Cancer Care: Young Adults

Julie Marson Excerpts

Wednesday 8th June 2022 Westminster Hall

[Ian Paisley (in the Chair)]

I will call the Member to move the motion and the Minister to respond. There will not be an opportunity for the Member in charge to wind up, unfortunately, because this is a 30-minute debate and that is the convention. I understand that several Members have indicated to the Member moving the motion that they intend to make an intervention, and she has very kindly agreed to allow that.

[Julie Marson (Hertford and Stortford) (Con)]

I beg to move,

That this House has considered cancer care for young adults.

It is a pleasure to serve under your chairmanship, Mr Paisley. Normally I would say that it is a pleasure to be here in Westminster Hall speaking on a particular issue but, of course, it is not a pleasure today. I wish I was not here raising the issue of cancer in young adults.

It is an issue that is horrible to confront and contemplate, but what I feel is nothing compared with what Simon and Andrea Brady feel. Every day they have to confront the reality of what happened to their daughter Jessica, who tragically passed away on 20 December 2020, aged just 27. They are here today because of Jess. I am here because of Jess. My right hon. and learned Friend the Member for North East Hertfordshire (Sir Oliver Heald) is here because of Jess, and the Minister is here because of Jess—I thank them both for that.

I pay tribute to Simon and Andrea. They are utterly determined in the face of their terrible loss to effect change in Jess’s name. I hope I can do justice to them and to Jess in supporting their call for that meaningful change. We are asking for Jess’s law—a practical change designed to save lives. Jess’s law would be that after the third contact with a GP surgery about a condition or symptom, a case should be elevated for review. After five contacts, it should be red-flagged and set procedures and guidelines should be followed, including a referral to a specialist.

We are clear that this should not be a tokenistic exercise, such as a simple, inconclusive blood test with the patient given an all-clear. The investigations need to be thorough and conclusive to make a real difference and to save lives.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on bringing this debate forward. I am moved by her plea on behalf of her constituents. I thank her for her dedicated efforts and for consistently raising the importance of cancer care for young adults like her constituent Jessica, who she has spoken about on a few occasions.

In Northern Ireland, trusts that run screening tests for certain types of cancer, such as breast, cervical and bowel. Does the hon. Lady agree—indeed I think she is asking for this—that it is time to introduce early intervention blood testing for those with symptoms of cancer to ensure early detection? Doing that would mean catching these cancers earlier.

--- Later in debate ---

[Julie Marson]

The hon. Member is quite right. Early diagnosis saves lives. I will mention some of the figures that prove that using technology and the right processes and procedures during that diagnosis phase is critical to saving lives. These are real people and real lives. I absolutely agree with the hon. Member.

[Mark Tami (Alyn and Deeside) (Lab)]

The hon. Lady has done excellently in getting this debate today. I have done a lot of work with young adults and children, and quite often with children bruising, rashes and tiredness are dismissed. Parents are told, “That is just children” or “That is just the way they are.” The danger is that conditions get picked up far later than they should be. We really need doctors to start thinking outside the box and looking at what these conditions could actually be, rather than just saying, “Oh, it is all fine.”

[Julie Marson]

I thank the right hon. Gentleman for his intervention. I will go on to talk about the danger of not expecting to find symptoms of cancer in children and young adults, and the terrible consequences that delays and misdiagnoses can have, as they did in Jess’s case—it is too often the case.

I want to talk about Jess, because to understand how important this is, and why the Brady family are so committed to this approach, it is important that I tell Jess’s story. In mid-2020, Jess was feeling unwell with abdominal and back discomfort. It was during the pandemic, and Jess was given an online consultation at her GP surgery, and prescribed antibiotics for a suspected kidney infection. Over the ensuing weeks she was prescribed numerous other medications, including more antibiotics and steroids. Jess contacted her surgery on more than 20 occasions in five months. None of the four GPs who provided her with a consultation—17 of which were conducted remotely—took her symptoms seriously. Her requests for blood tests were granted, but a raised D-dimer was dismissed after a preliminary scan, and not investigated further. Blood results showing poor liver function were left for a six-week follow-up review, which proved fatal.

Jess was told for months that she was suffering from long covid, despite two negative coronavirus tests. She was finally diagnosed with cancer following a private referral on 26 November. Her dependency on oxygen from that date meant that she did not leave the hospital or ever return home. Jess discovered that she had stage 4 adenocarcinoma with an unknown primary. It had spread throughout her body to her spine, liver, stomach, lungs and lymph nodes. Jess was a talented satellite engineer for Airbus. She had so much potential and so much life to live. Her loss has shattered her family’s world.

Devastatingly, had someone taken the initiative to closely review Jess’s case and examine the evidence, cancer screening would have been an obvious requirement. A consultant recently said to her parents:

“If a diagnosis cannot be made from initial tests then not enough tests are being carried out”.

In Jess’s case, a request to be referred to an ear, nose and throat specialist was laughed off. Letters written to the surgery listing her symptoms, including dramatic weight loss and vomiting, were ignored. Jess felt powerless and distressed. She tried so hard to be heard and taken seriously. It was heartbreaking for her family to watch her deterioration.

It is obvious really, but when people are desperately ill and at their lowest ebb, they do not possess the stamina to fight the system—nor should they have to. Jess’s age was a key issue. Many people, including GPs, do not expect to see, as the right hon. Member for Alyn and Deeside (Mark Tami) said, a young adult with cancer, and that affects their diagnostic processes and judgment.

[Sir Oliver Heald (North East Hertfordshire) (Con)]

I join my hon. Friend is expressing admiration for the way in which the Brady family have campaigned on this issue. In reality, is it not necessary for each general practice to have at least one doctor who is seriously knowledgeable about cancer diagnosis and able to take a lead, so that if the symptoms are not diagnosed that doctor gets to look at the case and perhaps send it to a rapid diagnosis centre? Otherwise the patient is being let down. The Health and Social Care Committee, in its report on cancer services, said that we need more support for GPs in that area. I commend my hon. Friend for what she is doing and ask if she agrees with me?

[Julie Marson]

I appreciate my right hon. and learned Friend’s intervention. I will come on to talk about some of the things he raised, because he puts his finger on some of the most important aspects of how GPs manage their diagnosis process. The diagnostic centres are fantastic, but they need to have patients referred to them, which goes back to what we are trying to achieve with Jess’s law.

Cancer charity CLIC Sargent found that around half of young people visited their GP at least three times before their cancer was diagnosed. Almost 10% of all new cancers are diagnosed in people aged between 25 and 49, with almost twice as many cases in females as in males in that group.

Simon and Andrea Brady created a petition in Jess’s name. My right hon. and learned Friend the Member for North East Hertfordshire and I joined them to hand it into Downing Street. Its plea was to increase the awareness of diagnosis of cancer in young adults. It currently has an incredible 240,000 signatures, and has highlighted the scale of the problem for young adults. The petition makes for heartbreaking reading. Countless people tell stories of their young family members who have had their lives curtailed by late or non-existent cancer diagnoses. The disproportionate occurrence of females is also deeply troubling.

Being told you are too young for cancer has been happening for years, and it is simply not acceptable. Young people have their symptoms explained away with other diagnoses. As I said, Jess was told she had long covid, despite never having tested positive. The explanations given to other patients for poor health are endless: irritable bowel syndrome, pulled muscles, fatigue, stress, migraine—the list goes on.

I welcome the significant roll-out of rapid diagnostic centre pathways across hospitals in England. I know we have just achieved one million tests and scans via our community diagnostic centres, which is a huge achievement and critical in tackling the covid backlog. Of course, patients still have to be referred by a GP, and that vital link is what we are focusing on here today, particularly the escalation of patients with undiagnosed symptoms within a GP’s surgery or to a specialist, as per Jess’s law.

There are other issues that relate to GPs, including having a dedicated GP lead for a patient. The general practitioners’ contract requires practices to provide a named accountable general practitioner to all registered patients. That GP must take the lead in ensuring that any primary medical services considered necessary to meet the needs of a patient, including appropriate referrals to specialist care and liaison with other health professionals involved in the patient’s care, are co-ordinated and delivered to that patient.

However, Jessica’s case demonstrates that that does not always happen. Jessica was not seen by just one GP at her surgery. In her case, four doctors spoke to her and prescribed medication. Although Jess was told on one occasion that she had been discussed at a practice meeting, it was obvious that there was no one person overseeing her case. She was never seen or contacted by her named GP. It is also vital that GPs are required to maintain their continuing professional development through up-to-date training and awareness of cancer, including in young people.

CLIC Sargent’s Young Lives vs Cancer is a charity dedicated to supporting children and young people with cancer, and ensuring that their voices are heard in the context of cancer care. It has identified several challenges faced by GPs that hamper early diagnosis. Those include limited training and awareness, and time pressures. Of course, the effect of the pandemic is exacerbating existing issues. One third of GPs reported inadequate opportunities to gain experience in the care of children and young people during their initial training as one of the top barriers to identifying cancer in children and young people.

The Health and Social Care Committee’s review into cancer services, published on 5 April, concluded:

“The single most effective way to improve overall survival rates will be to diagnose more cancers earlier. Diagnosing bowel cancer at stage 1 means that 90% of people will live for five years compared to just 10% of people diagnosed at stage 4.”

[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

The hon Lady is making a powerful speech. I apologise for missing the start of it. My condolences to Jessica’s parents. That point on early diagnosis is absolutely key. I am chair of the all-party parliamentary group on ovarian cancer and vice chair of the APPG on breast cancer. I have done a lot of work in this area. The number of people—especially women with ovarian cancer —who are diagnosed only in A&E, when it is almost stage 4 or too late, really has to stop, and that all starts with symptom awareness. What is being called for in that petition, therefore, is so necessary. Sometimes people have been back and forward to the GP so many times. Does the hon. Lady agree that that is the one thing that would have made a massive difference in Jessica’s case?

[Julie Marson]

I very much welcome the hon. Lady’s intervention. She is absolutely right. Her work to raise awareness of ovarian and breast cancer is all part of that hugely important process. I lost a dear friend to ovarian cancer, and it is a very difficult and unspecific thing to diagnose, or even for someone to realise that they might have the relevant symptoms. Breast cancer we have made a lot of progress with, and we have to keep that up. There are different cancers, with different symptoms, and awareness of the range of symptoms and how those might impact on different people is key to early diagnosis, to self-diagnosis so that people say, “Let’s go to a GP now”, and to get that GP to take things forward to identify the real underlying issue. I thank the hon. Lady.

The pivotal role that general practice doctors play in diagnosing patients early cannot be overstated. People—our sons, daughters, mothers, fathers, family, friends and neighbours across the board, regardless of age, race, sex or any characteristic—are equally deserving of diagnostic testing and referral. Patients must be accorded the time, space and physical contact to voice their concerns when presenting with recurrent and progressively aggressive symptoms. Listening and acting are key.

I know that the Minister is listening. We have met and discussed the issue, and her own experience in the nursing profession gives her great empathy and insight. I look forward to hearing her response in a moment. I also take this opportunity to thank my right hon. Friend the Secretary of State for Health and Social Care, who is arranging to meet Mr and Mrs Brady to discuss Jessica’s experience, what we can learn from it and how we might be able to implement Jess’s law.

I am also grateful to all those who have contributed today, in particular my right hon. and learned Friend the Member for North East Hertfordshire, who stands shoulder to shoulder with the Brady family. Finally, but most importantly, I reiterate my thanks to and deepest sympathy for Simon and Andrea Brady and their family. We do not want to hear tragic stories such as Jess’s—not because we do not care, but precisely because we do.

To conclude, I will repeat a detail of Jess’s story that I think illustrates the high regard in which she was held. On the day of her funeral, a satellite that she helped to design was launched into space from Cape Canaveral. It was inscribed with the words, “Thank you, Jess!” In honour of Jessica Brady, let us implement Jess’s law, so that other young adults who face the trauma of cancer in future can also say, “Thank you, Jess.”

[Ian Paisley (in the Chair)]

Before I call the Minister, I too want to acknowledge the presence of Simon and Andrea Brady in the Public Gallery.

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

It is a pleasure to serve under your chairmanship, Mr Paisley. I thank my hon. Friend the Member for Hertford and Stortford (Julie Marson) for securing the debate, which as she said is not one we want to have but is one we need to have. I offer my apologies and condolences to Simon and Andrea, who are with us today. Nothing we say in the debate will make things easier for them, but if we can prevent a similar tragedy from happening to another family, we must do absolutely everything we can to make sure we do.

In Jess’s case, it is true that two factors did not help her diagnosis. First, cancer is not as common in children and young people as it is in the rest of the population. It is not unusual for a GP, or even a GP practice, to see only one or two cases across the lifespan of their service. Just under 4,000 young adults between 15 and 29 are diagnosed with cancer in England each year; across the country, those are small numbers, so GPs often do not have experience of dealing with young people who present with symptoms that—as the right hon. Member for Alyn and Deeside (Mark Tami) said—are often non-specific and can be attributed to other causes. The other factor is that if there is an unknown primary, those cases are more difficult to diagnose across the board for all age groups, because there is not an obvious breast lump, an obvious shortness of breath or an obvious mole that has changed. That often makes it difficult for GPs to get to the bottom of what is happening.

Despite that, it is very clear from Jess’s case that there were many opportunities where further investigation could have revealed what was going on. She should not have had to go back so many times with the same symptoms without being investigated further. That is precisely why the Government have put a lot of funding—£2.3 billion—into the roll-out of community diagnostic centres, so that patients with non-specific symptoms that GPs cannot get to the bottom of can be referred straightaway. They do not need a hospital referral to an oncologist or a surgeon to investigate: GPs can refer those patients directly to the community diagnostic centre, where a range of tests is available, including MRI scans, ultrasounds and CT scans, to get that early diagnosis as quickly as possible. If it is not cancer, those patients can then pop back to the GP for further referrals elsewhere, but if it is, they can get started with treatment as quickly as possible. We are also introducing non-specific symptoms pathways, in order to do exactly what my hon. Friend the Member for Hertford and Stortford has said: bring together diagnostic equipment, expertise and support, so that discussions do happen about patients who are coming back on a frequent basis and for whom a diagnosis has not been helpful.

To mention two additional things that the Government are doing, my hon. Friend is absolutely correct that the nub of this issue is getting people diagnosed as early as possible, so we have now set a target that, by 2028, 75% of all cancers should be diagnosed at stages 1 or 2. Doing that means diagnosing people as early as possible. Screening will help, although it would not have helped in Jess’s case. However, the rapid diagnostic and community diagnostic centres definitely will help. This is about enabling pathways through which, if GPs are not able to find the source of a problem, they can get some extra expertise or diagnostic tests that will help them to do so.

Meeting that 75% target means addressing all cancers, not just the ones that are easier to spot, either because they have screening tests in place or because they give rise to more obvious symptoms. It includes the rarer cancers and those that have no known origin, so I hope that that gives some reassurance that we are absolutely focused on trying to diagnose people as early as possible. We are also piloting a nurse specialist route into pathways, so if someone like Jess was meeting their GP regularly and still not feeling that they were getting to the bottom of their problems, they would be able to phone the cancer nurse hotline. If the cancer nurse feels that that person needs to be seen by a cancer specialist or to go into the cancer pathway, they can do so as quickly as possible. Again, this is not about blaming GPs, but it will be another route through which patients can access specialist services.

Turning to Jess’s law, the Secretary of State is currently formulating the 10-year cancer strategy. We are looking at that in detail, and I can reassure my hon. Friend the Member for Hertford and Stortford that the strategy will contain a section on children and young people, because they have specific needs, particularly around diagnosis but also around treatment. I am very happy to discuss a flag-style system with the Secretary of State, as my hon. Friend has. There may be some technical difficulties with that: I am doing work with GPs on a flag system for gun licensing, and the issue we have, from a purely practical point of view, is that most GPs have their own independent IT system—they are not part of a national IT system—so if we introduce one nationally it will be quite difficult for each GP practice to implement it. My hon. Friend has made some suggestions, and it is not beyond the realms of possibility to introduce a system that ensures that, if a young person is seen four times and is still coming back with the same symptoms, that is raised to another level—a red flag level, as my hon. Friend said—to indicate that interventions need to take place.

Many of the points that my hon. Friend made, particularly on named GPs, are very important and I will certainly follow them up with her. In terms of the timing of this debate and the 10-year strategy, including some of work she has done within the cancer strategy would be a real opportunity.

[Julie Marson]

The Minister makes a really important point about the practicalities and technicalities of implementing something such as Jess’s law, and I absolutely appreciate that. The example she gave of IT systems being different across GP practices illustrates how important it is to standardise procedure. Patients should not be reliant on whether a GP has a particularly efficient or good procedure; practice should be standardised across the board.

[Maria Caulfield]

My hon. Friend is absolutely right. We are introducing non-specific pathways so that if someone does not have a specific, clear diagnosis and the GPs are not sure what to do, there is a pathway to follow, consistent across every GP practice throughout the country, and people do not slip through the net. Early cancer diagnosis is one of the priority areas in the Core20PLUS5 approach, which we introduced last year to reduce health inequalities across the country. It is crucial that we use that opportunity to flag some of the issues that my hon. Friend raised.

Crucially, GP training across the board is important. Because many GPs will not have come across a young person with cancer in the course of their practice, Macmillan Cancer Support, CLIC Sargent and Cancer Research UK are doing work to roll out training with regular updates—it is not just one-off training—for GPs and other members of the primary care team. It is much more common now for people to be seen by the practice nurse, the paramedic or the physio if they have back pain or joint problems. It may seem like a physio problem, but there could be an underlying cancer diagnosis. It is important that we educate and keep up to date the whole team, not just the GP.

I am very happy to take away my hon. Friend’s suggestions and to see whether we can put in place some proper measures that will reduce the chances of this happening again. We will not necessarily be able to make sure that no one is missed, but my hon. Friend raises some flags that cause me concern and that suggest we are not where we should be. There are certainly things that we can put in place to stop cancer diagnoses being missed in young people with non-specific symptoms.

Question put and agreed to.