Where does my donation go?
Endometriosis UK is here to provide vital support services, reliable information, and a community for all those affected by endometriosis. As a charity, we have to raise all the money to undertake our work, every year. We are very grateful for everyone who has raised funds for us to allow us to continue. Your donations have helped us raise awareness of endometriosis, campaign for change, and continue to provide much needed information and support through our website, webinar programme, helpline, support groups, online forum, webinar series and most recently the development of a web chat service. There is so much more we want to do, and we continue to strive to raise funds, so we can not only carry on doing what we do now, but do even more.
Where does our funding come from?
As a charity, we have to raise money to undertake all our work. We plan what we want to do, and then we look for funding so we can deliver. Last year, over three quarters of our charity’s income came from donations from individuals, membership fees and people choosing to fundraise for us. We also receive a smaller proportion of grants, donations and sponsorship from other bodies including statutory bodies, grant-giving organisations and companies. We are very grateful to everyone who supports us financially and helps us carry out our work.
Does funding influence the work of Endometriosis UK or the services and information the charity offers?
No. We decide and plan what work we want to undertake, then we seek funds to deliver this. Whilst funds are vital in helping us further our work and achieve our aims and objectives to support the endometriosis community, we have a firm policy that organisations providing funding do not have any influence or involvement in our work.
How was the RCGP Menstrual Wellbeing Toolkit developed?
Endometriosis UK was instrumental in getting the Royal College of GPs (RCGP) to undertake a three year long Menstrual Wellbeing Spotlight Project, to produce resources for GPs to improve awareness and understanding of menstrual health conditions including endometriosis. We were determined to see this project go ahead as part of our drive to decrease diagnosis times, and so committed to raise funds to provide a grant to the RCGP to get the project going. We worked in partnership with the RCGP on the project, including being on the steering group set up to determine the outcomes of the project, as well as being involved with a patient led group sharing expertise and experiences. Whilst several companies provided funding the project, they had no influence on the project or materials it produced.
Has funding from companies given to Endometriosis UK influenced the ESHRE / BSGE guidelines?
No. Endometriosis UK is an independent charity, and these guidelines are written by ESHRE and BSGE – also both independent organisations.
Why does the charity have reserves?
It’s a requirement of annual reporting to the Charity Commission to have a plan for financial reserves. Charities, including Endometriosis UK, hold money in reserve to ensure they can continue to be there and provide services come what may, even if there is an unexpected drop in income. Having too low reserves risks unplanned and unmanaged closure and insolvency. We believe there is so much more that we need to do to support the endometriosis community, drive down diagnosis time, campaign for change and we want to grow, and so over the last few years we have been building our reserves from a very low level so that we can continue our services and grow our charitable work.
In the last financial year we received significant support through donations and individuals choosing to fundraise for us – a massive thank you to everyone who has raised funds. This has allowed us to plan for new work to expand our activities in the future. Given the uncertainties due to the pandemic and future funding, we are taking a planned and sustainable approach to growing the charity, with more to come over the year. So far, we’ve set up and launched our Web Chat service, continued our webinar programme and increased the support available across the UK. Next, we’re going to be launching a new website and updating our information resources.
Why are some of the documents on Endometriosis UK’s website several years old?
We provide information in a range of ways; through our webpages and downloadable materials, webinar programme, Support Groups, Helpline and Web Chat. When we are developing materials, all medical information has to be approved by qualified medical experts, and are produced in collaboration with our Medical Advisory Panel as well as being reviewed by those with endometriosis. Not all our documents are as up to date as we would like, and we have plans in place to update these over the coming months.
Does Endometriosis UK fund research?
We support research through our direct involvement in UK research projects, supporting the endometriosis research community and campaigning for more government and other investment in endometriosis research. Research proposals in the UK have to demonstrate their relevance to patients, and to have what is called Patient Public Involvement – PPI. We work with a lot of researchers to provide PPI support to their projects, and examples of research we are currently involved with can be found here. As well as being participants in research proposals and consortia, we support University research teams in searching and applying for funding for their projects.
We know that more research into the cause, diagnosis and treatment for endometriosis is vitally needed. We want to be able to directly fund research in the future, commissioning projects based on what the endometriosis community most want to see. However, research is expensive, with some projects costing millions of pounds, and significantly more funding would be needed to do this.
You can also view our statement on fundraising transparency here