I beg to move,
That this House has considered the matter of raising awareness of signs and symptoms of cancer in teenagers and young adults.
It is a pleasure to have this debate, and I thank the Backbench Business Committee for making it possible. I have a number of debates lined up with the Committee, and it asked me the week before last which debate I wanted to do. That is a very difficult question, because there are others that have been lined up since April or May, so I said, “I can’t make my mind up. I will leave it to you.” The Committee chose this subject, and I am very happy to speak on it.
I am my party’s health spokesperson, and this issue is very close to my heart. That is perhaps because, over the years, as an elected representative, I have had the opportunity to speak to constituents who are very clear about what the issues are for them. Cancer in teenagers and young adults is very important because sometimes children have been healed, and sometimes they have not.
Far too often, young people are forgotten when it comes to the conversation around cancer. Today’s debate offers a great opportunity to highlight the issues young cancer patients face, helping us all to explore how we can increase the understanding of signs and symptoms of cancer in their age group, and how to support their specific needs, experience, survival and recovery from cancer.
The importance of the debate was made clear to me by the Teenage Cancer Trust, a charity that is very close to my heart and that I have supported frequently over the years. The Teenage Cancer Trust is the only UK charity dedicated entirely to improving the quality of life for 13 to 24-year-olds with cancer. It helps the seven young people who are diagnosed with cancer every day of the year, supporting them through treatment and beyond. The Teenage Cancer Trust has specialist units in NHS hospitals and provides dedicated staff, including specialist nurses and youth support co-ordinators. It is important to have specialist nurses and youth support co-ordinators in place to offer that umbrella of support when it is needed. The charity has 28 units across the United Kingdom of Great Britain and Northern Ireland, and uses the charitable funds it raises to provide over 90 specialist staff posts.
This year, after noticing the worrying drop in cancer referrals across the first lockdown, the Teenage Cancer Trust ran the “best to check” campaign, which was supported by a large number of MPs, on social media. Many MPs in this House and many Members of the devolved Administrations were involved in that social media campaign. The aim of the campaign was to highlight the specific signs and symptoms of cancer in young people and, importantly, to encourage young people to speak to their GPs or other healthcare professionals if they were concerned, with the message that, if in doubt, it is best to check. It is a good campaign, because it highlights the issues well.
An important point to raise today is that young people with cancer are different from children and older adults. While, fortunately, cancer in teenagers and young adults is rare, compared with cancer in older adults, it is still the biggest killer of young people by disease. This week in Westminster Hall and in the Chamber, we will have a number of debates about cancer, which is something we have highlighted over the last period.
It is always a pleasure to see the Minister in her place, because she has personal experience, but also a knowledge of the subject matter, and I look forward to her response. I also look forward to hearing from the shadow Ministers and from other hon. Members today.
It is always important to remember that cancer is still the biggest killer of young people by disease, because we focus very much on older people in our constituencies who come to see us. My father had cancer on three occasions; the first time, the specialist told my mother, “Go home and get your affairs in order,” yet he survived that. I have a similar outlook in life, both spiritually and in understanding, to my hon. Friend from the Scottish National party, the hon. Member for Glasgow East (David Linden). We believe in prayer. At that time, prayer was a big thing, and I believe it changed the outcome for my father. It was the skill of the surgeon and the care of nurses along with the prayers of God’s people and others that brought him through. He lived 34 years after he was first diagnosed. For a man who was told that his life was over, it is clear what happened. He had two more bouts of cancer and survived them too.
Young people experience a pattern of cancer types distinct from those faced by children and older adults. Typically they are the types of cancer that are considered rarer than those we are most used to hearing about in older adults. It is important that we focus on that. These cancers include the lipomas, the leukaemias, the sarcomas and the germ-cell tumours that are often harder to diagnose than the cancers faced by those in older age groups. We regularly see on television adverts from Great Ormond Street children’s hospital, and when I see young children suffering from cancer at a very early age, it always make me focus on the young people who have to deal with the disease. For example, a couple on television this morning told a very personal story. The case of children who have not had the chance to see all of life resonates very much with us and is close to our hearts.
Alongside that, it is important to recognise that young people with cancer have a distinct and highly significant set of social and emotional needs. Perhaps they do not always understand what has happened to them. They depend on the love of their parents and their families, and the skill of the nurses and their love as well. The normal challenges facing all adolescents and emerging adults still have to be faced by a young person with cancer. Along with the changes that they face, they have to deal with some of the bigger issues.
Young people are at a stage when their brain is still developing. That means that they will interpret and manage their diagnosis and the treatment of cancer differently. Experiencing cancer at the same time as puberty can have an effect on the physical transformations that are taking place. Cancer can have a number of unique physical and social impacts on a young person, and that can affect their identity, sense of self and body image. As the father of three young boys growing up, I was very aware of the difficulties and changes in children. Now I have the pleasure of having grandchildren and watching them growing up. All the things that I did not do right for the children I can perhaps get right for the grandchildren. My wife might say, “That’ll be a big thing for you,” so we will see how it goes.
Cancer can disrupt young people’s attendance at school, their romantic relationships and their interactions with peers at a crucial time in their development. The Teenage Cancer Trust funds youth support co-ordinators who are specialists, who help young people through all aspects of their care.
Young people with cancer face many barriers when needing a swift and accurate diagnosis. An issue both before and during the coronavirus pandemic is the challenge of getting age-specific data on cancer referrals. That is one of the things that we perhaps have not been able to do accurately. I understand the pressures that Ministers and Departments face, but data are not just figures. Data enable us to look at trends and to focus on them. It is important that we have age-specific data.
Statistics on cancer waiting times are broken down by trust and cancer type, but not by age, which is rather unfortunate. When the Minister replies, perhaps she will give us an indication of how improvements can take place. If we had such improvements for age data, we could focus our efforts on how best to address the issue. It is difficult to understand the full impact of coronavirus on access to the system for young people with cancer, but there is no benchmark for comparison in the first place. We cannot even compare with what happened before because the statistics are not in place. It is important that we get them.
Data from the national cancer patient experience survey in 2018 showed that young people were the group most likely to sit on concerns about their body for more than 12 months before presenting to a doctor. We have to address that. If young people are not sure what is wrong and what the changes in their bodies are, they need to be encouraged to speak to their parents and their GP and to feel free to do that, just to check and be sure. I will shortly give one example or perhaps a couple of examples of where doing things that way probably saved people’s lives.
Data from the national cancer patient experience survey and surveys conducted by the Teenage Cancer Trust also show that, compared with older adults, young people with cancer are the group most likely to have to present to GPs or healthcare professionals three or more times before they end up getting a referral and a diagnosis. How many times have we heard that people have gone to see their GP and presented their case, but the GP—I am not being critical—has never been able to indicate exactly what is wrong at an early stage, when the symptoms are perhaps clearly saying it? That is why people go back perhaps two or three times.
As I said, I will give an example of one young person, and I will give just her first name. The Teenage Cancer Trust hears these stories frequently. In June 2019, a young person named Alex was diagnosed with acute lymphoblastic leukaemia. She was 13 years old. Her symptoms started as back pain. When she presented her symptoms to the GP, she was told to take paracetamol and ibuprofen and to keep an eye on it. A week later, she was still having persistent severe back pain, but she had also developed a rash and unusual bruising. Luckily, her GP told her to go to the A&E department for a test, and that was probably what saved her life. Following that, Alex was told that she had cancer.
Alex is now on maintenance treatment and wants to share with other young people the message that if they go to their doctor once and something still feels wrong afterwards, it is important to keep going and asking for help. It might seem silly to do that, but it is essential. If someone has a persistent pain or problem, they must go back to their doctor. What made young Alex persevere was knowing that she would be able to stop guessing once she found out what was wrong. Alex’s story is one of many with a similar message.
Studies such as that by Herbert et al in 2018 have shown that GPs are often not familiar with cancer in teenagers and young adults because of its relative rareness, so their suspicion is low. I know that GPs are confronted every day with different issues, and I understand that, sometimes, with the rapidity of issues, it might not always be possible to know exactly what the problem is. It is often thought that young people are too young to get cancer. No, they are not. It is important that that is said today.
Interestingly, the BRIGHTLIGHT cohort study has highlighted that sociodemographic factors and tumour type significantly influenced primary care referral rates and time to diagnosis. BRIGHTLIGHT has done excellent work, and it is good to have that on the record.
Following on from that, it is timely to raise the issues that coronavirus has caused for teenagers and young adults with cancer. At the height of the coronavirus pandemic, around the time of the first national lockdown, cancer referrals from GPs dramatically reduced for all age groups. It would be great to think that that was just because cancer problems and the need for diagnosis had dropped, but that was not the reason. Cancer referrals were down by as much as 75% across all age groups—adults, young adults and children—as people stayed at home to prevent the spread of coronavirus. People were obviously afraid. They would think, “If I have a chronic disease and I go to the hospital or my GP, I might find that I have coronavirus as a result of that.”
There are potentially thousands of undiagnosed people who otherwise would have been diagnosed, and I think that other debates this week will indicate that as well. There is concern, too, about the particular challenges from the increased demand during the winter period. We cannot ignore that, because the winter period will bring its own problems as it always does. As one who had the flu jab back in September, I understand how important that is. I was never convinced at the beginning that it was really important, but as a type 2 diabetic, I now understand that there is a purpose to it. I have no doubt at all that the flu jab has helped me and many others.
As I said, there is concern about the particular challenges from the increased demand during the winter period. We also have to look at wider access to services for young people with cancer and at how that can work and how we can do it better, because it is important that we do so. Much of the support for young people with cancer has had to move online during the pandemic. That suits some people, but not everyone. While there has been some excellent adaptation and innovation, it cannot fully replace one-to-one support. While online is important, it is not the answer to it all.
It is encouraging to see the pick-up in referral rates across age groups in the latter part of the year. The NHS Help Us, Help You public awareness campaign is welcome. Some of these campaigns are really important, and we have to thank the Minister and the Health Department for campaigns that raise awareness. It is important that that happens.
During the first lockdown, the Teenage Cancer Trust found that young people with cancer found that accessing members of their treatment team much more challenging, particularly for rehabilitation and emotional support. We often say this—there are not many debates when we do not—but the issue is not always the physical part; it is also the mental and emotional wellbeing, the social interaction and the help of families. My goodness, how much we depend on our families for support as well. The trust’s findings show that 69% of young people were seeing their physiotherapist less frequently than usual, and 53% of young people were seeing their psychologist less often than normal. Those figures tell their own story of the fall-downs.
For many of these young people, the impacts of covid-19 and cancer are a massive double whammy. For those in treatment, coronavirus has exacerbated what is already a horrible situation and made it even more isolating and scary. Those young people who do not have the support of family and friends find it a very lonely road to chart a way down. I hope the Minister will give us some ideas in her response about how we can help these young people with their emotional and wellbeing.
For those at the end of treatment, coronavirus has extended some of the most difficult pressures of cancer treatment, which they thought they were finally breaking clear from, such as missing friends, family work and education. I support the Government’s campaign here and in Northern Ireland, where the issue is devolved, to have children at school. It is really important to do that where possible. We can probably do education at home and online by Zoom, but there is not the contact. I watched a TV programme last week where four children from a school back home were asked how important interaction in class was to them. They all said the same thing: they need that social contact. That is very important to have a normal life.
Another young person, Darcy, was diagnosed with skin cancer in February this year, at the age of 21. Her diagnosis came after her mum noticed a mole on her collar bone that was growing and getting darker. Like Alex, Darcy was originally turned away by her GP, who thought the changes were nothing to worry about. That is not a criticism; it is a reality. Luckily, because Darcy knew that something was not right, she decided to go back. She was persistent, and her mother was persistent as well. Her mole was removed and tested, and Darcy was diagnosed with skin cancer.
Coronavirus changed Darcy’s experience of cancer, as the UK entered lockdown soon after her diagnosis. She was one of the fortunate ones who had a diagnosis early and was treated before coronavirus came in. Coronavirus has amplified the issue of young people being forgotten in the conversation about cancer. Due to infection control restrictions as a result of coronavirus, many young people with cancer have to face treatment without someone there with them.
We have had many such debates in Westminster Hall and in the main Chamber. We had a Westminster Hall debate about month ago about miscarriages and losing young babies and children. It was a very emotional debate, full of raw emotion from all those who participated with personal stories. One person in particular—I do not think I will ever forget her contribution—told her story for the first time. Her story was that she had lost her child during the coronavirus pandemic, and it had happened only three months previously. She told the story, from that chair, not so long ago. It told me how important it is to have someone there. Because of the coronavirus, she had not seen her mother since she lost the baby. The special contact that mothers have with daughters was lost for a period of time, so it is important to have that in place. The restrictions are there, of course, in the interests of safety and stopping the spread of virus, but young people with cancer report that they are increasingly struggling with the impact of having to face some of that treatment alone. I underline that again, as it is really important.
It is important to raise several other issues faced by young people with cancer, one of which is access to clinical trials. Perhaps the Minister will agree that we should be trying to address that. Access to clinical trials can improve survival rates, outcomes and quality of life. Teenagers and young adults are, however, significantly under-represented in cancer research. We do need to do something in that department, and it is important that we do that. If young people are involved in clinical trials, we can improve cancer research, thereby improving the results. Recruitment rates in the UK among 15 to 24-year-olds are between 14% and 30%, compared with a rate of 50% to 70% in paediatrics. That tells me something. Those facts are stark, and we need to address that.
Another key issue is the impact that cancer can have on the mental health of a young person. I said it earlier on and I say it again. CLIC Sargent’s 2017 “Hidden Costs” report on young cancer patients showed that 70% had experienced depression, 90% had experienced anxiety and 42% had experienced panic attacks during treatment. Despite that, many young people with cancer cannot access the psychological support that they need. Research by the Teenage Cancer Trust in 2018 showed that only 61% of young people said they had access to a psychologist or a counsellor throughout their cancer treatment. That figure fell to 44% after the treatment had finished. We really need to do something with that sector. It is crucial that every young person with cancer who needs it gets support from a mental health professional, from diagnosis through treatment to aftercare: from the beginning of the process to its end.
Cancer in young people may be rare when compared to cancer in adulthood, but it is still the biggest killer of young people by disease. Cancer awareness now forms part of the health education curriculum in schools in England. That is welcome, but education about lifestyle choices to prevent cancer in adulthood does not go far enough to help young people to understand the signs and symptoms of cancer in their own age group that are not down to lifestyle. It is important that we realise that. Cancer can come and strike hard when it is least expected. Young people with cancer need to be equipped with knowledge about the signs and symptoms of cancer in their age group, and empowered to visit a doctor when they think that something is wrong. Perhaps the Minister can give a follow-up in her response on how that education programme is going. It is a good idea, by the way. It is fantastic, and I highly welcome it, but I think, ever more mindful of the difficulties in education due to coronavirus, that the follow-on is important. Hopefully life will change in the new year, when the vaccine is more available and we have a better opportunity to take advantage of it. I am not quite sure what the new normal will be, but we do look for some sort of normality for the future. More widely, young people with cancer are consistently forgotten in the cancer conversation, so it is important that awareness of the issues faced by young people with cancer is raised. If data on referrals and diagnosis risks by age is not publicly available, however, difficulties in knowing where to effectively target interventions will continue. The specific needs of young people with cancer must be considered. Public awareness activity on cancer needs to include reference to the specific types of cancer that are more prevalent in young people. If we can focus on cancers that are more prevalent, we can give advice, raise awareness and encourage young people to act at an early stage.
Finally, general practitioners and healthcare professionals should be encouraged to refer young people who present possible cancer symptoms for tests, even if the suspicion is on the lower side. If they are in any doubt whatsoever, it is always better to check this than to just sit on it. Thank you for this opportunity, Sir Christopher. I look forward to hearing contributions from right hon. and hon. Members, who have plenty of time to do so.