Children and Young People with Cancer

Clive Jones Excerpts

Wednesday 8th January 2025 Westminster Hall

[Clive Jones (Wokingham) (LD)]

I beg to move,

That this House has considered the matter of welfare for children and young people with cancer.

It is a pleasure to serve under your chairship, Mrs Lewell-Buck, and to discuss an issue that is important to me. As a society we are aware of the cost that cancer has on our lives: it deprives us of a future with our loved ones; it leaves us tormented with constant hospital visits; it forces an anxiety on us about what will happen next; and it causes us relentless emotional, physical and mental pain. It is a pain that does not go away, even when the cancer does.

I regret, however, that society fails to understand the literal costs of having cancer not just to us as individuals but to children, young people and their families. Lest we forget the cruel reality of cancer for young patients, which is often different from that of adults, the cancers that they experience are often faster-growing, less common, have unique emotional and mental health impacts, and have significant long-term treatment effects. The support that they require is therefore quite distinct, and has specific financial implications that make it especially hard.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Gentleman for all his efforts on cancer issues in the short time that he has been in this place. He has been assiduous, focused and very much to the fore on the issue, and we thank him for that. In relation to the welfare of children and young people with cancer, is he aware that 71% of families impacted by cancer in young people are struggling to meet travel costs? That is the case in Northern Ireland, but I understand that it is also the case on the mainland. With one in 10 people missing appointments because they have not got the finances to go to them—and the impact that has on the NHS—does the hon. Gentleman agree that now is the time for Government to step up and ensure that the finance to travel for young people with cancer is made available?

[Clive Jones]

The hon. Member is absolutely right that there are huge costs, especially for children when they have to face cancer, and for the parents of children, because they have to take time off work to look after the children. There is not always the necessary support. Research from Young Lives vs Cancer highlights that on average, a cancer diagnosis for children and young people delivers £700 of additional costs every month for a patient and their family. Those additional costs come alongside significantly falling household income, with an average drop of over £6,000 a year; for at least one in three, that drop is over £10,000 a year.

Cancer does not have the decency to allow people to consider the implications of what happens next, but instead forces people to immediately start spending more. For example, it adds £250 extra a month on travel to hospital, £144 extra on food, often due to specialist requirements and extra hygiene caution, and £68 extra on energy to ensure that the home is always warm and clean, due to young cancer patients being immunocompromised. Those examples and many more all take place from day one.

[Sorcha Eastwood (Lagan Valley) (Alliance)]

I thank the hon. Member for bringing this matter to the House today. Many people will know my own personal story, and that my husband has cancer. One thing we have found on this journey is the number of young people who are currently in hospital beds across Northern Ireland and every other part of the UK. Many of those children, whenever they undergo treatment, will become neutropenic, which involves, as the hon. Member just mentioned, the issue of hygiene, cleanliness, food and everything else. There are numerous charities across Northern Ireland such as Powered by Poppy, inspired by Poppy Ogle who sadly passed away from cancer, and there is Adam’s Army, which operates close to my constituency in Lagan Valley. Families go out of their way to provide services because the state will not step up, and that situation cannot continue. Does the hon. Member agree that cancer is the worst thing that can ever come across a family’s door? Yet whenever the state does not step in, it makes an awful situation a million times worse.

[Clive Jones]

I thank the hon. Member for her intervention. She is absolutely right: cancer is the worst thing that can ever cross a family’s doorstep. It affects every family, every person, very differently. Financially we need something called Hugh’s law, which I will talk about later. That could give a family £700 every month from diagnosis. At the moment people have to wait at least three months, then fill in the forms and wait another three or four months. But Hugh’s law, for not an awful lot of money, could change all that very quickly. I will come on to that.

I hope I have made it clear that the costs are overwhelming; and yet the existing support from the Government is woefully lacking. I would go as far as to say it is downright cruel. Disability benefits are vital for children and young people with cancer because of the costs associated with diagnosis. They come in the form of personal independence payments, disability living allowance and, subsequently, carer’s allowance. Despite those benefits’ being so crucial and the effects of cancer being so immediate, children and young people face a three-month qualifying period before they can claim PIP or DLA. I would just like to repeat that: children and young people are subject to a three-month qualifying period, which for most is from the point of diagnosis, before they can access support.

The very purpose of welfare or social security is to deliver support for the most vulnerable. Young cancer patients go through some of the toughest, unimaginable pain—pain that even I, as a cancer survivor, could not contemplate. They do it with perseverance, with diligence, and somehow they do it with hope.

Tragically, some families lose their child to cancer. To be told at the start of that journey through hell that patients and families need to wait three months before applying for vitally needed funds is simply inexplicable. The evidence shows that the costs are immediate, and yet patients and families are deprived of support that they urgently need from day one. Can the Minister please clarify why it is necessary to have a three-month qualifying period? Can he explicitly put it on the record whether he thinks that that is appropriate in the case of children and young people with cancer? Alternatively, could he please publish the advice from civil servants that are insisting on the three-month qualifying period?

The argument has to be made that the impact of a condition needs to be evidenced for three months before DLA or PIP can be provided to avoid benefit fraud, but it is very clearly established that children and young people with cancer will be significantly impacted by their cancer from the start, even before it is diagnosed. Surely a confirmed medical diagnosis is enough. The Minister may claim that someone with cancer might have been impacted by the condition before their diagnosis was given and therefore their qualifying period will have begun prior to diagnosis. However, experts make it clear that until the diagnosis is given, it is almost impossible for children and young people to know that they have a serious condition that qualifies them for benefits and to evidence the impact. The diagnosis is key. That is simply the reality.

In the experience of charities that I have talked to, children and young people who apply for disability benefits are nearly always successful. Very, very few are rejected at the point of initial application or subsequent appeal. However, I recognise that it may be concluded that that is anecdotal. Therefore it would be incredibly helpful if the Minister could confirm that the majority of children and young people with cancer are successful in their applications for PIP and DLA and that very few, if any, are rejected for benefits. If he could provide the precise statistics, I would be very grateful.

Research also shows that once the three-month qualifying period has concluded, there are significant delays in applications’ being processed after they are submitted. This period currently sits at up to 20 weeks. The qualifying period and these additional delays are leaving children and young people without benefits support for several months. For the application processing, the benefits can be backdated, but only to the point of application rather than diagnosis. That leaves people missing out on benefits support for the first three months of their illness. Based on data from Young Lives vs Cancer, it concludes that children and young people with cancer and their families will have incurred additional costs of on average £2,100 before they can even apply for any benefit.

[Chris Bloore (Redditch) (Lab)]

I thank the hon. Member for allowing me to speak and for securing this important debate. That issue of up-front costs and the costs to some of these children and their families has been underpinned by research by the organisations that he has mentioned. Just 12% of families say that their costs are covered by the current scheme. As children’s cancer therapy gets more specialised, with those families often being forced to travel further and further, there is a big concern about that. It is happening in my constituency, where some families are forced to miss appointments or delay the start of treatment because they cannot afford the costs. Those delayed and missed appointments are actually costing the NHS a lot of money at the moment. While we try to establish new arrangements for travel funding, there are opportunities for savings, by stopping those missed appointments, that could be put back into the pockets of those young children.

[Clive Jones]

The hon. Member is absolutely right: we could save the NHS a lot of money, because a lot of appointments will be cancelled because people are getting used to the fact that their child has cancer, and that they have to make alternative arrangements in order to take them to the hospital where they will be treated. If they were able to get a payment straightaway, that would save the NHS money in the long term. The money that it might cost to make those payments could be recouped further down the line, so the hon. Member is absolutely right.

[Lisa Smart (Hazel Grove) (LD)]

I am grateful to my hon. Friend for securing today’s debate. He mentioned the impact of investing early and of people being able to qualify for payments from day one. Does he agree with me and with Teach Cancer a Lesson, a charity set up by one of my Hazel Grove constituents in Mellor, about the impact of ensuring that education continues when children have a cancer diagnosis? Teach Cancer a Lesson talks about making sure that local authorities have a responsibility to review the education provision for a child on day one, or within 28 days of a cancer diagnosis. Does my hon. Friend agree that the same principle applies—that it costs far less in the long term, in educational terms, if that review is done early, rather than waiting and waiting and allowing a child’s education to suffer?

[Clive Jones]

My hon. Friend is absolutely right. If a child can try to have a normal life, which includes still going to school, seeing their friends and being educated, that will help them and their family to cope with their treatment. Schools and local authorities should work hard to ensure a normal life for that child very quickly.

One family supported by Young Lives vs Cancer received their first DLA payment only in January, after their child was diagnosed in July. In another case, a delay of four months from the start of a DLA application meant that a young cancer patient’s mother was left with no financial support, because her statutory sick pay ended before the DLA started. How the Government expect people to manage with those extra costs is beyond me.

This is the very worst form of bureaucratic inflexibility, and it leads to some people not applying for benefits because they see a system stacked against them, quite apart from the burden of applying during the most disruptive time of their lives. People are not going to prioritise form filling when they or their child needs radiotherapy. The process takes so long that sometimes children and young people have either finished their treatment or, most concerningly, passed away before the benefits have been awarded. A child being treated in Leicester sadly died before a DLA decision was made, leaving their family to go through the challenging conversation of wanting the claim form still to be reviewed because the family were owed a back payment. That is unacceptable.

The Minister responded to a parliamentary question by arguing that those nearing the end of life can apply for special rules. However, this simply does not work very well, because situations can change quickly and some who are not terminally ill can rapidly deteriorate. Some may still receive potentially curative treatment even if the risk of death is high, or some may wish not to know their prognosis. The Minister needs to urgently assess the benefits of changing to a medical evidence-based eligibility for these patients.

There is a precedent for medical evidence being used to expedite access to benefits. The existing special rules process for those with terminal illness definitions means that they do not need to meet the three-month qualifying period with medical evidence. That principle should be applied to all children and young people with cancer, to facilitate immediate access to benefits.

[Bobby Dean (Carshalton and Wallington) (LD)]

The Royal Marsden, which is a world-class facility for treating cancer patients, is in my borough of Sutton. One of the things that struck me when I went there was how much energy goes into trying to make the whole experience for the family and the child going through cancer as comfortable as possible. It was not just about the clinical treatment that that child received, but about having play spaces and comfort areas, and doing everything possible to make that really tough experience a manageable one. Does my hon. Friend agree that the state should seek to do the same, by reducing bureaucratic hurdles, such as those he described, to ensure that that terrible time for the family goes as comfortably as possible?

[Clive Jones]

My hon. Friend is absolutely right. We should be doing everything, especially in the first few weeks, days and months of a diagnosis, to make it as comfortable for a child as possible. Adults who get cancer have a circle of friends around them and can cope with it. I have no idea what it is like for a child, but I can imagine that it is very difficult, so having a play area and things they are familiar with using must make that experience much easier.

I want to ask the Minister if, as per the principles of the existing special rules process, he will consider using medical diagnosis to allow children and young people with cancer to apply for benefits as soon as their diagnosis is confirmed. Does he also recognise that the special rules process in its current form is flawed? One young person treated in London was awarded DLA only a few weeks before they sadly died, despite using the special rules process, which should have expedited their benefits. The stress placed on their family was significant.

I pay tribute to the campaign of Ceri and Frances Menai-Davis to establish Hugh’s law, in the name of their six-year-old son, who tragically died from a rare form of cancer. Their story is heartbreaking, but is unfortunately a common reality for parents who are forced into darkness. At one of the lowest moments in their life, with the Government looking away from them, support is a struggle to access, rather than a guarantee. I personally endorse the objectives of Hugh’s law: for financial aid to be granted to the parents of chronically sick children from day one and for the removal of the three-month qualifying period, which Young Lives vs Cancer has also called for. Its research is right that, for a very small cost, the Government could transform the lives of thousands by delivering parents a limited-time, non-means-tested benefit to cope as their lives completely change.

I met Ceri on Monday to discuss her campaign, and I attended the Hugh’s law event today on the Terrace pavilion. Hearing directly about people’s lived experience and from experts at that event reinforced why we urgently need change. Does the Minister support Ceri and Frances’s campaign for Hugh’s law? If not, will he explain why?

PIP and DLA are not the only benefits to be severely delayed by a system that does not work. Carers can apply for carers’ allowance and other associated carer support only once PIP and DLA have been approved for the young cancer patient they are caring for. That means that carers may be caring for many months before they can apply for carers’ benefits and get what they are entitled to.

I could continue. There exists a loophole in universal credit whereby young people who are at university when they are diagnosed with cancer and then defer their course, with the aim of restarting it when they finish treatment, are not entitled to student finance because they are not actively attending university. However, they not entitled to universal credit either because they are still classed as “in education”. Students should not be forced to totally drop out and start university from the beginning. To state the obvious, a cancer diagnosis is not their fault, and forcing them to disrupt their lives even further is completely pointless. Will the Minister look at the broader welfare support system in relation to children and young people with cancer, in co-operation with expert charities, to close other loopholes and ensure that the full package of support meets their needs?

There are too many points to raise in just one debate, but I would like to conclude on a slightly more optimistic note, following the confirmation from the Department of Health and Social Care that the children and young people cancer taskforce will be launched this year, and that it will seek to identify ways to improve the experience and outcomes for children and young people with cancer. Although I await the specifics of the relaunch of the taskforce, the principles are of good intention. I know that the hon. Member for Gosport (Dame Caroline Dinenage) has been an incredible champion of this project. Will the Minister work with the Department of Health and Social Care to ensure that the children and young people cancer taskforce looks at psychosocial support, which is something I could not address in my speech, along with welfare. Will he also make representations to the Health Minister to ensure that this new body links appropriately with the long-term cancer strategy for England?

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

Like everybody else, I am delighted to find you in the Chair this afternoon, Mrs Lewell-Buck

I welcome this debate, as well as the speech that the hon. Member for Wokingham (Clive Jones) made and the consistent attention he has paid to this issue since he was elected last year. I also welcome what all the others who have spoken in this debate have said. There is a lot that I would like to say in response, but unfortunately I have only four or five minutes in which to say it. I will have to cut my remarks rather short, so I might need to write to the hon. Gentleman with some of my responses, rather than putting them on the record now. However, I am glad that he has drawn attention to the fact that the Secretary of State has said he is reinstating that taskforce in our 10-year plan for the NHS, within which he has made it clear that he wants a separate cancer plan. It will be very helpful for the children and young people cancer taskforce to focus on identifying ways to include outcomes for this particular group of patients.

The debate has focused on the contribution of the social security system in supporting families of children and young people with cancer through the disability living allowance for children aged under 16 and the personal independence payment for those who are 16 or above. Those benefits are available if a child or young person’s condition or illness is long term and gives rise to care, daily living or mobility needs. The benefits contribute to the extra costs arising as a result of a disability or health condition. I will not claim that the support meets all the costs, as that would be incorrect, but they are a contribution—that is intention behind them.

The assessment for those benefits is based on the needs of the individual rather than on the condition, and many with cancer are eligible. The highest level of benefits can mean an extra £9,500 a year tax-free—the order of magnitude that the hon. Gentleman refers to. The benefit is usually paid to the parent of the child, and so can help with overall family finances, as they see fit. We are currently supporting about 3,000 children under 16 and 2,000 young people between 16 and 24 with cancer, with an average award of around £155 per week.

[Clive Jones]

Will the Minister give way?

[Sir Stephen Timms]

I will give way, but I will not have very much time.

[Clive Jones]

I apologise for leaving the Minister with only a few minutes. I have no idea what he is going to say, but I would like him to make some comment about Hugh’s law, and whether or not he supports it, because it would make a huge difference to every single family.

[Sir Stephen Timms]

I am not able to announce a big change this afternoon along the lines that the hon. Gentleman has suggested, but I do want to comment—and would have done, if I had had a little longer—on the qualifying period. I have met the campaigners with their MP, my hon. Friend the Member for North East Hertfordshire (Chris Hinchliff). They make a compelling and vivid case about their own experience, as well as the financial and emotional difficulties that they suffered as a result.

The qualifying period is there to distinguish between a short-term and long-term condition. It is not about fraud, as the hon. Member for Wokingham suggested might be the case; it is there to make that distinction, and it is quite an important part of the eligibility process for benefits. I am not able to announce a big change in that. Of course, we will keep these things under review. I have met the campaigners, and we will certainly listen to representations that come forward—

Motion lapsed (Standing Order No. 10(6)).