The All Party Parliamentary Group (APPG) on Ovarian Cancer held their Annual General Meeting (AGM) on 10 June. Set up in 2011, the APPG has over 60 members and meets several times during the year. Target Ovarian Cancer provides secretariat duties for the group. The purpose of the APPG is to provide a forum for MPs and Peers to discuss ovarian cancer related issues, to raise areas of concern with government or other policy makers, to raise the profile of ovarian cancer within parliament and to seek opportunities to help improve survival and quality of life for women with ovarian cancer.
As part of this year's AGM, the APPG looked back at activities from 2014-2015, with the following round-up:
The APPG has campaigned hard for an England wide Be Clear on Cancer campaign for ovarian cancer and was pivotal in securing first a local then regional pilot. In December 2014 the APPG were first to learn that a national campaign was unlikely, but following work by the Chair and the secretariat, there is now the opportunity for this decision to be reviewed.
- At December’s APPG meeting, the National Clinical Director for Cancer, Sean Duffy, reported that the interim findings from the regional pilot for a Be Clear on Cancer ovarian specific campaign indicated that the campaign had led to no increase in diagnoses and subsequently would not be put forward for a national campaign.
- Following this, speaking in the “Improving Cancer Outcomes” debate the Chair secured a commitment from the Minister to publish the interim findings from the regional pilot before the end of February and to meet with ovarian cancer charities to discuss the findings.
- Subsequently, interim findings from were published on 27 February and are available on the NCIN website. Overall findings showed that while the campaign succeeded in raising awareness of symptoms among women over 50, and the likelihood they would act, there was no corresponding increase in diagnoses, confirming Mr Duffy’s earlier comments.
- In March the Chair secured a meeting with Sean Duffy and Alaina MacDonald (Senior Public Affairs and Stakeholder Engagement Manager, NHS England), with Annwen Jones (Chief Executive, Target Ovarian Cancer) also attending. At the meeting Mr Duffy stressed that “the door was still open” on a future national Be Clear on Cancer campaign for ovarian cancer. However, he was clear that more in-depth evaluation needed to be carried out to understand why the increase in awareness did not lead to a corresponding increase in diagnoses.
- Mr Duffy proposed a meeting with all the key stakeholders to take place to inform the final evaluation. This has been organised by Target Ovarian Cancer and is taking place on 16 June. However, Mr Duffy was clear that even if the evaluation process can identify potential reasons why there was no increase in diagnoses and appropriate remedial action, a further regional trial would be required before there could be a national campaign.
While it may be possible to secure revisions and consequently a commitment to a further pilot of an ovarian cancer Be Clear on Cancer campaign, funding for the wider Be Clear on Cancer programme is not guaranteed beyond 2016. To help ensure a national ovarian cancer campaign, the APPG will be key in securing continued funding for Be Clear on Cancer and pushing for the inclusion of a national ovarian cancer campaign.
- Scotland: While the Scottish Executive previously confirmed that ovarian cancer will be included in the Detect Cancer Early programme, no date has yet been set.
- Northern Ireland: The Be Cancer Aware campaign launched in February 2015 but there are no current plans for an ovarian cancer specific campaign. In autumn 2014, following the campaigning of Una Crudden, a woman with ovarian cancer, the Public Health Agency in partnership with Target Ovarian Cancer and Angels of Hope, ran a community awareness campaign. We do not yet know what the results of this were. Una sadly died in December 2014.
- Wales: No progress for either a general or site-specific awareness campaign.
Research and analysis
Over the course of the year the APPG received a range of presentations on research ovarian cancer, including:
- Dr Jodie Moffat presented at the December APPG on the economics of early diagnosis. Dr Moffat described how if all CCGs could perform to the same standard as the best performing in terms of early diagnosis, £16 million could be saved through diagnosing women with ovarian cancer earlier, benefitting over 1,400 women.
- Professor Nigel Sparrow, Primary Care Lead at the Care Quality Commission and Chair of the Target Ovarian Cancer GP Advisory Board presented at the December meeting on regional variation in ovarian cancer. Professor Sparrow gave the two key challenges in ovarian cancer diagnosis as symptom awareness in women and access to diagnostics among GPs, many of whom lack access to basic diagnostic tests.
- Dr Ros Glasspool, Consultant Medical Oncologist at the Beatson West of Scotland Cancer Centre and Chair of the National Cancer Research Institute (NCRI) Ovarian Cancer Clinical Studies Subgroup addressed members on the topic of ‘How can UK research drive improvements in ovarian cancer survival?’ at the meeting on 4 March 2015. Dr Glasspool spoke about how survival rates for ovarian cancer in the UK were poor in comparison to other countries and focused on the role of clinical trials in driving new treatments and improved care. Dr Glasspool described the barriers posed by both the time taken to get a trial started and funding and said that possible solutions included a more flexible approach to research design
- Dr Simon Newman from Target Ovarian Cancer addressed the March APPG on the topic of regional variation in access to clinical trials, with some parts of the UK seeing well over half of all women with ovarian cancer enrolled into trials, compared to less than ten per cent in other parts of the country. Dr Newman described how misperceptions surrounding the cost or criteria of trials may be deterring Trusts from participating.
- Katherine Taylor, Acting Chief Executive of Ovarian Cancer Action, presented at the March APPG on BRCA testing. Ovarian Cancer Action have been campaigning for all women with ovarian cancer to receive BRCA testing.
- Dr Ranjit Manchanda, Consultant Gynaecological Oncologist at St Bartholomew’s Hospital and Honorary Senior Lecturer UCL, talked at the March 2015 meeting about research, funded by The Eve Appeal, looking at testing in the Jewish population for the BRCA cancer predisposing genes. Dr Manchanda explained how the BRCA mutation, which places individuals at greater risk of ovarian, breast or prostate cancer, is 20-40 times more common in the Ashkenazi Jewish population. Dr Manchanda’s study compared testing the entire population (in this case Ashkenazi Jews) compared to testing based on family history only (as is the current practice). His research has found that significantly more BRCA carriers were identified through this new approach.
- Find out more about the All Party Parliamentary Group on Ovarian Cancer
- Read our blog about the APPG AGM