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Warning of ‘unmet need’ for aftercare among women with cervical cancer

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It is essential that the “very real consequences” of diagnosis and treatment for cervical cancer are recognised, specialist nurses have said in response to a new report.

Far more women with cervical cancer than previously thought are afflicted by pain, depression and changes to bodily functions, research by a charity has revealed.

“It is essential that the very real consequences of diagnosis and treatment are recognised”

Natalie Percival

Most of the women surveyed for the study praised the quality of their treatment team but criticised the aftercare they had received.

The findings, published in a report by the charity Jo’s Cervical Cancer Trust, found that over 70% of women said their emotional and physical needs had not been met following their treatment.

The study, thought to be the largest ever into the long-term consequences of cervical cancer, involved 688 women diagnosed a year or more prior to completing the researcher’s questionnaire.

The study report stated: “Unsurprisingly, the majority of women who reported receiving support received it from a healthcare professional, whether a GP, oncologist, specialist nurse or doctor.

“Some women reported receiving support from non-professional sources, such as family or friends,” the report said. “It is of concern that over a third of women (37%) reported the support they received meeting only some or very few of their needs.”

“An estimated 49,000 women are living with or beyond cervical cancer in the UK”

Robert Music

The survey results revealed that almost two thirds of women had experienced at least three, often life-changing, physical problems, including negative impact on their sex life (67%), bowels (54%) or urinary function (54%) and pain (67%).

Many women affected had not spoken to a doctor about it, either because they were not sure where to seek help, did not want to bother anyone, or were scared of finding out what was wrong. Others reported being told there was nothing that could be done to help them.

While 83% of women said that their treatment team met many or all of their needs during treatment, only 63% rated the aftercare they received from GPs as good or excellent.

Women 10-20 years on from diagnosis – reflecting the increasing survival rate for the condition – were less likely to rate the support received as excellent than others.

For example, 36% rated the support they received from oncologists and cancer nurse specialists as excellent, compared to 58% and 50% overall, respectively. This fell to just 24% for GPs, compared to 32% overall.

The research found that many problems first appeared a year or more after initial treatment, with many women affected for the rest of their life.

The study report said that the emotional impacts of treatment for cervical cancer were being largely neglected – 34% of women reported that their emotional needs had not been addressed at all.

National Forum of Gynaecological Oncology Nurses

Ovarian cancer nurses are ‘increasingly stretched’

Natalie Percival

Natalie Percival, president of the National Forum of Gynaecological Oncology Nurses, said that more attention needed to be paid to quality of life after diagnosis.

“Ten-year survival for cervical cancer is now at 63% meaning it is not enough for women to be simply treated and discharged,” Ms Percival.

“I have seen many women who have been treated for cervical cancer struggling with problems which are having a significant impact on their physical and psychological wellbeing including ability to work, have relationships and travel,” she said.

She added: “It is essential that the very real consequences of diagnosis and treatment are recognised to ensure that women are receiving much needed treatment and support.”

On the back of the report – titled Long term consequences of cervical cancer and its treatment 2017 – Jo’s Cervical Cancer Trust is calling for a national tariff that would recognise the long-term consequences of cancer in the post treatment care pathway.

The charity suggested this would facilitate prompt diagnosis, better treatment and incentivise research into this highly neglected area.

Jo's Cancer Trust

‘Unmet need’ for aftercare in women with cervical cancer

Robert Music

It also recommended that the national metric of quality of life, currently being piloted for more common cancers, should be swiftly rolled out to less common cancers.

Robert Music, the charity’s chief executive, said: “An estimated 49,000 women are living with or beyond cervical cancer in the UK.

“This means thousands are suffering with chronic, often life-long conditions without benefitting from diagnosis and therapeutic methods that could significantly alleviate their suffering and increase their quality of life,” he said.

“A fifth of women agreed with the statement ‘I feel that cancer has changed my life permanently so it will never be good again’. This simply should not be the case,” he added.

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