On Thursday 22 February, I spoke in a debate about the government’s cancer strategy. In particular, I spoke about the work that the All-Party Parliamentary Group for Children, Teenagers and Young Adults with Cancer is doing to give young cancer patients – and their families – a voice in Parliament.

Improvements have been made in cancer services across the UK, but progress still needs to be made in key areas of experience for children, teenagers and young adults, including earlier diagnosis, access to age-appropriate services and post-treatment support. In my speech, I highlighted that any attempts to improve these areas of patient experience need to have the voices of young people, their families and clinicians at the very centre.

Thangam Debbonaire

It is a great honour to follow the hon. Member for Dumfries and Galloway (Mr Jack), who spoke so passionately and knowledgeably for better understanding, treatment and diagnosis of blood cancer.

Like everyone in the House, I could speak about many aspects of cancer, including my own experience. I could speak about the very moving speech made by Baroness Jowell in the other place—a very special moment in Parliament’s history, and one I will always be glad to have been there for, although I am very sad that she had to be there. I could speak about how horrible chemotherapy is and about how deeply a girl can feel the loss of her eyelashes, for example. I could speak about my support for health labelling for alcohol, as so few people are aware of the connections between alcohol and breast, bowel and other cancers.

The Parliamentary Under-Secretary of State for Health (Steve Brine)

Indicated assent

Thangam Debbonaire

The Minister is nodding vigorously from a sedentary position, and I hope that means he will support better labelling.

I could speak about how important healthy habits are generally for reducing cancer, and again I ask the Minister to do more to urge people to take up those healthy habits from an early age. I could speak about how all women should learn how to check their breasts properly, because so many have told me that they do not how to do that. I could talk about what I learned last week in CERN, of all places, where the Large Hadron Collider is, about the contribution that that scientific institute has made to improving diagnoses of cancer. I could mention, for instance, the development of the MRI—the magnetic resonance imaging—machine. I spoke to scientists there who, I am glad to say, are doing what they can to reduce the very frightening knocking that happens when a person is inside the machine. However, today, I am going to speak about the patient experience of a very specific group—children and young people with cancer and their families.

I say to those children and young people, their parents, their brothers and sisters, their clinicians and the charities supporting them, who may be listening, that this speech is for you. I pay tribute in particular to CLIC Sargent and the Teenage Cancer Trust and thank them and all the other charities, too numerous to mention, that help children and young people with cancer every day. I want to give a very personal thanks to my sister-in-law Emilie, whose volunteering, fundraising and work for CLIC Sargent is an inspiration to so many and whose personal knowledge has taught me so much.

Mark Tami (Alyn and Deeside) (Lab)

I am a parent of a child who has had the support of CLIC Sargent. It is not only that the charity supports you from a medical point of view—the people you talk to actually understand what your child and you are going through.

Thangam Debbonaire

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.

Mark Tami (Alyn and Deeside) (Lab)

A few years ago, CLIC Sargent produced a report about children with cancer returning to school. That really highlighted some of the major problems and the lack of guidelines to give teachers a proper understanding. Particularly for children who are very young, it is difficult not only for the child with cancer but for the other children at the school, particularly girls who have seen their friend, who looked perfectly normal, without hair, or something like that. It is a very difficult situation. We need a proper system in place so that those children can be properly included rather than excluded.

Thangam Debbonaire

My hon. Friend is absolutely right. I know from my experience in my own circle exactly how that can affect not only the young person but their educators. Young people have spoken to me of really different experiences. Some have said that they had good support from their school, while others have been told, rather sadly, that they were upsetting their peers with their hairlessness. I find that really challenging, because a child or a young person with cancer is actually an opportunity for schoolteachers to work with young people on how they can not only support their friends but reduce their own risk through making healthy choices at that point.

I reiterate to all hon. Members in the House and beyond that, if they would like to get involved with the all-party group or this inquiry, they should please get in touch with me. If children, young people, parents or other family members also want their voice heard in the inquiry or in Parliament, they can contact the group or me, or their own MPs. I hope that the Government, and Parliament generally, will be willing to hear the voices, needs and experiences of children and young people with cancer, and their families. I am sure that everyone here is committed to that, but we really must actually do it.

You can watch a clip of the speech below, or you can watch the whole speech here:

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