Child Cancer

Debate between Thangam Debbonaire and Wes Streeting

Monday 28th November 2016 Westminster Hall

[Thangam Debbonaire]

I, too, will be mentioning similar services later in my speech. Absolutely, the last thing parents facing such awful situations need to be worrying about is where they will stay, how they will afford it and how they will afford even to put petrol in the tank.

My nephew was diagnosed at age 12 with osteosarcoma, a very rare childhood cancer. We were all so focused on getting him and his mum, and his sisters and brothers, though that illness that the longer-term impacts felt very much secondary. Specialist units such as the one in Bristol help the family as well as the young person with cancer to see the whole of life as important, to think about the longer-term implications and to prepare for them. I pay very personal tribute to the teenage and young adults cancer unit in Bristol for its work and to the Teenage Cancer Trust for its support of the unit.

As my hon. Friend said, getting the number of units right is difficult. Given the thankfully low numbers of childhood cancer victims, if the units are to be truly specialist, it will not be an easy matrix. To ensure an appropriate number of specialist units, the Government need to be clear with appropriate commissioning guidance and take responsibility for following it through.

In October when I asked the Department of Health in question 50795 what proportion of specialist units were funded by charitable trusts, the Under-Secretary of State for Health, the hon. Member for Warrington South (David Mowat), replied:

“This information is not held centrally.”

For me, that is simply not good enough. Yes, commissioning is done locally, and increasingly commissioning groups and trusts are collaborating, but Government leadership is necessary to work out how many units are needed and how to fund them. Will the Minister commit to gathering that information centrally in order to estimate properly the funding needed to commission appropriately throughout the country? Will she further commit to consulting on and publishing clear commissioning guidance so that the responsibility for commissioning and funding specialist treatment centres for children, young people and young adults is clearly identified, and so that a structure for commissioning across health regions is clear?

On the future of research into childhood cancers, there is clear potential for harm when the UK leaves the EU—I say “potential”, because any such harm can be mitigated, but the Government need to act urgently to address it. Earlier this month in answer to my question 50081 about research, the Minister for Universities, Science, Research and Innovation gave welcome assurances about funding. I welcome those assurances, but he did not mention research cohorts. Thankfully, childhood cancer is rare, so it is vital for UK researchers to be able to collaborate fully with their EU counterparts so that they can carry out clinically adequate research with a sufficiently large enough group of children and young people to provide clinically useful and secure results. Yes, funding is vital and I am grateful to him for those assurances, but it is not enough. My next question to the Minister present is this: will she commit to discussing that with her colleagues in the Department for Exiting the European Union, along with research about other rare childhood cancers?

As my hon. Friend the Member for Alyn and Deeside (Mark Tami) mentioned, children and young people with cancer and their parents often need to travel long distances for specialist treatment. That might always be unavoidable and, in any case, there are other huge financial costs for parents. In September, I was proud to chair the parliamentary launch of a report by CLIC Sargent, which does so much wonderful work to support children and families affected by childhood cancer. The report shows that the costs of cancer are not only emotional, educational and physical, but financial.

One young person at the launch spoke about how he had to prove repeatedly to the benefits agency that he had cancer and that his treatment was still not over nor his recovery complete. Another young person found that her student loan was stopped because she was deemed to be a student no longer, but her halls of residence still charged her rent. A lone parent spoke of her struggles to manage her finances while faced with losing her income from employment and the increased costs of driving her son a long distance many times each month for treatment, as well as the added costs of heating a home all day for a very sick child, which is often overlooked, and the costs of keeping clothes, bedding and house scrupulously clean, which is so important because the risk of infection is extremely high for those undergoing gruesome treatments such as chemotherapy, as other hon. Members have mentioned.

CLIC Sargent and other charities I know help with all those things and more. I have had the privilege of being shown round the CLIC Sargent house in Bristol, located a few minutes’ walk from the Bristol Royal infirmary. That house, run by a wonderful woman who knows all too well what childhood cancer means, provides a haven just when it is needed.

[Wes Streeting]

May I, too, pay tribute to Haven House children’s hospice, which is just outside my constituency and serves many of my constituents? Hospices are often associated with end-of-life care, but as in the case of Haven House, they also provide great support to families whose children may not be near the end of their lives and help them on that journey. They are such a powerful and important source of support, and of course they are all voluntary and rely on the public’s generosity.

[Thangam Debbonaire]

My hon. Friend is absolutely right. There are many charities across the country that do everything they can to try to help the families of children and young people with cancer. I pay tribute to them all, even though I cannot possibly know their names.

The CLIC Sargent social worker is on hand in the Bristol royal infirmary when a family receives a devastating diagnosis and is told that their child needs to start treatment right away. Such families are often many miles from home. They can arrive that night at CLIC Sargent house with nothing and be given somewhere to stay for as long as they need it, clothes and bedding if they have come without them and, when necessary, space for the whole family so brothers and sisters can be with their family and their sibling who is being treated. I am proud to declare an interest in CLIC Sargent: my beloved sister-in-law works for it. She gives her time and expertise to an organisation that has done so much for our family and many others.

Will the Minister commit to discussing with her colleagues in the Department for Work and Pensions the financial impact of childhood cancer on families, and will she use the CLIC Sargent report as a reference point? Will she further consider supporting the provision of such homes for the families of children with cancer? If those homes are essential for allowing children to be treated, we must surely consider prioritising them along with other specialist support for statutory funding, at least in part. I do not believe it is right that such homes, which are so essential, must rely entirely on the generosity of volunteers and charitable giving, although I pay tribute to people who raise money. The Government must consider providing that funding.

As other hon. Members have said, until someone has known childhood cancer in their own family, it can be difficult for them to comprehend its full impact. Yes, there are excellent briefings available from specialist cancer charities—CLIC Sargent, Teenage Cancer Trust, Cancer Research UK and other charities provided briefings for this debate. My family was fortunate. Despite an initially very difficult prognosis, that 12-year-old child is now a happy, well adjusted young man in his 20s with a responsible job and a secure relationship with his partner, but I grieve for those who are not so fortunate. I want to ensure that, whatever the prognosis, no family has to worry about money at that most difficult time. I want us to do everything we can—the Government must lead—to improve awareness, early diagnosis, treatment and support, so that one day deaths from childhood cancer end and we alleviate and reduce, if not completely eliminate, the terrible suffering that it brings. I also hope against hope that one day, no parent will ever have to hear the word “cancer”. I long for that day, as I am sure we all do.