Cancer Diagnoses: Young People in Hertfordshire

Gagan Mohindra Excerpts

Friday 19th November 2021 Commons Chamber

[Julie Marson]

I thank my right hon. and learned Friend for those comments. He has followed the case closely and has supported me. He puts his finger on some of the key lessons that we want to learn from the Brady’s tragic experience to improve the situation for the future. I will expand on the exact points that he has made.

Andrea and Simon first got in touch with me in April. They told me how Jessica, their 27-year-old daughter, had been unwell since mid-2020 suffering with abdominal and back discomfort. We know how difficult it has been to get a face-to-face appointment with a GP during the pandemic, so Jessica had an online consultation and was diagnosed with a kidney infection and prescribed antibiotics.

Over the ensuing weeks, Jessica was prescribed numerous medications, including countless courses of antibiotics and steroids, all without an examination. For months, she was told that she was suffering from long covid, despite the fact that she had never tested positive. Unconvinced by the assessments and desperately worried, Andrea and Simon decided to go down the private healthcare route.

On 26 November 2020, Jessica received the worst news imaginable: she was diagnosed with an extremely aggressive stage 4 adenocarcinoma with an unknown primary. Jessica’s dependency on oxygen from that date meant that she did not leave the hospital or ever return home. By the time the cancer was discovered, it had already spread to her spine, liver, stomach, lungs, bones and lymph nodes. Jessica passed away on 20 December 2020.

I never had the pleasure of meeting Jessica, but by all accounts she was a remarkable young woman. She worked as a satellite engineer for Airbus in Stevenage and on the day of her funeral, a satellite that she helped to design was launched into space from Cape Canaveral inscribed with the words, “Thank you, Jess!”.

[Mr Gagan Mohindra (South West Hertfordshire) (Con)]

I commend my hon. Friend for bringing this Adjournment debate on an important issue for Hertfordshire residents. Does she agree that early diagnosis of cancer would mean that stories such as that of Jess, which she has eloquently put forward, will not necessarily happen again?

[Julie Marson]

My hon. Friend is right: early diagnosis is key. From Jess’s experience, I want to dig into some of the ways that we can get early diagnosis and a diagnosis that speeds up the process to help to stop unnecessary suffering and death from cancer.

Jessica had her whole life in front of her, but because of the restrictions on face-to-face GP appointments and misdiagnoses, she finally received the correct diagnosis just three and a half weeks before she died. I was immeasurably moved by her story and immediately contacted the then Secretary of State for Health and Social Care, my right hon. Friend the Member for West Suffolk (Matt Hancock). I take this opportunity to thank him, because he immediately met me, and Andrea and Simon, and we agreed numerous follow-up points. I thank the current Health Secretary for carrying on that work. Andrea and Simon also shared Jess’s story at the Health and Social Care Committee.

There are four key elements to Jessica’s story: the fragmented nature of the GP care and provision that she received; the misdiagnosis that caused so much pain to her and her family; how her age helped to shape the process; and how we need to use her story to make sure that the same mistakes are not repeated. I will take those elements in turn.

Jessica’s experience of the GP care she received was, at best, fragmented and, at worst, insufficient to deal with the specific needs that she faced. The problem here was not the individuals involved; the problems for Jessica often came from the organisation of the system itself. The GP provision that Jessica experienced was definitely exacerbated by covid. At the Select Committee session, Andrea described how, at Jessica’s lowest ebb, she struggled to navigate receptionists and switchboards while trying to receive any kind of contact from a doctor. In Andrea’s own words, “Nobody listened” and “Nobody took it seriously.” I cannot imagine your child suffering such pain and yet saying, “What's the point? Nobody will do anything.”

We talk so much about how crucial an early cancer diagnosis is, but all parts of the system need to be working for the process to be efficient and, above all, effective. Andrea Brady summed this up perfectly at the Health and Social Care Committee session. She explained:

“No one looked at the big picture and assembled the jigsaw puzzle pieces.”

Jessica really needed one person on her case, looking at all the evidence and looking at things holistically. Whether we see it as an umbrella model, a wheel and spoke model or whatever, they all need a focal point that holds the rest of the process together. Without this, we know just how awful the results can be. In the end, Jessica saw four different doctors, with not one of them taking ultimate responsibility for her care.

The impact of not having that single point of contact was profound. Vital clues were lost or not examined properly. At one point, a blood test revealed high levels of D-dimer in Jessica, which is often indicative of a clotting disorder, but can also be a cancer warning. Jess was fighting two battles: on the one hand, coping with her debilitating symptoms and, on the other, persuading anyone to listen to her. The results can be catastrophic. I would be grateful to the Minister if, when he responds, he detailed what steps are being taken to create a more joined-up strategy in this field. For example, after the third contact with a GP surgery, could that case be elevated for review? Similarly, after perhaps five pieces of correspondence, could the case not be red-flagged and set procedures followed? I remind the House again that Jessica contacted her surgery on 20 occasions in five months. Some kind of escalation procedure could certainly help with cases such as this.

To give proper care, a named GP could handle the case in its entirety—not just in principle, but in practice too. Someone needs to take the time to listen to the case fully to make sure that every facet is assessed. I would be grateful if the Minister also addressed that. Will he detail what steps are being taken to ensure that each GP surgery has access to a designated cancer specialist? Having this available to every surgery would aid the diagnosis of cancers in the young and would come into its own especially when reviewing rare cancers and seemingly inexplicable symptoms.

We absolutely can and should trust our medical professionals. In the vast majority of healthcare situations, they get it right, but we cannot ignore the danger of misdiagnosis, particularly in unusual circumstances. In Jessica’s case, her raised D-dimer levels indicated a significant clot formation and breakdown within her body. It was only later, in their own research, that Andrea and Simon discovered that D-dimer levels are elevated in the plasma of patients with various solid cancers, suggesting a possible link to Jessica’s later diagnosis. However, this possible link was not investigated further at the time, because no medical professional asked further questions when they had the test results. If Jessica’s test results had been coupled with critical thinking from those in medical positions, proper decision-making would have taken place and, in Jessica’s case, it could have led to a different outcome.

I hugely welcome the Government’s commitment to better cancer research. The recent spending review announcement of £5 billion into health research will help us to identify new treatments, but will the Minister explain to what extent research will be carried out that looks specifically into new blood tests that accurately highlight incidence of cancer early. Such a test would have been a game-changer in Jessica’s case, providing a much clearer answer much earlier in the process. Such a test would have been a game-changer in Jessica’s case, providing a much clearer answer much earlier in the process. Will the Minister detail how improvements are being made in respect of misdiagnoses that derive from such a lack of information and questioning?

Jessica’s age, 27, was also a factor. Simon and Andrea have described Jessica and other young adults in a similar situation as

“too old for their diagnosis to be truly shocking and too young to be deemed at serious risk.”

Every diagnosis of this nature is shocking, yet Jessica was seemingly caught between two different age groups. Even her dramatic weight loss and vomiting and the swollen glands on her neck were not taken seriously or linked to possible cancer, because she was not deemed at high risk of cancer, partly because of her age. We really need to think about how this can affect young people.

Cancer Research UK tells us that adults aged 25 to 49 contribute 9% of all new cancer cases, with almost twice as many cases in females as males in that age group. That is far too large a number to ignore. Currently, the 24 to 49 age group is not prioritised, even though many cancers are found to be aggressive and require immediate treatment.

As well as raising awareness among the public of just how serious cancer can be for young adults, Andrea and Simon’s petition and campaign strives to do the same in GP practices, too. I am glad to have the opportunity to get this campaign on the Minister’s radar and hope he will remember this message long after we leave the Chamber today.

One of the biggest tragedies is that Jessica’s story is not an isolated incident: many other people have found themselves in a similar situation, and will continue to unless we can learn the lessons that we need to learn now. The petition has prompted countless people to come forward to tell their own stories of their young family members who have had their lives curtailed by late or undiscovered cancer diagnoses, including some people who were told that they were too young for cancer. We know that cancer can develop in children, elderly people and everyone in between. In 2021, it is just not good enough to tell someone they are too young to have cancer.

In Jessica’s case, it is deeply troubling that her symptoms were explained away with a long-covid diagnosis, despite her not believing she had ever had covid or having even registered a positive test. We need to ask more questions. We need to become better at using data properly. We need to improve cancer diagnosis among young adults.

I welcome the NHS’s introduction of rapid diagnostic centres—their focus on cancers that generate non-specific symptoms that are otherwise harder to diagnose will make a huge difference—but the point remains that a GP still needs to refer a patient to one of the sites. Rapid diagnostic centres are just one of a number of measures that are being introduced to tackle this acute problem; will the Minister outline the other measures?

We cannot help but wonder what would have happened if just one thing had been different about Jessica’s case. What if her case was escalated in the GP surgery? What if the raised D-dimer was investigated further? What if she had seen a doctor sooner? For her family, those are agonising questions.

I stand here and try to do justice for Jessica, and for Andrea and Simon, but I will never be able adequately to describe or encapsulate what they have gone through. Nevertheless, we can try to understand what went wrong in Jessica’s case. We cannot make it right for her, but we can prevent others from going through what she was forced to go through. Andrea and Simon deserve to see the change that will help so many families who find themselves in their shoes.

I am grateful for the support of my right hon. and learned Friend the Member for North East Hertfordshire. I hope that this debate can be a significant moment for cancer diagnosis among young adults, not just in Hertfordshire but right across our country, so that they too can say, like the message launched into space, “Thank you, Jess!”