(2 years, 7 months ago)
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Dame Caroline Dinenage (Gosport) (Con)
I beg to move,
That this House has considered improving outcomes for childhood cancer.
I am grateful to the Backbench Business Committee for allowing us this debate, and to all the medical professionals, scientists, charities and, above all, the bereaved parents who have helped to inform it.
This debate is in honour of Sophie Fairall. Sophie was just 10 years old when she died last September, 12 months after having been diagnosed with a very aggressive form of cancer, rhabdomyosarcoma. During her illness, Sophie created a bucket list. It included lots of fabulous things. She wanted a pair of high heels and she wanted to cook with Gordon Ramsay. But Sophie’s list was very special, because she also wished for improvements in the way we look after others who were in the same position that she was. She wanted better play facilities for children in hospital wards. From her bed she painted ceramics, which were sold to raise £6,000 to buy new toys for her ward. Most hospitals only have play specialists at very limited hours. No data is even collected on the numbers of play specialists working in the NHS. So, on Sophie’s behalf, I ask the Minister to look at the provision of play specialists.
Sophie also wanted better hospital food for poorly children. She was worried about the parents who spent hours at the bedside and often did not get to eat at all. Often during her own treatment Sophie felt poorly at set mealtimes. Later, when she was feeling a bit better, there was no capability at the hospital to make her anything to eat. That is little surprise, because in Portsmouth hospitals the meals get sent from Wales, 200 miles away. In October 2020, following a review led by Prue Leith, the Government launched a new blueprint for hospital food. Can the Minister provide an update on how that work is progressing and how they plan to ensure nutritious, child-friendly food that can be delivered flexibly during children’s treatment in hospital?
After Sophie’s death, her fantastic mother, Charlotte, vowed to continue to highlight all the failings and missed opportunities she experienced in how we research, detect, treat and care for children with cancer, and how we improve cancer outcomes. Charlotte Fairall is here today and I pay tribute to her determination and devotion to that cause. [Hon. Members: “Hear, hear.”] I want to start with a spoiler alert for the Minister. Today, I am going to be asking for a new childhood cancer mission, a concerted effort to bring together the very best in research, genomics, training, treatment, philanthropy, medical and allied health professionals, the brightest and the best, to really change our approach to childhood cancer once and for all.
Childhood cancer is often referred to as rare, but it is the biggest killer of children under the age of 14. In this age group, there are around 1,800 new cancer cases every year. One in 320 people will be diagnosed with cancer before their 20th birthday, and 12 children and young people diagnosed every single day in the UK. How can that be described as rare?
The most overwhelming concern is around diagnosis. Early detection is the next frontier in adult cancer and for children it is even more vital, yet for so many children that diagnosis comes far, far too late. Sophie had suffered for a few months with tummy problems. The GP first suggested Gaviscon and then that it could be irritable bowel syndrome, but when Sophie started bleeding her very worried mum was advised that she might have started her periods. Sophie had just turned nine. By the time her worried parents took her to accident and emergency, the paediatrician found a 12 cm tumour in her little tummy.
Sophie’s story is not unusual. Over 53% of childhood cancers are picked up through A&E rather than through primary care, compared to 22% of adult cancers. In terms of diagnosing advanced cancer, as a nation we rank near the bottom of the European league tables. There is little or no training for general practice and let me reiterate that we are talking about the biggest killer of children under the age of 14. There are also no national referral guidelines for GPs with concerns that a young person may have cancer. A local GP from Gosport, who has practised for over 30 years, told me that he has no specific training on childhood cancer and would readily attend any training available. The Government are investing in 100 new diagnostic centres, but there must be robust referral guidelines in place, specifically regarding children, to help ensure that that improves the diagnosis of paediatric cancers.
The game changer would be paediatricians in primary care, which so many other countries have. Until then, we need childhood cancer training for healthcare professionals. We need national referral guidelines specifically for children, and we need an education campaign for parents on the signs and symptoms of childhood cancer. I know that is not straightforward. There are 88 types of childhood cancer with various symptoms, but we only need look at the success of the training and publicity surrounding the signs and symptoms of meningitis, which has seen numbers fall, with 461 cases of meningitis last year and 30 deaths. It is time to do the same with childhood cancer.
Hilary Benn (Leeds Central) (Lab)
I congratulate the hon. Lady and colleagues on securing this debate. She is making an outstanding case. One of the cancers that affects children is brain cancer. If we take glioblastoma, the five-year survival rate for children is only 20%. I am sure she recognises that not only do we need improved diagnosis—the point she is making—but more research. That is what the Tessa Jowell Brain Cancer Mission is about: more research to understand the make-up of those cancers, so we have more effective treatment and more children may survive.
Dame Caroline Dinenage
The right hon. Gentleman is absolutely right. I shall talk about research in a moment, but childhood cancer research is currently the Cinderella of cancer research and we need to do much more to address that.
Once a child has been diagnosed, the gruelling process of treating the cancer begins. Between 1997 and 2018, only 18 new drugs were approved for 22 paediatric oncology indications, and they were generally for quite specific or relapse cases. That means many children are often given the same treatments as adults—incredibly aggressive chemotherapies and radiotherapies—and in many cases children’s treatments have not changed for decades. Even if the cancer is beaten, the child’s body is often so ravaged by the treatment as to leave long-term impacts from which they may never recover.
John Lamont (Berwickshire, Roxburgh and Selkirk) (Con)
My hon. Friend is speaking remarkably passionately about this important issue, about which many of my constituents have been in touch with me. They include Julie and her son George, and Leah and her son Toby—both children are suffering and living with cancer. Does my hon. Friend agree that much more needs to be done when children finish the course of treatment to support not only the child but the family, in terms of their recovery from the physical and emotional impact of the treatment?
Dame Caroline Dinenage
My hon. Friend makes an excellent point: there is such a huge impact on families who support a child through cancer and we need to look at how we support them in the round.
I have heard from parents of children who are known as cancer free—so they are probably counted as a success statistically—yet some of them are still in hospital because of the disastrous impact of the treatment itself. Very many survivors are left with long-term hormone deficiencies, some of which are life threatening. Survivors can also experience neurological, behavioural, cognitive and visual impairment. The St Jude Hospital in the United States takes an annual survey of former patients. By the age of 50, they all—100% of them—have life-altering health issues, from fertility issues to severe neuro-disability. I would love to know whether similar surveys happen here and whether the conclusions are the same.
As other Members have said, it is vital to find better treatments specifically for children, which means better research is vital. Children’s cancer is fundamentally different from adult cancer in that so much of it is developmental rather than environmental. The good news is that progress is within our reach—there is so much potential in immunotherapy and genomics—and the even better news is that the UK has a fantastic research community and the most comprehensive database of childhood cancer genomes anywhere in the world. The bad news is that paediatric oncology research is the absolute backwater of cancer sciences. It does not have the focus, the money, the public relations or the prestige of other forms of research. Until there is a concerted effort to change that, children like Sophie will be failed.
I expect the Minister to tell me today that great progress has been made on the cancer survival rate among children. Seventy years ago, children simply did not recover or survive a cancer diagnosis; now around 80% do. But the figures belie the fact that for many cancers, including the rhabdomyosarcoma that killed Sophie, the survival rate is as low as 20%. For another cancer, DIPG—diffuse intrinsic pontine glioma, which is a form of brain tumour—the survival rate is 0%. It is literally a death sentence. Can you imagine being that child? Can you imagine being that parent?
There is no doubt that research investment drives survival rates. Since 1960, the survival rate for childhood leukaemia has improved from 10% to 80%. By contrast, only two multinational clinical trials have ever taken place for rhabdomyosarcoma. With only 60 cases diagnosed in the UK per year, there is very little scientific evidence or appetite to develop and complete clinical trials. It is of no interest to big pharma. So we need to look much more imaginatively at how the National Institute for Health and Care Research can encourage more research in such types of cancer.
We also need to look at how new treatments can be brought forward much more quickly. I met Kevin and Karen, who lost their son Christopher just days before his sixth birthday from an aggressive form of brain tumour. They raised concerns about the EU paediatric regulations, which they feel are outdated and do not reflect the latest technological advances. Now that we have left the EU, we have the opportunity to produce new legislation that will incentivise world-leading pharmaceutical products, especially for children, and we need to take that opportunity.
Today, I ask the Minister to start a children’s cancer mission. We have seen from the incredible work on brain cancer inspired by our much-loved former colleague Tessa Jowell how much progress can be made when we are galvanised to bring together the best of Governments, charities, research, academics, medical and science into centres of excellence.
Steve Brine (Winchester) (Con)
My hon. Friend is speaking beautifully and powerfully, as always. When the late Baroness Jowell came to see us at the Department of Health, we got the clear impression that she would not take no for an answer. She recognised that although research funding was important, the thesis around which the research proposals were then taken forward was the key. She galvanised the brain cancer and tumour charities into bringing that forward, and that has revolutionised the number of proposals on which they conduct research. Does my hon. Friend agree that we need to do that across the board in cancer, but specifically in paediatric oncology?
Dame Caroline Dinenage
My hon. Friend makes an excellent point. I know that, as a former Minister responsible for this issue, he cares about it deeply. I want to bring everybody together in centres of excellence to make sure that we can galvanise everything to that point. I assure my hon. Friend that we will not take no for an answer either.
I am keen for the Government to look at progress in the Netherlands, where the Princess Máxima Centre for paediatric oncology has brought together the care for children and their families, scientific research, and an academy for health professionals, all under one roof, along with a foundation. The centre has a mission: to cure every child with cancer with optimal quality of life. The Government’s 10-year plan for cancer is a once-in-a-generation opportunity to move the dial on cancer outcomes. Will the Minister agree, as part of that work, to look at a children’s cancer mission? Will she bring together a working group of paediatric oncologists, charities, parents and young cancer survivors to formulate a plan to drive forward the work on how we detect, treat and care for children with cancer?
Several hon. Members rose—
Madam Deputy Speaker (Dame Rosie Winterton)
Order. I am sure colleagues will understand that, as this is a two-hour debate, I will have to set a time limit. I shall start with a four-minute limit, of which I have advised the first speakers.
Mark Tami (Alyn and Deeside) (Lab)
Leukaemia is the most common cancer in children. For most, the treatment will be chemotherapy and, more recently, the use of targeted therapies such as CAR-T. The treatment will take place over a number of years and there will be many bumps in the road in what is a very difficult journey.
I will never forget the phone call from my wife 15 years ago telling me that our nine-year-old son had leukaemia. For us, it soon became clear that the only route open to us would be a stem cell transplant. We were very fortunate that we found a donor for our son, but far too many children—particularly those from non-white backgrounds—are still not as lucky. There have been great improvements in recent years, but a lot more work still needs to be done.
The transplant process is not easy, involving radiotherapy and isolation to try to avoid infection as the immune system is so weakened, and then there are the post-transplant effects which, in the worst cases, can involve graft versus host disease, which can kill the patient, as well as infertility, premature menopause, fatigue, muscle problems, a higher chance of secondary cancers—I could go on.
We are making medical advancements, and some of the treatment is now far less severe than it was those 15 years ago. But that is the physical side of the illness; what of the psychological issues that children who have had cancer treatment will almost certainly face? About three-and-a-half years ago, I had a debate in this Chamber on this very subject, highlighting what I thought were the problems. Regrettably, those problems are still there today and, with covid, have arguably got worse.
Chris Elmore (Ogmore) (Lab)
A constituent of mine, Richard Case, lost his son Cian two years ago. Two years ago, I had a debate in this Chamber—the hon. Member for Winchester (Steve Brine) responded for the Government—on international research for children with childhood rare cancers, and looking at how the G7 and the G20 could focus on global research and innovation in tackling childhood cancers. Progress has been limited. Does my right hon. Friend agree that it is time that finding cures for childhood cancers was a global research priority?
Mark Tami
I agree, and I think that vital work needs to be carried out now.
Fundamentally, psychological support should not be an add-on. It is not something that we should have to seek or press for our children to receive; it should be part and parcel of the overall treatment programme. For many people, it is about coming to terms not only with the treatment, but with the fear that the illness could come back again. That is a hell of a pressure to be put on a young person.
Young people may also find it difficult to talk to their own families about some of these issues and the concerns they have. That is why professional counsellors and clinical nurse specialists can play an important role in this respect. Reintroduction into school, for example, can be a traumatic experience for young cancer patients, as well as for their classmates, because they might look very different from when they left the school. I remember a young girl telling me that the worst part of what had happened to her was not the treatment, but the fact that she lost her hair—coming to terms with that is very difficult.
Tracey Crouch (Chatham and Aylesford) (Con)
On that point, will the right hon. Gentleman take this opportunity to congratulate the Little Princess Trust, which takes donations of hair to create wigs for children? Quite often, it is other children who donate their hair to make those wigs. It is a great charity, and I hope that many people will acknowledge it.
Mark Tami
I agree. It is so important to help young people feel as normal—if we can use that word—as possible. I have always been struck by how important the hair issue, and having fit-for-purpose wigs, is to girls in particular—in some circumstances the wigs are not very good.
As has already been touched on, support should be available for family members of young cancer sufferers. I remember when everyone would phone up all the time and ask how my eldest son was, but no one would ask how his younger brother was. They were not being mean; it was just that their focus was on that child. During the whole treatment process, there is a financial cost to travelling to and from a specialist centre, and for some the choice is between employment or caring for their child. That is the choice that a lot of people have to make, so there are enormous pressures there. I found it particularly helpful to speak to a nurse from CLIC Sargent—now known as Young Lives vs Cancer—who would come round to give my son his treatment. She understood how you felt, and it was good to have an honest discussion with her about some of the issues you were facing.
I think we need to place psychological support on an equal footing with addressing the physical treatment of childhood cancers, with equal access to support, not as an afterthought or an add-on, but as part and parcel of the process, from diagnosis to dealing with the long-term effects.
Holly Mumby-Croft (Scunthorpe) (Con)
I thank my hon. Friend the Member for Gosport (Dame Caroline Dinenage) for her work in securing the debate. I pay tribute to the right hon. Member for Alyn and Deeside (Mark Tami) for sharing his personal insight into the situation with the House. This subject is incredibly important, and I know that we will hear further contributions from Members across the House, emphasising that the issue affects us far and wide across the country and in the communities that we represent, and highlighting once again how devastating cancer can be.
Cancer is a horrible disease. Of course, we all know the statistic of one in two people suffering some form of cancer during their lifetimes. We would be hard pressed to find anyone in this House who has not been affected by that devastating and cruel illness in one way or another. It is that much more devastating and cruel when it makes a child poorly.
I was recently contacted by my constituent Laura, who explained the impact that cancer had had on her family. I have the privilege, with Laura’s permission, to say a few words about how this terrible disease has affected her and her whole family. Laura had a daughter called Ebony. Many people in Scunthorpe will know Ebony and her story. In 2016, just before Ebony’s 10th birthday, the family noticed that she had a swelling on her arm. As many of us would, they assumed that she had perhaps had a bump in the playground and that it would get better, but unfortunately it did not. After a trip to the GP, Ebony and her mum went to a Sheffield hospital, where she saw a specialist and had a scan, and they heard the terrible news that no parent ever wants to hear: that Ebony had cancer. I cannot imagine how that felt, and I know hon. Members on both sides of the House share that.
The cancer Ebony had was rhabdomyosarcoma, a rare type of cancer that can affect soft tissue. It can affect anyone of any age but, sadly, it most often affects children, and the form she had was particularly aggressive. Of course, Ebony underwent treatment, which was horrendous for her and horrendous for her family. Despite the fact that that was very difficult, Laura tells me that she remained a very special and caring girl all the way through her treatment. She remained brave even when her hair fell out.
I did not have the opportunity to meet Ebony, but it is clear that she was a remarkable person. She got to ring the bell twice after her rounds of chemotherapy were complete. While she was undergoing treatment, one source of joy for Ebony and her family was that she was going to be a big sister. She was so excited that she could not wait to meet her little sister and even picked out a name, Ella. In September 2019, the family were given the news that the cancer had returned and had spread to Ebony’s abdomen. She made the decision not to continue treatment and she passed away on 24 January 2020.
I sit on the all-party parliamentary group on brain tumours, and we discuss these issues all the time. I will quickly raise some of the issues we hear about from the specialists and clinicians we talk to: the significant challenges they face in accessing the money the Government have allocated for research into brain tumours. It is costly in time and resources to make those applications. I urge the Government to do all they can to remove the bottlenecks that those clinicians face and to ensure that they get proper feedback when applications are unsuccessful, so that they can access the funding and find the hope that we need to give to young people suffering from this devastating disease and to their families.
Ms Anum Qaisar (Airdrie and Shotts) (SNP)
I begin my contribution to this important debate by extending my sincere congratulations to the hon. Member for Gosport (Dame Caroline Dinenage). She was very eloquent in speaking of Sophie’s legacy.
In the past few weeks I have been speaking to my constituent Nadia Mahjid, who lives in Airdrie and whose son Rayhan sadly died from a brain tumour. I asked Nadia what she wanted me to say, and she asked me to tell his story. These are her words:
“Rayhan Majid was a happy, sweet and caring four-year-old boy… He loved sports and all things yellow including the Transformers Bumblebee and the Minions.
Rayhan was born in June 2013 in the midst of a heatwave and when he arrived, everybody remarked that he had brought the sunshine with him.”
Rayhan was
“always an active and healthy boy who was rarely unwell however, in October 2017, he started having severe headaches and sporadic episodes of vomiting.”
As with Sophie, GPs did not detect anything and it was not until Rayhan was taken to A&E, in his case six weeks later, that the decision was taken to conduct further tests. Sadly, an aggressive and cancerous tumour was detected in his brain:
“At that point the tumour had already grown…and as a result it was not able to be completely removed during surgery.”
Nadia says that,
“the aggressive surgery left our son Rayhan unable to talk, walk or swallow”,
and that he
“had to have a second surgery to have a shunt permanently inserted into his brain to prevent fluid build up.”
Devastatingly, however,
“the tumour re-grew and spread immediately after surgery even before radiotherapy and chemotherapy was commenced…it was decided to press on with the original treatment plan. Our Rayhan underwent 6 weeks of radiotherapy at the highest dose permitted for a child his age.”
The radiotherapy
“had no positive impact on Rayhan’s cancer either, a post treatment MRI scan showed the disease to be present and even more widespread than it was to begin with. The final treatment offered for our son Rayhan was high dose chemotherapy… A few hours after receiving his first dose of chemotherapy drugs, Rayhan’s heart rate and breathing started to be negatively impacted as well as him developing an allergic reaction to one of the many drugs he had received that day.
Rayhan tragically died a cruel, slow and painful death over the course of the 5 days of chemotherapy treatment, at the end our son was completely paralysed and unable to talk or even blink his eyes.
Rayhan was our ‘little ray of sunshine’. His light was cruelly extinguished by a relentless disease”.
I have a number of questions for the Minister, but she graciously offered to meet me after I wrote to the Prime Minister, so I will ask just one as I am pressed for time right now. Does she accept calls from Cancer Research UK that the UK Government should commit to maintaining a regulatory environment that facilitates international cancer studies, including a commitment to maintain the UK-EU data adequacy agreement and the compatibility of UK and EU trial regulations?
Zarah Sultana (Coventry South) (Lab)
I thank the hon. Lady for giving way, especially as she is giving such a heartfelt, passionate speech on behalf of her constituents. Ben was a young Coventrian who tragically passed away aged seven after just one year following his diagnosis with a rare childhood cancer—alveolar rhabdomyosarcoma. In his memory, his parents set up Pass The Smile For Ben, raising funds for treatment and research into rare childhood cancers. Will the hon. Lady join me in paying tribute to Ben’s parents, Sarah and Scott, and echoing their call for more funding and better treatment for children with rhabdomyosarcoma?
Ms Qaisar
I thank the hon. Lady for her intervention and I completely agree.
Every year in April, the month that Rayhan died, the neighbours of Rayhan’s family decorate their street in yellow, his favourite colour. His nursery has a bench to commemorate him. Rayhan was, and is, a much-loved boy. He died four years ago this month. This was a tribute from his mum, Nadia, on the anniversary of his death:
“When you were born you brought the sunshine with you and when you left, the colours drained out of our lives and this world has not been the same since.
You had to experience many things in your short life here that no child should ever have to, and many adults do not even experience in a lifetime.
We hope wherever you are it is worlds apart from all the pain, procedures and trauma you had to endure here and that we couldn’t protect you from.
We hope that in your new world, you are healed, happy and free to play, run and be a child again.
We are sure that you will be lighting up the heavens with your brilliance, that your laughter is echoing through the gardens of Jannah, that you are surrounded by friends aplenty and that you are having the most amazing, wondrous time, seeing and doing things that we cannot even imagine.
We love and miss you beyond measure Rayhan. Your Dad, your big brother, your little sister, all your family and I.
We include, remember and honour you everyday and we will never let you be forgotten. You are still our boy and the heart of our family even though you are not in the same world.
Our beautiful little Ray of Sunshine, our darling child, we miss you always, we love you forever.
4 years with you didn’t feel like enough, yet 4 years without you has felt like a lifetime.
Rest in Peace our darling boy.”
Rob Roberts (Delyn) (Ind)
Jordan Giddins, or Giddo to his friends, from Flint in my constituency was 18 years old when he died, and tomorrow marks the fifth anniversary of his passing. At age 11, he became unwell with a mystery virus, and little did he or his family know that it would be the start of a seven-year battle with a deadly illness. It was determined that Jordan had HLH, a very long name that I will not mispronounce, which is a very rare blood condition that usually impacts infants and young children. Jordan attended Alder Hey Children’s Hospital in Liverpool and had various courses of steroids and chemotherapy, which seemed to be working. He was eventually able to return to school, catching up on the time that he had missed, and starting his life once again.
Nine months later, sadly, he suffered a relapse which the doctors said could only be cured by a bone marrow transplant. At this point, he was just 13 years old. His sister Beth was 16 and she was a match. No greater gift could a sister give to her brother than a life-saving donation. But four years later, it was something as innocuous as having a slight pain in his shoulder that got worse that eventually led to a scan which uncovered a golf- ball-sized mass on his ribs. A further biopsy was carried out which confirmed that it was Ewing sarcoma, another very rare form of cancer which mostly affects children and young people. It all started again, even more intense than before. The regime for the treatment of Ewing sarcoma, as my hon. Friend the Member for Gosport (Dame Caroline Dinenage) said, is more than 50 years old. Mandy, Jordan’s mum, is a nurse practitioner. In her words:
“I’ve never seen anyone suffer like he suffered with this treatment”.
It is basically giving adult-level chemotherapy to children, and their bodies just cannot cope with it.
Jordan celebrated his 18th birthday hooked up to a drip in hospital. Still upbeat, as was his way, he was making so many plans for the upcoming year—a music festival and a lads’ holiday with his friends—but over the Christmas period in 2016, he became unwell again, and the relapse was confirmed in January. There was no relapse protocol and, after a couple of experimental treatments, he passed away on 27 April 2017.
Mandy talked about her anger that we are still using treatment protocols from 50 years ago on children. She paid tribute to staff in Glan Clwyd Hospital in north Wales, Alder Hey Children’s Hospital in Liverpool and the specialist cancer centre in Clatterbridge on the Wirral.
As my hon. Friend mentioned earlier, the problem is one of research. They say that childhood cancer is rare, and it is. Childhood cancer accounts for less than 1% of all cancers in the UK. It is easy to talk about in those terms—1% is nothing—but that 1% is 1,800 new cases diagnosed every year in children aged between 0 and 14: 1,800 sons and daughters who go through devastating and punishing treatments, and 1,800 families with constant anxiety about whether their son or daughter will become part of those statistics. It is one child in 500. Suddenly, it does not seem so rare at all.
Jordan’s passing did not end his story. Jordan—or Giddo, as he was known—had the gift of brightening up the lives of the people with whom he came into contact. The charity, Giddo’s Gift, has been set up in his name to provide gifts to make the lives of people suffering as he and his family did a bit more bearable. Since 2018, Giddo’s Gift has granted 176 financial wishes along with 23 bereavement grants. That is £112,000 in total, and I am proud to report that the local community in Flint has raised £263,000 and counting. My plea to the Minister, who I know is extremely big-hearted and cares deeply about this issue, is to sit with these families, hear their stories and make sure that no parent ever has to bury their child again.
Ian Paisley (North Antrim) (DUP)
I congratulate the hon. Member for Gosport (Dame Caroline Dinenage) on how she introduced this debate today. Many Members who have already spoken have become the voice for the voiceless in this debate. It is probably what Parliament should be for—to cry out for those who are most vulnerable, most needy and most deserving, yet do not have a voice.
Like many, I want to be the voice for one of my voiceless constituents today; I want to speak for Jake Oliver. Jake is four. He is currently in the haematology ward of the Royal Victoria Hospital for sick children, being looked after by some of the most magnificent staff in cancer services who deal with young people and children in particular.
Jake’s mum wrote to me, saying that she wanted me to speak in this debate because
“I honestly wouldn’t wish on any parent/family what we have been through in the past 19 months and continue to go through daily…Jake being so unwell and not getting a diagnosis quicker! 8 awful weeks before we knew he had cancer and at the age of 4. It breaks my heart to think my boy was so sick and didn’t know what was going on in his wee body…It took a further 6/7 days to stabilise him in hospital before we could begin biopsies….4 years old and he was basically being suffocated by a large mass surrounding his heart and lungs, cutting off his blood and air supply.”
I think we will hear many messages today from hospital beds and people’s homes about their little ones and how they need care. It is important that we recognise that every single effort has to be made to help these young people. Early diagnosis is clearly a key point.
Cat Smith (Lancaster and Fleetwood) (Lab)
It strikes me that I have had a similar piece of correspondence from my constituents about their three-year-old son Alfie, who is undergoing treatment for leukaemia. Does the hon. Gentleman agree that awareness among GPs would go a long way to ensuring that these young people—my three-year-old constituent, and his four-year-old constituent—get treatment sooner that is perhaps less aggressive?
Ian Paisley
If Jake could speak today, he would say “Hear, hear!” to what the hon. Lady has just said, because early diagnosis has been key. As other hon. Members have said, waiting several months before the GP was able to get the child to A&E and then have them diagnosed is not appropriate. It is not the GP’s fault. More money has to be put into research. There has to be more awareness, more skills training and more discovery research done, so that these problems do not arise again and again. As the right hon. Member for Alyn and Deeside (Mark Tami) said earlier about his own little kid, if there had been greater awareness at the GP level, these things could have been avoided and we would have at least had an early diagnosis and earlier treatment.
The fragmented experience that many young people and their families are going through must be addressed. We have heard already from hon. Members on both sides of the House that the fragmented service is not good enough. Jake will not take the excuse that some of those issues had to be set aside because of covid. He will not accept that excuse and his parents will not accept that excuse—and rightly so. They will not accept the excuse that there are not enough resources and enough money being made available.
Some hon. Members will not like me making this point, but I will make it: we spend more on abortion services than on childhood cancer research. Hon. Members should think about that and the weight of that. Surely we should be putting resources into childhood cancer research to save the most vulnerable lives that are already with us. That is where the effort should be made.
I agree with the points and statement of the hon. Member for Gosport and with the strategy that we must outline and deliver urgently. Let us not have another debate in a few years’ time about the issue. Let us have a celebration that we have done something—that we have directed those resources, changed lives, and had the ability to encourage the research. Let us bring together the experts who we know are already out there so that little boys such as Jake and the little girls who have been mentioned know that the treatment will be made available and that the research will result in their lives being saved, so we will see a difference. Let us give Jake and other children across this kingdom a chance.
Siobhan Baillie (Stroud) (Con)
I congratulate my hon. Friend the Member for Gosport (Dame Caroline Dinenage) on securing this important debate. I thank my constituents who have written to me about the debate to bring it to my attention. It is important that we bring local and personal experiences into this place when we are thinking about policy and legislation. I am grateful to Sophie’s mum, Charlotte, for sending me notes about Sophie and her beautiful picture. It is impossible not to be brought to tears—I am a crier anyway and I am pregnant at the moment, so I hope that hon. Members will forgive me if I go.
The theme running through many of the examples that we have heard today, and the correspondence that I have received, is a plea for the Government, MPs and policy makers not to misunderstand childhood cancer and not to write it off as rare, because so much flows from that label in terms of funding, attention and even time in this place. I understand that with 80-odd types of childhood cancer, it is complicated, but that is absolutely no excuse. We have already heard that it is the biggest killer of children under 14. I have not done the maths, but I know that that is many, many devastated families, even in the Stroud district, whom we cannot overlook.
One constituent wrote to tell me that the death of a friend when they were in their teens still plays on their mind. The GPs and out-of-hours services that he accessed did not have the training to identify that his symptoms were due to bone cancer and, as a result, after 13 gruelling months—we have heard time and again the horror of the treatment that the children go through—he died from the disease. Had his diagnosis been made sooner, my constituent is absolutely clear that his chances of survival would have been greatly increased.
We hear comments about mystery viruses and mystery symptoms. One of my greatest concerns is listening to the reality of pushed GPs, who are busy people and who are not equipped or trained enough to be able to spot some of the signs soon enough.
Ms Nusrat Ghani (Wealden) (Con)
Is that because there is not enough research? I was surprised to learn that only 4% of funds raised for cancer research and treatment are directed towards childhood cancer and that children, unfortunately, are receiving treatment for adult bodies. It all requires greater investment, which is obviously something that the Minister can respond to. As my hon. Friend has, I have had many cases in my constituency, particularly in Crowborough, Mayfield and Forest Row.
Siobhan Baillie
I thank my hon. Friend for that intervention. What I will say is that that is certainly not due to lack of care and love, because GPs absolutely want to do the best for their patients. Whether it is research, whether it is training, whatever it is, we have to fix this, so I support the calls for a children’s cancer mission, and urgently so. I want to bring everybody together for research and awareness raising.
I am very lucky that Meningitis Now—that fantastic charity, which has been mentioned—has absolutely turned around understanding and knowledge about meningitis in my constituency. It is a small charity, but it packs a punch. Why can we not do that for childhood cancer research and sufferers?
Post-pandemic parents, as I have just said about GPs, will look to call 111 for advice. We told parents and we told the whole country, “Don’t go to the A&E. Don’t go out to your NHS. Call 111.” So this is also about training that is really focused on that service.
Listen, the Minister is a fantastic Minister. I am bothering her all the time about lots of things, so I know her intellect and her care for people up and down the country. The Government have already committed to improving cancer outcomes, and the 10-year plan is absolutely an opportunity to make changes for the hundreds of families who are affected and desperately need our help.
Several hon. Members rose—
Mr Deputy Speaker (Mr Nigel Evans)
Order. The last speaker on four minutes will be Taiwo Owatemi, and we will drop the time limit to three minutes thereafter.
Taiwo Owatemi (Coventry North West) (Lab)
Thank you, Mr Deputy Speaker. I would like to start by thanking the hon. Member for Gosport (Dame Caroline Dinenage) and the Backbench Business Committee for bringing forward this important debate. I am so grateful to contribute following so many powerful and moving speeches today.
As a trained cancer pharmacist, I am only too aware of the issues associated with childhood cancer, which is why I want to use my time here to raise awareness concerning a key issue that specifically affects childhood cancer outcomes. Outside infancy, cancer remains the most common cause of death in children and the most common disease-related cause of death in teenagers, yet less than 4% of all cancer research funding is spent on cancer that primarily affects children. Childhood cancer research has been underfunded and neglected for decades in comparison with investment in researching cancers that affect adults. That unacceptable inequality of resources has fatal consequences for children in the United Kingdom.
This was the case for Ben Crowther, a seven-year-old boy from my constituency of Coventry North West, who tragically died in 2019 due to the aggressive form of childhood cancer called rhabdomyosarcoma. Though RMS can occur at any age, it most often affects children, as we have heard from many Members in the House, and therein lies the crucial distinction. Ben’s type of cancer most often affects children, yet research into that type of cancer has largely plateaued in recent years. Ben was treated with the best medicine available to him at the time. However, much of the treatment was decades old, and Ben’s doctor could not recommend that he join any clinical trials to give him a better chance of survival because there were simply no ongoing clinical trials for that form of cancer that he could join.
Nadia Whittome (Nottingham East) (Lab)
My hon. Friend is making an extremely powerful speech in memory of her constituent Ben. One of my constituents died at the age of only five years old from a brain tumour, and tragically he is far from alone. While 80% of children survive childhood cancer as a whole—still far too low—80% of children with brain tumours die within five years of diagnosis. It is the biggest cancer killer of those under the age of 40, yet brain tumours receive less than 1% of the national spend on cancer research. Does she agree that funding must be increased in order to improve outcomes for children and adults with brain tumours?
Taiwo Owatemi
I agree. My hon. Friend makes an important point. We need more funding for cancer research across all cancers.
His medical team did everything they could to save Ben but, in the end, decades of circumstantial neglect of RMS patients failed him. With Ben in mind, I just wish to make two brief points today. The first is that this Government must do better to encourage research into cancers that primarily affect children, not just adults. Parent-led charities and special named funds such as Pass the Smile are fundraising at grassroots level, but it is not right that the burden of raising funds should fall on the shoulders of bereaved parents. Secondly, we must treat the issue of childhood cancer outcomes with more urgency. We regularly call childhood cancers “rare”, but we must not lose sight of the fact that cancer is the disease that most commonly kills children.
Finally, I wish to thank Ben’s parents, Sarah and Scott, for allowing me to share Ben’s story, for their bravery and, above all, for their desire to ensure that no other family goes through what they have been through. I hope that the Government will listen to the stories that Members have shared today, and take the necessary steps to encourage greater awareness and improve research into cancers affecting children.
Mr Deputy Speaker (Mr Nigel Evans)
Thank you. There is now a three-minute time limit.
Anthony Browne (South Cambridgeshire) (Con)
I, too, congratulate my hon. Friend the Member for Gosport (Dame Caroline Dinenage) on securing this important debate. The level of attendance shows how important this issue is for MPs and for the country as a whole. According to the charity Children with Cancer UK, on average 12 children and young people are diagnosed with cancer every day. On 4 February 2014, nine-year-old Georgia Morris was one of them. I declare an interest because her parents, Richard and Selena, are friends, and Georgia went to my children’s school.
Georgia was diagnosed with neuroblastoma, a brain cancer that predominantly affects children. No one knows what causes neuroblastoma, or how to cure or treat it. Georgia got the best care possible from the NHS—her parents are keen to stress that—but it was care within the bounds of contemporary medical knowledge, which is severely limited. Since no one knows how to cure neuroblastoma, Georgia’s treatment was essentially a series of clinical trials of chemotherapy, radiotherapy and immunotherapy. She was given particular dosages to see whether they had any impact, and she showed extraordinary fortitude in the face of that. All those trials were funded by charity, with virtually no support from Government. According to Children with Cancer UK, of the 12 children and young people diagnosed with cancer every day, two will not survive. On 16 October 2016, aged 12, Georgia was one of them, dying at home with her family at her bedside. She would now be 18.
Georgia is far from unique. As we heard earlier, more children die from cancer than from any other sickness. When she was diagnosed, her parents were surprised to be told that there was no known treatment for neuro-blastoma, and little research into finding one. After she died they set up Georgia’s Fund, and have so far raised more than £200,000 for the charities Neuroblastoma UK and Children with Cancer UK. Working with the country’s top specialists, they are pushing research forwards. That is an amazing achievement, but it is also a drop in the ocean. I have many cancer research facilities in my constituency, which I visit, and I know that finding cures is painstakingly time consuming and expensive. Charities cannot do it on their own, and it is essential that Governments do more to support research into cancers that take lives so young.
As my hon. Friend the Member for Gosport (Dame Caroline Dinenage) said, we need a national mission for childhood cancer. It is certain that in time a cure for neuroblastoma will be found. It will be too late for Georgia, but not for other children. The more research we do now, the more young lives will be saved. We must do all we can to ensure that innocent children no longer have to go through what Georgia and her parents and family went through.
Kirsten Oswald (East Renfrewshire) (SNP)
I have spoken previously about a fine young man from East Renfrewshire called Daniel Caplan, who passed away at the end of 2020 aged 17, having been diagnosed with diffuse midline glioma. His brave family have kept raising awareness and funds in the memory of their lovely boy. Every nine days, a UK family gets that particular diagnosis for their child, which is devastating.
Another local family has a teenage daughter who is undergoing treatment for leukaemia. Her father made a number of important points that I would like to put on the record. For example, some current therapies for cancers, including types of leukaemia, are particularly onerous and can lead to challenging side effects in the long term. A lack of research means that in some areas, treatment and care has barely advanced in 40 years, so research is very much needed. He also made the point that professionals in the field are doing tremendous work, but they need more backup. Charities are taking on too much of the heavy lifting, and we need a Government commitment to that specific research.
I would like to make most of my remarks in relation to one wee girl from Barrhead, because recently so many people there have been in touch to ask me to raise the case of little River. I have heard from River’s mum, Katie, and am grateful that she spoke to me. When she first got in touch, she wrote:
“If you ever had to live on a child’s cancer ward, anyone would soon realise that childhood cancer isn’t that rare. They deserve so much more than 3% government funding.”
She also said that she really appreciated my speaking about little River. I am glad to speak about the wee girl and know that everyone in the Chamber will want to send their best wishes to River, her family and the other families that I have mentioned.
Little River is only two, and she was diagnosed with a brain tumour last September. She has been through surgery, she is going through intense chemotherapy and she will need further treatment. She is also in intense physio rehab. She is really going through the mill, but she is ploughing on with the love and support of her family. However, even when understandably her mum could be focused only on River, she points out that she is thinking of not only her girl but all the other children who would benefit from greater emphasis on research. That better treatment and increased knowledge can come only with better research.
River is being treated at the Schiehallion ward at the Queen Elizabeth University Hospital. Her mum says that the staff there are so lovely, which I know is true—I have heard it so often before—and we are all grateful to staff across the UK for the outstanding work that they do. But, fundamentally, none of us can disagree that we need a commitment to further research, because, without that, we will not see the better outcomes, the better treatment and the better ways forward that these children and their families deserve.
Caroline Nokes (Romsey and Southampton North) (Con)
With a all the moving stories, this is a difficult debate to listen to, but I congratulate my near neighbour, my hon. Friend the Member for Gosport (Dame Caroline Dinenage), on securing it. Hampshire is a small community, so it can be no surprise that nurses who treated Sophie live in Romsey and Southampton North and that her family have friends who live in my constituency. I have heard from them about Sophie’s bucket list and what her mother Charlotte wants to secure for children suffering from cancer, and that very much echoes comments made to me by my constituent Jane O’Brien, who lost her son George to teenage cancer some years ago. The O’Brien family have dedicated their time to setting up George’s trust, to raising funds to bring the first ever teenage cancer unit to Southampton General Hospital and to raising funds for the world-leading immunology centre in Southampton. Of course, we have heard today that too little of that research and money goes to childhood cancers, which are not as rare as we would like to hope.
George’s family have made a really important point to me about when he was diagnosed. When he went to the doctor’s surgery on the Tuesday, nobody recognised how serious his symptoms were. He died on the Friday, a matter of days later, but they felt strongly that the support was not there for them as a family. They did know what George had died of. They were not given the same level of support and assistance that other bereaved families might have received in similar circumstances.
Justin Tomlinson (North Swindon) (Con)
My right hon. Friend is making a typically powerful speech and she makes a key point. We must be better at linking up parents so that they have crucial peer-to-peer support as they go through the unimaginable horrors they face in such situations.
Caroline Nokes
That is a really important point, not just for parents but for the wider family and siblings who also need such help.
When I was a very new MP, I remember being contacted by my constituent Pip Armitage, who came to see me with Sacha Langton-Gilkes—the most amazing woman—to talk about the charity HeadSmart. They made a point that we have heard several times in the Chamber: we need a joined-up strategy and public awareness. We have heard about the meningitis campaign that has seen hugely improved awareness among families, parents and the medical profession and enables the condition to be identified early. In George’s case and that of too many childhood cancer victims, the condition is diagnosed too late because GPs do not have the awareness and the family do not know what signs to look for.
Sacha ran the most phenomenal campaign to put awareness cards, particularly on brain tumours, into schools and local authorities, and that was really effective. As part of the children’s cancer mission that my hon. Friend the Member for Gosport is rightly calling for, we need to have that same level of public awareness campaigning on childhood cancers. We need better referral guidelines for doctors, so that doctors such as George’s GP, who I levy no criticism at, spot the signs and refer children quickly and efficiently to the brilliant hospitals that are there to treat them.
This is such a crucial subject. As we can see this afternoon, there is enormous cross-party support for something to be done. I know that the Minister is listening hard and I look forward to what she will propose.
Helen Hayes (Dulwich and West Norwood) (Lab)
I congratulate the hon. Member for Gosport (Dame Caroline Dinenage) on securing this very important debate. My constituent, Emma, contacted me about the experience of her family, when her 17-year-old daughter, Ruby, became ill with T-cell lymphoma, an aggressive form of blood cancer. Ruby passed away in May 2020 aged just 18. I am speaking today for Ruby; for my constituent, Helena, who is currently going through cancer treatment, whose mum Katherine has been in touch; and for every other family in Dulwich and West Norwood facing a diagnosis of childhood cancer.
Ruby and her family really struggled to get a diagnosis after she became ill. She had six GP visits, while her family became increasingly concerned, before a GP referred her for the hospital tests that revealed that she had a 9 cm tumour in her chest. By the third GP visit, Emma had googled Ruby’s symptoms—a very swollen face, shoulder pain, tiredness and odd bruising to her abdomen—and she asked the GP whether Ruby could have a cancerous tumour obstructing her vena cava. She was told, “Not in one so young”, and was made to feel that she was an over-anxious parent, but that is exactly what Ruby had. It took three further GP appointments before she was referred for tests.
Ruby’s family now live with the additional pain of knowing that an earlier diagnosis might have saved her, and they are calling for better training for GPs in spotting cancer in children and young people and better practice in listening to and taking seriously parents’ concerns. Improvements in both those areas would increase early diagnosis, with life-saving consequences.
Ruby had 10 months of gruelling cancer treatment, and her mum highlights the lack of funding for research or progress in developing new treatments. The drugs used to treat Ruby’s cancer were approved in the 1950s, 1960s and 1980s. They have terrible side effects and long-lasting health consequences for children who survive their cancer.
Ruby’s family also highlight the impact that a childhood cancer diagnosis has on the wider family and the lack of support that is available. One parent often has to give up work and the average estimated additional costs associated with supporting cancer treatment are £600 a month.
Ruby was a remarkable young woman. She believed that the most important thing in the world was to be kind and to speak out against injustice and unkindness. Her motto was, “Live Kindly, Live Loudly”, and her family are seeking to keep Ruby’s memory alive by raising £500,000—roughly what the NHS spent on treating Ruby’s cancer—for the Children’s Cancer and Leukaemia Group. I recognise and encourage that vital and inspirational work. However, I also call on the Government to recognise the avoidable suffering that families such as Ruby’s face when a precious child or young person receives a cancer diagnosis, and to commit to the change that is needed—better training, more research and additional support for children and their families—to ease their suffering at this most difficult of times.
Derek Thomas (St Ives) (Con)
I chair the all-party group on brain tumours, which has been referred to. We have heard today of many children who have lost their lives, and many families who have faced that—we hear of that all the time in our APPG—but I want to focus my comments on the children who survive, but who do so with a terrible acquired brain injury.
This is how an acquired brain injury occurs. When a child first has a tumour, their brain is already being injured by the tumour. They may then have surgery and, again, more injury will be done to the brain during the surgery. Radiotherapy will cause more injury to the brain, and drug treatment, and so on, after that will cause further injury to it. If the brain tumour is got rid of and the child is cured of brain cancer, they are left with a life-long brain injury that will curtail their life chances and life experience.
At the moment, we in the UK do not do very well in supporting such children. Many, many children survive a brain tumour—brain cancer—but they live for years with terrible eyesight, poor access to education and all sorts of disabilities and challenges in their daily lives. Their family spend their lives trying to access all sorts of support and rehabilitation.
Quite rightly, the Government have announced that they will put together an acquired brain injury strategy. People now have the opportunity to take part in the call for evidence about what should be in the strategy. I make it very clear to the Minister that the strategy must include a chapter for children who face an acquired brain injury because of a childhood cancer or another illness or diagnosis. That would really focus us on the opportunity for immediate and intensive rehabilitation and therapy to allow those young ones to have the best possible chances, as they deserve. It would allow families to continue to support children, possibly for the rest of their life; some of them will live into old age.
We launched an inquiry into the cost of living with a brain tumour. We talked about life chances rather than money. We met ambassadors, who are children who have had brain tumours and brain surgery, and heard about all the challenges that they have faced—the amazing prejudice and barriers that they face every day of their life, particularly in the transition from childhood NHS treatment to adult treatment, as the Minister will fully understand. So much is dropped, but the opportunity is there to give those children and their families a really good lived experience and good life chances. That requires a proper understanding of what is needed to support children with an acquired brain injury as a result of childhood cancer.
Neale Hanvey (Kirkcaldy and Cowdenbeath) (Alba)
I pay tribute to the hon. Member for Gosport (Dame Caroline Dinenage) for securing this enormously important debate, and to the right hon. Member for Alyn and Deeside (Mark Tami) for his very moving personal account.
My observations are based on a lifetime working in NHS cancer care and on having led the first Teenage Cancer Trust unit at the Middlesex Hospital for a period of time—this was the world in which I existed. I hope that the Minister will pay attention to some of my observations from that career, because I think they will be useful in informing policy.
I agree that there is a need for an overarching strategy, but some of the problems discussed today are perennial; they have been there forever, and there really needs to be a concerted effort to address them. Unfortunately, some of them cannot just be solved with money. In addressing diagnosis, treatment and ultimately outcomes and survivorship, we need to think about why diagnosis is delayed, about why diseases are considered to be rare and about the ultimate impact on outcomes for children and young people. The reason for many late diagnoses is that most GPs never see a case of childhood cancer, let alone cancer in an adolescent, so the effort that goes into raising awareness and training may seem misplaced, given how rare an occurrence it is.
The other challenge is that many of the symptoms with which children present are things that GPs see day in, day out. Fevers, lumps and bumps, lethargy, pains in the tummy—all those symptoms are standard fare, so it is very difficult to cut through to the truth and identify types of cancer. The essential thing is a greater emphasis on driving awareness. It has to be a core part of any differential diagnosis when examining a child that there is always a chance that they have something much more sinister than a cough, cold or fever. It is about making sure that that is built into standard practice.
Another point that I would like to make, although I may run out of time, is that these diseases are incredibly rare. Because the subsets are so rare, it is very difficult to do longitudinal studies.
Helen Hayes
The hon. Member speaks about the rarity of these diseases. Will he join me in recognising, as other hon. Members have done today, the work on brain cancer that is being done in the name of my predecessor Baroness Tessa Jowell? It provides a model for a children’s cancer mission to bring together expertise in the area.
Neale Hanvey
I thank the hon. Lady for that intervention. I agree: there has been an enormous amount of work across a range of disease profiles, and I want very swiftly to name some of the key people with whom I have had the great pleasure to work in my time. Professor Jeremy Whelan has done a huge amount of work on soft tissue sarcomas and bone tumours, and Professor Andy Pearson from the Royal Marsden Hospital has done a huge amount of work as well. I also want to mention all the members of the multidisciplinary teams who make that kind of research and progress viable.
Let me finally say something about the bigger picture. Cancer does not exist in a bubble; it exists in the social fabric of where we live, and people with cancer, particularly children, are not immune to challenges such as the cost of living crisis. If we want to do a robust piece of work in order to make progress, it must involve research and treatment, but it must also improve the life chances of children more generally.
Laura Trott (Sevenoaks) (Con)
I thank my hon. Friend the Member for Gosport (Dame Caroline Dinenage) and congratulate her on securing this important debate. The courage and bravery of the children and their families about whom we have been hearing is deeply moving, and should on its own be enough to galvanise some change.
I want to use my speech to reflect on my very brave constituent Alice Wakeling. Unfortunately I never got to meet Alice, but I am honoured to say that her mother, Sara, has joined us today in the gallery. Having worked with Sara since becoming an MP in 2019, I have been truly inspired by her dedication, her resolve and her love, and I hope to do both her and her amazing daughter justice this afternoon in telling their story in the time that is available to me.
Alice was a healthy three-year-old when she began to develop a small lump on her neck. After eight weeks of diagnoses and tests, the family finally heard the news that anyone would dread. The lump, which had continued to grow and was now putting pressure on Alice’s airways, was a stage 4 fusion-positive alveolar rhabdomyosarcoma. We heard about that condition earlier today, when we heard about Sophie.
Rhabdomyosarcoma is a rare soft tissue sarcoma. It grows in the voluntary muscles of the body, such as the muscles that we use to move our arms or legs. In Alice’s case, the primary tumour was attached to a gland in her neck, and there was a small tumour in her lung. She was given a 50:50 chance of survival over five years. Let me remind you, Mr Deputy Speaker, that she was just three years old.
After 20 months of intensive chemotherapy at Great Ormond Street Hospital, Alice proudly rang the bell at the end of her treatment, but 15 months later the cancer came back. At the age of four, Alice saw her odds of survival drop to just 8%. Great Ormond Street suggested a procedure in Amsterdam known as AMORE. The treatment was incredibly gruelling for poor Alice, but she got through it, and once again she rang the bell. A few months later, however, the news that they had all dreaded: the cancer was back again. After an ultrasound, the doctors found a large mass in her abdomen, with similar masses forming around her bladder and pelvis. They said that there was nothing they could do, and I think that Alice had just had enough. In August 2019 she was taken home, under the care of the out-patient palliative team at Great Ormond Street, where she died peacefully two months later. She was seven years old.
Throughout her illness, Alice’s parents, Sara and David, became part of a worldwide network of medical professionals to help children undergoing cancer treatments. They now run Alice’s Arc, an amazing children’s charity for those suffering with cancer, and they campaign for more and new curative treatment options for children at relapse. We have heard today about the need for greater funding, for more training for GPs and more money for research. I think that all those things can and will be possible, and will be a fitting tribute to Alice and all the other children we have heard about today.
Richard Burgon (Leeds East) (Lab)
I congratulate the hon. Member for Gosport (Dame Caroline Dinenage) on securing the debate. I have been receiving emails during the debate from constituents who are delighted that this important subject is being discussed.
I want to pay tribute to a family in my constituency—to John and Hayley McGee and their incredible, inspirational daughter Elsa, who sadly passed away from childhood cancer. This is how they explained their journey:
“We sailed through the initial treatment and naively believed we were the fortunate ones. Elsa hated everything about chemotherapy, hair loss, lack of taste but most of all the lack of control. Her strong, sassy and sometimes aggressive attitude is what kept us all from falling. She was determined not to let this get her down. Our beautiful girl had no desire to be a girly girl but just to be accepted, hair or no hair. With a personality that always left a huge Elsa sized impression on the hearts she touched, she will be missed by many.”
When John and Hayley were asked what changes they would like to see, they said they would like:
“More involvement from the government with better funding for children’s cancer research. New, less aggressive treatments and most importantly, a cure.”
They also pointed out the fact that only 3% of cancer spend is going into researching childhood cancers.
Another constituent has been in touch with me as well. Natalie has talked to me about the experience of a child close to her, Jack, and she has three demands that she wants me to register in this debate. First, there is a need for biobanking all childhood tumours for genomic sequencing. Secondly, we need dedicated funding for childhood cancer research and treatments. Thirdly, she asked me to register a point that we have already heard today, namely that childhood cancer should be treated differently from adult cancer in diagnosis, in treatment pathways and in support services.
In the debate today, we have heard the unimaginable—for those who have not been through them—difficulties that families have gone through when their child has been diagnosed with cancer, treated for cancer, and all too often died from cancer. This debate is incredibly important as we look forward to giving people hope. The hon. Member for Gosport deserves real congratulations, as does everyone who has worked to bring this crucial issue to the House today, and we have seen the unity for a better future for all those diagnosed with childhood cancer and for their families.
Tom Tugendhat (Tonbridge and Malling) (Con)
I was going to make quite a different speech, but I am going to start by saying that, from Kirkcaldy to Kent and from Gosport to Glasgow, we have heard such a strong message of support for so many families in this great country, and I have to say that I am incredibly moved. My hon. Friend the Member for Sevenoaks (Laura Trott) and many others have recounted stories of great sadness and great tragedy, but what I am going to take away from this is not the tragedy or the sadness but the extraordinary love, courage and strength that so many families across the United Kingdom have shown, wherever they are from, whatever their background and however cancer has affected their young lives. They have shown extraordinary resolve and determination to be together as a family, to strengthen each other, to hold together and to really make a difference, even if lives are brief and even if the cancer is brutal. They have shown amazing determination to be so united in the face of such a horrific disease.
I am going to talk about a wonderful family I am privileged enough to represent. Claire Scott is just the most extraordinary woman—forgive me, I know that there are others in the Gallery, but Claire is a remarkable individual. When she was just about to give birth to her second child, Kylie, she found out that her first, Liam, had neuroblastoma. She had that extraordinary, horrific moment that so many families have had, of having to take in news that nobody would wish on anyone—not even their worst enemy in this place. We would all rather that these incidents never happened, but the truth is that they do. What Claire did when she heard the news was motivate herself and mobilise her friends around her to raise money to support the care that her son was receiving and also to take him to the United States to try an experimental vaccine. I am very glad to say that Liam is still with us. He is currently in remission and I very much hope he stays that way.
There is clearly an extraordinary amount of innovation coming through pharmaceutical routes and various other routes, and we really need to encourage that. We need to invest in it, we need to welcome the scientists and we need to celebrate the achievements of so many who are working on this right now. I am delighted to say that my right hon. Friend the Secretary of State for Health and Social Care met Claire recently and was able to talk to her about the possibility of looking at the various forms of treatment that are available and that may come in.
Caroline Nokes
There is clearly a challenge, in that therapies that are available abroad are not yet available here. Would my hon. Friend agree that more work needs to be done on that?
Tom Tugendhat
My hon. Friend is absolutely right, and that is exactly the commitment we got from my right hon. Friend the Secretary of State. We need to look hard at the various forms of treatment, and to encourage the NHS and NICE to look further into the many areas that offer hope for some. It is sadly not the hope for all that we sometimes read about in the papers, but these areas could possibly be the future for so many.
The House is united and strong today, and I hope we will be able to urge, encourage and persuade the Government to push forward with greater research, greater investment and greater support. Most of all, the House has spoken as one in celebrating the families, the love, the courage, the determination and the strength that have supported so many through this extraordinarily difficult time.
John McDonnell (Hayes and Harlington) (Lab)
I thank the hon. Member for Gosport (Dame Caroline Dinenage) for her terrific work in securing this debate, which provides us with the opportunity to raise incredibly moving individual cases. The hon. Member for Stroud (Siobhan Baillie) is no longer in the Chamber, but many of us also feel tearful, unaided by pregnancy. We raise these individual cases so that we can build the lessons learned into policy.
We are inspired by the courage and determination shown in these cases. I was lobbied by Sonia Kean—she is not my constituent, but she is lobbying terrifically hard—and she has been through this experience with her son, who had to tackle cancer again after it returned. She is working hard on behalf of a range of families to further this debate.
These debates are good because we are able to draw on the experience of colleagues such as the hon. Member for Kirkcaldy and Cowdenbeath (Neale Hanvey). They also give us an opportunity to thank people, and we have heard about the many charities that are working so hard. We should thank them on the record.
It is not often done in this place, but I thank the hon. Members for St Ives (Derek Thomas) and for Scunthorpe (Holly Mumby-Croft) for the work of the all-party parliamentary group on brain tumours and its inquiry on research. Its report will be significant in influencing the flow of not only research but the funding behind it, too.
I agree with the hon. Member for Gosport that we need a mission-based approach, one element of which is research, but I want to put another proposal on the table. Many people working in different areas of cancer are arguing for greater investment in research, and they have been given confidence by the way in which research has enabled us to tackle covid by bringing together the pharmaceutical companies, the research bodies, Ministers and others. There might be an opportunity for a summit of pharmaceutical companies, research bodies and others to give a new impetus to developing the research we need to tackle childhood cancers. If we can do it on covid, we can also advance to a much higher plateau on childhood cancer through such an initiative.
Mrs Flick Drummond (Meon Valley) (Con)
I say a big “thank you” to my fellow Hampshire MP, my hon. Friend the Member for Gosport (Dame Caroline Dinenage), for securing this important debate. I back her children’s cancer mission.
I saw the local news about Sophie Fairall. Her family faced a sad and difficult condition with dignity and courage, and I know the House will join me in wishing Charlotte, Gareth and Sophie’s sisters Lucy and Amelia well. I pay tribute to their campaign to improve outcomes for all children who have cancer.
It is every parent’s worst nightmare to hear that a life-threatening disease may affect their child, and cancer strikes horror into every heart. Children go downhill very fast with any illness, and the rapidness of cell division means cancer spreads faster in younger people. As we have heard, every year 1,800 children get a cancer diagnosis, and the biggest childhood cancer, leukaemia, accounts for about 30%.
Treatment is constantly improving. For instance, when I was at school in the 1970s, a classmate, Alison Brownlow, got leukaemia and sadly died at the age of 17. Ironically, her favourite song before her diagnosis was “Seasons in the Sun” by Terry Jacks. I think of her every time I hear that song, although she did not enjoy many seasons and was always desperate to return to school. Just over 30% of children survived leukaemia in the 1970s, but things improved fast; in the 1990s, my cousin, Suzanne Adamson, had acute lymphoblastic leukaemia when she was 10 but she has gone on to have a wonderful life, with a second child on the way. So there are some good outcomes and the leukaemia survival rates in the 1990s were at 80%. Cancer survival rates overall are now at 84%, but there is still room for improvement, as is shown by the death of Sophie.
One of my constituents, Alison Carson-Blake, wrote to me about her son Jake, who was just eight years old when he was diagnosed with stage 4 bulky Hodgkin’s lymphoma. His mother wrote:
“He had lost so much weight, looked yellow and was not eating. He was out of breath and got tired so easily. They never considered cancer and even as sick as he was, neither did I”.
Alison had to physically beg the doctors to look at Jake, as they would not give him a face-to-face appointment because of covid. Jake had cancer all over his body but is now is cancer free. There you have it: no one thinks that it will happen to their child, and it is rare; so rare that GPs do not get enough training in childhood cancer. The campaign would like to raise awareness for parents to recognise the signs of cancer in the same way that we know about meningitis. I back this campaign to have a quicker diagnosis, so that better outcomes can be achieved. A national campaign on the signs and symptoms of childhood cancer will help, as well as better training for GPs and nurses, alongside more funding for research. I once again pay tribute to Sophie’s family and to all those who are working so hard to make sure that cancers are curable for all ages, but particularly children.
Jim Shannon (Strangford) (DUP)
First, let me thank the hon. Member for Gosport (Dame Caroline Dinenage) for setting the scene so very well, and all right hon. and hon. Members who have made fantastic contributions here today. I share her concerns, as we all do. I am the father of three strapping boys and I have five grandchildren, and our worst fear is that something like this may come along. As politicians in this House, we have a duty to put in place a system that can ensure a quick diagnosis; the availability of testing; the availability of treatment and staff; and the best possible set-up to aid the child in their fight against cancer. I commend all the charities in this area, particularly CLIC Sargent, which does tremendous work in my constituency. I am ever minded of the survey carried out by the all-party group on children, teenagers, and young adults with cancer. It surveyed young people, parents and healthcare professionals, with 56% suggesting that better training for GPs on cancer in children and young people would make the biggest single improvement. I would like to hear the Minister’s thoughts on that. Research has also referred to clinical depression and anxiety among young people, with those with multiple GP consultations before diagnosis becoming clinically anxious. Again, I would like to hear the Minister’s thoughts on that and how we can deal with it more quickly. Having functioning GP services as the first line of defence in health is essential for outcomes in childhood cancer.
I agree with the Teenage Cancer Trust’s recommendation that the 10-year cancer plan should also commit to achieving access rates to clinical trials of 50% by 2025, as has been highlighted by others. The plan should look further than 2025—it should also look towards 2032. Again, I would like to hear the Minister’s thoughts on how we can achieve that. Clinical trials can significantly improve cancer outcomes for teenagers and young adults, but young people with cancer are currently not getting an equal opportunity to participate in and benefit from them. A recent trial for patients with acute lymphoblastic leukaemia showed that young people’s survival rates improved by 18% through involvement in this clinical trial. Given that success in clinical trials, perhaps we should give more opportunity to young people to participate in them. Trial availability is the major determinant of participation. If there are no trials available or existing for young cancer patients, there is no possibility of inclusion. Where trials do exist, there are often barriers to accessing them, such as arbitrary age eligibility criteria. What can be done to ensure that those who can and wish to be part of those trials can be part of them? There is also no data publicly available to show progress towards the commitment of the 50% by 2025, and again I look to the Minister for help on that.
The issue is clear: we need more support and more access to clinical trials if we are to win this battle against childhood cancer. There is no more worthy battle that we must fight and must win, and we look forward very much to the Minister’s response.
Duncan Baker (North Norfolk) (Con)
A huge thank you to my hon. Friend the Member for Gosport (Dame Caroline Dinenage) for securing this debate. It is such an important debate and, as she said in her opening remarks, the number of young children who suffer with cancer is truly, truly dreadful.
This is a very important debate to me from a personal point of view, because I have friends—not just constituents, but friends—who lost a son to cancer in the last couple of years. I have spoken about Kevin and Julie Pitcher before. Their son, Benny Pitcher, lost his battle with cancer after a long and very courageous fight in my constituency. Some will remember that he was only six years old. What makes that even more pertinent for me is that I have a six-year-old as well. I can still recall, as Benny journeyed from his home to his final resting place, people lining the streets and his small coffin as it made its way past mourners. I can say, Mr Speaker, that I do not think I will ever, ever witness grief quite like that in my community.
Benny’s cancer was an aggressive type of childhood cancer that forms in the brainstem, called diffuse intrinsic pontine glioma. At present, there is still a 0% chance of fighting that cancer and being able to survive. In over 50 years, we have made little progress in changing that. I find that just astonishing. If we can find a cure for covid-19 within nine months, why on earth have we not improved the life chances of children with childhood cancers in 50 years? Cancer continues to be the leading cause of death by disease in young children and young people. It is clear from every speech we have heard today that more must be done. It is essential that we drive more research into the biology of cancers if we are to stand any chance whatever of eradicating them.
I want to sum up by making a very important point about the families of young children who suffer with cancer. We have heard a lot today about those families having a proper emotional support network around them. Kevin, Benny’s father, is an inspiration to all those who meet him in North Norfolk. He alone has raised thousands upon thousands of pounds for children’s charities, so that other parents do not have to suffer quite as much as the Pitcher family did. Together, we are in the process of setting up a charity called Benny’s Battalion to help those families. I want to say on the record today that Benny’s name and his memory will never die—far from it. It is on days like this that it lives on.
Jill Mortimer (Hartlepool) (Con)
Sadly, I too know the devastating effect that childhood cancer has on families. My cousin Rebecca died, aged four, after an agonising battle with leukaemia. In those days, the treatment options for leukaemia were in their very early stages and Becky was one of the first children to undergo experimental radiation therapy. The side-effects of that early treatment are too gruesome to share with the House. Although survival rates for childhood cancer are better now than they were in the early ’70s, the side-effects wrought on children by radiation treatments and chemotherapy 50 years on remain agonising, as we have heard from across the House today. That is why more research is desperately needed.
I thank my hon. Friend the Member for Gosport (Dame Caroline Dinenage) for securing this important debate. She spoke about Sophie Fairall and why it is so important that we make the simple changes that Sophie wanted to make hospital stays more bearable. She also spoke about how important it is that health professionals are able to detect childhood cancer early and that symptoms are not dismissed as something less severe. That is another vital reason why we must all work hard in this place to ensure that GPs start seeing more patients face to face again instead of telephone triaging, which has become all too prevalent through and beyond covid.
Sophie, like my cousin Becky, was a brave and strong little girl. They both should have grown into powerful, beautiful and amazing women. We should honour their legacy by taking bold measures in this House to improve treatments and outcomes for children suffering with cancer. One of my constituents, Amy, recently wrote to me about her daughter Isabellah. Isabellah was diagnosed with the same form of rare cancer as Sophie and Ebony, about whom my hon. Friend the Member for Scunthorpe (Holly Mumby-Croft) spoke so eloquently. Recently, Isabellah was one of the lucky ones: she received the brilliant news that she was no longer showing any sign of the disease. I pay tribute to the bravery of Isabellah and her mother Amy, who continues to fight to raise awareness of this terrible disease.
Although child cancer is often described as rare, the death of four children per week is four children too many. For Becky, Sophie, Ebony, Isabellah and countless other children, let us work together to beat child cancer and ensure that no family has to endure the ripples of loss that permeate through the years through too many families like ours.
Steven Bonnar (Coatbridge, Chryston and Bellshill) (SNP)
I, too, am grateful to the Backbench Business Committee for bringing this debate to the Floor of the House. It is clearly a debate so close to so many hearts across this House and, indeed, throughout the nations of the UK. I am also grateful to the hon. Member for Gosport (Dame Caroline Dinenage) for outlining so well her wishes in this policy area and for leading for us on a subject that unfortunately does not receive the full attention that we all clearly believe it deserves. I thank her for telling us the story of little Sophie.
We have heard so many heart-wrenching contributions to the debate on behalf of constituents the length and breadth of the United Kingdom. The right hon. Member for Alyn and Deeside (Mark Tami) spoke about the problems in finding donors for the treatment of patients from non-white communities and the issues his own son faced. He also spoke of the very real fear of cancers returning after a period of time and the impact of that on families.
My hon. Friend the Member for Airdrie and Shotts (Ms Qaisar) spoke so well about the short but beautiful life on earth of little Rayhan, who was sadly taken from us far too soon. I do not know what else I can say apart from: shine on up there, little Rayhan.
My hon. Friend the Member for East Renfrewshire (Kirsten Oswald) informed us so well of the tragedy faced by her former constituent Daniel and his family’s grief after the loss of their lovely boy. She also told us about the strength of little River and her family as she tackles her cancer with such conviction each and every day.
Every year in Scotland, approximately 180 children under the age of 16 and 200 teenagers and young adults between the ages of 16 and 25 are diagnosed with a form of cancer. More than 5,000 children and young people have survived a diagnosis of cancer in the past two decades—a momentous and encouraging increase on previous statistics. The data on cancer outcomes is encouraging and has been achieved through excellent investment and commitment in clinical research, which is critical in achieving a high rate of cure results for childhood cancers.
Sadly and painfully, though, there are still around 41 deaths each year from child cancers, and cancer remains the leading cause of disease-related death in children and young people in Scotland. I am sure that all right hon. and hon. Members in the Chamber will agree that any loss of life to such an illness is tragic, but when the life is of one so young, it hits home so tragically for us all. I say that as the father of a 13-year-old child.
Importantly, across the House we all understand that child cancer does not simply affect the child but has momentous consequences for entire families. We have heard so eloquently from Members from all parties about the impacts. The child’s parents suffer so much in the process of seeing their beautiful child go through long hours and days of diagnoses and painful and invasive treatments. That is why NHS boards in Scotland are working closely with the cancer community to deliver the national cancer recovery plan, which will ensure the improvement of care for child cancer patients in line with their individual needs.
Cancers in children are classified differently from cancers in adults, and most of the data published is more suited to the treatment of adult cancers. We in Scotland have recognised the potential consequences of that, which is why NHS Scotland has started to publish annual data to support the appropriate recording of childhood-related cancers. This has ensured that Scotland completes cancer diagnoses to a much higher degree of precision than was previously possible. As a result, NHS Scotland has had the ability to contribute to innovative treatments and to international research projects, thereby helping to maximise treatment and cures for those at the highest risk.
Throughout the covid-19 pandemic, cancer has remained a priority for the Scottish Government, who are focused on ensuring that patients are diagnosed and treated as quickly as possible. We heard from the hon. Member for Meon Valley (Mrs Drummond) about just how problematic that has been in some cases throughout the United Kingdom.
Scotland currently has 76 general practitioners per 100,000 citizens. The hon. Member for North Antrim (Ian Paisley) spoke about GP provision and how important and impactful it can be in the early detection and prevention of cancers. We believe that it has undoubtedly helped to improve the early detection of cancer in Scotland, and I am sure that right hon. and hon. Members will agree that GP provision—or indeed a lack of it—can be hugely impactful in the wider healthcare arena.
We have also heard about how investment in new facilities, improved treatment options and earlier detection are all necessary, but it is vital that research into alternative cancer treatments continues and expands.
Finally, as we have heard from across the House, the key aspects are funding vital services in the fight against cancers, and driving forward the research programmes that we all hope will one day discover the cure.
Andrew Gwynne (Denton and Reddish) (Lab)
I sincerely thank the hon. Member for Gosport (Dame Caroline Dinenage) for securing the debate, for all the work that she does to raise awareness of childhood cancer outcomes, and for the powerful way she spoke.
I thank my right hon. Friend the Member for Alyn and Deeside (Mark Tami), who spoke with personal experience; my hon. Friends the Members for Coventry North West (Taiwo Owatemi), for Dulwich and West Norwood (Helen Hayes), and for Leeds East (Richard Burgon); and my right hon. Friend the Member for Hayes and Harlington (John McDonnell). I also thank the right hon. Member for Romsey and Southampton North (Caroline Nokes) and the hon. Members for Scunthorpe (Holly Mumby-Croft), for Delyn (Rob Roberts), for Stroud (Siobhan Baillie), for South Cambridgeshire (Anthony Browne), for St Ives (Derek Thomas), for Sevenoaks (Laura Trott), for Tonbridge and Malling (Tom Tugendhat), for Meon Valley (Mrs Drummond), for North Norfolk (Duncan Baker), for Hartlepool (Jill Mortimer), for North Antrim (Ian Paisley), for Strangford (Jim Shannon), for Airdrie and Shotts (Ms Qaisar), for East Renfrewshire (Kirsten Oswald), and for Kirkcaldy and Cowdenbeath (Neale Hanvey), as well as the SNP spokesperson, the hon. Member for Coatbridge, Chryston and Bellshill (Steven Bonnar).
I think we all agree and speak with one voice today. This is Parliament at its best. We do not often give ourselves a good name outside of this building, but I think today we have done our constituents and those who send us here thoroughly proud. This is what Parliament does and does well.
I pay tribute to Sophie Fairall and her mum Charlotte, constituents of the hon. Member for Gosport. The bravery, kindness and determination that Sophie showed during her treatment are an inspiration to us all. There is nothing worse and more senselessly tragic than a child being diagnosed with cancer. For many people, that does not even bear thinking about, but the fact is that it needs to be thought about. It needs to be a focus for politicians and policy makers from across the political spectrum. Only by doing that can we give young people and their families the support that they need, and work towards tackling this cruel disease.
As has been noted, although defined as rare, cancer remains the most common cause of childhood death outside infancy and the most common disease-related cause of death in teenagers and young adults. There are several different cancers that children can be diagnosed with; the most common are acute leukaemias and cancers of the brain and spinal cord. Rarer cancers include retinoblastoma or muscle and bone cancers. Different cancers require different treatments, and it is important that access to care reflects that.
This debate is specifically about cancer outcomes, of which there are many. We have all heard utterly heartbreaking stories of children who have lost their lives to cancer—a tragedy that is truly beyond measure—but there are also stories of families and children who have been placed under extraordinary pressures and who have struggled to navigate the confusing and often frightening world of treatment. It is our duty in this House to ensure that the Government do everything they can to support children and their families living through that ordeal.
There has been some positive cross-party collaboration on this issue, and I am grateful that the Lords amendments to the Health and Care Bill relating to cancer outcomes objectives were agreed and that the Government worked constructively with Members of both Houses to achieve that. There have also been positive steps taken with regard to principal treatment centres for children’s cancer and paediatric oncology shared care units.
However, there is so much more we need to do. There are still too many reports of parents being forced to seek alternative care abroad, of poor experiences for patients and their families and of poor quality of life. Worryingly, there are also reports that referrals to principal treatment centres are only occurring in about half of all cases, despite that being contrary to NICE guidance.
As the Teenage Cancer Trust notes, the experiences of young people with cancer can be affected from the very start of their cancer journey until well after treatment has finished. We therefore need to ensure that there is sufficient mental, physical and emotional support in place to help young people through this exceptionally difficult time. I would be grateful if, in her response, the Minister could set out what plans there are to enhance wellbeing support for children and young people diagnosed with cancer, as well as for those who are recovering.
I am incredibly concerned that spiralling waiting lists could lead to missed or delayed cancer diagnoses and thus to worse health outcomes. Early diagnosis is key to improving survival chances and allows for early intervention and treatment. What steps are the Government taking to address that concern? Will the Minister commit to doing more to raising awareness among the general public of how to spot early signs of potential childhood cancers?
There are also issues with research, and I will raise a few key points that I hope the Minister will respond to in her speech. In its cancer services recovery plan, the Government committed to working with the National Institute for Health Research to support the recovery of cancer clinical trials, including for children and young people, by the summer of 2021. Can the Minister update the House on progress on that commitment? Furthermore, given the funding challenges that charities are facing, especially in the aftermath of the pandemic, can she outline what steps the Government will be taking to assist the cancer research sector in its recovery?
Improving childhood cancer outcomes and quality of life must be a priority for any Government. The Labour party is committed to ensuring that our research workforce has the expertise needed to improve childhood cancer outcomes. That work could come alongside training and retraining the staff our NHS needs, as well as developing a proper workforce strategy that gives our health service the tools to provide all young patients with timely care. Furthermore, our pledge to place a qualified mental health professional in every school would ensure that young people living with cancer had the holistic support they so deserve.
In conclusion, I once again pay tribute to the incredible bravery of the campaigners, family members and young cancer patients who work so tirelessly to raise awareness and improve childhood cancer outcomes. I know I speak for the whole House when I say that it is my sincere hope that this debate and the contributions that we have heard on both sides of the Chamber today not only raise awareness of childhood cancer, but facilitate further action from the Government to improve outcomes and access to treatment. This is Parliament at its best.
The Parliamentary Under-Secretary of State for Health and Social Care (Maria Caulfield)
I start by congratulating my hon. Friend the Member for Gosport (Dame Caroline Dinenage) on securing this debate. We talk often about cancer in this place, whether at oral questions, in Westminster Hall or in Backbench Business debates, but rarely do we talk about childhood cancers. As we have heard today, it is crucial that we talk about them, and that we listen and learn from the experience of Sophie and the campaigns she started, which her family are continuing.
There have been many contributions, and I will list as many as I can. We heard from the right hon. Member for Alyn and Deeside (Mark Tami), who shared his son’s experience. My hon. Friend the Member for Scunthorpe (Holly Mumby-Croft) shared the experience of her constituent Laura, whose daughter Ebony was affected. The hon. Member for Airdrie and Shotts (Ms Qaisar) told Rayhan’s story. The hon. Member for Delyn (Rob Roberts) shared Jordan’s story. My hon. Friend the Member for North Cornwall (Scott Mann) contacted me ahead of the debate to talk about his constituent Talan. The hon. Member for North Antrim (Ian Paisley) mentioned Jake. The hon. Member for Coventry North West (Taiwo Owatemi) told us the story of Ben, who sadly died. My hon. Friend the Member for South Cambridgeshire (Anthony Browne) talked about Georgia. The hon. Member for East Renfrewshire (Kirsten Oswald) mentioned River and their experience.
My right hon. Friend the Member for Romsey and Southampton North (Caroline Nokes) told us George’s story. We heard about Ruby from the hon. Member for Dulwich and West Norwood (Helen Hayes) and about Alice, who is doing well, thankfully, from my hon. Friend the Member for Sevenoaks (Laura Trott). We heard about Elsa from the hon. Member for Leeds East (Richard Burgon) and Liam from my hon. Friend the Member for Tonbridge and Malling (Tom Tugendhat). My right hon. Friend the Member for Pudsey (Stuart Andrew) contacted me ahead of the debate to tell me about his constituent Catherine Beaumont and her nephew Oliver, who sadly died last year.
We heard from my hon. Friend the Member for Berwickshire, Roxburgh and Selkirk (John Lamont) about Julie. My hon. Friend the Member for Meon Valley (Mrs Drummond) told us about her own personal experience but also that of her constituent Alison’s son Jake. Finally, my hon. Friend the Member for North Norfolk (Duncan Baker) talked about Benny and my hon. Friend the Member for Hartlepool (Jill Mortimer) talked about Isabellah.
Dean Russell (Watford) (Con)
I think the common thread in all those stories was families who lost a loved one and still wanted to make a difference for families in future, the same as my constituent Laura MacQueen, who sadly had to endure the loss of her daughter Jess at the age of nine to a rare form of cancer. It was heartbreaking hearing her story, but what she is doing now is continuing to call for more investment and research into childhood cancers. I hope the Minister will hear that loud and clear.
Maria Caulfield
I think the names that we have read out this afternoon show that, while cancer in children only accounts for 1% of cancer cases, if you are in that 1%, it does not feel very rare at all. I thank all hon. and right hon. Members for sharing the stories of their constituents.
That means, as has been pointed out, that GPs will only see one or two cases of childhood cancer over the course of their career. These can be difficult cancers to spot because some of the symptoms reflect other illnesses and other conditions. NICE guidelines are trying to support GPs. The NG12 guidelines underpin cancer referrals. They set out detailed guidelines for GPs on the symptoms of cancer in children and recommend very urgent referrals that mean an appointment within 48 hours for children presenting with a wide range of potential cancer symptoms, from unexplained lumps to bruising or bleeding. The guidance also recognises the knowledge and insight that parents have, as it sets out that GPs should consider referrals for children where their parents are thinking that their child is not well or there is just something not quite right with them. That referral should happen when parents are concerned, even if the symptoms are most likely to have a benign cause.
Maria Caulfield
I will not, if my hon. Friend does not mind, because we do not have a huge amount of time.
NICE regularly reviews and updates these guidelines on suspected cancers. It urges GPs to think of cancers sooner and lower the referral threshold for tests, and ultimately catch cancer sooner, which does not always save lives but can make a difference if a cancer is diagnosed earlier.
To help GPs to identify signs and symptoms of these childhood cancers, online education programmes such as Gateway C are available, but also face-to-face education sessions have now resumed, including seminars offered by providers such as Cancer Research UK, and primary networks are establishing cancer clinical lead groups to share latest research and good practice.
The rarity of cancers in children, as the hon. Member for North Antrim pointed out, means that it is harder to diagnose outside a specialist setting, and many of the symptoms can mimic other illnesses. For example, diagnosing brain cancer in children is particularly challenging because it often presents in a similar way to epilepsy, and sarcoma symptoms can often start with limb pain, which is often a common complaint in children. It is therefore crucial that children up and down the country have access to specialist services in cancer care, which are not necessarily provided in most hospitals, where traditionally cancer services are arranged by cancer type. Children’s cancer services need to be contained in a small number of specialist units, which we refer to as principal treatment centres, or PTCs. Each child with a suspected cancer should be referred directly to a PTC, which will make the diagnosis and direct provision of treatment. In England, we have 14 of these centres. They manage care through the multi-disciplinary teams and drive diagnosis, treatment and, crucially, as we have heard from many Members, research participation.
As well as diagnosing the condition, the centres are expert in offering psychosocial support, helping children to continue their education and helping, as Sophie campaigned for, to provide specialist play facilities seven days a week. Sophie’s complaint was that those were only provided for five days a week. It is important that we hear from children and young people who receive a cancer diagnosis. I personally thank charities such as Young Lives vs Cancer and the Teenage Cancer Trust, which last year put together guidance for young people in England, Scotland, Wales and Northern Ireland discussing having a visitor and a hand to hold when having cancer treatment. That is useful guidance, and it has been distributed by the NHS to all our cancer alliances in England.
I will touch on the issues that Sophie in particular was campaigning on. Food was a big bugbear of hers. I think she described it as “disgusting” in some of the reports I read. We know that food is important for all patients, but particularly for children, because nutritious food is a way of aiding patients’ recovery. It is difficult in hospital. I know from my experience as a nurse that we always serve food at 7, 12 and 6, and if someone is hungry in between, it is often very difficult to get any food at all. We are working extremely hard to improve hospital food following the publication of the independent review in October 2020. The review made a suite of recommendations across several areas, including nutrition and hydration. The three-year plan, “Great Food, Good Health”, led by NHS England, is under way to implement the recommendations from that review. I hope that Sophie and her family will be pleased we are making some progress with that, because I fully recognise the complaints she made from her experience.
I will touch on research, because it came up so often in hon. and right hon. Members’ contributions. It is important that we improve not only treatment, but its side effects. We have heard from many Members that childhood cancers can have a very successful outcome in terms of survival, but often the impact of those treatments can have a lifelong effect for those with cancer and their families.
I reassure Members that research is taking place. Since 2019, the NHS has been offering whole genome sequencing to all children with cancer to enable more comprehensive and precise diagnosis and access to more personalised treatments that will reduce the number of young people experiencing long-term symptoms from their treatment. There has been a lot of progress on the treatment of childhood cancers, with the majority of children now surviving, but for certain childhood conditions, such as rhabdomyosarcoma, that is not yet the case. Research is crucial to how we deal with it in the long term.
The NIHR, which funds research across the board in the NHS, is funding childhood cancer research across its whole remit, from early translational research right through to clinical research and social care research. I am concerned by the case raised by my hon. Friend the Member for Scunthorpe of researchers in her constituency finding it difficult to access those funds and go through the application process. I am happy to meet her and the researchers to see whether we can unlock some of those jams.
There is support for research into rhabdomyosarcoma at the Royal Marsden biomedical research centre—I declare an interest, as I still work as a nurse at the Royal Marsden—the Royal Marsden clinical research facility and the Great Ormond Street biomedical research centre. We are making some great inroads in funding research into not only cancer treatments, but the effects of treatments.
There is so much more I would like to say to answer Members’ questions, but due to time I simply reassure my hon. Friend the Member for Gosport that the 10-year cancer strategy that the Secretary of State has just announced will tackle many of the issues she has raised. The call for evidence recently closed, but it is a great opportunity to put forward the case for childhood cancers, and I am happy to meet her after the debate to see whether we can push her case forward.
Dame Caroline Dinenage
I thank all hon. Members from both sides of the House who have supported this debate. In some cases, they have shared their own experiences and, in other cases, they have shared the incredibly sad and touching stories of their constituents. Other hon. Members wanted to be here to raise their own cases, including my hon. Friend the Member for Moray (Douglas Ross), who wanted to talk about Abbie’s Sparkle Foundation.
The stories have been incredibly difficult to listen to, but as hard as they are to hear, they are infinitely harder to go through. Families up and down the country who have been supporting children with cancer go through that every single day. I would like this debate to be a tribute to those children. The hon. Member for North Antrim (Ian Paisley) said that we have to be the voice of the voiceless, which is what we are all here for. It is not enough to pay tribute or say that we have listened. Actions speak louder than words.
The Government’s 10-year plan for cancer is a once-in-a-generation opportunity to move the dial on children’s cancer outcomes. It is a chance to shine a spotlight on this often devalued and much neglected area of medical research. The Minister talked about the research that is ongoing, but it is nowhere near the research that is going on in many other forms of cancer. It is a Cinderella and a backwater of research, which is not good enough.
The 10-year plan is a chance to introduce the mission on childhood cancer, which could really make a difference and save lives in future. It is a chance to introduce Sophie’s mission, Rayhan’s mission, Ebony’s mission, River’s mission, Alice’s mission—a mission for every single child whom we have heard about today and all the others yet to come. We have to stop failing children like this.
Question put and agreed to.
Resolved,
That this House has considered childhood cancer outcomes.
Mr Deputy Speaker (Mr Nigel Evans)
We will pause momentarily while hon. Members leave the Chamber.