Campaign news

The change we need

Claire’s campaign is calling for the following –

-Changing the narrative around gynaecological cancers. The mismatch between the Welsh Government line about ‘high levels of satisfaction’ and the reality of only 34% of suspected gynaecological cancers meeting the cancer pathway needs to be exposed. Many patients, including Claire have never been asked about their satisfaction levels’.

-A Womens’ Health plan needs to be reviewed to include a specific focus on gynaecological cancers. The newly published ‘Quality Statement for Women and girls’ health’ does not mention gynaecological cancer and will not give the focus needed to ensure improvements.

-The Welsh Government should work with Public Health Wales and organisations to develop a series of campaigns to raise awareness of the symptoms of gynaecological cancers.

-The Welsh Government, in conjunction with the Wales Cancer Network should commission an urgent review of the incidence, trends and high-risk populations in relation to emergency presentations with a gynaecological cancer

The situation facing women in Wales

Every year, there are nearly 1000 cases of gynaecological cancers in Wales.

These cancers are the 4th most common cause of cancer death amongst women here. These include womb (uterus), ovarian, cervical, vulval and vaginal cancers. In addition, women are also diagnosed with gynaecological sarcomas (leiomyosarcoma) that Claire has. These can occur anywhere in the reproductive system, although most gynaecological sarcomas (85%) occur in the uterus (womb) and 7% occur in the ovaries. Wales does not collect data on the number of women diagnosed with leiomyosarcoma, but we do know thatin 2021, 373 women in Wales died from gynaecological cancers. This was made up of 50 cervical cancer deaths, 120 from uterine cancer, and 203 from ovarian cancer. Insight from Tenovus Cancer Care shows that the incidence rate for gynaecological cancer in Wales is higher than the UK average, as is the mortality rate, with sadly 373 women in Wales losing their lives in 2021. In July 2022, only 34% of gynaecological cancers met the Single Cancer Pathway target (for no patients to wait longer than 62 days for treatment). Almost two years later, that figure stands at 32.2%, which shows no progress.

This is a short explanation of the symptoms of each gynaecological cancer.

Senedd inquiry – October 2022

The Senedd’s Health and Social Care Committee has been established to hold the Welsh Government to account on specific issues.

In 2022, the committee started an inquiry into gynaecological cancers, they looked in particular at the experiences of women with symptoms of gynaecological cancer, how they are listened to and treated by healthcare professionals, and how services empower, care for and look after women diagnosed with a gynaecological cancer (to ensure their physical, psychological and practical needs are met).

In addition to holding an open call for evidence through its consultation, they also took evidence in person by with stakeholders including charities and health professionals.

The committee worked with Tenovus Cancer Care to ensure women’s voices were heard as part of the inquiry.

Senedd report – December 2023

In December, the committee published their report Unheard: Women’s journey through gynaecological cancer with 26 recommendations for the Welsh Government – including the need for the Women’s health plan for Wales should include a specific focus on gynaecological cancers (Recommendation 2). The Welsh Government, in conjunction with the Wales Cancer Network should commission an urgent review of the incidence, trends and high-risk populations in relation to emergency presentations with a gynaecological cancer (Recommendation15), they should also within 6 months undertake a comprehensive review of the gynaecological cancer workforce in Wales (Recommendation 19).

Welsh Government response – March 2024

On March 8^th 2024, the Welsh Government published their response to the report and its recommendations.

Many stakeholders were vocal in their disappointment with the response from the Welsh Government.

Claire is “deeply disappointed by the tone and the lack of concrete commitments to any transformative change that can meet the challenges and needs of women in Wales now and in the future.”You can read Claire’s full response here.

She highlights that only 34% of gynaecological cancers meet the suspected cancer pathway targets.

Tenovus Cancer Care tentatively welcomed that 18 of the 26 recommendations have been accepted by the Welsh Government, but is concerned that most are at least cost neutral, which is a signal that investment in addressing the issues uncovered in the report is not forthcoming, despite claims that it is a priority for Welsh Government and the NHS. Tenovus Cancer Care is also concerned regarding the implementation of the recommendations, and where operational responsibility and consequential accountabilities lies. You can read its full response here.

Additional responses can be found here.