Employment Rights Bill

Baroness Grey-Thompson Excerpts

Committee stage
Tuesday 13th May 2025 Lords Chamber

Finally, I thank Sarah, as a friend and a comrade, for entrusting me with carrying this amendment forward on her behalf in your Lordships’ House. She is an exceptional person, a brilliant MP and, I am glad to tell your Lordships, in the light of all her experiences, also a wonderful mother.

[Baroness Grey-Thompson (CB)]

My Lords, I rise to speak to Amendment 134, which is in my name and that of my noble friend Lady Finlay of Llandaff.

The aim of this amendment is simple but vital. It seeks to provide day one financial support for parents of children diagnosed with a serious or life-limiting illness. It would create a new statutory right for parents to take a period of paid leave from employment to care for their seriously ill child. This right would apply to parents of children aged between 29 days and 16 years old who are receiving or have received specified types of medical or palliative care. The duration of this leave, including rate of pay, would need to be set out in regulation.

This amendment is tabled in honour of a young boy named Hugh, who sadly lost his battle to rhabdomyosarcoma, a rare form of cancer, at just six years old. His parents, Ceri and Frances Menai-Davis founded the charity It’s Never You to help support the parents of children who have been diagnosed with serious illnesses. They have been campaigning for three years to change the law and are here in the Gallery tonight to listen to this debate.

Throughout Hugh’s treatment, Ceri and Frances saw first hand the immense challenges faced by parents—not just the emotional and physical strain of caring for a seriously ill child but the severe financial pressures that come with it. Each year, around 4,000 families in the UK spend two months or more in hospital with their child, who is undergoing treatment for a life-threatening illness. These parents are being forced to make the impossible choice of earning a living or being by their child’s bedside. The current system is leaving these families unsupported at the most vulnerable moment in their lives. Many are selling their homes, their clothes and turning to crowdfunding sites like GoFundMe just to cover basic living costs, which can go against them in any application for universal credit.

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 2023 Neonatal Care (Leave and Pay) Act. Under this Act, parents of babies admitted to neonatal care within the first 28 days of life and who require a hospital stay of seven continuous days or more, are now entitled to up to 12 weeks of statutory leave with pay for those eligible. This leave is also in addition to existing maternity or paternity entitlements.

Regarding these recent legislative changes, the Minister, the noble Baroness, Lady Merron, remarked:

“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.”


Considering this statement, I would like to ask the Minister just one question. The Government clearly recognise that no parent should be forced to have to make such choices between their child’s health and employment. So why are they so reluctant to provide essential financial support to those vulnerable parents who are in equally devastating situations?

[Lord Watson of Invergowrie (Lab)]

My Lords, I wish to speak to Amendment 77 on foster carers’ leave, and Amendments 78 and 79 on kinship carers’ leave. I congratulate the noble Lord, Lord Palmer, on bringing them forward.

Both types of carers, as the noble Lord said in tabling his amendments, provide a huge service by allowing children to remain in loving family settings, and both types will be the subject of wider consideration in the Children’s Wellbeing and Schools Bill. But today there is a need to ensure that the essential caring role they provide is acknowledged by making provision for them to have a right to leave, as do employees.

Foster carers at least receive fees and allowances, although a survey by The Fostering Network last year found that 32% of local authorities pay less than the national minimum allowance to their foster carers, and even those rates are out of date and fail to meet the costs of caring for a child. It is also essential that recognition be given to foster carers’ right to leave from work to enable them to respond to situations in the same way as birth parents are able to do.

There are over 150,000 children in kinship care in England, and yet there is a lack of understanding among the general public as to just what kinship care is and what it involves. It is any situation in which a child has been raised in the care of a friend or family member who is not their parent. The arrangement may be temporary, or it may be long term. Kinship carers need employment leave because they step up in times of crisis to provide love and care to children who may otherwise be sent to the care system—a situation that has often come about because of tragedy and/or trauma.

The period when the child moves in with a family can be difficult. They are likely to need a lot of support. Often, the carer has not planned to take on parenting responsibilities for one or more children, so they may have to spend time attending meetings with children’s services, being involved in court proceedings, finding a nursery or making arrangements with the child’s school and GP. Sometimes, children’s services place an expectation on kinship carers that they at least temporarily stop working, if they think it necessary to meet the needs of the child.

Whether the carer receives any local authority support, in a financial sense, in this situation is dependent on where the carer lives, the type of arrangement and whether the child is or was previously in the care system. More often than not, kinship carers become dependent on social security, which is simply not right or fair. Surveys by Family Rights Group have found that a third of working-age kinship carers are not in paid employment due to their caring responsibilities, and six in 10 kinship carers have to give up work or reduce their hours when the child comes to live with them.

The contrast between adoptive parents and foster carers is stark. Adopters are entitled to 52 weeks of leave and 39 weeks of pay to enable them to settle a child into their home. This is paid at 90% of average weekly earnings for the first six weeks, followed by a payment which currently stands at £184 a week for the next 33 weeks, and employers can usually reclaim almost all those costs. There is no equivalent employment leave entitlement or payment for kinship carers, but there should be. Amendment 78 would introduce significant steps towards that, because providing kinship carers with paid leave would provide families with financial security and lead to direct savings for the Treasury from kinship carers remaining in employment, reduced universal credit claims and greater tax revenues, not to mention wider social benefits from gains in children’s well-being and in GDP.

Foster carers and kinship carers do not simply provide a service to the children they look after: they provide a service to the Government by lessening the demands on children’s services and saving public expenditure. I very much hope that my noble friend will recognise this and give an assurance that she will bring forward a government amendment to right these very obvious wrongs around leave for foster carers and kinship carers, and recognise the vital service that they provide.

Employment Rights Bill

Baroness Grey-Thompson Excerpts

Report stage
Wednesday 16th July 2025 Lords Chamber

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 statement
This 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.

[Baroness Grey-Thompson (CB)]

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.

--- Later in debate ---

[Lord Katz (Lab)]

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.

[Baroness Grey-Thompson (CB)]

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.