Seriously Ill Children: Financial Support for Parents

Tuesday 25th March 2025 Westminster Hall

[Relevant document: e-petition 700285, Provide day 1 financial support to parents caring for a seriously ill child.]

17:54

[Christine Jardine (in the Chair)]

I will call Chris Hinchliff to move the motion, and I will then call the Minister to respond. As is the convention for 30-minute debates, there will not be an opportunity for the Member in charge to wind up.

[Chris Hinchliff (North East Hertfordshire) (Lab)]

I beg to move,

That this House has considered financial support for parents caring for seriously ill children.

It is a pleasure to speak under your chairship, Ms Jardine.

I begin by paying tribute to my constituents Ceri and Frances Menai-Davis, who are in the Public Gallery today. Their tireless advocacy, following the tragic loss of their six-year-old son Hugh to cancer in 2021, is an inspiration to me, and I know this feeling is shared by colleagues across the House.

Ceri, Frances and the charity they set up, It’s Never You, have highlighted the immense challenges faced by families caring for seriously ill children. When a child is born, there is a support system in place for parents. Maternity pay provides a safety net for those who must stop work to care for their child, and the Neonatal Care (Leave and Pay) Act 2023 covers the parents of babies who are admitted to neonatal care within 28 days of birth. However, if a child falls seriously ill outside those periods, parents must navigate burdensome and insufficient systems that were not designed for families facing what is, for most, the very hardest time of their lives.

Ceri and Frances experienced this unfairness at first hand during the 100-mile round trips they had to make to be with Hugh during his treatment. Thankfully, they were financially stable, but they witnessed the harsh reality of our benefits system as they saw other parents being forced to sell their homes and give up work to care for their seriously ill children. Of course, these issues are compounded by the cost of living pressures that all families face, even without family emergencies piling on.

Approximately 68% of women and 57% of men with mental health problems are parents, which highlights the emotional strain that families across the country already face. Last year, a quarter of parents with children aged 18 and under said they struggled to provide sufficient food for their children, and Shelter estimates that 1.7 million private renters do not have enough savings to pay their rent if they were to become unemployed.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Member for securing this debate, and I spoke to him beforehand. Charities such as the Family Fund provide a wide range of grants to families in Northern Ireland who are raising a disabled or seriously ill child or young adult on a low income, to spend on kitchen appliances—a fridge, a cooker or a washing machine—or clothing, bedding, sensory or play equipment, technology or just a much-needed family break.

Does the hon. Gentleman agree that the fact such charities are stepping in no way abdicates the Government’s responsibility to do more to help families when they need help? He is speaking about compassion. Compassionate action is what we need.

[Chris Hinchliff]

I agree that we should commend such charities. The hon. Gentleman shows moral clarity in rightly saying that the Government have an obligation to support families going through this incredibly difficult time.

Research shows that all the factors I have described mean that families are on a difficult footing even before facing the additional pressures of caring for a seriously ill child. When families need extra support during such challenging times, they are often met with bureaucratic hurdles that only add to their mental and financial stress. To access disability living allowance, parents face a 90-day waiting period, a daunting 40-page application form and long waits for responses. Universal credit and shared parental leave are unsuitable options for too many parents in this situation, as the rigid eligibility criteria mean that many parents of seriously ill children simply do not qualify.

[Dr Lauren Sullivan (Gravesham) (Lab)]

My constituent Vicky came to my constituency surgery and spoke about Hugh’s law and how she had to take time off to look after her son, who has thankfully recovered. Does my hon. Friend agree that the £750 grant would provide certainty and help parents, by stopping the rigmarole of going through universal credit and those sorts of things? Would the grant help?

[Chris Hinchliff]

I absolutely agree with my hon. Friend. I encourage the Minister to reflect on the fact that all the evidence we hear from It’s Never You shows that this very real problem is impacting families right across the country.

The systems that are in place were not designed to accommodate the urgent and unpredictable nature of childhood illness. Studies have shown that delays in financial support during critical life events significantly increase psychological stress and deepen financial instability. Research published in the Journal of Pediatric Psychology found that economic insecurity heightens parental stress, which can in turn hinder a family’s ability to provide the best possible care for their child.

[Alison Bennett (Mid Sussex) (LD)]

I thank the hon. Member for his excellent advocacy for Hugh’s law since his election to Parliament. I wholeheartedly agree with the campaign. Two families wrote to me in anticipation of this debate. One family’s child was diagnosed with stage 4 liver cancer at the age of just two. They were forced to drastically reduce their joint working hours so they could not only care for their sick child but also look after their other children. It is an enormous burden:

“No parent should face financial ruin while fighting for their child’s life.”

Does the hon. Member agree that day one support for these parents, as advocated by the Hugh’s law campaign, would be very welcome?

[Chris Hinchliff]

The hon. Lady eloquently highlights the importance of this campaign. I wholeheartedly agree with her.

The benefits system available to parents in these situations leaves a gaping hole for the families of seriously ill children, who find themselves with nowhere to turn, grappling with financial ruin, growing debt or the devastating thought of not being able to be at their child’s bedside when they are needed most. The British Journal of Social Work reports that families in medical crises without immediate financial support often face long-term debt, mental health struggles and career disruption, even after treatment ends.

[Chris Bloore (Redditch) (Lab)]

I thank my hon. Friend for securing this critical debate. He mentions the significant financial impact on families who are trying to make sure their children get the care they need. Statistics from Young Lives vs Cancer, and from my meetings with constituents in Redditch and the villages, show that some parents actually miss getting their children to appointments because of the financial challenges they face. This is not just about what happens to their long-term financial security; children are missing important appointments because their parents cannot afford to get them there.

[Chris Hinchliff]

I agree that the gaping hole in our benefits system is devastating for families. My hon. Friend once again highlights how incredibly important it is that the Government resolve this as a matter of urgency.

Over 80% of surveyed families experienced a significant decline in household finances due to their child’s illness. The core principle underpinning our welfare state is that nobody should have to consider their bank balance when faced with challenges not of their own making. Benefits exist to ensure that when life deals a cruel hand, its cost does not crush those who are already burdened. Instead, we share the responsibility across society, leaving nobody behind.

There is no group more deserving of support than families caring for seriously ill children. If, as a society, we fail to address this gap and spread the burden, we betray the very principle on which our welfare state was founded. Hugh’s law offers a straightforward solution to plug this gap, by providing immediate, non-means-tested financial support to parents of children diagnosed with life-threatening illnesses. It would provide a grant of £750 a month for up to three months, activated from the day of diagnosis. Eligibility would be limited to children diagnosed with life-threatening or chronic conditions requiring hospital care. Applications would be completed by the healthcare provider, cutting out needless stress for families and meaning no more 40-page forms.

There are examples of similar policies across the world, including in Sweden, France and Canada, where the employment insurance family caregiver benefit provides financial support to parents caring for a critically ill or injured child under 18 years old. Benefits are paid for up to 35 weeks, helping families to manage the financial strain while focusing on their child’s care. It is estimated that Hugh’s law would have an annual cost of just £6 million to £7 million and would support around 4,000 families annually.

To put that into context, the figure represents just 0.0025% of the Department for Work and Pensions’ 2023-24 budget. Given the unimaginable challenges these families face, caring for a seriously ill child while grappling with emotional strain, financial hardship and uncertainty, it is clear that the cost of such support is minuscule in comparison with the burden they carry. Life does not stop when a child gets sick. In fact, families often face higher day-to-day costs that impact them immediately—not in 90 days’ time, when support might become available.

Hugh’s law would offer much needed financial relief, allowing parents to focus on what matters most, being by their child’s side, without the crushing weight of financial anxiety. We have heard about the immense challenges faced by families caring for seriously ill children, which go beyond emotional strain to include financial hardship and bureaucratic obstacles. The tireless advocacy of Ceri and Frances, through their It’s Never You charity, has highlighted a gap in our welfare system that we simply cannot ignore.

Hugh’s law offers a practical and compassionate solution: immediate support to parents with a child diagnosed with a life-threatening illness. Some 70 MPs signed my letter to the Prime Minister, and I have since written to the Department for Work and Pensions and met the Minister, who advised that the policy could be pursued with the Department for Business and Trade. I have now requested a meeting with the relevant Minister there.

My request to the Government and the Minister today is simple: embrace this campaign and take practical steps to make Hugh’s law a reality. I will meet with any Minister necessary to advance this policy, but the Government must do the right thing and work proactively to turn Ceri and Frances’s inspiring campaign into law.

18:07

[The Minister for Social Security and Disability (Sir Stephen Timms)]

I am delighted to serve under your chairmanship, Ms Jardine. I congratulate my hon. Friend the Member for North East Hertfordshire (Chris Hinchliff) on securing this important debate, commend his consistent advocacy on this topic, and welcome the thoughtful and passionate speech he has made this afternoon.

I have now met my hon. Friend twice, and his constituents Ceri and Frances Menai-Davis, who founded It’s Never You—which I think is also what they said when they received their son’s diagnosis. I thank them for telling me what had happened and telling me frankly about the journey they went through with their son Hugh, who was in hospital with a very serious illness. Their heartfelt reflections and the Hugh’s law campaign help people like me to understand and appreciate much better the emotional and financial impacts that parents experience at an extremely difficult time. I commend the outstanding work that that charity and others do to support the parents and families of children with cancer and other very serious health conditions.

Many parents caring for children and young people with serious illnesses are likely to need additional support through social security. Caring naturally has an impact on work and therefore, very likely, on household income. Financial support is available through universal credit, and if needed support can be available on day one through a universal credit advance. Alongside the universal credit standard allowance, additional amounts—the child element, the disabled child addition, the carer element and housing costs—are added as appropriate. Of course, universal credit is means-tested, and I recognise that it will not help households with greater financial resources, but it is there as a safety net if those financial circumstances change.

In the tragic circumstances of a child dying, the universal credit bereavement run-on is in place. It is designed to ensure financial stability for the initial period following the bereavement, and it can last for up to three months. Universal credit elements—the child element, the disabled child addition, the carer element and housing costs—will all remain in payment for the assessment period in which the child died and two further assessment periods beyond that. To support parents at this very difficult time, benefit conditionality is switched off for six months, which ensures that bereaved parents do not have to work or search for work during that period. After three months, a work coach will be in touch to offer additional voluntary support, which may or may not be taken up.

There is also disability living allowance for children aged under 16 and personal independence payments for those over 16. They are available if a child or young person’s condition or illness is of a long-term nature and gives rise to care, daily living or mobility needs. They are not means-tested. We are currently consulting, following last week’s Green Paper on pathways to work, on raising the age at which young people move from DLA on to PIP, the adult disability benefit, from 16 to 18. That proposal has been quite widely welcomed since we published the Green Paper.

Comparing January to February 2020, just before the pandemic, with September to October 2024, the number applying for DLA for children has increased by 193%—it has nearly tripled in that period. As a result, I am afraid the average journey time for DLA claims has risen; it is up now to about 20 weeks. I very much regret those delays and the Department is working to reduce them. We have increased the number of staff dealing with applications; they are clearing cases in date order, to be fair to everybody.

These benefits are a contribution to the extra costs that may arise as a result of a disability or health impairment. They are assessed on the needs arising, not on the condition itself, so they are available irrespective of the diagnosis. The highest level of benefit is over £9,500 per year. The benefit is generally paid to the child’s parent or guardian, so it can help with overall family finances and be used as the family choose to meet their needs. Many children and young people with serious illnesses may spend a lot of time in hospital. For those under 18, DLA and PIP continue to be paid in full, which is a difference from the adult benefit.

I will now address the three-month qualifying period—which my hon. Friend rightly referred to in his remarks—that applies to disability benefits such as DLA and PIP. Payment begins once the three-month period has been completed, which helps to establish that the disability and resulting care and support needs are of a long-standing nature and provides a division between short and long-term disability. Claims can be submitted during the three-month qualifying period. Consideration will always be given to whether the qualifying period has already been served, at least in part, before the date of claim.

I want to highlight this point: the three-month qualifying period begins when the care needs began, and we depend on the parents to tell us when that was. It could well be a week or a significant period before the diagnosis or the hospital admission, and before the benefit application was submitted. It is important to look at when the care needs began, because that could have been well before the application was made. If the child sadly has an end-of-life diagnosis, as my hon. Friend knows, special rules apply: claims are fast-tracked and the three-month qualifying period does not apply. The highest rate of the DLA care component or the enhanced rate of the PIP daily living component will be paid from the date of the claim.

My officials are currently exploring the legal implications of another measure that has been proposed, which would introduce a run-on for child DLA and extend disability living allowance for a period after the death of a child. They will report on their conclusions once they have reached them. Receiving DLA and PIP can passport to a range of additional support, such as premiums in income-related benefits, carer’s allowance, the Motability scheme and exemption from the benefit cap, providing further help for families.

Help from social security is part of a wider commitment on the part of the Government. For children and young people who have cancer, my right hon. Friend the Secretary of State for Health and Social Care has relaunched the children and young people cancer taskforce, which is focused on identifying tangible improvements for that particular patient group. I commend the hon. Member for Gosport (Dame Caroline Dinenage), who co-chairs that taskforce and will spearhead its work on patient experience alongside her co-chair, Professor Darren Hargrave of University College London and Great Ormond Street hospital.

The taskforce will examine a wide range of issues across both clinical and non-clinical care, early diagnosis, genomic testing and treatment, research, innovation and, importantly, patient experience, looking at issues such as travel, food and psychological support. Ceri and Frances will be in a position to say a good deal about that, drawing on their own experiences in hospital with their son.

The cost of travel can be a real problem for families of children with serious illnesses. The healthcare travel costs scheme provides financial assistance to patients in England who do not themselves have a medical need for transport, but need help with the costs of travelling to NHS services. The Government recognise that some patients and their families who one might think should benefit from that scheme are in fact unable to do so as it is currently configured. The Department of Health and Social Care is looking at that issue and whether more should be done, alongside its wider work on cancer.

[Jim Shannon]

The hon. Member for Mid Sussex (Alison Bennett) and I have just been talking about something that we all feel is very important. When a child is experiencing terrible bad health—bad health that, as the hon. Member for North East Hertfordshire said, could lead to their death—the pressure on the parents and immediate family is enormous. All they want to do is be with their child and love their child all the time. They need someone there to help—“Here are the forms you need to fill out; here is the help we can give you”—to take the pressure off so that they can focus entirely on their child. That is the issue.

[Sir Stephen Timms]

The hon. Gentleman is absolutely right about the pressures on the family in those circumstances. My hon. Friend the Member for North East Hertfordshire referred to the fact that from April this year, the Department for Business and Trade is introducing a new entitlement of up to 12 weeks of neonatal care leave and pay for those with babies in neonatal care, to make sure that parents have appropriate support during that time—for exactly the reason the hon. Member for Strangford (Jim Shannon) has just set out. That new entitlement was introduced under the Neonatal Care (Leave and Pay) Act 2023, which started as a private Member’s Bill in the previous Parliament and received cross-party support. When opening this debate, my hon. Friend the Member for North East Hertfordshire said that he will speak to Ministers in that Department about some ideas along those lines.

It is important that all parents of children with serious illnesses are supported to return to or remain in work, if that is what they choose to do. Carers for seriously ill children are already protected from employment discrimination under the Equality Act 2010 and parents are entitled to up to 18 weeks’ unpaid parental leave to look after their children for any reason.

The Government’s new Employment Rights Bill will make it easier to access that entitlement, and will make the leave available from day one of starting a new job. It will also make it more likely that flexible working requests will be accepted by employers. To support existing, new and potential unpaid carers to make informed decisions about combining work and care, the Job Help website provides advice and information all in one place, and our new deal for working people will provide further support and help.

This debate has reminded us all that having a child who is seriously ill is surely one of the most worrying and stressful situations a parent can experience. I thank my hon. Friend the Member for North East Hertfordshire for the initiative, which has given us the opportunity to talk about that today. There are no current plans to introduce a day one, non-means-tested grant for parents in this situation, like that proposed in the Hugh’s law campaign and supported in this debate, but I underline that there is already significant support offered by my Department. That is just part of the very important work across Government to improve support for parents in these circumstances, including, in particular, the relaunched children and young people cancer taskforce.

Once again, I thank my hon. Friend for securing the debate. It is an important and sensitive subject, and I commend him for pursuing it so energetically, the cause having been raised with him so effectively by his constituents. I thank everyone who has contributed to the debate, and I have no doubt at all that we will return to this subject.

Question put and agreed to.