A grieving mother says the current waiting times for treatment against virulent cancers equate to a “death sentence”.
Joanne Fowler lost her daughter Jemma Akehurst, from Rusthall, to neuroendocrine carcinoma of the cervix on June 10, 2024.
Joanne Fowler, Jemma Akehurst and her daughter Rosie before she learned the cancer had spread. Picture: Joanne Fowler
According to Cancer Research UK, in England, the current targets to start treatment are no more than 62 days between the date the hospital receives an urgent suspected cancer referral and the start of treatment.
It also says the wait should be no more than 31 days between meeting your doctor to agree the treatment plan and starting treatment.
Cancer Research UK’s chief executive Michelle Mitchell says waiting lists are a “fixable problem” but only with “bold action”.
Michelle said: “Month after month, thousands of cancer patients across England are having to wait longer than they should to begin their treatment.”
Mum-of-four Jemma started treatment within these target times, but Joanne believes rare and aggressive cancers require immediate treatment.
Joanne said: “It’s not acceptable in the modern world we live in when we send people to the moon.
“If Jemma had her treatment earlier, I am convinced she would have been alive today.
Jemma Akehurst experienced numbness in her face which turned out to be a sign of the cancer’s recurrence. Picture: Joanne Fowler
“The trauma of waiting when you know you have cancer swirling round your body, 62 days – it’s absolutely outrageous.
“If this happened to you in your family, would you be happy to wait up to two months for your treatment? I think most people would say no.”
Maidstone and Tunbridge Wells NHS Trust responded to Joanne’s complaint about the care and treatment Jemma received.
Chief executive Miles Scott expressed sympathy with Joanne but said the review “hasn’t revealed any missed opportunities to save Jemma”.
Joanne recalled how her daughter was diagnosed with small cell carcinoma of a neuroendocrine nature on December 5, 2022, after waiting a month for the results of her biopsy.
Joanne Fowler with her daughter Jemma Akehurst who she described as incredibly brave
Her initial meeting regarding treatment took place on January 4, 2023, and her treatment began on January 16.
By May, she was given the all clear after four complete cycles of chemotherapy and radical radiotherapy.
Joanne believes a decision not to go ahead with two additional courses of chemotherapy was a mistake.
But, MTW NHS Trust told Joanne that two additional cycles were not given due to “significant” side effects and doubts about the benefit of having two further cycles.
Joanne said: “She shone like a diamond on her 40th birthday, cancer free. And then, the signs came; her bloods weren’t right in October 2023.”
Jemma Akehurst dancing on her 40th birthday with her daughter Rosie before the cancer spread. Picture: Joanne Fowler
Because an earlier PET scan had shown no signs of the cancer’s return, the doctor interpreted Jemma’s blood results as being related to her chemotherapy.
But Joanne feels these blood tests should have been taken more seriously because Jemma had not had chemotherapy for six months.
Then in November, the mum-of-four’s stomach became swollen and distended but abdominal investigations noted Jemma’s abdomen as “normal” with “no tummy swelling noted”.
By April 2024, Jemma’s chin and lip had gone numb and she went to the emergency department three times, where she was assessed.
It was agreed the best course of action was for Jemma to await her MRI scan results and, in the interim, try a new medication for her pain.
Jemma Akehurst from Rusthall passed away on June 10, 2024
She was also asked to contact her neuroendocrine specialist team in case her symptoms were related to a recurrence of her cancer.
After calling her cancer team, they identified the numbness as a possible symptom of a secondary cancer.
The scans confirmed the worst and in May 2024, Jemma was told she had months to live. She had cancer in her liver, chest, lymph nodes and deposits in her bones.
Joanne is critical of the medical teams in A&E reviewing Jemma’s case for not linking her facial symptoms with a possible sign of the cancer’s return.
But the MTW NHS Trust said the three-week delay in identifying the cause of Jemma’s facial symptoms “had no impact on her clinical prognosis”.
Jemma Akehurst rang the end of treatment bell in May 2023, but a year later, she was told her cancer had returned and she had months to live. Picture: Joanne Fowler
Despite this, it added: “We are so sorry that Jemma’s disease recurrence was so aggressive.”
After this news, Joanne says her daughter agreed to further treatment hoping she would live long enough to take her daughter to school, but that “she never stood a chance”.
Joanne added: “She did not have to wait for the treatment, when it was too late and nothing was going to save her.
“She would have done anything to live.”
A month after being told her time was limited, Jemma passed away on June 10, 2024.
Maidstone and Tunbridge Wells NHS Trust says treatment options were extremely limited due to the aggressive nature of the cancer
Remembering her daughter, Joanne said: “Jemma never smoked, she never drunk, she was just family orientated; a simple girl who loved spending time with her children – they were her life.
“She was an absolute light. It’s the worst thing in the world, she’s my only daughter. I spoke to her every day. She was incredible.
“Jemma was so incredible, so brave, she used to have a smile on her face. She was unbelievable, she was everybody’s best friend, she was nice to everybody.
“She was too good for this world, to be honest. She was special.”
Now Joanne feels strongly about the need for urgent cancer treatment, adding: “When a person has a serious cancer, they cannot wait for treatment. They can’t be put in the queue.
“Once they know you have a life-threatening cancer, you need to be seen immediately.
“It’s shameful that there is no cancer care at weekends or bank holidays.”
Cancer Research UK’s chief executive Michelle Mitchell says waiting times “can feel like forever”, adding: ”The UK government has to do more to reduce delays and ensure patients are treated on time.
“The 10-Year Health Plan didn’t include a commitment to meet all cancer waiting time targets by the end of this parliament. This is a missed opportunity, and one that needs to be clarified in the upcoming National Cancer Plan for England.”
A spokesperson for Maidstone and Tunbridge Wells NHS Trust said: “We offer our heartfelt condolences to Jemma’s family and loved ones.
“Jemma received a personalised care plan with regular tests and treatments in line with national guidelines. Unfortunately, due to the rare and aggressive nature of her cancer, treatment options were extremely limited, and after a period of remission, Jemma’s cancer sadly returned.
“We have invited Jemma’s mother to meet the clinical staff who cared for her daughter and we would encourage her to contact us if she has any further questions.”
Joanne added: “My daughter’s life mattered. She was not just a statistic. She was given a death sentence at 40 years old.
“People talk of bravery and courage, but I never knew it existed in such abundance until my daughter was told nothing could be done to save her life.”