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Cancer Diagnoses: Young People in Hertfordshire

Volume 703: debated on Friday 19 November 2021

Motion made, and Question proposed, That this House do now adjourn.—(Rebecca Harris.)

I wish to start by pointing out that this debate really does not belong to me. It belongs to Jessica Brady, as it is her tragic story that brings us all here today. The first thing I want to do is pay tribute to Jessica’s parents, Andrea and Simon Brady. They could not be here today, but I know they are watching, even though it is very difficult for them to do so. The pain they have experienced, and the pain they face every day of coping with their daughter’s illness and death, is unimaginable. They have told me that they are utterly broken, yet with dignity and determination they have committed to improving the diagnosis of cancer among young adults. They wish to ensure, in Jess’s name, that others do not have to go through what they have gone through. They have already done much to raise awareness of Jessica’s story. I was honoured, along with Simon and Andrea, and my right hon. and learned Friend the Member for North East Hertfordshire (Sir Oliver Heald), to hand in their petition calling for better awareness and diagnosis of cancer in young people to No. 10 Downing Street. The petition currently has more than 213,000 signatures, which is remarkable and sobering. I am grateful that my right hon. and learned Friend is in the Chamber for this debate and grateful for all of his support.

I pay tribute to my hon. Friend for securing the debate. My thoughts, as hers, are with Andrea and Simon Brady on the sad loss of their daughter Jess. Does my hon. Friend agree that at least two areas need to be improved in the way that we deal with cancer in young people? First, in general practice, we need to concentrate much more on young people and perhaps have a lead in each practice who looks at it and makes sure that every doctor is up to speed with the latest thinking. Secondly, we need to improve blood tests. There have been recent innovations, so perhaps a blood test could help with diagnosis.

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!”.

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?

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!”

I thank and pay tribute to my hon. Friend the Member for Hertford and Stortford (Julie Marson) for bringing this debate before us, and for raising this difficult issue in a typically dignified and sensitive way. She has done justice to Jessica and her family.

I join my right hon. and learned Friend the Member for North East Hertfordshire (Sir Oliver Heald) and my hon. Friend the Member for South West Hertfordshire (Mr Mohindra), who intervened, in sending my condolences to Andrea and Simon, and to Jessica’s family and friends, following her death. We know that the passage of time can help, but it can never totally remove that sense of loss. I pay tribute to them for the work that they are doing to highlight the issue. It must be very difficult for them and it is humbling that they—through their excellent Member of Parliament, but also in person—have been willing to share this deeply upsetting experience to seek to build a better future for others. I put on record my tribute and gratitude to them.

As my hon. Friend the Member for Hertford and Stortford has set out, Jessica sadly had a very rare form of cancer. I am advised that the timescale and complexity of diagnosis in this case was due to the rarity of the cancer, especially in younger people, but we are always willing to look more broadly and holistically at other factors that we may have some control over that could help to improve diagnosis in the future. It is absolutely right that we do so because, as my hon. Friend said, sadly no one is too young to fall victim to cancer, so it behoves all of us in this House and beyond to do all we can to improve diagnosis.

As my hon. Friend alluded to, we are working nationally on achieving the long-term plan commitment towards early diagnosis of cancer, including rarer cancers or those that are harder to diagnose, in order hopefully to avoid situations such as Jessica’s being repeated in the future. Hertfordshire’s hospital trusts are working extremely hard to that aim. In delivering the long-term plan for cancer, we have the aim of diagnosing three quarters of cancers at stage 1 or 2, and increasing cancer survival rates so that an additional 55,000 people survive their cancer for five years or more. Delivering those ambitions through earlier and faster diagnosis, rapid adoption of innovation and, crucially, the roll-out of personalised care—looking at someone as an individual—will benefit children and young adults across the country.

Alongside this, as my hon. Friend set out, all cancer systems continue to roll out rapid diagnostic centres or rapid diagnostics services, which are an important part of the clinical commissioning groups’ broader strategy to deliver faster and earlier diagnosis, and an improved patient experience. By summer 2021, there were 102 live rapid diagnostic centre pathways across hospitals in England and a further 98 in development, compared to just 12 in March 2020.

To make the discussion rather more local, in East and North Hertfordshire NHS Trust, the services to support and assist patients whose cancer is of unknown primary origin and those who have what are clinically known as “vague symptoms” are being brought together to make best use of clinical resource. Multi-disciplinary team co-ordinators will track patients on their pathways and ensure that the new 28-day faster diagnosis standard is met. Funding has also been put in place to provide psychological support to support patients earlier, at a time when they may be worried about receiving a potentially life-changing—or, tragically in some cases, life-ending—diagnosis.

Herts Valleys CCG is developing services for patients with non-specific symptoms that could indicate cancer—for example, a 12-month pilot of a primary care-led vague symptoms pathway, with direct access to CT scanning. This began in February and is reported to be working well, and the CCG is looking further to develop this work and integrate it more with the acute trust. There is also a significant amount of work on the site-specific pathways through more efficient diagnostic pathways. This goes to what my hon. Friend was saying, as it supports earlier and faster cancer diagnosis by assessing patients’ symptoms holistically—bringing all the symptoms together when considering them, rather than looking at them in isolation, when it would be understandable if a misdiagnosis were made.

I want to follow up on the point that I made when intervening on my hon. Friend the Member for Hertford and Stortford (Julie Marson). The project that the Minister is talking about is very good, but I just wonder about disseminating best practice more widely in GP surgeries. Does he think that the idea of having one GP in a practice who takes a lead on cancer—ensuring that the practice is up to date with the latest diagnostics, treatment and so on—is worth pursuing?

My right hon. and learned Friend is also an old friend, so I suspect that he has a slight insight into where I was to be going in a few minutes. I hope to be able to answer that point specifically.

On education in cancer diagnosis within Hertfordshire and on GPs having the necessary skills and keeping them up to date, GPs in the region are encouraged to maintain their knowledge and skills in the field and are supported by Macmillan GPs, who are specialists in cancer care. Cancer education programmes such as Gateway C are available online, and face-to-face education sessions have now resumed, including monthly seminars offered by providers and by Cancer Research UK. A primary care network cancer clinical leads group has also been established to share the latest local issues and best practice.

I turn to specific points highlighted by my hon. Friend the Member for Hertford and Stortford. On face-to-face appointments and the ability to diagnose in that context, £20 million of elective recovery funding has been distributed to cancer alliances in this financial year to help accelerate the implementation of service models that streamline the front end of the pathway and support the management of high referral volumes. Throughout the pandemic, NHS England and Improvement has provided guidance to general practice and continually updated standard operating procedures to ensure that changing services could operate safely. NHS England and Improvement set out clear expectations that general practices offer face-to-face appointments alongside remote appointments—telephone or online—and that clinical necessity and patient preference should be taken into account to determine the most appropriate method.

My hon. Friend raised research and how it could help save lives in the future. NHS England and Improvement is supporting GRAIL’s Galleri trial, where studies have shown the ability to detect more than 50 types of cancers through a single blood test. The Galleri test can, as she said, detect chemical changes in blood as cancer can release small particles of DNA into the blood—known as circulating tumour DNA—which leak from tumours into the bloodstream, to give a vital early warning. The Cancer Research UK and King’s College London cancer prevention trials unit is conducting a randomised control trial along with the NHS and GRAIL. The blood samples from the first subjects in the trial are being obtained at mobile testing clinics in retail parks as well as at various convenient community locations. The trial’s participants must not have had a cancer diagnosis in the last three years. The main trial has now started. As hon. Members will know, I am always cautious about such things, but I am cautiously optimistic and genuinely hope that the trial will yield innovation that will make a huge difference in the ways mentioned by my hon. Friend.

My hon. Friend also raised the central point of GPs handling cases in their entirety or of having a point of contact who can look at a case holistically from the individual’s point of view, with knowledge of all their symptoms, medical history and so on. The general practice 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.

As of 1 April last year, we introduced the supporting early cancer diagnosis service specification for primary care networks to support improvements in rates of early cancer diagnosis. The 2021-22 quality and outcomes framework, which is a reward and incentive scheme for general practices, includes five indicators related to cancer care, including a quality improvement module on early cancer diagnosis. That improvement module was designed specifically to improve referral and safety net practices.

I hope that that answers some of my hon. Friend’s questions. She rightly highlights that there is always more to do in this space, and as we think of Jessica and her family it behoves all of us to continue to work to improve the quality of care provided, improve research, improve early diagnosis and look at each person who comes forward with symptoms or concerns as an individual, bringing all those factors together.

One of the privileges for the Minister responding to the Adjournment debate on a Friday is to speak on a subject outside of their usual portfolio, and this is one such opportunity. It has been a humbling experience, and one that I hope will inspire us all to renewed efforts, thinking of Jessica, to improve services as we go forward.

Question put and agreed to.

House adjourned.