Children and Young People with Cancer

Debate between Bobby Dean and Clive Jones

Wednesday 8th January 2025 Westminster Hall

[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?