TheOvacomeTeamPartner in reply to Lou536 years ago

Hello Lou53

Here is a response from Victoria, our CEO:

Thank you for your message. We are really keen to work with other ovarian cancer charities - both the larger national ones and the smaller or more local ones.

Here are some of the ways we work together:

Along with the other ovarian charities, we are part of the All-Party Parliamentary Group (APPG) for ovarian cancer to provide a collective campaigning voice for ovarian cancer. In addition we have an agreed approach to attending all Round Table meetings with ministers - all four national charities (Eve Appeal, Ovarian Cancer Action (OCA), Target Ovarian Cancer and Ovacome) jointly share and raise the same strategic issues at the Round Tables with the Cancer Minister and we worked together on a joint response to submit to the NHS on the NHS 10 year strategy last month. This is really important as all four national ovarian charities focus on providing different services and so our voice is really powerful when we come together.

The ovarian charities are all members of Cancer 52, which represents organisations as a collective voice united in improving the future for everyone affected by rare and less common cancers.

I regularly meet with the other CEOs (not just in ovarian but in other cancers) to collaborate and get behind shared campaigns. For example, recently we supported some non-ovarian cancer charities to campaign for better access to cancer medicines in Northern Ireland because their campaign is really strong and will benefit our members too.

All four charities worked together to produce the Younger Woman’s Guide to Ovarian Cancer and the Ovarian Cancer Awareness Month website. Next year a poster designed by Eve, OCA and Ovacome will be distributed to all GP surgeries across the UK. This will raise awareness of BRCA among those visiting surgeries.

OCA (who do not have a support line) and Eve (who focus on initial diagnosis) refer any support queries they receive on to our Support Service. Likewise, we refer non-ovarian gynae queries onto Eve and we use OCA genetics information as part of our information provision.

Over the course of 2018 Ovacome has been asked by both Eve and OCA to support specific campaigns and we have loved doing so, they have also shared some of our information. This is great for all of us because it makes good use of our resources, saves time, reaches more women and means that donations to the charities count for more as there is less duplication across the charities.

Other than only working with the national gynae charities, we always network with more local gynae support charities, hospital charities, hospices and local support groups when we visit an area for one of our Ova to You sessions. We regularly provide resources to local support charities and groups and we are always happy to turn up and give 'ovarian information' at charity or support events run by others.

We completely agree with you! Change will never happen unless we pull together. The more often we work with other charities, the more we find ways to do more. We will keep on being creative, sharing and joining up wherever we can. This year we have had some great feedback to Ovacome from some members who have seen some of the work we have been doing with others, it's a win:win situation for all of us.

Best wishes

Victoria

Ovacome CEO

VictoriaOvacomePartnerMy Ovacome Team in reply to Lou535 years ago

Dear Lou53,

Thanks for suggesting this. We really do believe in amplifying the voices of all those affected by ovarian cancer and we do have both local and national campaigns under way...and more planned.

I know that Anna shared the parliamentary debate on the forum and we also put it out on social media. This year we will be working on a couple of campaigns to highlight specific areas where we feel improvement could be made by the NHS and MPs. We have also shared a number of petitions over the last year. Although we post on the forum about this, we would direct people to our social media pages first and foremost for this type of information, as we want to make sure the forum remains primarily a space for the people affected by ovarian cancer to support one another. We want the forum focus to be between the members, and our social media is our main method of sharing campaign information.

At the request of our membership we started running the Ova to You sessions in January of this year and have fully involved members in the content of the session. The main focus of these sessions is to provide direct support, to demystify clinical information and processes and to help individuals get the answers to the questions that they have around treatment and living with the disease, from our support team. We also work with local partners and charities to ensure that there is ongoing and effective support for our members in each of the areas that we visit. The real strength of the sessions though is that women come together and meet others in similar circumstances to share experiences in a relaxed and supportive atmosphere.

We ask all attendees what they would like us to continue to provide in their local areas and we then put in place plans to do so; sustainable support is really important. Every session that we run is different and depends much upon local need. We would not run campaign sessions within an Ova to You session because the focus is on providing the face-to-face support and group opportunities that our members requested, as these were not available to them locally.

Apart from Ova to You we do have campaign work to do and the more the merrier! I would welcome the chance to have a chat and get your views. It would be great to meet you at Ova to You Manchester if you are available and perhaps you and I could head off and get a coffee to discuss it further? Please do contact me directly if you would like to find out more (v.clare@ovacome.org.uk or 0207 299 6654).

Thank you again for getting in touch. We're always really keen to hear our members' views on what is important to them and how we can work at Ovacome to ensure we are doing all that is needed.

Best wishes

Victoria

Sailor666 in reply to VictoriaOvacome5 years ago

I am worried by knowing we in the UK are behind other Countries in this massive killer disease. WHY IS THIS.

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OvacomeSupportPartnerMy Ovacome Team in reply to Sailor6665 years ago

Dear Sailor666

Thank you for your message. The difference between the UK and other countries is due to a variety of factors. Our sister charity Ovarian Cancer Action has a good summary of these on their website here:

ovarian.org.uk/news-and-blo...

At our Members Day in 2017 Professor Gordon Jayson talked about research which showed UK outcomes were comparable with Europe for women treated in specialist centres. You can watch his talks on our You Tube channel here:

youtube.com/channel/UCO7_bZ...

I hope this information is helpful.

Best wishes

Anna

OVacome Support Service Manager

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