Claire's Campaign: Woman with incurable cancer using time left to improve outcomes for others

  • ITV Wales' health reporter Katie Fenton caught up with Claire O'Shea

A woman from Cardiff with incurable cancer is using her limited time left to try and improve outcomes for others facing gynaecological cancers.

Claire O'Shea was diagnosed with uterine leiomyosarcoma, a rare and aggressive cancer, after initially being told she had irritable bowel syndrome (IBS).

She waited almost two years to get a cancer diagnosis. By then, it was too advanced for doctors to save her life.

Last year, Claire's story formed part of a Senedd inquiry into how women with gynaecological cancer are treated in Wales. Its report found a "bias" against women and said women's cancer concerns were being "dismissed, downplayed and unheard".

The report made 26 recommendations, most of which the Welsh Government accepted. But since the government made gynaecological cancers a priority in March 2023, figures on the number of patients starting treatment on time have got worse.

In February 2024, just 32.2% of patients with gynaecological cancers were treated on time, compared to 34.6% in March 2023.

Claire is now aiming to amplify the voices of others by launching Claire's Campaign.

Speaking to ITV Cymru Wales, she said: "The majority of the time it's women who are dismissed, like 'oh you're premenopausal, so you might be having symptoms because of that'. Or maybe 'you've got IBS,' which is what I was told.

"Lots of partners, husbands, brothers and sons have been in touch as well, to say 'this has happened to my mum or to my sister', and sadly the women have died because the cancer has been found so late."

When asked how hopeful she is that she will see a positive change in her lifetime, Claire said: "I don't know how long I'll live...I'm hoping because I'm advocating for myself and I've been one of the lucky people to respond to the chemotherapies that I'll have long enough to see some changes.

"Things have got worse even though it has been made a priority, so there really needs to be something quite radical."

Chief executive of Tenovus Cancer Care Judi Rhys said: "We know there are still hundreds of women who are still experiencing poor care and poor access to diagnosis and then to treatment.

"It's absolutely crucial that we just crack on with this now, so that women could get a far better dealing in Wales than they are currently getting.

"There were 26 recommendations put forward, 18 of those were indeed accepted in full and another four in part. However there was no resource put behind that.

"It's really difficult to see how these recommendations can be accepted if there is no further money to implement them."

Judi Rhys, the chief executive of Tenovus Cancer Care, said hundreds of women are experiencing poor care in Wales. Credit: ITV Cymru Wales

On Wednesday, Senedd members held a debate to put pressure on the health secretary to take further action in response to the inquiry's report.

Responding to the debate, Eluned Morgan said: "I want to start by apologising on behalf of the NHS for where we got your care wrong and where we let you down.

"In no way am I dismissive of the conclusions of the report. I hope you've noted that we've accepted almost all of the recommendations and I absolutely accept the scale of the challenge ahead of us."

A Welsh Government spokesperson said: "We are sorry and disappointed to hear that not all women have received the best possible care. We expect the NHS to learn from these experiences and address the issues.

"We also accept that performance for gynaecological cancer is not where it should be and have launched a £2m national programme to improve performance for gynaecological, urological, and lower gastrointestinal cancers."

  • What are the signs of gynaecological cancer?

There are different types of gynaecological cancer and the symptoms for these can be very general, according to the NHS.

Ovarian cancer can cause symptoms including abdominal pain, bloating, indigestion, reduced appetite and a change in bowel movement, as well as weight loss.

The most common symptom of both womb and cervical cancer is abnormal vaginal bleeding. Womb cancer is particularly common in women who have been through the menopause and stopped having periods.

Vaginal discharge and discomfort or pain during intercourse is also a key symptom of cervical cancer.

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