Information for practice teams

Around 5,900 women are diagnosed with ovarian cancer in England each year –  around 4,900 (more than 80%) are aged 50 and over [1].

Outcomes in Britain are worse than those in some European countries and recent estimates suggest that around 500 deaths from ovarian cancer could be avoided each year if survival rates matched the best in Europe.

More than 90% of women diagnosed with the earliest stage ovarian cancer (stage I) survive their disease for at least five years. This figure is around 5% for those women diagnosed with the most advanced stage disease (stage  IV) [2].

Research has shown that even women with early stage disease can experience symptoms.

References

1. Data provided by the Office for National Statistics on  request, July 2013. Number of cases of ovarian cancer (ICD-10: C56-C57)  diagnosed in England in 2011 (for age groups, the annual average number of cases  between 2009 and 2011 is given. Similar data can be found here: http://www.ons.gov.uk/ons/rel/vsob1/cancer-statistics-registrations--england--series-mb1-/index.html

2. Five-Year Stage-Specific Relative Survival Rates, Adults (Ages 15-99), Anglia  Cancer Network 2004-2008, Eastern Cancer Registry and Information Centre  (ECRIC). Personal communication. www.ecric.org.uk

The campaign targets all women over 50, the age group most at risk of developing ovarian cancer, and their friends and family.

The regional campaign ran from 10 February until 16 March 2014, highlighting  the main message: Feeling bloated, most days, for three weeks or more  could be a sign of ovarian cancer. Tell your doctor.

This key message was promoted through a range of  different channels across the North West TV region including:

• Regional television
• Regional radio
• Regional press

The campaign also included PR and face-to-face  events in various locations across North West England. They took place in public  areas like shopping centres. A schedule of events with more details of dates and locations is available to download.

Download event schedule

Focusing on just one key symptom keeps the message simple and direct. A panel of experts and clinicians advised that, of the symptoms highlighted in the NICE  guidelines, persistent abdominal distension (‘bloating’) was the key possible sign of ovarian cancer.

We know that people delay going to see their GP for a variety of reasons. They may not realise their symptoms are serious, worry about wasting the GP’s  time or be embarrassed. When tested with the target audience (women aged 50 and over), women felt the campaign provided reassurance that they should see their GP if they had experienced persistent bloating.

It is essential to highlight the importance of persistence and frequency of bloating as part of the campaign message. When tested with the target audience, women felt the campaign needed to explain what was meant by ‘persistent’. They asked for clarity – to know how long they should wait before going to see their GP.

Be Clear on Cancer uses everyday language, so the description in the NICE guidelines (more than 12 times per month) was reworded to reflect how women would describe persistent bloating.

Women:

• aged over 50 – the risk of developing ovarian cancer increases with age
• who are overweight or obese
• who smoke are at higher risk of developing some types of ovarian cancer
• using hormone replacement therapy (HRT), particularly oestrogen-only HRT. The longer women take HRT, the more the risk may increase
• with a family history of ovarian or breast cancer

The public-facing information highlights having any of the following symptoms, ‘most days, for three weeks or more’:

• Unexplained bloating
• Feeling full quickly or loss of appetite
• Pelvic or stomach pain
• Needing to pee urgently or more frequently than  normal
• Changes in bowel habits
• Extreme fatigue (feeling very tired)
• Unexplained weight loss

Although over 80% [1] of ovarian cancers occur in women over 50, we do not want to discourage those who fall under this age group from going to their GP with persistent bloating.

The campaign leaflets and web copy will use case studies of women aged over 50. Where possible, advertising in the media will also target women over 50. The campaign materials were specifically tested with women in this age group.

References

1. Data  provided by the Office for National Statistics on request, July 2013. Number of  cases of ovarian cancer (ICD-10: C56-C57) diagnosed in England in 2011 (for age  groups, the annual average number of cases between 2009 and 2011 is given.  Similar data can be found here: http://www.ons.gov.uk/ons/rel/vsob1/cancer-statistics-registrations--england--series-mb1-/index.html

Confidence in knowledge of symptoms of ovarian cancer increased significantly in the Anglia/Essex pilot area after the campaign, up from 20% to 31% of people saying they were ‘very/fairly confident’ 57% of women agreed that ‘the  advertising told me something new’

More than six in 10 women are diagnosed with stage III or IV ovarian cancer, and only around three in 10 women are diagnosed at the earliest stage [1].

The approval of CA125 as a diagnostic test for ovarian cancer within primary care and work to support direct access to non-obstructive ultrasound has made diagnosing and excluding ovarian cancer simpler for GPs. This adds to the timeliness of this campaign.

References

1. ICBP Module 1 Working Group; (2012) Stage at diagnosis  and ovarian cancer survival: Evidence from the International Cancer Benchmarking  Partnership. Gynecologic oncology, 127 (1). pp. 75-82. ISSN 0090-8258 DOI: 10.1016/j.ygyno.2012.06.033

You may see more women coming to your practice with the symptom of persistent bloating, but it is anticipated that this should be manageable.

An average of 28 cases of ovarian cancer are diagnosed in each clinical commissioning group (CCG) per year. To put it into perspective, an average of around 2 cases of ovarian cancer are diagnosed in a clinical commissioning group every month [1]. Analysis of GP attendance data during the local pilots in early 2013 showed a 22% increase. This equates to 0.04 additional  patients, per practice, per week.

NICE guidelines recommend that women with symptoms of ovarian cancer have diagnostic tests and/or be urgently referred if appropriate. Prepare for more assessments and referrals and, as a result, more women ringing up asking for test results.

The campaign may prompt women to discuss symptoms with your practice nurse as part of other appointments or visits to clinics. So, as well as GPs, nurses need to be aware of the key messages.

References

1. Number of cases of ovarian cancer (ICD-10: C56-C57) diagnosed in England in 2011  divided by the number of CCGs (211). Calculated by the Statistical  Information Team at Cancer Research UK using data provided by the Office for  National Statistics on request, July 2013. Similar data can be found here:  http://www.ons.gov.uk/ons/rel/vsob1/cancer-statistics-registrations--england--series-mb1-/index.html

If a patient presents with any of the symptoms of  ovarian cancer, the NICE guidelines recommend carrying out diagnostic tests. These include measuring serum CA125 in primary care and arranging an ultrasound scan of the abdomen and pelvis, as appropriate. The guidelines also suggest  considering carrying out tests in primary care if a woman reports unexplained  weight loss, fatigue or changes in bowel habits.

If a physical examination identifies ascites and/or a pelvic or abdominal mass (which is not obviously uterine fibroids), GPs can refer urgently under the two-week wait referral system.

It’s important to remember that women may use the term ‘bloating’ to describe both swelling of the abdomen that comes and goes, and abdominal distension. GPs and nurses can ask women to explain their bloating in more detail and continue to use their clinical judgement to discern those who are at higher risk and warrant investigation.

NHS Improving Quality, as part of NHS England, will work with Strategic Clinical  Networks to help ensure the NHS is prepared for the ovarian cancer campaign.  Trusts have been informed about the campaign and there is an additional  briefing sheet to support hospital providers.

Download NHS tripartite letter (campaign announcement)

Nurses are crucial to the success of the campaign. People can delay going to see their GP for a variety of reasons, including not thinking their symptoms are serious. Women may be more willing to open up to a nurse. They can reassure them that it’s okay to get symptoms checked out.

As part of their day-to-day work, nurses can look out for patients who could be most at risk. They can make the most of timely and appropriate opportunities  to mention the campaign, this might be during women-only specialist clinics, NHS  health checks or as part of cervical screening appointments with women aged 50  and over, when they’ll be discussing gynaecological issues anyway.

If nurses treat women for long term conditions, they’re in an ideal position to ask patients if they have noticed any unexplained symptoms or are concerned about anything else.

Nurses can also:

Talk about ovarian cancer symptoms. The campaign may encourage people who have ignored symptoms to talk to nurses. But they may be afraid, not find it easy to communicate their symptoms, or worry they’re wasting your time. Nurses can use the campaign to talk about any symptoms with women over 50 who don’t approach them first, for example as part of cervical screening appointments. Or if a patient comes to see them about something else, they can ask if they have any other concerns. If nurses are caring for patients in the community, they can take campaign leaflets with you to use as a prompt.

Give permission. Our target audience can delay going to see their GP and often seek permission to make an appointment. If someone mentions feeling bloated a lot of the time, nurses can ask questions to find out more about the nature of their symptoms and, where relevant, encourage patients to visit their doctor. If a patient needs extra reassurance, they could mention  that ‘the nurse sent them’. It may be the push they need to get themselves checked out. Suggest they see their GP again if their symptom doesn’t go away.

Encourage colleagues to support this regional pilot campaign. Everyone has an important role to play. Nurses can suggest people they work with check out the adverts on NHS Choices and make sure they know that briefing sheets are available. They can also brief healthcare assistants about the campaign so they can bear it in mind in their day-to-day work too.

Brief colleagues. The whole practice team needs to be aware of this campaign, so they can support it. Practice managers can brief practice nurses and GPs on the key messages – there are briefing sheets for both. Tell your patient participation groups too. Encourage everyone to check out the campaign on NHS Choices.

Plan for increased activity. Be prepared for women who have the symptom of persistent bloating wanting appointments. But remind your team  that they need to be mindful that women may feel that they’re wasting their GP’s time. Plan for an increase in the number of women sent for diagnostic tests and referred via the urgent 2 Week Wait referral system.

Promote the ovarian campaign. Display posters and leaflets and encourage colleagues to talk about the ovarian cancer campaign. Timely and  appropriate opportunities for them to mention the campaign include during women-only specialist clinics and as part of cervical screening appointments with women aged 50 and over. It is often face-to-face discussion that changes behaviour. Talking might prompt someone to make an appointment or open up about  their symptoms.

You can order hard copies of the ovarian cancer leaflets and posters free of  charge from orderline or by calling 0300 123 1002.

A range of additional Be Clear on Cancer materials have been developed for the ovarian cancer campaign.

PDFs for these materials are available to download from this page and can be used alongside the posters and leaflets to promote and support the campaign locally.

The public-facing website for the Be Clear on Cancer campaign is on NHS Choices.

Download a briefing sheet for practice teams

Download a briefing sheet for GPs

Download a briefing sheet for pharmacy teams

Download a briefing sheet for community groups and volunteers

There are lots of resources to support practice managers and practice teams, including National General Practice Profiles with cancer data for individual practices. One source of support for frontline staff is a free to access toolkit developed by Lancashire & South Cumbria Cancer Network.

Be Clear on Cancer is the overarching brand for a programme of work, which aims to improve early diagnosis of cancer by raising awareness of symptoms and making it easier for people to discuss them with their GP. Each campaign is tested locally to see how people respond and what impact it has on their  behaviour. The results inform whether the campaign is taken forward on a  regional and then a national level. Since early 2011, the Be Clear on Cancer brand has been used to promote symptom awareness and early diagnosis of eight different cancers.

Be Clear on Cancer campaigns continue to run throughout 2013/14, led by Public Health England, working in partnership with the Department of Health and  NHS England. The national lung ‘reminder’ campaign was the first campaign of  2013/14, followed by the national ‘Blood in Pee’ campaign in the autumn. A national breast cancer in women over 70 campaign will be running alongside two  regional pilots – this one in the North West TV region focusing on ovarian cancer; and one in North East and Borders TV regions focussing on oesophago-gastric cancer.

Find out more about the background to Be Clear on Cancer and how the campaigns are developed.

For more information, or if you have any queries, please contact partnerships@phe.gov.uk.