Finlay of Llandaff, who is unfortunately not able to be in her place today as she is attending a funeral, would have wanted to talk about the trauma and impact on the wider family situation.

In the time it will take us to complete this stage of the Bill, more than 1,000 parents across the UK will be told that their child has a life-threatening illness. Some will be in hospital for weeks; others, tragically, will never leave. Unlike most of us here today, Hugh’s parents do not have to imagine that moment; they have lived it. They know the unbearable fear, the crushing helplessness, and the impossible choice between work and being at their child’s bedside. They are campaigning for this because they know that the current system fails these families. It leaves them exposed, unsupported and forgotten by a framework that recognises the needs of newborns but not of children like Hugh, who were older than 29 days when they fell ill.

This amendment is not radical; it is reasonable and humane. It offers up to 12 weeks’ paid leave for parents of a critically ill child who is over 29 days old. That is all, and it is long overdue. At present, no parent is entitled to any financial support in the first 90 days of their child’s illness. After 90 days, they can apply for Disability Living Allowance, which would help with the costs of caring for their sick child; but even then, successful DLA applications can take up to 20 weeks to be approved. Of the families surveyed by It’s Never You, 90% believed that immediate financial support would have made a critical difference to the hardships they faced following their child’s diagnosis and treatment.

This amendment seeks to build on important progress made through the Neonatal Care (Leave and Pay) Act 2023, which was only meant to be a starting point. Under that Act, eligible parents of babies admitted to neonatal care within the first 28 days of life who require a hospital stay of seven continuous days or more are now entitled to up to 12 weeks of statutory leave with pay. This leave is in addition to existing maternity and paternity entitlements.

The noble Baroness, Lady Merron, previously stated:

“No parent should have to choose between being with their vulnerable newborn or returning to work … We are giving parents peace of mind so they can focus on their family”.

This amendment aims to do just that. It prevents parents having to make the impossible choice between their child’s health and employment. Instead, it provides the financial support necessary to vulnerable parents in devastating situations. I beg to move.

My Lords, I rise briefly to offer the strongest possible Green support for this Amendment, and the support of many others who cannot be here today. The noble Baroness, Lady Grey-Thompson, has outlined the reasons for this amendment very clearly, and I am just going to make a couple of additional points.

In many cases, the ability of parents to be at their child’s bedside acting as an advocate is crucial to ensuring that the child gets the best possible medical treatment. There is a profound inequality here if financial circumstances prevent parents being at the bedside, giving doctors and other carers information about their child’s health and the child themselves.

This amendment would also enable the parent to maintain contact with the workplace. Rather than having to give up their job and deal with the mess later, there would be a continuing relationship that would hopefully work out for the best if the child comes home and things go back to something like normal.

I join the noble Baroness, Lady Grey-Thompson, in paying huge tribute to Ceri and Frances for the campaign they have run for Hugh’s law. As the noble Baroness said, this is very much a legacy. I have to say that I am very surprised, because this week the Government responded to a final plea to back it. I hope the Minister may be about to stand up and offer something different, but the email suggested that that is not what we are going to hear today.

The briefing from the Hugh’s law charity points out that, with GoFundMe, people have to appeal to the public to fund their support for their sick child, meaning that they have to expose their suffering and pain. Unless funds are strictly designated to pay for medical treatment, the parents are then not eligible for any of the later government assistance that the noble Baroness set out, such as universal credit. If they have money from the public to support them, that cuts off government support. That is not covered in this amendment but is something that the Government should look at to make sure that, if a family in deep distress receives donations, that should not stop them getting other support.

With those comments, I strongly support the amendment of the noble Baroness, Lady Grey-Thompson, and I know that many other Peers will, so I hope that we might hear something positive from the Government.

My Lords, I intervene briefly to thank the noble Baroness, Lady Grey-Thompson, for introducing the Amendment. Anyone who heard the interview on Radio 4 this morning could not but have been moved by the circumstances that are the background to the amendment.

I speak as one who had the experience of losing two young children. At the age of two and three, our children, Alun and Geraint, were diagnosed with a life-terminating condition. It was the week in which the 1974 election had been called and my wife and I had to decide whether I should remain working in industry at Hoover in Merthyr Tydfil or to stand. The question was how on earth we were going to face the circumstances in which both our boys would live perhaps for five, 10 or 15 years, but one thing was certain: both my wife and I could not continue to work. Caring for two boys who had learning disabilities and were gradually able to walk less and less, until they could not walk at all, was an emotional as well as a physical and, potentially, a financial challenge, which is where the amendment is relevant.

We were unlucky, and the unluckiness was double, as I have described. My wife was also expecting our third child at the time and we did not know whether that child would be affected by this condition. Standing for election and being elected to represent Caernarfon in the House of Commons meant a 30% reduction in my salary. My wife, who was a professional musician—a harpist—would not be able to continue her career thereafter and would lose her earnings altogether. Had it not been for the availability of the then mobility allowance and attendance allowance, both of which it was possible to get at the highest level for both children, we would not have been able to employ someone to help us in order to give my wife some relief while I was down in London doing my work here.

That situation continued. We had two other children, our daughter Eluned, who was born in the June following that February—she was all right and was not affected by the condition—and our son Hywel, who was born two years later, was not affected by it. So we were blessed by having two children who were not affected. But we saw what the reality could be of the financial pressures that come from that double disability. If it had not been for my parents living next door—my father had just retired, on a good pension—we could not have survived. We were subsidised by my parents, who were retired and in their 60s, and, putting that together with the attendance allowance and the mobility allowance, we could eke the money out and make things practical.

I am telling your Lordships this by way of background—it is not something that I talk about very often in this House, but it is directly relevant to this amendment. There are countless families who face these circumstances without having the support that we were lucky enough to get. I am sure that people of all parties, across the House, want to build a system whereby no parents are put in a position where they cannot look after their child and keep enough money coming in to eke things out. I support the amendment and thank the noble Baroness, Lady Grey-Thompson, for bringing it forward. I wish the family who have been the motivation for this amendment every strength in the challenges that they face.

My Lords, I can add very little to what has been said, particularly by the noble Lord, Lord Wigley. I know that this House will be grateful to him for sharing a painful story. I took the Neonatal Care (Leave and Pay) Act 2023 through your Lordships’ House. It was a real honour to do so. As I have said, when I met the parents who were campaigning, they were not asking for the world—they appreciated the fact that businesses needed us to be proportionate as policymakers. Equally, they made a powerful case for the difference that that Act would make. I am hugely grateful to the noble Baroness, Lady Grey-Thompson, for building on that Act, and to Hugh’s family for their briefing and campaigning. I assure her of my support in the Lobby tonight.

My Lords, I support the Amendment of the noble Baroness, Lady Grey-Thompson. I confess that at the beginning I was a little sceptical, not so much about the amendment but about the issue that the Government and every previous Government have faced of trying to control the benefits bill. It is not easy and, as this Government have just discovered, trying to remove two existing benefits has proved incredibly difficult. We are trying to reduce the percentage of our GDP that we spend and it is not easy if we cannot control benefits. The winter fuel payment and the disability payments have proved just how challenging this is.

However, the amendment has my support because, as the noble Lord, Lord Wigley, has explained very plainly, of the impact that this situation has on families, probably more on middle-income families who have less in savings than on other people. It is a relatively small amount of money—at £187, it is not a massive amount—but it could make a real difference to people who are already in the distressing situation of trying to care for their family while a child is in hospital. The total cost to the Exchequer is around £6 million to £8 million—it does not run into billions of pounds. It is something that we and the Government could support. The amendment certainly has my support in this change to help parents at a time that they most need it and when a child most needs it, too.

My Lords, it is a pleasure to follow my good friend, and I pay tribute to the noble Baroness, Lady Grey-Thompson, for bringing forward this Amendment, which I proudly support. I am sure that I speak for everyone in the Chamber in thanking the noble Lord, Lord Wigley, for sharing his experience in an unbelievably emotional and powerful speech.

There has been much debate of late, as we have heard today, about the size and scale of the welfare state. There needs to be reform, as I think everyone accepts. The welfare state should be tough—indeed, it should be tougher—but it must also be compassionate to those who need it. I have not had direct experience and cannot comprehend the pain and agony of people who have been told that their children are seriously ill and require palliative care. There is then the impossible decision, as the noble Baroness said, of what to do about work. My noble friend Lady Wyld talked about the work she did, as we all did, and the amazing advances in neonatal care. This proposal is the next logical step —it builds on what we have already done.

The campaign group It’s Never You has done research highlighting the impact on parents and children: almost 90% of parents had to reduce their working hours or leave employment, and almost 80% noted the understandable effects on their mental health. Many studies link a pro-family environment with benefits not only to families but to businesses by contributing to high employee satisfaction, reduced turnover and increased productivity.

I know that there are those who have concerns about the growing size of the state. While this amendment is noble in itself, there are three other things to consider for those who may perceive it to be yet another endless cost among many. One is that the provision should be time-limited, considering a specific period in a poor family’s life. Secondly, it should be tightly defined to cover only up to a certain age limit, and specific care. Thirdly, and crucially, as has already been said, it is for those who cannot afford not to work, who will working and contributing again when the time is right.

As the noble Baroness said, this proposal stems from the tragic case of a young boy called Hugh who, sadly, died at the age of six from a rare form of cancer. This amendment is thanks to his remarkable and in many ways heroic parents and their family, who have campaigned and gained such support across the country. Alas, as has been noted, since Committee hundreds of families will have been given the ghastly news about their children and suffered their own agony and pain.

I say respectfully to the Minister—and his words at a previous stage were very warm—that I hope that tonight, collectively, with the Government, we can come to a conclusion and find a way forward so that every family that faces this unthinkable choice finds that, finally, the state is on their side.

My Lords, I want to thank the noble Baroness, Lady Grey- Thompson, for introducing this Amendment. I also want to thank the noble Lord, Lord Wigley, for the very powerful personal testimony he has given in this House. It is never easy; there is nothing more difficult for any parent than to walk the pathway of the serious illness or death of a child. In fact, at best it is often a very lonely pathway that lasts not simply until the time of the child’s passing, but for many years after.

This is a very compassionate amendment, and I trust that the House will support it. I am happy to support it if the noble Baroness puts it to a vote.

My Lords, I speak for these Benches in support of Amendment 97 from the noble Baroness, Lady Grey-Thompson. Noble Lords will remember that it was regrouped, and I referred to it in an earlier debate, as so many of these issues are interlinked. Rightly, it introduces a right for parents to take paid leave

“to care for a child between the ages of 29 days and 16 years who is receiving … specified types of medical or palliative care”.

The amendment is a valuable addition that recognises the significant demands placed on families caring for seriously ill children. I was amazed when I discovered that our Laws provide only for parents of babies under 28 days via the neonatal care Act.

I found the speech of the noble Lord, Lord Wigley, very moving, and I thank him for sharing that sad history with us. This is a sad history, and we are just trying to put right the problems in some way. It has been referred to as Hugh’s law, after the child diagnosed with cancer, and I think that is how many of us will remember it.

Amendment 97 would close the gap and create a stand-alone entitlement, modelled on neonatal leave, to ensure that no parent is forced to choose between their child and their livelihood. The proposal, according to figures I have, would cost between just £6 million and £7 million a year, yet the difference it would make to families in crisis is immeasurable. It is targeted and reasonable, and it is a compassionate step forward to protect some of the most vulnerable working families in the UK. It is a positive and complementary amendment, and I commend it to the House.

My Lords, I thank all noble Lords for their thoughtful contributions to this important debate. We are very grateful to the noble Baroness, Lady Grey-Thompson, for having raised what is a profoundly important issue, one that deserves very careful consideration by your Lordships’ House.

As my noble friend Lord Wigley reminded us, serious childhood illness places unimaginable strain on families, and it is not just a case of emotional turmoil. There are so many practical challenges as well, including hospital visits, overnight stays, unexpected emergencies and a need for sustained and focused care that no working parent can possibly schedule around.

I am pleased to say that many good employers already recognise this: in the most extreme circumstances, they show compassion and flexibility, ensuring that parents are not forced to choose between caring for a seriously ill child and retaining their job. At the heart of this is not only compassion but continuity. A child battling serious illness often requires a parent at their side, not occasionally but consistently. Without job protection and some form of financial support, the very people whom we would expect to be there—parents—may find themselves unable to be so.

Of course, any new entitlement must be, as the noble Lord, Lord Hogan-Howe, reminded us, designed carefully, with due attention to cost, clarity and implementation. Whereas on these Benches we do not take a fixed position on the Amendment itself, I welcome the fact that it prompts us to engage seriously with a difficult but crucial area of employment and social policy.

I thank all those who have contributed to this important debate, and I hope that the Government will take from it not only a recognition of the challenge but a willingness to explore how it might be best addressed in law.

My Lords, this has been a powerful debate on Amendment 97, which seeks to introduce financial support and leave for the parents of seriously ill children, and I thank all noble Lords who participated in it. I pay particular tribute to the noble Lord, Lord Wigley, for sharing his painful and very personal story. It is clear that, even after a fair number of not just years but decades, the indelible mark of the pain that he and his partner and the rest of his family went through is still with him. On behalf of the whole House, I thank him for sharing that story.

I begin by thanking the noble Baroness, Lady Grey-Thompson, for bringing this extremely important issue to the attention of your Lordships’ House. I pay tribute, as, I am sure, does every noble Lord who has spoken in this debate, to the excellent work done by Ceri and Frances Menai-Davis and their charity, It’s Never You, which provides vital support to the parents of seriously ill children. Ceri and Frances set up this charity in memory of their late son, Hugh, who died tragically in 2021 after battling a rare form of cancer. It’s Never You has worked with the noble Baroness, Lady Grey-Thompson, to draft this amendment, and I know that Ceri and Frances have campaigned hard on this proposal to honour the memory of their son Hugh and to provide support to parents who face the same tragic circumstances that they did.

It is of course vital that parents be able to spend time at the bedside of their sick child without the fear of loss of employment or financial difficulties adding to a situation that can already be mentally overwhelming, isolating or physically draining, as the noble Baroness, Lady Grey-Thompson, set out so well. One can only imagine the trauma of being in such a terrible situation. I say that one can imagine, but perhaps one can never really fully understand unless one is in that situation.

I know that this challenge has been raised previously in your Lordships’ House and in the other place, and I want to emphasise that the Government are keen to continue to look at the issue with the noble Baroness, Lady Grey-Thompson, and It’s Never You. As the noble Baroness said, I have personally met Ceri and Frances several times already, and I have been struck by their selfless determination and resolve to provide for other parents what they did not have. We intend to continue this engagement. I want to ensure that parents of sick children are not ignored or left behind.

However, we do not believe that incorporating this amendment into the Bill would achieve this end, despite the very best of intentions with which it has been prepared. I will highlight three reasons for this.

First, we are concerned about the approach of amending the Neonatal Care (Leave and Pay) Act, which was taken through your Lordships’ House by the noble Baroness, Lady Wyld, as she set out a moment ago. Although the amendment rightly seeks to provide much-needed care to older children, it risks unintentionally undermining some fundamental principles of neonatal leave and pay, which were designed with the specific situation of newborns requiring medical care in mind. Much of the eligibility criteria for the leave and pay entitlements in the existing Act, for example, are connected to birth-related forms of leave, such as maternity and paternity, that simply would not apply to parents of other children. Similarly, the specific definition of “neonatal care” in the current Act has been carefully constructed through extensive consultation. Again, this amendment would require that to be overhauled, risking creating a gap in existing support.

Secondly, more detailed analysis is required to fully understand the total cost implications of this proposal. We need to understand how many parents may be eligible for support across England, Wales and Scotland, as well as the estimated take-up, familiarisation and business costs. Initially, external estimates suggest that the cost of this amendment could be in the low millions—the noble Lords, Lord Palmer and Lord Hogan-Howe, referred to that specifically—based on data from England only. However, those figures are likely to represent only a small proportion of all parents who may be eligible for support. The actual cost could be significantly higher, depending on how serious illness and other eligibility criteria are defined. Therefore, the overall financial impact will depend on the final definitions and scope used to determine eligibility.

Thirdly, it is also right that the Government consider other suggestions of support that have been put forward by parents who are put in this incredibly challenging and difficult situation, such as the right to a career break to enable parents to take an extended period of time out of work to provide care for a seriously ill child, as has been highlighted by Conservative MP Mark Francois in the other place and his constituent Christina Harris. It is right that the Government explore all proposals before proceeding to legislate in order to ensure good law—indeed, a workable law—and the very best outcome for parents, which I think we all, across the House, agree is needed.

The Government appreciate that there is a significant challenge to be addressed here, but more work needs to be done to understand the best approach and costs of tackling it. For instance, the noble Baroness, Lady Bennett of Manor Castle, raised GoFundMe and the way successful fundraising campaigns interact with the benefits system. That is undoubtedly an area that needs to be understood.

As the noble Lords, Lord Hogan-Howe and Lord Hunt of Wirral, said, we need to understand the costs, and to have clarity and full consideration. More work needs to be done to understand the best approach and the costs of tackling this issue and addressing it properly. However, I want to be very clear that we are listening, and I have been moved—as we all have—to hear of the distress caused by the incredibly challenging situation of serious childhood illness and the financial strain that comes with caring for a sick child.

The noble Lord, Lord Gascoigne, asked for a way forward, and I hope noble Lords will take what I am about to say in the spirit intended. I make a commitment to the noble Baroness, Lady Grey-Thompson, and to Ceri, Frances and It’s Never You, that we will consult on support for parents of seriously ill children, including the proposal for Hugh’s law, to gain views from all interested parties on the specifics of the support. We are doing this at pace—the consultation will run next year in 2026. We wish to continue working with It’s Never You, the noble Baroness and all noble Lords who are interested—having heard the debate this evening and the strength of opinion across the House—on this extremely important matter, as we further explore this proposal.

It is appropriate that we consult publicly and provide space to hear a range of views to ensure that we arrive at the most appropriate policy outcome. We want to do something that is right. We want to make sure we have a solution that sticks, is workable, and provides the support that so many parents need—indeed, that Ceri and Frances needed but did not have. It is important that we do not rush into it but have a considered approach. I therefore ask, while we undertake this consultation, that the noble Baroness withdraws Amendment 97.

My Lords, I thank all those who have contributed to the debate this evening and, very specifically, the noble Lord, Lord Wigley, for sharing his deeply personal and moving experience. What we sought to achieve with the Amendment has been discussed at length. I appreciate that, but it was over many meetings. We asked several weeks ago for guidance if there were technical concerns. We got a response yesterday, which was very helpful, but I note that there is no indication within it that the amendment is inoperable, nor that these concerns could not be dealt with through the offer of a tidying-up amendment or, potentially, an alternative text at Third Reading. I welcome the opportunity to continue to discuss this and I do not wish to delay the House any further, but I wish to test the opinion of the House.

Ayes 100, Noes 136.

Amendment 97 disagreed.