Cancer Strategy — House of Commons, 2018-02-22
Topic: Health
Thangam Elizabeth Rachel Debbonaire (Labour, Centre-left): I thank my hon. Friend for that intervention. He is absolutely right: these specialist organisations understand not just what the patient is going through, but what the families are going through and how devastating a diagnosis can be. They also know what can be done to help people through it I set up the all-party parliamentary group on childhood and teenage cancer last year with the help of CLIC Sargent and the Teenage Cancer Trust, which provide the secretariat, because children and young people living with cancer and their parents told me that they want to have their voices heard in Parliament. I thank the officers, almost all of whom are here, for their work. I thank my hon. Friends the Members for Alyn and Deeside (Mark Tami), for High Peak (Ruth George), the hon. Members for Filton and Bradley Stoke (Jack Lopresti) and for Strangford (Jim Shannon) for their support Childhood cancers are, thankfully, rare. Just 4,000 children and young people under 25 are diagnosed with cancer each year in the UK, but this rarity means that they are very often difficult to diagnose and, therefore, much more likely than older patients to be diagnosed at emergency at a later stage. That also means that the treatment can be difficult and that children, young people and their parents have to travel a long way for specialist treatment. It can mean that treatment can be particularly and unpleasantly aggressive. There are consequences for children’s education and their future employment. The treatment may also affect their fertility—something that they may not even be thinking about at the time of diagnosis. It may cause a disability. It may set them apart from their friends at exactly the moment when they are just finding out who they are In Bristol, the Teenage Cancer Trust provides a specialist ward for teenage cancer patients—I thank everyone who works there. It is able to help teenagers and their parents to get through this difficult time with services that are tailored to their specific needs. CLIC Sargent provides specialist support, which, in Bristol, includes a home—not a house—for children and their families to live in and have care from while they are having treatment for cancer. Indeed, a parent I met when visiting the CLIC Sargent house told me of arriving in Bristol in the morning with nothing—apart from them and their child—expecting just a check-up, and by the evening discovering that their child had cancer and that the treatment was due to start immediately. The CLIC Sargent social worker in that case can explain what the house does and what the facilities are and help to guide people who are suddenly dealing with not only a really traumatising experience, but having no food, no clothes and no supplies for the next few days Two years ago, the "Cancer costs" report, the parliamentary launch of which I had the honour of hosting in autumn 2016, identified specific costs for families affected by childhood cancer. I urge the Minister to relook at that—I am sure that he has already seen it. Young people and parents at that launch told me that they wanted a voice, hence the formation of the all-party group. We are launching our first inquiry on Monday, looking at patient experience, and I know that the Minister will want to engage with that process as we go forward We want Parliament to better understand the really specific experience of children and young people with cancer and their families and to identify whether their needs are being met and where improvements can be made. For example, there might be suggestions for improvements to cancer diagnosis, post-treatment support, or help with the specific issue of the impact of the diagnosis that my hon. Friend the Member for Alyn and Deeside mentioned, as well as all the other areas that I have listed Many of us here may have had contact with children with cancer or their parents in our constituency work. I say to those people: this inquiry is for you, but it is also about you and with you. Young people, parents and professionals can get involved from Monday by filling in the short online survey on the all-party group’s Twitter feed and website. They can find out more about the inquiry on the webpage if they just google "APPG young cancer". Our lines of inquiry are also informed by what children, young people and parents have already told us, and we have young people involved in hearing and analysing evidence as well as giving it The Government have committed to collecting patient experience data for the under-16s, and research into how that can be undertaken is progressing. We are pleased to hear about that data collection, but I would like the Minister to consider how it might be improved and tell us a bit more about that.