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Women talkingThe 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.

Awareness

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.

Action

National awareness campaigns that include the symptoms of ovarian cancer in England, Northern Ireland, Scotland and Wales to ensure women know the symptoms to look out for and the importance of going to their GP.

Diagnosis

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.

Action

Trials of patient self-referral for diagnostic tests, as committed to in the latest cancer strategy in England, to include ovarian cancer.

 

Action

Target Ovarian Cancer to double the number of GPs who have completed accredited training on ovarian cancer.

Genetics

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.

Action

Target Ovarian Cancer to promote information and training for GPs stressing the importance of family history on both sides.

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. 

Action

A sustainable model of pre-testing counselling, led by genetic services, to be delivered as genetic testing is rolled out across the UK for all women with ovarian cancer at risk of carrying the BRCA gene mutation.

Treatment

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.

Action

Target Ovarian Cancer to develop personalised information for women with ovarian cancer reflecting the type of cancer and the stage they are at in their treatment.

 

Action

All women to be provided with written information at the point of diagnosis and at other significant milestones in their care and treatment.

 Clinical trials

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.

Action

For the NHS in England, Northern Ireland, Scotland and Wales to ensure all women with ovarian cancer are given information on clinical trials and how to access them.

 

Action

Target Ovarian Cancer to continue to provide patient facing information on clinical trials through its Ovarian Cancer Clinical Trials Information Centre.

Support

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.

Action

For the NHS to honour the commitment in the new cancer strategy in England for all people with cancer to have access to a Clinical Nurse Specialist and for an equivalent commitment to be made in Northern Ireland, Scotland and Wales. 

 

Action

Development of a new metric, based on the extent to which people with cancer’s needs are met, to measure the support delivered by Clinical Nurse Specialists.

 

Action

Target Ovarian Cancer to develop resources to help Clinical Nurse Specialists make the case for support for investment in services at their centre or unit.

Mental wellbeing and body image

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.

Action

Target Ovarian Cancer to invest in new services and support to help meet the wider needs, including mental health and sexuality, of women with ovarian cancer.

Recurrence

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.

Action

The National Institute for Health and Care Excellence to develop clinical guidelines for recurrent ovarian cancer.

Care in the final days

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.

Action

Public health bodies in England, Northern Ireland, Scotland and Wales to develop a metric for the quality of end of life care.

Family and friends

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.

Action

Family members and carers of women with ovarian cancer to be provided with information on sources of support at the point of diagnosis

Measuring progress

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.

Action

An ovarian cancer audit in England, Northern Ireland, Scotland and Wales mapping the diagnostic and treatment pathway for all women with ovarian cancer.

Final thoughts

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.