25 years of The EPT
Marking our 25th year: 1998-2023
Monday 2 October marks 25 years since The Ectopic Pregnancy Trust was officially registered as a charity. Throughout our 25 years, providing reliable information and support on ectopic pregnancy with community and empathy, has been at the heart of what we do.
The EPT remains dedicated to ectopic pregnancy – We are the leading charity focusing on ectopic pregnancy in providing such extensive general information and ongoing peer support for anyone affected by the condition. In this 25th year, we acknowledge the work of the charity, honour the personal experiences of our generous supporters, and look ahead to further our shared cause.
Covering 25 years of dedication in one article would be an impossible task. To capture an overview of our work over that time, we asked the members of The EPT team to choose some of the activities that stand out to them. Here you can read about some key moments that we have selected to share with you. To stay connected with The EPT’s activities you can also visit our blog.
Providing reliable information
Munira (Director): When I was discharged from hospital after my ectopic pregnancy, I had a million and one questions and felt very alone. The EPT’s website provided some of the answers I was looking for at such a confusing time. It was crucial to find information that was reliable and that remains a priority of the charity to this day. Earlier in 2023, we were awarded the PIF-Tick as a trusted information creator. Achieving PIF TICK certification demonstrates our commitment to providing high-quality health information. This quality mark acknowledges the significant amount of work required to ensure that our information is current and of high standard.
Helen (Projects Coordinator): As a charity focused on providing reliable information and support to anyone affected by ectopic pregnancy, it is vital to us that those who need us are not only able to find our resources but also be able to use them with ease. Our very first website was launched in 2000, a valuable resource for anyone experiencing this devastating condition. It was nominated for a number of awards and won an E-Wellbeing award. We continue to improve the website to make it the best it can be. As part of the latest refresh, we added ReachDeck which supports people with visual impairments and hidden disabilities as well as non-native speakers and people with digital skills needs – everyone should feel welcomed and included in our digital-first world.
Your website gave me answers and brought me more comfort than you can realise. - website user
Sam (Hospital Leaflets Coordinator): I feel the best way that I can support the Trust is to spend time putting our treatment information packs together for anyone affected by ectopic pregnancy and then sending them to hospitals for distribution. Our leaflets were Highly Commended by The BMA (British Medical Association) in 2019 and we also have posters that are available free of charge to UK hospitals, wards, units, and healthcare professionals, and are available to download. It was a privilege to attend the awards ceremony at the BMA in London. This information can then be handed to patients to help explain their diagnosis and treatment. Our leaflets are also available in multiple languages and in accessible print. The need for this free resource is shown by the increasing numbers that healthcare professionals request annually. By September 2023, we sent nearly 10,000 treatment packs and we expect to exceed the amount sent out in previous years once again at the end of this year.
‘A wealth of information, support and hope to sufferers of ectopic pregnancy’ – BMA Awards Reviewer commenting on the EPT’s patient information suite
Sophie (Support team, virtual support groups): It is so important to provide a range of support options so people can find a route that works for them. Technology has changed vastly since the charity’s beginnings and we have embraced opportunities to expand our support services. We continue to adapt to meet need. Whether someone wishes to contact us one-to-one via our call-back service or email exchanges or they prefer to connect with others through our virtual support groups and online forum, we seek to offer options to make every person in need of support feel comfortable. Through our collaborations with LanguageLine, SignVideo, and Remark!, we try hard to tackle barriers to health https://www.remarkcommunity.org/information. Crucially, our services remain free of charge to anyone who needs us.
The EPT was the first support I came across after my ectopic pregnancy loss. Realising you aren’t alone and everything you feel is valid, it helps massively. - Nicole
Kerri (Social Media Coordinator): Coordinating The EPT’s social media channels is a huge honour, especially after taking comfort from The EPT’s Facebook page during my own ectopic pregnancy experience. Awareness of ectopic pregnancy and its symptoms can save lives and reduce the risk of serious harm. As a charity, we are passionate about raising crucial awareness among healthcare professionals as well as the general public. Social media has vastly changed the way we access information and The EPT first joined Facebook in May 2010 to reach more people and engage with our community. We have since built communities on Twitter (now known as X), LinkedIn, Instagram and TikTok, with a combined following of over 37,200. These platforms allow us to reach a wide range of people, keep our community up to date with our activities, celebrate our fundraisers’ achievements and, of course, raise awareness together.
Raising awareness and what help there is available after an ectopic pregnancy is so important. - Sarah
Lois (Fundraising Support Co-ordinator): To have a day dedicated to Ectopic Pregnancy Awareness is extremely validating for my own experience of an ectopic pregnancy. It is also a fantastic way to open conversations, spread awareness, and enhance education – hopefully improving care for others and making sure anyone who needs us knows we are here. On 1 August 2022, we hosted the first ever Ectopic Pregnancy Awareness Day, a day dedicated to the approximately one in 80 pregnancies that are ectopic. Sharing your personal experiences made a difference. Social media posts from The Ectopic Pregnancy Trust during this second year reached over half a million users.
Thank you for the first Ectopic Pregnancy Awareness Day, it’s really helped me to talk about my own experience. - Suki
Karen (Training Coordinator): I am passionate about raising awareness of ectopic pregnancy among health care teams. By working collaboratively with healthcare professionals, we hope to effect further change and last year we started work on our ‘Think Ectopic’ project. This seeks to remind healthcare professionals working in primary, urgent, and emergency care of ectopic pregnancy as a condition and the need to refer anyone with symptoms to specialist early pregnancy care. We gathered feedback from a range of primary care professionals at a recent conference in Spring to ask their thoughts on our Think Ectopic campaign. The responses were overwhelmingly positive. All respondents said that they consider the Think Ectopic campaign as an effective way to increase awareness of ectopic pregnancy symptoms and the referral process. 96% of respondents said they would use the biocard. This is very encouraging to know that we are working along the right lines. Following on from such positive reception, the first phase of the project’s pilot is currently well under way.
Natalie (Press Officer): Helping The EPT to spread awareness of ectopic pregnancy and its symptoms via the media is hugely rewarding. I am so grateful to our wonderful fundraisers and supporters who so bravely share their own stories publicly to help achieve coverage in both national and regional media: The Ectopic Pregnancy Trust provides information on the symptoms, treatments, and impacts of ectopic pregnancy. To gain media coverage in order to increase awareness, I work with journalists and liaise with our fundraisers, volunteers and wider community to share their stories. Our dedicated Ambassadors have also shared their personal experiences to raise awareness. In addition, we give talks to healthcare professionals to remind them about ectopic pregnancy as a condition and, in 2009, we hosted our first conference on The Management of Early Pregnancy Complications. Today, we are proud to continue to improve care, speaking to hundreds of professionals at conferences annually as well as through our online EPT Talks
Beth (Support team, emails): We have always been passionate about learning from, and working with, a wide range of organisations to ensure that ectopic pregnancy remains at the forefront of important conversations. Our collaborations include being on the executive committee for The Association of Early Pregnancy Units, and a member of Pregnancy & Baby Charities Network, and the All-Party Parliamentary Group on Baby Loss. In 2004, we were a founding partner of the formal collaboration for Baby Loss Awareness Week, at the forefront of commemorating the all-too-brief lives of babies lost through ectopic pregnancy and we remain part of the Working Group today.
Sonal (Membership Secretary and Medical Adviser): After years of pushing for a clinical guideline for early pregnancy care, we played a key stakeholder role in the development of The National Institute for Care and Health Excellence guidelines on the diagnosis and management of miscarriage and ectopic pregnancy, significantly improving the standardisation of care. Following representation as a stakeholder on the introduction of the NICE Guideline for Pain and Bleeding in Early Pregnancy in 2012, we remain a key stakeholder for updating the clinical guideline on Ectopic pregnancy and miscarriage: diagnosis and initial management. We have continued to participate in the updates over the decade since.
Joanne (Support team, support line): We heard many heart-wrenching stories of ectopic pregnancy loss with added difficulties during the pandemic. The EPT is a Core Participant in the UK Covid-19 enquiry with 12 other pregnancy, baby, and parenting charities for the Healthcare Module. The Covid Inquiry hearings for Module 3 (Healthcare) are expected to be held next year in Autumn 2024 and The EPT has included submissions to ensure the experiences of people affected by ectopic pregnancy during Covid-19 are heard and lessons are learned. Covid-19 had a huge impact on the women and families going through ectopic pregnancy. Many women and people found themselves in hospital hearing the news, having treatment, including surgery, alone and without the support of loved ones.
Kat (Support Team, emails): The EPT worked in collaboration with other charities and with the support of the Department of Health and the APPG on Baby Loss to produce a National Bereavement Care Pathway. Introduced in 2017, we worked hard to include meaningful sections on ectopic pregnancy within the Miscarriage, Ectopic Pregnancy and Molar Pregnancy Pathway so that bereaved people are offered high standards of person-centred, empathic and safe care after an ectopic pregnancy. We continue to assist with regular updates, the most recent being in 2022.
You can find out more about our collaborations here, and guidance here.
Gita (Support Team, Emails): I’m grateful to be able to provide support for others who have unfortunately had the same experience as myself. I’m honoured and privileged that people entrust us with their stories and turn to us for support. Through that support, we hear first-hand accounts from people who experience ectopic pregnancy and their partners who share their lived-experiences. In this way, we are equipped to be able to provide the patients’ voice to inform help inform research. Currently, The Ectopic Pregnancy Trust, along with an international team of healthcare professionals and researchers, is supporting a Priority Setting Partnership (PSP) for ectopic pregnancy, which aims to identify and prioritise unanswered research questions about the causes, diagnosis, and benefits and safety of various treatments for ectopic pregnancy.
Michele (Support team, forums): Running from 2016 to 2021, a group of researchers, led by EPT Trustee Professor Andrew Horne, conducted the largest clinical trial on ectopic pregnancy to date, hoping to improve medical treatment of tubal ectopic pregnancy (pregnancy in a Fallopian tube). This was named the GEM3 trial.
Katie (Support team, emails): PUDDLES (Parents who suffer pregnancy loss and whose babies die during the pandemic) is a global collaboration between the UK, Australia, Brazil, Canada, India, Italy, and New Zealand to understand the experiences of bereaved parents during the COVID-19 pandemic. The EPT has assisted with the study and findings will be published soon.
You can find out more about the research we have supported here.
Jill (Fundraising Coordinator): As I look after our amazing fundraisers, I have chosen fundraising activities as my reflection. Of course, none of the work we have shared in this post would be possible without the generosity of our fundraisers. When the charity started, there were just a handful of fundraisers and now we have grown to have annual events that are very popular with some people even joining every year for one of our activities. From our annual London Marathon, and Great North Run team, to our bespoke virtual events such as The EPT1000, EPT80in1 and mini challenges, me and the fundraising team ensure that everyone receives personalised support and care throughout their fundraising journey. It is an honour to get to know each of our fundraisers and support them through their fundraising journey.
Remember: Join our Walk of Remembrance during this Baby Loss Awareness Week - in solidarity, for everyone whose lives have been affected by ectopic pregnancy
Commemorate: Support our work though our meaningful EPT merchandise
Purchasing items from The Ectopic Pregnancy Trust shop helps us to continue to support those affected by ectopic pregnancy. Each item raises awareness of ectopic pregnancy, our charity, and the crucial work that we do.
Treasure: Mark your own personal experience of ectopic pregnancy by planting a Treasured Tulip
The EPT exists for you together with all members of our ectopic pregnancy community. The work that we do every single day is driven by your experiences and with the aim of being there for the next person who turns to us for support.
In 2021, we created a virtual remembrance garden for anyone who experiences ectopic pregnancy loss named ‘Treasured Tulips’. Treasured Tulips are a unique way for you to remember and commemorate your pregnancy. You can choose a virtual tulip to “plant” in the EPT’s Treasured Tulips gardens on Facebook, Instagram, LinkedIn and Twitter and offer a donation to help us continue our work, should you wish. At the time of writing, we have received over 1660 tulip dedications and posted 207 patches to our social media channels.
Having this to mark our little one that we did not get to meet is more helpful than you will ever realise. I found it helped start a conversation with people too. Knowing I was not along brought so much comfort. - Abi
We have come far but there is still a long way to go and we will remain here for as long as there are people affected by ectopic pregnancy in need of support and information.
None of these achievements or future plans would be possible without the incredible generosity and hard work of all of our ambassadors, trustees, medical advisers, supporters, volunteers, fundraisers, and donors. We are grateful to everyone who lends their time, skills, and experiences for this cause that is close to all of our hearts. Thank you to our amazing community.