Seriously Ill Children: Financial Support for Parents

Jim Shannon Excerpts

Tuesday 25th March 2025 Westminster Hall

[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.

--- Later in debate ---

[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.