Wed 15 May 2024

Claire’s Campaign launched to give platform to ‘unheard’ women with gynaecological cancer

Tenovus Cancer Care is proud to support the launch of Claire’s Campaign in association with cancer campaigner, Claire O’Shea.

The Wales-based charity will stand beside Claire in her mission to give a platform to people with similar harrowing gynaecological cancer experiences in the Welsh NHS.

The campaign aims to amplify the voices of women who have felt ignored by health care professionals, leading to misdiagnosis, inadequate care, and tragic outcomes.   

Claire’s Campaign will also shine a light on staff shortages and capacity challenges within the Welsh NHS which have contributed to shocking waiting times experienced by women with gynaecological cancer, some of the longest of all cancer types in Wales.

In Wales, around 1200 people are diagnosed with a gynaecological cancer every year and 470 people die. Only 32.2% of cases meet the suspected cancer pathway targets, despite cancer and women’s health being a Welsh Government priority. 

Today’s launch comes as MSs debate the Welsh Government’s recommendations contained within the Health and Social Committee’s landmark report, Unheard: Women's Journey Through Gynaecological Cancer.

The recommendations were drafted after three women, including Claire, bravely shared their powerful testimonies to cross-party committee members as part of their inquiry into gynaecological cancer last year.

All three women said they had felt unheard at various points along the cancer pathway. 

In what was to be a first for the committee, two of the women were facilitated by Tenovus Cancer Care to share their stories via video, including Claire and Judith Rowlands, who sadly passed away shortly after.

Eighteen of the 26 inquiry report recommendations were accepted by the Welsh Government in its response in March. 

Claire’s Campaign will today call for all the recommendations to be implemented as a priority by Welsh Government. 

Claire, 41, from Cardiff was diagnosed with Uterine Leiomyosarcoma, a rare and aggressive cancer, almost two years after first raising symptoms with her GP. Initially she was diagnosed with irritable bowel syndrome.  

Now undergoing life-extending chemotherapy treatment, she hopes her campaign will be a “lasting legacy” and change the outcomes for future generations of women.  

Launching her campaign, Claire said:

My cancer is incurable after a misdiagnosis. And I am not alone. There are many other people in Wales who have experienced similar trauma and distress, their futures stolen, their families blown apart. 

Since sharing my story to the Committee, so many people have reached out to me, telling me of their own poor experiences, stories that have until now gone unheard.

I have been saddened, shocked, and outraged by all the testimonies. What I hear from women is they don’t feel they have a voice, and that their symptoms are ignored or downplayed.

I felt compelled to do something about it and passionately believe these people, these women, should have a burning platform so their stories are heard. But that’s not enough, there also needs to be change, something positive to save the lives of future generations of women, so there is not only equity of outcomes but hope too. 

Claire’s Campaign will also expose injustices in cancer services for gynaecological cancer and call for an overhaul of a failing system so desperately needed. For that to happen, Welsh Government must urgently take action, and MSs need to accept all the recommendations of the report women courageously contributed to today.

Sioned Cash, daughter of the late Judith Rowlands, said: 'Despite Mam being so poorly, she bravely gave evidence to the Inquiry. Her dying wish was that no other woman should go through what we had been through and that her evidence could be used to help improve things.

I am disappointed that what appear to be key recommendations of the report were either not accepted or not adequately addressed by the Welsh Government.

I worry about those in the same position as Mam, who do not have a family as wonderful as ours to support them. I worry about the elderly who aren’t mobile and have no family support. I worry to fall ill myself one day, due to the failings in the system I witnessed while Mam was fighting for her life. I worry for my own daughter one day.'

Judi Rhys MBE, Chief Executive of Tenovus Cancer Care, said: 

We are proud to be walking alongside Claire as she launches her campaign. Her desire to create collective change in her own adversity is both selfless and inspirational.

We feel it is vital to continue to support women to ensure the recommendations of the Inquiry are implemented in full, and at pace. We are collaborating with Claire to develop ‘Claire’s Campaign’ where she will shine a light on her poor experience alongside those of other women. 

Today, we also remember Judith Rowlands who died not long after giving her evidence to the Inquiry and pay tribute to the bravery that took during the end of her life.

It is an absolute privilege to be working in association with Claire, and other partners, to support her to spearhead the campaign while working to influence positive policy and system change to improve the experiences of women with gynaecological cancer in Wales.

Deryn Consulting, Cowshed, and Pobl Tech have come together to support the campaign pro-bono, including launching a website to house the experiences of women and their families, and ensuring their voices are heard.