Cancer in Teenagers and Young Adults

Jo Churchill Excerpts

Tuesday 1st December 2020 Westminster Hall

[The Parliamentary Under-Secretary of State for Health and Social Care (Jo Churchill)]

It is a pleasure to serve under your chairmanship, Sir Christopher. I thank the hon. Member for Strangford (Jim Shannon). I congratulate him on securing the debate and on the sensitive way in which he always approaches these subjects.

Someone once said to me, “You don’t choose it. It chooses you.” That is the challenge with cancer. People have very little control over when or if they have to make that journey. However, it is a matter of making sure that we have the services in place and can have early diagnosis, and that we never take our foot off the pedal in getting the right workforce and making the pathways simple. People are understandably discombobulated when they are told; it is a tsunami of emotions. I would gently say that in the case of someone’s child, the wave is even higher. I could not imagine the pain of being told that.

On that point, I thank the hon. Member for Strangford for talking about Alex. I thank my hon. Friend the Member for Wakefield (Imran Ahmad Khan) for his tribute to Daniel and to Ellis Price. I thank the hon. Member for North East Fife (Wendy Chamberlain) for giving us a little hope and showing us that Toby’s Magical Journey was a way those parents, through the most appalling circumstances, could turn their love of their child into something incredibly productive that is now helping parents who are going through the same thing.

As many hon. Members have said, the issue is a cross-party one. I was so pleased that the title of the debate was about raising awareness, because that is something that we can do in this place no matter what divides us about our other politics. We can raise awareness, and the issue of health is very much one that joins us, although the delivery of it is separate in the devolved nations that we belong to.

I thank those who have made contributions and want to add my good wishes to the hon. Member for East Dunbartonshire (Amy Callaghan). When I noticed that she had become the chair of the all-party parliamentary group on children, teenagers and young adults with cancer, I looked forward to perhaps being able to discuss things with her. As hon. Members have said, the ability to bring personal experience to this place—in the sphere of health, business or anything else—gives debates a power that is sometimes otherwise lacking. In these covid-tinged times, debates in this place have changed, but our ability to do things together—to raise awareness and make sure that people’s voices are heard—is still very much in our control.

We have discussed the fact that cancer is no respecter of anyone. I have two young friends who have been through the challenge of teenage cancer—and it is challenging. One was just a teenager and the other was just exiting that period of life, which, as everyone has said, is one with an awful lot going on, emotionally and in a person’s maturity. We have not talked about ensuring we get the transition right, but speaking to people from the Teenage Cancer Trust or young people who have had cancer, we know that ensuring we get them in the right place in the system is important, so that as they move into adulthood they are not on a ward with very young children and vice-versa.

We have talked about the challenges posed by covid-19. In phase one of the pandemic we stopped services, but as soon as we could push the recovery button, we did. I have focused, along with those leading the drive in the NHS—Cally Palmer and Peter Johnson—to ensure we do not do that again. It is important that people can access other treatments. As the hon. Member for Nottingham North (Alex Norris) said, if covid-19 overwhelms the system, all the other areas we so passionately debate will become secondary and access to those services will become more difficult. We should all be aware, however, of the ambition to be tough on this disease.

We will get into calmer waters. When we do, we need that long-term plan and personalised care interventions, including a holistic needs assessment, health and wellbeing information and support, and end-of-treatment summaries. We need to identify and address the more psychological, psycho-social and emotional needs from diagnosis onwards, and to inform GPs about what is happening to a patient and their ongoing needs. A patient’s journey in hospital is often quite short, so those other medical professionals need help and assistance to access the information they need in their training.

As several hon. Members pointed out, childhood cancer is thankfully rare. That offers professional challenges in ensuring the diagnosis is as early as we would like. We heard from my hon. Friend the Member for Wakefield about the short window between Ellis’s exhibiting symptoms and being in hospital. We often find that in young children; it feels as if the change happens in a week or so. That is a challenge for the profession, but one it is up for. It is incumbent on me to outline to everyone that, thankfully, these cases are rare, but that makes it challenging for doctors when they are looking at a set of symptoms.

In the light of phase one, we have set up the cancer recovery taskforce, which includes children and young people’s cancer charities, to ensure that their voice is heard. It is important that, as we are recovering, we ensure that individuals from across the cancer family have their voice heard, because no two journeys and no two individuals’ needs are the same. That is a challenge. We are focusing on early diagnosis, workforce, treatment pathways, data and support. We are addressing system recovery, urgent referrals and screening, and ensuring the right communication is in place.

I know personally—like all of us—of the devastation this disease causes and the pain it brings to individuals and their families, but the impact on a young person is particularly heartbreaking. We know that cancer is rare among teenagers and young adults, who account for less than 1% of all diagnoses. Approximately 2,200 cancers are currently diagnosed for patients between 15 and 24. However, today’s debate has provided an important opportunity to raise awareness and shine a light on young people’s specific needs, experiences and recovery from cancer.

One of the positives of covid is that many more cancer treatments have become more patient-friendly and less impactful on the individual; that relates to the point made by my hon. Friend the Member for Wakefield about the treatment not being worse than the disease. Therefore, as treatments progress and with genomic testing coming along, it is important to make sure that we target the disease and not the healthy part of the body, so that we get the most positive outcomes for individuals that we can.

[Jim Shannon]

In my speech, I referred to clinical trials and the need for young people to be part of them. That will improve the data and the end results. Perhaps the Minister is about to come to that point and I apologise if she is, but has she any thoughts on how we can do that?

[Jo Churchill]

I thank the hon. Gentleman; if he will give me a second, I will come to that. Like him, I believe that research is the way to unlocking some the problems.

Awareness of teenage cancers in schools is important. Education from an early age on the causes and symptoms of cancer has been mentioned. I was pleased to see that this year’s curriculum for religious, sex and health education means that children are being taught about some of the signs and symptoms of cancer. In particular, that includes skin cancer, the link between smoking and lung cancer and ensuring that people keep a healthy weight. All these things help young people to become more aware of themselves, their bodies and their health outcomes. I hope that will encourage someone to pick up the phone and take steps towards discussing their health if they are worried about it.

As the mum of four daughters and, like my hon. Friend the Member for Wakefield, as the friend of parents who have been in this situation, raising awareness in a sensitive manner especially when the risks are low is something that we should all work on. Cancer is a frightening subject at any age and I pay tribute to the cancer charities that specifically deal with young people. As many Members have said, they do an amazing job not only to support people but to promote cancer awareness. For example, the charity HeadSmart helps to improve the understanding and awareness of the symptoms of brain cancer. The Teenage Cancer Trust, CLIC Sargent and Teenage and Young Adults with Cancer are also in this space, and the hon. Member for North East Fife pointed out that many local charities, such as Toby’s Magical Journey, do good work right across the country.

There is another debate in the conversation about moving to a cashless society and understanding how charities will probably have to reframe their work. In my constituency only last month, a small team of three raised more than £400,000 in an online auction. Things will have to move in a different direction when traditional collections cannot take place. We saw that with the Royal British Legion’s poppy collection, which was severely impacted. Like the hon. Member for Nottingham North, I am aware that if we are not careful, we will create a two-tier society because many people in all our constituencies still want to use cash. We could probably be smarter, but that is an issue for another day.

On the learning in school guidelines, we will keep an eye on how the research develops and feed that in. I will have further conversations with my colleagues at the Department for Education to understand how we look at the curriculum and what more we can do.

I turn to research. Only by understanding the data can we understand the treatment pathways and cohorts. I want to make a point about those carrying the BRCA gene, who tend to be much more at risk. A young friend with BRCA in their family recently had a double mastectomy. She wrote to me about the support that she had had from a charity and she mentioned raising awareness.

Understanding the data is really important. The National Institute for Health Research is leading a multi-stakeholder strategy with NHS England and NHS Improvement, cancer charities, teenage and young adult cancer patients and clinicians, focused on increasing the participation of teenage and young adult patients in research, as set out in the recommendations of the independent cancer taskforce in 2015 to improve outcomes. I regularly meet Cally Palmer. Our focus last week was on teenage cancers, because it is a challenging area where we know we have to do better. The collection of data is very important, as is the participation in clinical trials.

The NIHR clinical research network has funded specific teenage and young adult research and also nurse posts in its 15 local clinical networks, and has instituted measures to identify all teenage and young adult cancer patients participating in the NIHR portfolio research. It is also taking a lead role in an international initiative to remove artificial age barriers that prevent adolescents and young patients from accessing clinical trials.

There are some challenges around data protection and various other things that make the collection of age data a little problematic, but my offer to the hon. Member for Strangford is to take that away and further discuss with colleagues how we can do it. Although things often seem simple, they sometimes are not, and we have to consider the unintended consequences of collecting vast amounts of data. For example, who do we allow the data to be shared with? We can depersonalise it for research purposes, but very often people want it personalised because they think that perhaps the school should know or whatever. All these things are very sensitive and need handling in the correct way.

The long-term plans states that we will

“actively support children and young people to take part in clinical trials, so that participation among children remains high”

and rises to the 50% that the hon. Gentleman mentioned by 2025. However, it is a challenge. Clinical trials need to be more representative across the board. We often find that they are particularly skewed towards males, but that is for another debate. Pharmacology and treatments act differently across genders and age boundaries, so making sure we have the right participants is important.

More effective consent processes for using data and tissue samples will contribute to improving survival outcomes. We will seek the views of patients aged under 16 to ensure that the NHS continues to offer the very best services for young people, which is where the cancer patient survey is most important. That will be used alongside other data to inform service design and transformation.

It is a given that we all want to do more, but making sure that the ambition for the future of cancer diagnosis and care is foremost is something that I am particularly focused on.

I am pleased that we have delivered on our commitment of September 2019 and that all boys aged 12 and 13 are being offered the vaccination against human papillomavirus-related diseases such as oral, throat and anal cancer. That builds on the success of the girls’ programme, which has already reduced the prevalence of the main cancer-causing types of HPV, 16 and 18, by more than 80%. There is also prevention here, which is very important. Ultimately, that will reduce cervical cancers and other cancers as people go through their lives.

Our aim is to drive more personalised treatments for patients, but particularly children. From last year, we have targeted the use of whole genome sequencing, which will enable more comprehensive and precise diagnosis and access to personalised and less invasive treatment. Cancer treatment is often challenging, and the personal approach reduces medications and interventions that may be harmful to healthy parts of the body.

We also support increased access to clinical trials, making sure we have diverse participation across age, genders and ethnicities. Following from that commitment, we made available treatments targeting neurotrophic tyrosine receptor kinase gene fusion solid tumours earlier this year, following the National Institute for Health and Care Excellence appraisal. Further guidance that has been issued by NHS England and NHS Improvement prioritises the delivery of the long-term plan commitments that support the recovery of services.

The ambitions include improving survival rates and early diagnosis. In March, we had 17 live rapid diagnostic centres. However, since October we now have 45, and I hope the fact that, even during the pandemic, the cancer workforce have stood up a further—I will do my maths very quickly—28 rapid diagnostic centres shows that commitment. Continuing the accelerated roll-out of places where people can be swiftly diagnosed is vital to getting on top of this disease.

I know hon. Members have raised concerns about the impacts on services through the second wave. As I said at the start, we must protect NHS capacity for non-covid services such as cancer. We expect cancer services to be maintained, with the redeployment of staff or blanket decisions to postpone services made only as a last resort and only at the behest of the clinicians involved in the treatment of others in their local area.

I have been meeting regularly with the national cancer director, Cally Palmer, and this week NHS England issued its latest guidance on maintaining cancer recovery throughout the second wave. It is important to continue to advise children and young people and their parents, as several hon. Members have done, to contact their GPs if they are worried about any sign of cancer. It is far better to pick up the phone and ask and to have their worries allayed than to think that maybe they could have rung before.

Referrals in September were running at 102% against referrals last year, but we do have a backlog to make up, and we still have some challenges in some of the pathways, which I know the workforce are addressing as swiftly as they can. We saw 199,801 urgent referrals, which, as I say, was 102% of the normal rate year on year; in April it was at 40%. That gives hon. Members some idea of the differential that we have to drive forward. We intend to ensure that we get education right for professionals and that we maintain a patient-centred approach.

I would like to conclude by wishing all those young people the best for their treatment and a fervent hope that they get to ring the bell. At the end of treatment, in most wards, there is a bell that young people get to toll, which marks out that they have finished what is a pretty gruelling episode of their life. I would like to hear that bell ring out for every family. While I know in reality that that is not possible, with good attention to research, by ensuring that we collect the data appropriately, and with all of us focused on raising awareness, I hope we will hear those bells ring out much more regularly.