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Nearly 200 women are diagnosed with ovarian cancer in Northern Ireland every year.  In recent years there has been an increasing effort to raise awareness of the disease:

  • In 2013 Members of the Legislative Assembly called on the then Minister of Health, Social Services and Public Safety to ‘consider an awareness campaign on this issue’.
  • In 2014 Una Crudden, who had received a terminal diagnosis of ovarian cancer, worked with the Public Health Agency and charities, including Target Ovarian Cancer, to run an ovarian cancer awareness campaign which saw leaflets and posters distributed across Northern Ireland highlighting the key symptoms for women to look out for.
  • Target Ovarian Cancer’s leaflet with information on the symptoms of ovarian cancer has been available on the Public Health Agency’s Be Cancer Aware website since the awareness programme’s launch in 2015.

However, while survival rates have improved in recent years, they still lag behind those for other cancers and over 100 women die of the disease in Northern Ireland every year.

It is clear more needs to be done and this is therefore a critical time to be publishing the first Pathfinder Northern Ireland, looking at women’s awareness of ovarian cancer, their experience of diagnosis and treatment and GP knowledge.

Pathfinder Northern Ireland is based on three different surveys:

  • Women in the general population
  • Women with ovarian cancer
  • Practising GPs

The report is structured around the patient pathway. It begins with awareness and diagnosis, before moving on to treatment and support. It also has sections looking at genetics, clinical trials and mental wellbeing and body image to present a more complete picture.

While recognising the work that has been done already to improve the diagnosis and treatment of ovarian cancer, Pathfinder Northern Ireland sets out what needs to happen next to transform outcomes for women living with ovarian cancer in Northern Ireland today, and those diagnosed tomorrow.

Pathfinder Northern Ireland

The top three actions identified by Pathfinder Northern Ireland are:

  • A Be Cancer Aware campaign that includes the symptoms of ovarian cancer so women know the symptoms to look out for and the importance of going to the GP.
  • NHS Northern Ireland to ensure all women with ovarian cancer are given information on clinical trials and how to access them.
  • NHS Northern Ireland to ensure all women with ovarian cancer are aware of where to go for support, including counselling.

Key findings from Pathfinder Northern Ireland

Symptoms awareness

Women in Northern Ireland have an alarmingly low awareness of ovarian cancer symptoms - just one in four can name bloating as one of them. This leaves women without knowledge that could save lives. Awareness of all four main symptoms – abdominal bloating, tummy pain, difficulty eating or feeling full and needing to wee more often or urgently – is similarly low, while over a third of women (38 per cent) wrongly assume that cervical screening also detects ovarian cancer

25% of women are able to name bloating as a symptom of ovarian cancer   38% of women wrong believe that cervical screening also detects ovarian cancer

Diagnosis

32% of women visited their GP 3 times or more before being diagnosed32 per cent of women subsequently diagnosed with ovarian cancer visited their GP three times or more before being referred for diagnostic tests and 29 per cent of women were initially referred for tests for something other than ovarian cancer.