Cancer Care: Young Adults

Oliver Heald Excerpts

Wednesday 8th June 2022 Westminster Hall

[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.”