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 debated 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 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 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.
It is a pleasure to serve under your chairmanship, Sir Christopher. I thank my friend—for he is one—the hon. Member for Strangford (Jim Shannon) for securing today’s important debate, and I hope it raises further awareness of this important issue. As my friend so poignantly illustrated, we have all sacrificed a great deal in the fight against coronavirus. Lockdown and the ensuing restrictions, which we continue to endure, have had a seismic impact on the services that the NHS can provide, none more so than cancer services.
Cancer is sadly the leading cause of death from disease for those aged between 13 and 24. Every day, seven young people between these ages in the United Kingdom receive the devastating news that they have cancer. I remember all too well a young family friend, Daniel Illias, a son and brother, who died from cancer as a teenager. It was particularly difficult as he received treatment at the same time, in the same hospital and with the same medical team as my own father. My father was 59 at the time, with prostate cancer. I remember going in and often seeing them, despite the age difference, playing chess or chatting about theology and other issues; the bond between the two was particularly strong. The day that his father telephoned to let me know that Daniel had died, and I had to go up to my father, in his bed, to let him know, was an awful, difficult day indeed.
My dearest friend, Will James, died of bowel cancer at just 26, only months after marrying his new, beloved wife Jen. We had just been celebrating his wedding. I think of Will every day.
It is only through early diagnosis that lives can be saved and complications can be prevented. Young people have been profoundly hit by the lack of cancer treatment as a consequence of the response to covid-19, whether in diagnosis, operations, chemotherapy, or radiotherapy. Cancer Research UK has highlighted that thousands fewer people are being referred for hospital tests, especially for lung and prostate cancer. According to Dr Louise Soanes, director of services for Teenage Cancer Trust, cancer referrals were down by as much as 75% in England, across all age groups, during this coronavirus pandemic.
Cancer can be effectively caught early and acted upon only if we ensure that the symptoms of cancer are fully understood and that people can see doctors. No one should have to suffer the physical or mental ordeal, or have their lives put at risk, from having their treatments delayed.
Covid-19 is certainly one of the greatest health emergencies we have had to fight, but at what cost? I, and a number of colleagues, have said in this House that we must ensure the treatment is not worse than the disease. Nothing brings this into sharper relief than the provision of cancer treatments.
In closing, I pay tribute to the heart-breaking story of young constituent of mine, Ellis Price, who lived with his mother and step-father, Laura and Ashley Pearman. Last year, Ellis’s mother noticed that he was falling over a lot. She took him to the doctor, but they raised no issues. Two days later, Ellis began to vomit violently and Laura took him back to the doctors. He was subsequently sent to Leeds General Infirmary, where it was discovered that Ellis had a brain tumour. Ellis underwent brain surgery, and the horrific ordeal of chemotherapy and radiotherapy. Sadly, on 20 July this year, Ellis’s family were told that the treatment did not work. The tumour had spread to Ellis’s spine, and was now terminal. Ellis died on 20 September. He was three years old. How many families have to suffer through the heartbreak of watching their child fight and, like Ellis, tragically lose to cancer?
I applaud the efforts of charities such as Teenage Cancer Trust and Cancer Research UK for raising the vital message of early recognition of symptoms. As we emerge from the current health emergency, more must be done to ensure that young people are educated on the symptoms of cancer, so that fewer families like Ellis’s have to suffer.
It is a pleasure to serve under your chairmanship, Sir Christopher, and I congratulate the hon. Member for Strangford (Jim Shannon) on securing this very important debate.
I will use my time today to highlight the work of a charity in my constituency, based in Cupar, that is focused on childhood and teenage cancers, called Toby’s Magical Journey. The “Toby” in Toby’s Magical Journey is Toby Etheridge, who was diagnosed with acute lymphoblastic leukaemia as a child, back in 2014. Together with his parents, Richie and Alison, he raised over £50,000 for charity during the two years of his treatment: £50,000 that would help provide toys, games, gifts and experiences to children and young people who were being treated for cancer and their families, both at the Royal Hospital for Sick Children in Edinburgh—which is where 90% of child and teenage cancer sufferers are treated in Scotland—and to families across Fife.
After Toby’s treatment was, thankfully, successfully completed in 2018, which was fantastic news, Toby, Richie and Alison decided to keep going with that amazing work, and set up Toby’s Magical Journey as a result. I have seen first hand the support that Toby’s Magical Journey provides, both to those being treated and to their siblings and parents. It is doing absolutely amazing work, helping people at what is an incredibly difficult time. When restrictions were eased earlier this year, I spent a morning sorting toys and craft gifts for Halloween, and saw the consideration and co-ordination that goes into the purchases it makes. I am looking forward to hopefully joining its team again in the run-up to Christmas.
One of the key issues that Alison, Richie and Toby have raised again and again—indeed, all Members so far have highlighted this—is the challenges that children and young people face in getting a diagnosis in the first place. This was not actually the case with Toby, but for many parents of children and young people with cancer, achieving diagnosis is often an arduous first step. The pandemic has created added difficulties: coronavirus is now a complicating factor, and that is why debates such as this are so important. Thirteen children and young people are diagnosed with cancer in the UK every single day, and of those 13, three will sadly die. That is a huge number of families every year, and it is therefore so important that we as a society do all we can to raise awareness of the symptoms of cancer, and to support those families who have children and young people being treated for cancer.
We have had Breast Cancer Awareness Month, and we have just finished Movember. These campaigns do a great job of raising awareness of the symptoms of breast cancer and testicular cancer. We need to better promote Childhood Cancer Awareness Month each September, in order to raise similar awareness of the symptoms of childhood cancer—symptoms that are not well known, which means that diagnosis can sometimes come too late. That means for many children, the chance of survival is greatly reduced, and as the hon. Member for Strangford has said, cancers in young adults and their symptoms are even less understood.
As I touched on earlier, this problem has definitely been exacerbated by coronavirus. In Scotland, general practitioners’ surgeries are still not seeing patients, which means diagnosis over the phone. As we have heard, that is a real problem when it comes to the often obscure symptoms of childhood and teenage cancer. It is important that these young people can have a face-to-face session with a doctor. I hope the UK, Welsh and Scottish Governments will commit to this as an absolute priority, especially given the mass expansion of testing we are seeing and the prospect of future vaccinations. Thankfully, at the Royal Hospital for Sick Children in Edinburgh, those crucial treatments are still going ahead. Children are being covid tested, and one parent is allowed in—usually, that would be two. I pay tribute to the team there, who do such important, life-saving work.
I also pay tribute to Alison, Richie, Toby and their wider family, because childhood and young people cancer impacts the whole family, and to all at Toby’s Magical Journey—volunteers, etc.—for the support they provide to children and families, but also for the way they have adapted the support they provide during the period of restrictions. Where they would be holding craft activities for family groups, they are now buying the same supplies and posting them to families, and doing sessions remotely. They are still sending gifts to children in the ward at the Royal Hospital, and I am pleased to say that Father Christmas will be doing socially distanced visits and meetings.
It is a very challenging time and as with many other charities, fundraising has been limited by covid. There are a number of factors, but one that I want to highlight is that people are using cash far less than they were at the beginning of 2020—I know that certainly I am. We need to think about how we can enable charities to continue to best collect donations in an increasingly cashless society.
Without child and teenage cancer charities such as Toby’s Magical Journey, the experiences of families being treated for cancer would be far worse than it is. They provide vital support, but equally important is the voice that they provide to families and parents. Without parents like Alison and Richie, who have direct lived experience, child and teenage cancer services would be much the poorer.
Like the hon. Member for Strangford, I commend the work of the Teenage Cancer Trust. In Scotland, it contacts all children weekly by text, and young people can respond via coloured love heart emoji, depending on how they are currently feeling.
We should be aspiring for a system far better than the one we have: one in which parents not have to fight for their child or young person to receive a diagnosis or treatment. We can do much better than this. The work that people such as Toby, Alison and Richie are doing has hugely improved services and will continue to improve those services in the future. They are amazing, but they should not have to be amazing in some respects. They should not have to step in to advocate; we should be getting the system right in the first place. I am sure all Members here aspire to that.
On the issue of charitable giving, the Government have made it possible through gift aid that for every pound given, they will give an extra 25%. Does the hon. Lady agree that this could be raised better, to ensure charities receive that extra bit of money? Sometimes when giving money, if a person knows they will get more for it, it is a bit like investing money for the future as one pound is actually worth £1.25.
I agree that is arguably one of the opportunities of a more cashless society. If people are making a payment, the gift aid opportunities are potentially easier to access than with putting money in a box.
I appreciate that healthcare is a devolved matter, but I am still looking forward to hearing the Minister’s response because I am sure these challenges exist throughout the UK. Indeed, that is why the hon. Member for Strangford is the person who has secured this debate. We can also achieve much by pooling our healthcare expertise across the four nations. We should be making sure that in Scotland, Wales, Northern Ireland and England that we are following the best possible practice, which means raising awareness of symptoms, enabling swift diagnosis and ensuring that children, young people and their families are properly supported.
It is, as always, a pleasure to see you in the chair, Sir Christopher. I very much miss serving on the Procedure Committee with you all those years ago, but it is a pleasure none the less to see you this morning.
I congratulate the hon. Member for Strangford (Jim Shannon) on securing and opening the debate, and to see him back in his place after his period of self-isolation last week. He was very much missed last week in the debate that he had secured on the persecution of religious minorities. It is good to see him back in that seat—which I am sure he has probably got title deeds for now given that he is there so often.
This has been a very short but very enjoyable debate. The hon. Member for Strangford opened with a very passionate speech, as we would always expect from him, but in particular he spoke about that very poignant testimony from Alex. The hon. Member for Wakefield (Imran Ahmad Khan) spoke about young Daniel and that relationship that was struck by his father in hospital. I think hearing about three-year-old Ellis really moved us all. I cannot begin to imagine how difficult it must be for Ellis’s family as they work through losing a loved one. The hon. Gentleman has spoken very eloquently on behalf of his constituents and they should be incredibly proud to have him in here to be raising those issues, as he sits alongside the Minister.
Finally, the hon. Member for North East Fife (Wendy Chamberlain) talked about Toby’s Magical Journey in Cupar. I, too, pay tribute to Richie, Alison and Toby for that remarkable figure of raising £50,000 pounds, and it was great to hear that Toby got the all-clear in 2018. She raised an important point about the impact that the transition to a cashless society will have on charities. I hope that is something that we can tease out in the debate in Westminster Hall on Thursday afternoon about transitioning to a cashless society, particularly in the light of the covid pandemic.
On that point, covid-19 has dominated so many aspects of our lives. Much of the discussion around public health shows that it is still so vital to look after other aspects of our health and wellbeing during this time. That very much includes checking for symptoms and signs of cancer.
With your forbearance, Sir Christopher, I want to pay tribute to my colleague and my hon. Friend the Member for East Dunbartonshire (Amy Callaghan), who has been a tireless campaigner on the subject of cancer and young people. She is not just one of my colleagues in this place and my constituency; she is one of my closest friends. I congratulate her on her election as chair of the all-party parliamentary group on children, teenagers and young adults with cancer. I also pay tribute to this young woman who has survived cancer twice. As has been well documented this year, she has also been through other health challenges. This House is stronger for having the experience of people like her. I look forward to her coming back and, arguably, making a much better speech than I could ever do. I hope to do this justice on her behalf.
I also want to pay tribute more broadly to the work of the APPG. It has done fantastic work in raising awareness of the issues affecting young people with cancer and their families. The 2018 report published by the APPG, “Listen Up! What Matters to Young Cancer Patients”, looked into cancer patient experience for children and young people across the UK. That report found that 64% of respondents did not think enough was being done to create a positive experience for children, teenagers and young adults with cancer. It also discovered that 82% of young people and parents responding to the survey did not think that Government listened enough to the experiences of young people with cancer and their families.
The report offered several recommendations for helping teenagers and young people understand the symptoms of cancer, as well as for those facing cancer treatment. Those include compulsory lessons in secondary school on spotting the signs of cancer; designated hospital parking for children and young people with cancer; an agreement by the Government to meet yearly with young cancer patients to discuss their experiences; and offering access to free fertility treatment to survivors of childhood cancer, who are not offered fertility preservation before receiving cancer treatment. That report highlights that not enough has been done to support young people and their families through a challenging diagnosis.
It is important that young people know the signs and symptoms of cancer, although they may differ from person to person. The common symptoms are lumps, unexplained tiredness, mole changes, pain and significant weight change. For more information about the different symptoms and where to seek help, I advise people to go the NHS website, the CLIC Sargent website and that of the Teenage Cancer Trust.
A lot of young people have expressed worry that they are wasting doctors’ and nurses’ time, particularly during the coronavirus pandemic. I get incredibly frustrated, as a constituency MP, when people say, “I don’t want to bother the NHS or go to my GP, because they are really busy.” One of our privileges in this place is to have the voice to get this message out to our constituents: “If you are experiencing any of those symptoms, please do not worry about bothering your GP or the health service, but go and get it checked out.”
I want to reassure young people that if they have any of those symptoms or if they are worried about their health, they will be listened to and taken seriously. The NHS, in whatever part of the United Kingdom, is and always will be there for everyone. That is something we have certainly learned during the course of the pandemic. Despite the pandemic, the NHS continues actively to encourage people to contact their GP if they are worried about possible cancer symptoms. If the symptoms lead to a diagnosis, early diagnosis and treatment are really important and can improve the outcome for many young people.
I want to highlight the fantastic work of CLIC Sargent and the Teenage Cancer Trust, both of whom act jointly as the APPG’s secretariat. Understandably, for many families, when a young person receives a cancer diagnosis, it can be a very scary and confusing time. From doctor’s appointments to new treatments, the process can be overwhelming for young people. Those organisations offer advice to help young people and families to adjust to the cancer diagnosis and the treatment that follows. The Teenage Cancer Trust offers people advice on how to speak to doctors if they are feeling nervous, details of the different symptoms and case studies of teenagers and young people who have experienced treatment during the pandemic. CLIC Sargent is also a great resource, providing guidance for navigating clinical care, granting financial support and helping young people with the emotional impact of illness. Both organisations have new information around how to manage cancer during the covid-19 pandemic. Clearly, the public health crisis creates new challenges for patients, but there is still support available to help young people through this challenging time.
This year, the covid-19 pandemic has thrown unprecedented challenges at us all. From facing the virus itself to the huge financial insecurity that many people have experienced, to the restrictions and lockdowns taking us away from our loved ones, it has undoubtedly been a tough year for many of us. I say that after my grandfather was cremated yesterday. One of the hardest things that I have experienced during this pandemic was limiting the number of people at his funeral to 20. It has been incredibly, incredibly cruel from a public health point of view, and I think we would all agree that this has been such a difficult year for us.
This debate has highlighted that the teenagers and young people facing a cancer diagnosis and treatment during this time are facing even more challenges, but support is out there. Whether it be from the APPG, the NHS, CLIC Sargent or the Teenage Cancer Trust, there are people out there to offer information and guidance. It is vital that all young people check for the signs and symptoms of cancer. To reiterate, they are: lumps, unexplained tiredness, mole changes, pain and significant weight change. If a young person is experiencing these symptoms, I urge them to contact their GP. An early diagnosis will lead to the best outcome. Facing cancer as a young person can be incredibly scary and overwhelming and I pay tribute, above all, to all the young people undergoing treatment for cancer diagnoses. I thank their families, their carers and the NHS, who are working so hard to support them.
It is a pleasure to serve under your chairmanship, Sir Christopher. I thank the hon. Member for Strangford (Jim Shannon) for securing this important debate. He works hard through the Backbench Business process to get important debates either on the Floor of the main Chamber or here in Westminster Hall. I think he has chosen very wisely in this one.
I know that all Members in the room have a personal commitment to this issue. My childhood experience of cancer was the death of my father just before my third birthday, and that stays with me and my family, 33 years on. I am here to speak up for my community, but also to fight on this issue so that across the country, there might be fewer families like mine. We are well served in that regard with the Minister, and her personal commitment to this issue is something that we all look to.
Similarly, when it comes to the Scottish National party, it always great to see the hon. Member for Glasgow East (David Linden) in his place. We always learn from his contributions, and also from those of his colleagues, such as the hon. Member for Central Ayrshire (Dr Whitford); with her enormous professional experience, she always adds to the debate. The hon. Gentleman mentioned his colleague and friend the hon Member for East Dunbartonshire (Amy Callaghan). I am sure she is watching, and I know the hon. Member for Glasgow East will pass our best wishes on to her. We can see that across this Chamber, there is a high level of commonality in our views about what must be done for young people. Between us, I am sure we can move forward on this important issue and make an impact.
I agree with so much of what the hon. Member for Strangford has said that throughout my speech, I will be reiterating the points that he made. Unlike him, I did not have a point to make on schooling, which is very important. Whatever challenges our children face in their lives—because of their socioeconomic background, their health, or whatever makes them different from their peers; everything makes a child different in some way—we must ensure that we are no less ambitious about their educational outcomes. We must meet their health needs in the short term, and then be ambitious about their futures so they can reach their potential. That is a cross-party theme; no one has ownership of it. It is important that we remain ambitious about the broader outcomes of children and young people who are suffering from cancer, so that—fingers crossed, and all that wonderful support willing—we can help them to resolve their health challenges and they can go on to live really full lives.
I refer to the poignant personal experiences described by the hon. Member for Wakefield (Imran Ahmad Khan). If he is still in touch with Daniel’s family, I hope that they can take comfort from the fact that Daniel’s story has been heard and his life recognised. The hon. Gentleman’s moving contribution will stand as a testament to Daniel in Hansard for centuries, and I hope that the family get to see it. I agree with what the hon. Gentleman said about early diagnosis, and I will refer to that theme shortly.
On covid-19, the hon. Gentleman said that the cure must not be worse than the disease. I understand that, but if we do not put restrictions in place and we do not control the virus to the degree to which we are able, our NHS will not be able to do anything else because it will be overwhelmed. I do not think that treating cancer and treating covid are in tension, and I hope we do not lose sight of that in the debate that we will have later today.
The hon. Member for North East Fife (Wendy Chamberlain) made points about cashlessness. We are all looking at how covid will change British life and our own lives. I was thinking about cashlessness only this morning as I beeped on to the tube. I have had the same £10 note in my wallet for months, and it is hard to think when we will use cash again. I have to say that such change makes me a little anxious—that might just be something in me—especially when I think about my constituents. For me, beeping in is great and doing stuff on apps on my phone while watching the telly is brilliant, but for lots of people in my community, cashlessness would be their worst nightmare. We tend to think about it in those terms, but the hon. Lady talked about how we might embrace the opportunity to get better outcomes, and how we might all take into these new times the spirit of putting money into charities’ collection boxes. Those points were well made. Importantly, I am sure that those whom she works with at Toby’s Magical Journey will have seen that their contributions and their wonderful work have been recognised today. I will come back shortly to the point about getting an early diagnosis.
I have spent eight months as shadow public health Minister, and it has has been a non-stop procession of virtual calls. The fact that it has been eight months may remind you that it feels simultaneously as though this pandemic has been going on forever, and as though it only started yesterday. The sense of time and space is strange. Sometimes, the virtual meetings can blend in together—I think I can say that without that sounding rude—but one really stood out, and that was when I was lucky enough to meet the Teenage Cancer Trust youth advisory group. I heard from four incredible people who had all experienced cancer at a young age, and they shared with me their unique and personal experience of this horrific disease. What they said was eye-opening and quite hard to hear at times. It was so inspiring that those four young people, who have fought or are fighting cancer, have chosen to use their experiences to fight the greater fight for others like them. That has had a great effect on me and informed my work.
Those young people talked about the scale of the problem that we are dealing with. We know that every year, 2,200 15 to 24-year-olds will be diagnosed with cancer. Lymphoma will be the most common—about a third—the next most common will be carcinoma of the thyroid, cervix, ovary, bowel or breast, at a little bit less than that. Survival rates are improving. That is something we should recognise, and we should be pleased and optimistic about it. We know that 82% to 85% of teens or young adults diagnosed with cancer will now survive for at least five years, but that is still in the context of the fact that nearly once a day a young person will pass away from cancer. That is the level of seriousness of this debate. Cancer in young people is rare, thankfully, but it is the biggest killer by disease, and the 2,200 15 to 24-year-olds diagnosed each year face mammoth challenges. We in this place cannot make that go away, although we wish that we could, but we have a responsibility to make sure that the best services are in place to meet their health needs directly and to provide support. I know that we are all committed to that.
The hon. Member for Strangford talked about the wide variety of challenges our young people face; everyone goes through them, even if they do not have to deal with this disease. I am just about young enough to remember some of them, whether social, emotional or physical. The idea of combining them with the physical and mental burdens of dealing with cancer is quite unimaginable. As we know, the normal challenges faced by young people are not sidelined in that situation; dealing with cancer just adds to and compounds them.
The experience that the TCT youth advisory group shared with me highlighted one of the biggest issues that young people with cancer face, and that is diagnosis. As multiple hon. Members have said, that is something that those young people face before they even know they have cancer. Cancer is often not the first, second or even third suggestion for what their healthcare challenges might be, and we know that young people are the most likely age group to present three or more times before they are diagnosed. That is backed up by studies that show that rarity can lead to doctors being unfamiliar with some of the symptoms that are presenting. A compounding factor is that, as the hon. Member for Strangford said, this age group is the least likely to take to a doctor concerns about their bodies. That can often go on for more than a year. Although the challenges that we face are understandable, we should not accept them. Rarity is not an excuse for us to not be really focused on the issue, and to want to do something about it.
I know the Minister will want to do that, and I look forward to hearing her contribution. I hope she can address a couple of issues. I am particularly keen to understand what steps the Government can take differently to increase awareness of cancer, not just among young people, but also among healthcare professionals, doctors and the wider healthcare system. We know those people are doing their best, so what can we do better to make sure they have the right information and awareness to recognise it more quickly? The hon. Member for North East Fife mentioned Childhood Cancer Awareness Month, and I think we could all do more during that month.
I am keen to hear the response to the question asked by the hon. Member for Strangford about what can be done to get waiting time statistics broken down by age, and I will explain in a second why that is particularly personal. The current situation masks the true extend of the problem and restricts our ability to understand it.
That leads on to my point about the impact of the coronavirus. I have raised this at three of the last four Health questions. Dealing with the cancer bubble of delayed diagnosis and delayed care is critical to improving our health services and making sure we do not add to the terrible loss of life from covid a series of other lives lost to cancer. Young people are particularly at risk in that regard.
In the short term, I cannot even imagine how scary it must be to deal with cancer at a young age during this period of time, because all the support systems that would normally be there are more difficult to access, and they must be accessed virtually rather than person to person. That is really challenging. The long-term issue is around waiting times. In the first lockdown, referrals dropped dramatically, as people stayed home to protect themselves and others. That means that lots of undiagnosed cases of cancer are out there, many of which will be among young people, who were already less likely to seek medical attention or be diagnosed quickly. That is a potential added factor that may make outcomes for young people worse. As cancer services are restored, we really need a sense of what we are doing differently to deal with the bubble for young people in relation to those extra factors.
The hon. Gentleman is making some important points. There is a build-up of young people, children and young adults who have not had a diagnosis or the chance to get treatment because of covid-19. Does he think that in the Government’s policy and strategy decisions, resources must to be set aside to address the long list of people who need diagnosis and treatment, and that resources must be in place for staffing as well?
I agree with the hon. Gentleman. We will have to do something differently to catch up. When we talk about restoring cancer services, that does not mean restoring them to how they were in January. I know there will be a debate tomorrow morning on ways in which we can make those treatment pathways better. I think the wise thing to do is to focus on those groups on whom the impact is worse, and young people are one of those groups. Before I finish, I ask the Minister for her assessment of what the second lockdown has done to referrals and waiting times. When that was discussed at Health questions the week before last she was relatively optimistic about it, but I would be keen to know more. Particularly, we had a period between lockdowns where services will have been getting back to normal. Do the Government feel that we have learned any lessons from that about restoration of services, particularly for young people?
I want to conclude by saying, as have all Members who have taken part: if any young person, or indeed anyone at all, who is watching this is worried about possible symptoms, such as hacking cough, blood in the stool, or a lump or bump that they do not recognise—whatever it is—they should please not think that we are distracted by fighting the coronavirus and that they should therefore not present in the normal way to the health services. Do it—ideally this morning, or, if not, this afternoon or tomorrow morning. Whatever the earliest opportunity is, please do it, because the services will be there for you.
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.
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?
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.
I thank the Minister for the wee reminder of that TV programme. We have seen the adverts for Great Ormond Street Hospital—and other hospitals as well—where, when the child has finished their treatment, they ring the bell. That is an incredible finale. It is a wee salient reminder to us all that we have a wonderful NHS—a wonderful health service—and that it can make changes in the lives of young people.
I thank all hon. Members for their contributions and personal stories. Everyone has a personal story and everyone has shared their story with us today. It reminds us all of the heartache that others go through, even though we, personally, are fortunate not to have travelled that road. I believe that we, as elected representatives, have a responsibility and a duty to deliver on behalf of those people. I thank each and every Member for sharing their wonderful stories—what a reminder for us all.
I also thank Members for raising awareness, which we will continue to do. The Minister and every hon. Member is right to continue to do that. The hon. Member for North East Fife (Wendy Chamberlain) is absolutely on the ball on the issue of charities and how we can help them.
I welcome the Minister’s commitment to the review of clinical tests. I understand the reasons in relation to personal data. I also welcome her other comment on being able to pick up the phone and get reassurance—it is so important that people do that.
I look forward to working together. I have said often, and I think we all agree, that the House always shines better when we agree on the subject matter. This morning, we have all agreed on the matter and are all very pleased at the Minister’s response. I am not just saying that; I really think that her response was excellent.
Question put and agreed to.
That this House has considered the matter of raising awareness of signs and symptoms of cancer in teenagers and young adults.