When I started this petition nearly 12 months ago, I knew nothing about the process and what could realistically be achieved. My motivation was fulfilling my promise to my wonderful daughter, Jess and making people in government realise how devastating and, possibly, avoidable losing her at such a young age was. I was also desperate to raise awareness about cancer in young adults. As a family, we were deeply saddened by the lack of support and awareness for people aged 25 -49. This petition has shown how huge the problem of late diagnosis in this demographic is. So, this year, we will continue to campaign for the right for ALL to receive the best treatment possible, regardless of age and location in the country.

This Christmas we sent this reply to Edward Argar, the Minister of State (Department of Health and Social Care) who responded when Julie Marson led the adjournment debate to improve the diagnosis of cancer in young adults in memory of Jessica.

“Our response to Edward Argar

“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 cancer, especially in younger people”

While it is true that cancer in younger people is rare, our campaign is trying to raise awareness to increase earlier diagnosis. According to Cancer Research UK “Adults aged 25-49 contribute around a tenth of all new cancer cases, with double the incidence in females than males.” It is also important to state we know very little about Jessica’s specific form of cancer. This is because by the time she was diagnosed, her Stage 4 cancer was so aggressive and widespread we do not know where the primary cancer originated. However, second opinions from the Marsden and UCHL have left us with no uncertainty that the medical profession had let Jessica down and questions should be asked.

We have repeatedly said that Jessica’s story is not an isolated case. We hear from countless people on a daily basis. Desperate people, heart-broken people, echoing Jess’ experience. The scale of the problem is insurmountable. People are reaching out to us, through our petition because they do not know who else to speak to.

These are quotes 3 quotes, from 3 different people, received on Friday 24th December 2021.

“I worked for the Thames Valley Cancer Network several years ago and one of my/our major projects was to increase awareness through education to health professionals and the general public…Be Clear On Cancer Campaign in 2011…and encourage thinking outside the box in terms of not assuming that is not an absolute indicator or someone’s likelihood to have it…I can’t express how sad (and angry) I feel that so few years later age is still used as a barrier to investigating symptoms properly”

“I have sadly encountered a few similar cases, two of which were also diagnosed too late and because of their ages (both in their early 20’s). The symptoms were put down to “too much exercise” and “just a pulled muscle”.  Jess was misdiagnosed with Long Covid despite two negative Covid tests and never believing she’d had Covid.

“My son Rob is at the end of life with stage 4 synovial sarcoma, he’s 32 and it’s heart-breaking. He too was diagnosed very late”.

We believe Government is not seeing a clear picture of the scale of the problem. There needs to be a thorough inquiry inviting families of patients who have lost their lives to cancer in the last 10 years to participate. How is current data collected? We have never been asked if we would be willing to share Jess’ experience.

“. 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.”

How will this aim be realised? How in reality can this possibly be achieved when Covid remains everyone’s priority and is dominating GP’s time and thinking. Only two days ago we received this text message from our GP surgery “To support the booster vaccination programme and help protect patients from COVID-19, some routine GP services will be temporarily suspended”. We frequently hear from Health Professionals telling us this is just the tip of the iceberg. We haven’t even begun to see what the impact of Covid on Cancer diagnosis is. We hear of specialist cancer units being only 10% full because of GP failure to diagnose and refer. This week I was told some GPs are sending anyone or everyone for further diagnostic testing, without even an initial a face-to-face appointment or examination, whilst the majority are not referring any. Professor Karol Sikora, a British physician specialising in oncology, described as a leading world authority on cancer, wrote 10 days ago “We have 50,000 people walking around who have cancer but don't know it because of the disruptions. That number is only going to increase over the coming months. The lack of attention on the cancer crisis is wrong.” Our campaign has always acknowledged “dealing with the real risk of Covid should not create a higher risk of cancer death in our younger generations”. However, we also know that whilst the pandemic undoubtedly exacerbated the problem for Jess, we are certain that the biggest obstacle she faced was her age - which is utterly devastating. The impact of losing someone so young is enormous. It leaves families, partners, and friends deeply traumatised. Many young adults leave behind children creating a devastating impact which in turn affects our society as a whole.

GPs are operating in an overstretched service. We need to be mindful. It will be the more conscientious GP’s who will act and feel more pressurised and leave the profession. If funding is not an issue, then it is obvious that we need more GPs, more specialist nurses and provision for ring-fenced funding enabling medical professions to refer, regardless of age.

“…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.”

This all sounds excellent in theory, but a GP still needs to refer a patient (it is doubtful Jess would ever have been referred) even in her last month, when we were pushing and suggesting cancer, her GPs dismissed it. For it to work surely there needs to be an RDC attached to every hospital in the UK? We cannot allow the postcode lottery system to continue. Telling the public how many additional millions will be spent on this initiative is not tangible. We need to know that every British citizen will have easy access to such facilities in the near future.

“GPs in the region are encouraged to maintain their knowledge and skills in the field…”

When one considers 1 in 2 of us will develop cancer in our lifetime “encouraging” staff to maintain their knowledge and skills is simply not good enough. There should be mandatory additional cancer awareness training for GPs supported by yearly online compulsory refresher training (similar to KCSIE training in schools). The time has come for every GP practice in the country to have a cancer specialist.

“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.”

Unfortunately, we hear, once again, on a daily basis, this expectation is being ignored. Face-to-face appointments are not happening in this way. E-consult forms are completed, and the Doctors determine whether they will see the patient in person, or not. Doctors may now prefer e-consults because it, perhaps, filters out ‘problem patients’ but it is distressing and exhausting for patients who are extremely sick. Jessica needed a physical examination. Even when she was offered a face-to-face appointment the Doctor would not look down her throat or touch her because of Covid restrictions. A trained GP should have detected, by touch, the tumours on her spine. These restrictions remain real today.

“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…” 

This imperative initiative is hugely welcome. Research into creating blood tests, that more accurately highlight incidence of cancer early, is desperately needed. Many people wrongly assume a full blood count provide accurate cancer markers. This gives people a false sense of security when non are found.

“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.”

Jessica’s case is absolute proof that this does not happen. Jessica was not seen by one GP at her surgery. At least 4 Doctors spoke to her and prescribed medication. Although Jess was told on one occasion, she was discussed at a practice meeting, it was obvious there was no one person overseeing her case. She was NEVER seen or contacted by her named GP.

To conclude, the practical changes we would like to see are:

A named GP not just in principle but in practice.               

Jess’ law: After the third contact with a GP surgery about a condition/symptom a case should be elevated for review. After 5 it should be red-flagged and set procedures followed. Jess contacted her surgery on more than 20 occasions in 5 months.

               The Listening Project: No one took time to actually listen. Jess needed a longer consultation

               GP practices need a designated Cancer Specialist (this would aid the diagnosis of cancers in the young and in reviewing rare cancers and ‘inexplicable’ symptoms).  Linked to a cancer checklist.

GP initiative, not patient. The onus shouldn’t be on patients to push. We should not feel like failures if, at our lowest ebb, we fail to self-diagnose and demand treatment.

              Additional cancer awareness training for GPs supported by yearly, mandatory, refresher training.

Face-to-Face GP appointments. Nationally people are calling for a return to ‘normality’. A GP can not gauge distress/fatigue etc from an online form. The Government must continue to push for this.

There needs to be more research. Why females? Why so young? Why left undiagnosed? In this age group, 20’s, 30’s, 40’s what is the survival rate?

Inquiry inviting families of patients who have lost their lives to cancer in the last 10 years to participate."

Thank you so much for your continued support.