The findings in the preceding pages set out where progress has been made but they also show where more remains to be done. Below are the actions that must be taken if we are to see the transformation in awareness, diagnosis and treatment of ovarian cancer so desperately needed.
The increase in unprompted awareness of the key symptom of bloating since the first Pathfinder is to be welcomed and is a testament to the work that has taken place to date in raising awareness.
However, overall awareness levels remain low. The first step in ensuring more women are diagnosed earlier and have the best possible chance of survival is making sure they know the symptoms to look out for and the importance of acting on these.
Women still have to make multiple visits to the GP before being referred for diagnostic tests. This figure has consistently improved since the first Pathfinder in 2009, but still lags behind other cancers. A large number of women also continue to be referred for tests for something other than ovarian cancer.
Both among the general population and women with ovarian cancer, awareness of the significance of genetics and family history remains low. While GPs appreciate the importance of family history on the mother’s side, far fewer are aware of the equal relevance of family history on the father’s side.
The results of genetic testing have significant implications. It may affect a woman’s treatment, she may want to explore preventative surgery and it raises the possibility of other family members carrying the same genetic mutation. It is therefore not surprising that women with ovarian cancer overwhelmingly agreed that all women should be offered counselling prior to undergoing testing.
Women’s feedback on the way their diagnosis and treatment was explained to them is extremely promising, showing the majority of women are having their treatment explained to them in a clear and accessible manner. Lower numbers, though, reported receiving written information.
Women are presented with a huge amount of information, both at diagnosis and throughout treatment, and written information is vital in ensuring women can access the information they need when they need.
Clinical trials continue to be discussed with only a minority of patients. This might be related to clinicians’ concerns about the suitability of trials or the distances involved.
However, women travel across the country, or indeed across countries, to access the latest trials and it is important all women are aware of the opportunities offered by taking part in clinical trials. In some cases it may be that there are no suitable trials, but discussing this with the woman helps them understand the situation and be better informed about the options available to them.
Clinical Nurse Specialists (CNSs) and other nurses involved in the care of women with ovarian cancer do an amazing job, with many going above and beyond to provide the support women and their families need.
However, responses from both women and the nurses providing their care show that CNSs are becoming increasingly stretched. Many are struggling to meet the medical needs of women with ovarian cancer and lack the time to provide the support needed around mental health and wider holistic needs. Many even struggle to find the time to talk through the possible symptoms of recurrence.
While headline figures suggest the majority of women are in contact with a CNS, the reality shows CNSs are not being given the time to provide women with the care they need.
CNSs are a huge asset to the NHS and it is important they receive the appropriate investment and support so they are able to deliver the care they are committed to.
Being diagnosed with and treated for ovarian cancer does not just place a physical strain on women, but a mental strain too. Pathfinder 2016 shows a high level of unmet need among women with ovarian cancer in relation to their mental wellbeing. A large number of women with ovarian cancer also report difficulties with body image and regaining sexual intimacy following treatment.
Women diagnosed with recurrent ovarian cancer are less likely to be directly introduced to a CNS than women first diagnosed and less likely to have their case discussed at Multi-Disciplinary Team meetings. This in part reflects a lack of resource but also the lack of a clear pathway for recurrent ovarian cancer in much of the UK; except in Scotland, existing clinical guidelines stop after first-line treatment.
These are tentative findings and based on the recollection of family members and friends rather than women themselves. However, existing patient experience measures are not capturing the experiences of cancer patients right at the end of life. This makes it difficult to assess the quality of care and how services can be further developed. The first step in addressing this is the development of a metric to measure the quality of end of life care.
As well as the impact on the individual woman, a diagnosis of ovarian cancer also carries implications for her wider family and friends. It can place a huge emotional burden on women’s families and it is important family members and those involved in providing care receive support and counselling as appropriate.
To develop our shared understanding of the diagnostic and treatment pathway for ovarian cancer, and better pinpoint where change is needed, an ovarian cancer audit is called for in all four nations. This builds on the recommendations of the Chief Medical Officer in England and the last ovarian cancer audit conducted in Northern Ireland.
The findings in Pathfinder 2016 show the progress that has been made in diagnosing and treating ovarian cancer. While awareness levels are still low, more women do now know the symptoms to look out for, GPs have better access to diagnostic tests and more women with ovarian cancer are being provided with information about their diagnosis and treatment.
However, it is clear that much remains to be done. Too many women continue to think cervical screening protects them against ovarian cancer and many have a false confidence in their ability to spot the symptoms of ovarian cancer.
Women continue to face repeat visits to their GP before being referred for diagnostic tests and many GPs still falsely believe symptoms only present themselves in the later stages of the disease and continue to be unaware of the importance of family history on both sides of the family.
When it comes to treatment, many women with ovarian cancer are going without support to manage both their medical and wider needs as CNSs are stretched to breaking point. For those women with recurrent ovarian cancer, there is even less support and pitifully few treatment options.
Pathfinder 2016 shows what needs to change if we are to diagnose ovarian cancer earlier and ensure more women receive the support they need as they go through treatment. This, together with investment in research to find the treatments of tomorrow, shows the way forward to transform outcomes for women with ovarian cancer. We must now all commit to following it.