2022-03-31-accounts - The Ectopic Pregnancy Trust

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The Ectopic Pregnancy Trust

Accounts for the Year Ending

31st March 2022

A NOTE FROM THE BOARD

This year has again been another challenging one. We continued to see the impacts of the Covid-19 crisis including within hospitals, the treatment of ectopic pregnancy and creating additional emotional stress on people during one of the toughest experiences of their lives. The Ectopic Pregnancy Trust has continued to be there to support those in need through this traumatic time through all the various lockdowns.

The condition remains the leading cause of death in the first trimester of pregnancy and has a devastating physical and emotional impact. People must come to terms with the risk of life to the woman/pregnant person, the experience of major invasive treatment or surgery, often performed in emergency circumstances, and a loss of part or all of the woman/person’s natural fertility, at the same time as coming to terms with losing their baby. All of this happens in a short period of time, often in circumstances where the people affected have never heard of the condition until it happens, and leaves people vulnerable to emotional difficulties in the months and sometimes years after the loss.

The Ectopic Pregnancy Trust remains a niche charity with limited resources but big ambitions. We provide exceptional support on a large scale and work tirelessly with key stakeholders, such as healthcare professionals and government, to improve diagnosis, treatment and raise awareness. We are successfully positioned and respected as key influencers in affecting change.

These great outcomes are achieved thanks to an amazing team of employees, consultants and volunteers who really care and give their time and support for nothing or nominal financial amounts. Without the dedication of team members. volunteers, fundraisers, trustees, medical advisers and ambassadors, we would not be able to provide our vital services that make such a huge difference at such a difficult time. The success of the Trust over this financial year is testament to everyone’s efforts and I thank everyone for their kind contribution.

Being a small charity, every penny of income is really made to count. No money is ever spent on advertising for donations. Instead, many who support us have used our services historically and understand first-hand the importance we play in helping people through this devastating experience, others have great sympathy for the cause. Thanks to everyone’s generosity and goodwill, we will continue to invest in our support services and work to make the hospital experience the best it can be in the difficult circumstances.

Noone should ever die from an ectopic pregnancy and, for anyone affected by the condition, the quality of their hospital experience and emotional support should be excellent.

Chris Woodward, Trustee, The Ectopic Pregnancy Trust

OUR PURPOSE AND STRATEGIC AIMS

Our Purpose

Ectopic pregnancy is a common, life-threatening condition that is the leading cause of maternal death in the first trimester of early pregnancy. The condition affects around 1 in 80 pregnancies in the UK and occurs when an embryo grows outside of the womb. The pregnancy can never be saved. A variety of treatments are available depending on the presenting symptoms and speed of diagnosis.

Ectopic pregnancies have an incidence of approximately 11 per 1,000 pregnancies which means that nearly 12,000 women have ectopic pregnancies diagnosed each year [Source: Confidential Enquiry into Maternal Deaths and Morbidity 2009-14, December 2016]. However, from anecdotal evidence, this may be closer to more than 30,000 admissions in the UK alone, as some instances may not be diagnosed as an ectopic pregnancy but instead as a miscarriage and undergo expectant management. Unfortunately, women can still die from an ectopic pregnancy with nine maternal deaths reported between 2009-14. [Source: Confidential Enquiry into Maternal Deaths and Morbidity 2009-14, December 2016]. The 2019 MBRRACE-UK Maternal Deaths and Morbidity Report 2015-17 states that six women died from early pregnancy problems, five of whom had ectopic pregnancies. All five women with ectopic pregnancies died within 48 hours of presentation and three of the six women who died were from Black or other ethnic minority groups. [Source: Confidential Enquiry into Maternal Deaths and Morbidity 2015-17, November 2019]. In the 21[st] century, noone should die of an ectopic pregnancy.

The legacy of suffering an ectopic pregnancy can be far-reaching for women, couples and wider family and friends. Women who suffer have to endure the physical trauma of invasive treatment and face their own mortality, the impact on their future fertility and the sad loss of losing their baby all very quickly. This can be a very frightening and distressing experience. The impact can be long-lasting and many people require ongoing support many months and even years after the experience. We also provide support when people are ready to try for another baby; whether they are struggling to conceive, are trying naturally or through assisted conception routes as well as those who do go on to conceive successfully. Given the increased risk of a subsequent ectopic pregnancy, early pregnancy post-ectopic is also a traumatic time for many people. The Trust also provides its services to medical professionals who treat early pregnancy complications.

We are a small, niche UK-based charity with an extensive reach. We have the support and guidance from world-class health care professionals as our medical advisers and trustees. Our team members are driven to help others through their own experiences and empathise with our service users since many have experienced pregnancy loss and difficulties of their own. We operate with the assistance of our committed team members, volunteers and fundraisers (many of whom have suffered an ectopic pregnancy and used our services historically) and are grateful for the support of our patrons.

Our services have been in demand now more than ever due to the challenges that the Covid-19 pandemic has brought. We continue to rise to that need.

Our Vision

The Ectopic Pregnancy Trust believes:

no woman or person should die from an ectopic pregnancy;
any woman or person capable of conceiving of childbearing age, who is sexually active or undergoing assisted reproductive technology (ART) treatment, having ectopic pregnancy symptoms, should be considered to be pregnant until proven otherwise to maximise the speed of diagnosis; anyone diagnosed with an ectopic pregnancy should receive as many treatment options as the stability of their medical condition allows; this includes conservative management, medical treatment with methotrexate, and surgical treatment;
it should be universally recognised that early diagnosis enables treatment choice, preserves fertility and enables a person to feel a greater degree of control over her medical condition. This commonly reduces the emotional impact of the ectopic pregnancy;
it should be universally recognised that the emotional effects of losing a baby can far outweigh the physical condition even in the early stages of pregnancy; and
anyone who has suffered an early pregnancy loss should have access to all of the information and support they need to aid their physical and emotional recovery.

Our Aims

Our strategic aims are:

to provide information and support to all persons affected by ectopic pregnancy and other early pregnancy complications and the healthcare professionals who care for them;
to advance education and to promote awareness of ectopic pregnancy and other early pregnancy complications among the medical profession and wider public; and
to support research into ectopic pregnancy and other early pregnancy conditions.

Strategic aim 1: Information and support

I've said it before and I will keep on saying it. I have eternal gratitude for the support of the EPT who saw me through some really difficult days. I will never forget x

I wanted to just thank you so much, your forums honestly got me through my surgery and recovery, as a 23 year old with no family around me at the time it really was a life saver so I just wanted to personally thank you for creating such a fantastic space.

I just want to say how awesome you guys are as a charity and support group network. I am father who (not physically) suffered an ectopic pregnancy but having to watch my wife struggle and nearly die was horrific so a massive thank you for the support we were given, it helped us cope and come through everything stronger.

We play a key role in disseminating information and supporting anyone who experiences the condition during diagnosis, treatment and recovery from the condition. Our medical advisers continue to support us to ensure we provide current and accurate information. Our services have been all the more needed during the Covid19 pandemic and lockdowns.

In spite of the numerous challenges of the pandemic and repeated lockdowns, the team has worked incredibly hard to maintain a consistently high-standard of service and, over the last financial year, we have achieved the following:

Information disseminated via our website

We believe that equipping people with information about the condition at such a challenging time helps to process what is happening to them. Empowering people in this way results in an increase in their personal knowledge (particularly on the assessment and treatment processes and expected outcomes) and thus reduces the degree of stress and confusion, helping the healing process.

The dedicated Covid-19 area on the website was updated to reflect guidance as the world opened up. It has been a much-needed resource and we have been able to provide information and support for people dealing with the trauma of ectopic pregnancy with the added challenges of being in the midst of a global pandemic and changing guidance.

Our website provides a valuable resource for women and their families who are being diagnosed or treated for ectopic pregnancy, with sections covering the definition of ectopic pregnancy, diagnosis and treatment, physical and emotional recovery and trying to conceive again as well as information for partners and medical professionals. The information is relevant, accurate, accessible, peer-reviewed and up-to-date. We had

800,000 sessions on our website. While this is in the region of previous years’ figures, we aim to increase sessions and will be putting in place a focused strategy with the web developer in the forthcoming financial year alongside improved search engine performance.

88% of users accessed the site via tablet/phone. This is consistent with previous years and reasons for such intense mobile-usage could include increased privacy or people accessing information at the point of need, such as while at hospital. Broadly consistent with the previous financial year, 67% of visitors are female with 33% male.

The new website was launched in June after extensive changes to its “look and feel” and all content was reviewed. We started with a soft launch section-by-section, starting with the crucial medical sections. We had worked closely with medical advisers and volunteers from a range of backgrounds: Medical advisers reviewed medical content and volunteers reviewed and created new non-medical content. The soft launch enabled us to be responsive to feedback for published sections while informing the as yet published areas. We worked with the organisation LGBT Mummies to ensure we provide a welcoming space for members of the LGBT communities and SignVideo to create BSL (British Sign Language) videos, explaining symptoms of ectopic pregnancy and the support we can provide.

We added the ReachDeck toolbar which has various accessibility tools to reduce barriers including being able to translate the website into 100 languages, reading aloud in 40 languages, screen-masking, and reducing distracting content. From implementation until the end of the first quarter, almost 6,000 people used the toolbar resources.

Information disseminated through hospitals

We distribute a suite of free patient information leaflets to hospitals across the UK. These are then disseminated to patients on diagnosis or when leaving hospital which means that people have access to information quickly and are signposted to our services at the point of need. This information suite was Highly Commended at the BMA Patient Information Awards 2019 and shortlisted for the overall BMA Patient Information Award 2019.

We produce three specialist leaflets on treatment routes for ectopic pregnancy (Surgical, Medical and Expectant Management) as well as one on Pregnancy of Unknown Location. The relevant leaflet is inserted into the back pocket of EPT-branded A5 wallets which have inserts covering general information on ectopic pregnancy and FAQs. This means that the information is tailored to the patient’s individual treatment need. The look and feel of the leaflets and wallets are welcoming yet thoroughly professional in tone and content. We also have produced EPT-branded gestation wheels with a reminder to hospital staff to reorder leaflets. The number of treatment packs sent over the reporting period not only regained ground but exceeded forecast following the previous financial year’s aberration due to the pandemic where numbers had fallen. For the first time ever, we sent out over 10,000 treatment packs and aim to exceed this for the next financial year, going from strength to strength.

We arranged for the general information and individual leaflets to be translated into seven languages and produced an accessible print version. The languages are: Arabic, Bengali, Chinese, Polish, Portuguese, Somali, and Welsh. These have been uploaded to a dedicated section on our website and each treatment pack includes an A5 leaflet signposting to the various language versions in the corresponding language and English. This is so that healthcare professionals can advise their patients’ about the language versions and native speakers can also locate them.

We sent out almost 600 EPT-branded posters which is again an expected increase following the fall during the previous financial year. These raise awareness of the symptoms and emotional impact of ectopic pregnancy and are disseminated free of charge to hospitals. We also encourage supporters of the charity to disseminate these across GP surgeries, clinics, pharmacies and Urgent Care Centres. Our “symptoms” poster informs the general public of the signs of ectopic pregnancy with the aim of educating communities so that anyone experiencing symptoms seek the care that they need as soon as possible. The “emotions” poster reassures people that their feelings are common. Both posters include the EPT’s contact details and website address.

We produced simple, wallet-sized contact cards and sent out over 3000 during the financial year. These are useful not only for people to keep in their wallets over time in case of future need but also helps healthcare professionals with an added printed resource. These are especially helpful for hospitals who do not distribute our leaflets and give out their own (eg due to Trust policies) and can instead include these cards with their own materials.

Key support services

Equipping people with information goes hand-in-hand with our providing more personalised support services by way of telephone support line, email, Skype and on-line message boards and these are a core part of the Trust's offering to those in need. We were able to provide the second session of two of dedicated bereavement care training for the support services team (the first session took place just before the end of the previous financial year). This was funded by a grant from The Hospital Saturday Fund and all team members found it incredibly useful.

We offer emotional support and information in a number of ways: via support line, email exchange, Zoom group sessions, text exchange, social media direct messaging and through our online forum. Topics range from experiencing symptoms, going through diagnosis of ectopic pregnancy, to information on trying to conceive successfully again. We also frequently help those who need us after a number of years of heartbreak. The information we provide is medically moderated and overseen by trained staff and team members. Our support team members are exceptional in their care for anyone suffering the aftermath of an ectopic pregnancy.

Support line : Support calls provide in-depth opportunities for callers to discuss events, their emotions and ask any questions. Our support line functionality in moving to a call-back service continues to be highly effective. By encouraging callers to leave contact details on voicemail, we are able to communicate quickly via email/text message to arrange a call at a time that suits best which can include evenings or weekends.

We aim to respond via text message/email within an hour or two of the message being left so that callers receive acknowledgement fast at an anxious time and strive to ensure calls take place within 24 hours of the original request or accommodate alternative times to suit individuals. To break down barriers, we have put in place interpreting services with two specialist suppliers to enable people whose first language is not English and British Sign Language to use our support line without hindrance.

Emails: We respond to over 300 emails per month requesting specific help and support during or after treatment for ectopic pregnancy. We continue to recruit and train additional team members who are supervised by senior staff. In addition, we also exchange emails and other forms of communication with medical professionals, journalists and supporters, resulting in over 5,000 email exchanges a year. Due to demand, we recruited a further trained team member to respond to emails.

Forum : Our message boards provide peer support but are moderated and contributed to by trained team members. They can be found via our website and are ’live‘, thereby offering virtually instant information and support for those in need. We had over 300,000 page views in the last report year. To improve search engine performance, our web developer performed an audit and cull of redundant and empty threads and so this fall on the last year’s visits may be due to historic spam/bot visits previously. We upgraded the forum to the latest software version last financial year and are considering upgrading to an improved, more user-friendly platform next financial year. For every person who has the confidence to post on the boards, there are many more who take their comfort from reading the messages of others. Our Forum Moderators continue to monitor the boards on a daily basis and aim to respond to posters within 24 hours; this is so that no person is waiting for more than a day for a reply at an anxious time in their lives.

Social media: We have solid, active presence on social media platforms, namely Facebook, Twitter, Instagram, and LinkedIn accounts. Some direct message via these social media sites for support and many others read and take comfort. Some people comment and find support on our posts from others who have been through similar experiences.

On Facebook, we have open and closed discussion groups with over 5,400 members (4800 last financial year) providing peer support as well as a public page with over 17,700 followers (15,000 last financial year) centred on information. Principally, our Facebook pages provide a virtual community enabling those who have experienced ectopic pregnancy to reach out to others going through a similar experience and facilitate our directing users to sources of accurate information on our website and other support services. Some of our top performing posts reach over a quarter of a million people. The EPT’s Facebook reach for this financial year is up 56.2% on the previous year.

The EPT’s Instagram and Twitter accounts have over 8,400 and 3,600 followers respectively (5,000 and 3,000 respectively last financial year). The EPT’s reach on Instagram for this financial year shows an increase of 55.36% compared with last year. For LinkedIn, we updated our profile in March to a “company” (there is no not for profit option) for a more professional appearance and at the end of this reporting period has 432 followers. As the profile change was at the end of this reporting period, we hope to see a meaningful impact of such update during the next financial year. We launched our TikTok account to reach the key 13+ demographic and since launch have over 1200 followers.

Of note for social media reach is that a national civic society organisation comprised of ethnic Romany Gypsies, Irish Travellers, and Roma called The Traveller Movement, shared our content and this is particularly impactful as such community is often very marginalised. We were also mentioned on one of the biggest Facebook groups with over 1 million followers, Family Lowdown (formerly Family Lockdown), as a trusted resource. For Mind’s national Time to Talk campaign in February, Baby Loss Awareness shared our post and Mind commented on our Facebook post. It is highly encouraging to see our work publicly supported and shared by wider national organisations, not only amplifying the messaging around ectopic pregnancy but also adding extra credibility to our charity and work that we do. In August 2021 (second year of EPT 80 in 1 Challenge), our Facebook reach increased by 150% as compared to August 2020 and Instagram reach increased by 215%.

In October 2021 Meta was launched (owns Facebook, Instagram and WhatsApp), and with that introduction Facebook organic reach has been heavily affected. As part of the changes, one of the page visibility preferences settings was changed from the user being able to see all posts to seeing limited posts and so without a user taking the active step of changing their settings and/or paid advertising, we rely on the engagement of our followers to reach more unique accounts. However, in spite of this, with The EPT's presence on social media steadily growing, we were able to achieve figures for reach and engagement beyond our expectations at the end of 2021.

We launched our Treasured Tulips gardens on social media. Anyone visiting our website is able to request to “plant” and dedicate a tulip which they can choose to personalise. People are provided with the option to donate so there are no barriers to remembrance. As at the end of this financial year, we had 592 dedications, with 74 completed and published garden patches.

Podcasts: We collaborated with podcasters a Woman’s Journey with Chrissie and Ayshen Webb (wife of singer Simon Webb) and Our Sam. Our Sam had its inaugural special focus by creating a three-part series on ectopic pregnancy: the first part was an interview with one of their trustees Hemant Maraj (Consultant Obstetrician and Gynaecologist at Wrexham Maelor Hospital) who explained the clinical side of ectopic pregnancy; the second part was an interview with EPT social media coordinator Kerri discussing livedexperience; and the third was with EPT director Munira covering information and support and the work of The EPT. We are evaluating doing more podcasts either by joining other podcasters or starting our own experiences-led casts.

Face-to-face support : As a very small charity, we do not have the resources for regular face-to-face support across the country. However, harnessing the power of technology and the appetite for using video calling etc, we offer remote face-to-face support now using Zoom. This can be requested on an individual, couples or group basis. Since the pandemic, Zoom group sessions have increased in demand with slots being filled through individuals’ enquiries organically rather than needing publicity. We have increased sessions to at least once a month and recruited a dedicated team member to organise and facilitate the sessions.

Live Chat: We offer a Live Chat service using the Skype platform to accommodate anyone who prefers to type and receive replies in real-time. This is currently operated on a requested basis due to resourcing constraints. We aim to explore incorporating chat functionality via the website.

The support services process involves recruitment, training, and on-going support and pastoral care. The support is medically overseen and moderated. The support team is very collaborative and are able to refer to each other seamlessly. For example, someone having a one-to-one phone call may then wish to participate in a group Zoom session or vice versa and relevant team members liaise direct to organise. The team works efficiently and each support route has at least two dedicated team members. This is so that no one person is overly burdened by emails/calls/messages which are intense in content, there is shared learning and peerto-peer support among these team members, and we have means for cover during absences. Facilitating support for couples remains an on-going task.

Our Project Support Team (members help with a variety of administrative tasks on an ad hoc basis) grew to 60 during the report year. Our improved newsletter, e-topic, continues to be delivered electronically.

Strategic aim 2: Education and awareness

The Trust seeks to raise awareness among the medical profession and public at large so that earlier diagnosis can be achieved. To facilitate this over the last year, we have:

Collaborations

Pregnancy & Baby Charities Network: The EPT is a member of this Network which represents UK charities whose focus includes improving care throughout the path to parenthood before, during and after pregnancy and after losing a baby or pregnancy. The group collaborates to influence the Government and the NHS to improve care for parents. The EPT strives to ensure that people who experience early pregnancy losses are represented. The Director of the EPT is appointed one of the vice co-chairs of the Network and is instrumental in governance, oversight, and strategy.

All-Party Parliamentary Group: We are members of the All-Party Parliamentary Group on Baby Loss which brings together MPs and Peers from across parties to work on this vital issue. The EPT has been a part of the Group from inception in 2016. The APPG’s overall aims are to develop policy that supports families dealing with the grief and loss of a baby and to raise awareness of what more can be done by the government, Parliament or other agencies to help those affected. By participating in discussions, The EPT constantly ensures that ectopic pregnancy and early pregnancy loss remain within the Government’s agenda.

NICE Guideline: Following representation as a stakeholder on the introduction of a NICE Guideline for Pain and Bleeding in Early Pregnancy in 2013, we registered as stakeholder for updating the clinical guideline on CG154 Ectopic pregnancy and miscarriage: diagnosis and initial management. EPT director Munira Oza was appointed Lay Member on Ectopic Pregnancy for the limited guideline update previously in during the FYE ending March 2019 which focused on two areas only: ultrasound diagnostic criteria and expectant management. During this financial year, Ms Oza participated in the further review question about offering progesterone for threatened miscarriage. Ms Oza also helped to develop the Pathway. Ms Oza also participated in a listening event for equality, diversity, and inclusion.

National Bereavement Care Pathway: During FYE ending March 2019, 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. We were asked to review the Pathway on Miscarriage, Ectopic Pregnancy and Molar Pregnancy Pathway to ensure that information on ectopic pregnancy is up to date and clear so that all bereaved parents are offered the same high standard of parent-centred, empathic and safe care when a baby or pregnancy is lost through the condition. The EPT continues to support the Pathway.

Other key collaborations:

- We issued a joint statement on a proposed anti-abortion “trigger” bill in Missouri which criminalised treatment of an ectopic pregnancy with the Royal College of Obstetricians and Gynaecologists, Association of Early Pregnancy Units, Scottish Early Pregnancy Network, and the Miscarriage Association.

We are increasingly known and signposted to by companies such as the British Transport Police which requested our materials for one of their roadshows and the Co-op’s pregnancy loss policy which lists our website as a resource.
We were approached for content within a textbook for secondary school children and other audiences resulting in three dedicated pages on ectopic pregnancy.

Campaigning

We participated in three focused campaigns: Baby Loss Awareness Week; Small Charity Week and Volunteers’ Week as opportunities for our voice to be part of a powerful, collective message.

Baby Loss Awareness Week takes place annually from 9 to 15 October and is an opportunity for bereaved parents and their loved ones to acknowledge and remember their losses. It is also a chance to raise awareness of the emotional impact of pregnancy and infant loss, and the scale of the tragedy, which affects up to one in five families in the UK. Baby Loss Awareness Week is a collaboration of a number of charities united in their support for families who experience the death of a baby including Bliss, Child Bereavement UK, The Miscarriage Association and Tommy’s as well as the EPT. We have participated since inception in 2004. Today, the EPT continues to drive the Week forward extensively alongside other charities as the EPT Director sits on the core Working Group as well as the group for Public Affairs and Policy. The EPT was involved in many of the panel discussions held by Natwest during Baby Loss Awareness Week focusing on remembrance and highlighted early pregnancy loss including ectopic pregnancy through the conversation: Ms Oza was compere for the session on partners with a colleague participating (Ms Stedman) and a further colleague (Ms Cadle-Junor) participated in the session focused on healthcare professionals.

As part of the campaign, we sold special Baby Loss Awareness pins and used social media to reach out to our followers, particularly on Facebook. On 15 October, the week closed with the Global ‘Wave of Light’ where candles were lit across the globe as part of the international Pregnancy and Infant Loss Awareness Day. In posting our image of our candle on our social media pages and encouraging people to share, we united with others across the world in honour of those babies who lit up lives for such a short time and in doing so our image reached over 150,000 people on Instagram and Facebook. Posts from the charity reached over 450,000 people and had over 47,000 engagements. Collectively across the participating charities, the number of families reached will have reached into the many hundreds of thousands. As well as participating in Baby Loss Awareness Week on an annual basis, this group shares best practice and identifies potential joint opportunities.

Small Charity Week takes place annually and is devoted to raising the profile of small charities. We participated in June 2021 highlighting the services we provide and the big impact they can have. Our posts reached over 24,300.

The first week of June sees Volunteers’ Week and, by highlighting our volunteers and opportunities, we often receive new interested volunteers with this financial year being no exception. During Volunteers Week 2020, we received record number of enquiries.

Ms Oza participated in roundtable discussions on Angela Crawley MSP’s Paid Miscarriage Care bill and provided detailed feedback on the text of the draft bill.

The charity submitted evidence for the government’s Women Health Strategy in three spheres: individually as The EPT concerning policy asks for ectopic pregnancy care; collaboratively with the charities Antenatal Results and Choices for early pregnancy care; and more widely with The Pregnancy & Baby Charities Network covering the range of pregnancy and baby loss.

Conferences

We frequently participate in external conferences focusing on early pregnancy. Our Chair sits on the Board of the Association of Early Pregnancy Units (AEPU) and the Patient Committee for the International Society for Ultrasound in Obstetrics and Gynaecology (ISUOG), offering the patient's voice. Our Chair represents the Trust at AEPU meetings. The 2021 Association of Early Pregnancy Units conference was held online due to the pandemic and was attended by our Director. Our Chair and Director also usually present at in-house hospital seminars and meetings and we often provide EPT materials for displays which largely ceased during the pandemic.

Media

We continued to assist a number of media outlets covering print, on-line and television/radio formats. We received wide ranging exposure in print newspapers and magazines. Our ambassador Charlotte Crosby spoke about her experience and raised awareness for the charity on her podcast. Ms Oza was quoted in The Independent relating to a hypothesis on how chlamydia might increase the risk of ectopic pregnancy. The BBC show This is Going to Hurt had a storyline on a ectopic pregnancy as a result our social media post had lots of engagement and website saw a spike in sessions. Ms Oza contacted the BBC to include signposting to our website on their Action Line resources and we are now listed there.

Our dedicated team of volunteer fundraisers continue to spread the word through interviews such as with BBC local radio stations and local press, which often include the Trust's contact details.

Merchandise

Our on-line shop stocks a range of branded merchandise that promotes the Trust. By purchasing and using our products, awareness about ectopic pregnancy and the Trust's name and website get increased exposure among the general public.

Our biggest sellers continue to be Christmas cards and pin badges which are excellent for increasing awareness about the condition.

We launched our EPT Boxes and there are three to choose from: Care Box; Remembrance Box; and Fitness Box;

Fundraising

We receive no Government funding and exist through the goodwill of our fundraisers.

Our bespoke fundraising initiatives EPTea Party, EPT1000 Challenge, and EPT Mini Challenges continued to be popular. We added a new dedicated donation form to our website which means donations are now easier and separated from fundraising through JustGiving (although people do still have the option to donate through JustGiving too). Our Fundraising Coordinator now includes match-funding information within her fundraising packs which makes it easier for people to approach their employers. We continued to adapt to changing circumstances and signed up to Work for Good to diversify fundraising opportunities. Work for Good promoted us during Baby Loss Awareness Week.

Plans for mass participation events, such as the Virgin London Marathon and Great North Run, began to restart. For The GNR, we had five participants with a further six people deferring to September 2022. For the London Marathon, we had seven runners in the Capital and six Virtual London Marathon. During this financial period, we had a mixture of virtual and self-motivated events, with a slow rise in people signing up to organised events.

Following the hugely successful launch of the EPT 80 in 1 where people cover 80 miles during the month of August (8[th] month) to raise awareness of the 1 in 80 pregnancies that are ectopic, this event was repeated. This was again a huge success with 240 people taking part. The impact of these initiatives have meant that we have had a successful fundraising year.

Our Fundraising Coordinator continues to be supported by our press officer who assists fundraisers in getting press coverage and fundraising social media coordinator who looks after the EPT 1000 Challenge dedicated closed Facebook page for fundraisers to offer a space for mutual support and encouragement.

Strategic aim 3: Supporting research

We believe that the drugs [that are the subject of this trial]... will be of greater benefit to women in terms of fewer operations, hospital visits and blood tests

- Professor Andrew Horne, University of Edinburgh

The EPT continues to seek to effect change by improving speed of diagnosis, treatment choice and levels of care. Over the last year, we have participated in the following to support this objective:

Improving treatment choice

The Trust is involved in supporting ground-breaking research with medical adviser and trustee Professor Andrew Horne of the University of Edinburgh on combining two drugs (methotrexate with gefitinib) to improve the effectiveness of medical treatment. Following approval of the stage three clinical trial into this potential treatment, Professor Horne’s team is running the GEM3 trial which is a multi-centre, double-blind, placebocontrolled randomised trial. The study is available at around 50 centres across the UK which are being publicised by the EPT via our website and social media platforms. It is hoped that this treatment will help preserve fertility and decrease the need for invasive surgery through increasing the percentage of women whose bodies respond successfully to medical management.

The EPT supports research into biological processes that may be connected to ectopic pregnancy. The Trust sponsors a PhD student at The University of Edinburgh who is researching the causes of ectopic pregnancy. This involves examining cellular changes in the lining the Fallopian tube with may result in ectopic embryo implantation. This work was supported by a joint Medical Research Council/Ectopic Pregnancy Trust PhD Fellowship. This research was briefly paused during the pandemic but was restarted in Autumn 2021 and final third year pledge was advanced.

The EPT is assisting Monash University with research in ectopic pregnancy with the aim of standardising core outcomes in published papers. We provided feedback on the patient information leaflet and survey questions and helped to promote to gather participants.

The EPT worked with Sands, The Miscarriage Association, and Antenatal Results and Choices on audit questions concerning bereavement care in early pregnancy/gynaecology units and participated in the Pregnancy Loss Review on whether the law should be changed to allow registration of pregnancy losses before 24 weeks. We await the publishing of the report.

We were approached to work on a Priority Setting Partnership for Ectopic Pregnancy. The project is a collaboration between the Cochrane Gynaecology and Fertility Group, the University of Monash, University College London, and The EPT. It will be global and aims to identify the top ten priorities for future research in ectopic pregnancy. The goal is to bring together people from across the world to suggest their top five ‘unanswered’ research questions, which will then be prioritised in an international survey, and finally refined to the top ten research questions. The research is by way of a two-part online survey and launch date is expected to be early next financial year. Ms Oza is a key lead in the project and sits on the Scientific Steering Committee.

We were also approached to work with Kings College London on a study on early pregnancy loss during the Covid-19 pandemic (along with the baby loss counselling charity Petals). The study is part of wider research entitled PUDDLES (Parents who suffer pregnancy loss and whose babies die during the pandemic) and 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 using qualitative interviews and analyses. This specific collaboration with the EPT and Petals investigates women’s experiences of early pregnancy loss and care during the COVID-19 pandemic.

Representing lived experiences of ectopic pregnancy

Exactly 21 years ago for me. No support whatsoever, just expected

to brush it off and carry on. People around me didn’t like it when I fell to pieces. Thank you for bringing this out into the open.

The Trust has forged key relationships with a number of similar focused organisations and inform the debate through lived experiences and best practice. These include other charities and groups such as:

The Association of Early Pregnancy Units: The Trust has a representative on the executive board of the AEPU which develops best practice to managing ectopic pregnancy and other early pregnancy complications, participating in regular meetings and the AEPU strategy day.

Professional/governmental organisations: These include NHS Direct, the Department of Health and Social Care, the Royal College of Nurses, the Royal College of Obstetricians and Gynaecologists, the International Society for Ultrasound in Obstetrics and Gynaecology, and the Health Protection Agency. This ensures that the condition and lived experiences are well represented and included in the development of best practice.

The Ectopic Pregnancy Trust

The report of the trustees for the year ended 31 March 2022.

Charity name: The Ectopic Pregnancy Trust

Registered charity number: 1071811

Date of registration: 2 October 1998

Principal address : 483 Green Lanes, London, N13 4BS

Telephone : Admin - 020 7096 1838; Helpline - 0207 733 2653

Trustees : Mrs Alex Peace-Gadsby (Chair); Mrs Shabana Masavi (Treasurer) Miss Julie Price; Prof. Tom Bourne; Prof. Andrew Horne; Mr Chris Woodward; Rachel Small; Michael Wood-Williams

Staff/Team members: Munira Oza (Director); Jill Ansell (Fundraising coordinator); Sonal Colvin (Shop and donations coordinator); Sam Page (Hospital leaflets coordinator); Kerri Stedman (Social Media Coordinator); Helen Corsi-Cadmore (Projects coordinator); Lois Rowland (Fundraising support coordinator); Tara Moverley (Volunteer support coordinator/Administration); Natalie Max (Press officer); Karen Donovan (Support Team); Michele Fugiel Gartner (Support Team); Joanne Cadle-Junor (Support Team); Gita Noren (Support Team); Katharine Christopher (Support Team); Beth Pidd (Support Team); Sophie Ashby-Clarke (Support Team); Katie Lewis (Support Team)

Medical advisers: Cecilia Bottomley MB BChir MRCOG; Fiona Bottomley, Superintendent Sonographer; Prof. Tom Bourne PHD MD MRCOG; Sonal Colvin BSc; Professor Colin Duncan BSC(hons), MBChB(hons), MD, FRCOG; Janine Elson MD FRCOG; Prof Andrew Horne Ph.D, MRCOG; Suzanne Hollamby MB.BS, MRCOG CCST; Davor Jukovic PHD MD MRCOG; Emma Kirk BSc, MD, MRCOG; Marjorie McLean; Julie Price MBBS FROCG (to November 2021); Jackie Ross MBBS MROCG; Prof. Siobhan Quenby; Nick RaineFenning MRCOG, MBChB Ph.D; Rachel Small RGN, RM, FRCOG (Hon): Dirk Timmerman MD, Ph.D

Ambassadors: Michelle Gayle (Actress and Singer); Susan Penhaligon (Actress); Amanda Redman MBE (Actress); Philip Cairns (Actor); Charlotte Crosby (TV Personality)

Volunteers

Volunteers continue to be an essential resource in ensuring that the charity is able to deliver its objectives. They are typically people who have been affected by the condition and want to give something back to the charity, such as by answering helpline enquiries, facilitating the message boards, becoming a buddy through to administrative tasks. The charity has strict policies and procedures for vetting, training and supervision.

The charity ensures that no person applying for employment or for admission as a volunteer to the charity will be treated less favourably on the grounds of their sex, race, class, colour, racial group, ethnicity, marital

status, sexual orientation, age, trade union membership or otherwise, religious belief or physical or mental disability.

Decision making

The Trustees are responsible for strategic decisions with appropriate consultation with the staff. Where medical information is required, the Medical Advisors are consulted. The staff have the authority to make operational decisions without prior Trustee consultation.

Records maintenance

The charity's records are maintained and annual accounts are prepared by the treasurer.

Type of governing document

Trust deed.

How the charity is constituted

The charity is constituted as a Trust.

Charity Trustee selection methods

The Charity has a clear policy and procedure for the recruitment, selection and induction of Trustees, which runs alongside our equal opportunities policy.

Policy on reserves

The charity holds two bank accounts with Charities Aid Foundation, a cash account and a Gold account. The Treasurer takes responsibility for ensuring that excess funds are moved into the Gold account to ensure that the potential for interest is maximised.

The trustees have set a reserves policy which requires that the reserves be maintained at a level that ensures that the charity's core activity continue during the period of unforeseen difficulty. The calculation of the level is an integral part of the organisation's planning, budget and forecast cycle and takes into account risks associated with each stream of income and expenditure being different from that budgeted, the planned activity level and the organisation's commitments.

Further financial review details

The 2022 accounts continue the improvement in income generation shown in the 2021 results. During the year the Trustees spending on charitable activities increased by c.£60k from 2021. This was as a result of the Trustees’ active decision to seek out areas where reserves built up over the last 5+ years could be effectively used. A key area was work to upgrade the website. Despite the planned additional expenditure, there has been a modest increase in the funds carried forward at the end of the year. This is as a result of the significant increase in income generation achieved during the year.

The strong position in the 2021 accounts is as a result of the strategy introduced at the end of the 2016 year to create a strong base. The Trustees will, however, continue to monitor the situation to ensure the Charity is in a position to enable it to continue to meet its objectives for the foreseeable future and continue to grow.

Availability and adequacy of funds

The board of trustees is satisfied that the charity's assets in each fund are available and adequate to fulfil the obligations in respect of each fund.

Statement of Trustees Responsibilities

Charity Law requires the Board to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the charity as at the end of the financial year and of the surplus or deficit of the charity. In preparing those financial statements, the Board is required to;

select suitable accounting methods and them apply them consistently;
make estimates and judgements which are prudent;
prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charity will continue in business.
state whether applicable accounting standards and statements of recommended practice have been followed, subject to any material departures disclosed and explained in the financial statements.

The trustees are also responsible for maintaining proper accounting records which disclose with reasonable accuracy at any time the financial position of the charity and which are sufficient to show and explain the charity's transactions and enable them to ensure that the financial statements comply with regulations made under the Charities Act. They are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

The trustees are also responsible for the contents of the trustees' report.

Signature

Shabana Masavi

Treasurer/Trustee

Independent examiner's report to the trustees of The Ectopic Pregnancy Trust

I report on the accounts of the Trust for the year ended 31 March 2022.

Respective responsibilities of trustees and examiner

The charity's trustees are responsible for the preparation of the accounts. The charity's trustees consider that an audit is not required for this year under Section 43(2) of the Charities Act 1993 (the 1993 Act) and that an independent examination is needed.

It is my responsibility to:

examine the accounts under section 43 of the 1993 Act;
to follow the procedures laid down in the general Directions given by the Charity
Commission under section 43(7)(b) of the 1993 Act; and
to state whether particular matters have come to my attention.

Basis of independent examiner's report

My examination was carried out in accordance with the general Directions given by the Charity Commission. An examination includes a review of the accounting records kept by the charity and a comparison of the accounts presented with those records. It also includes consideration of any unusual items or disclosures in the accounts and seeking explanations from you as trustees concerning any such matters. The procedures do not provide all the evidence that would be required in an audit and consequently no opinion is given as to whether the accounts present a 'true and fair view' and the report is limited to those matters set out in the statement below.

Independent examiner's statement

In connection with my examination, no matter has come to my attention which gives me reasonable cause to believe that in any material respect the requirements to keep accounting records in accordance with section 41 of the 1993 Act and to prepare accounts which accord with the accounting records and comply with the accounting requirements of the 1993 Act have not been met or to which, in my opinion, attention should be drawn in order to enable a proper understanding of the accounts to be reached.

Signature

Charlotte Morrison, Fellow of the Institute and Faculty of Actuaries

Date: January 2022

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The Ectopic Pregnancy Trust
Year ended 31 March 2022
2022 2021
£ £
Statement of Financial Activities
Voluntary Income 19,106 17,750
Fundraising Activities 163,980 109,869
Revenue from Merchandise 7,888 8,070
Investment Income 29 69
Total Income 191,003 135,758
Fundraising Expenses 23,051 16,336
Cost of Charitable Activities 156,163 100,604
Governance Costs 9,946 10,543
Total Expenses 189,160 127,483
Net movement of funds 1,842 8,275
Funds brought forward 178,028 169,752
Funds carried forward 179,870 178,028
Income & Expenditure
Turnover 190,974 135,689
Direct Costs (179,215) (116,940)
Gross Income/(Deficit) 11,759 18,749
Governance Costs (9,946) (10,543)
Operating Income/(Deficit) 1,814 8,206
Interest receivable 29 69
Net Income/(Deficit) 1,842 8,275
Statement of recognised gains & losses
Excess of income over expenditure 1,842 8,275
1,842 8,275
Movement in revenue & capital funds
Accumulated funds brought forward 178,028 169,752
Recognised gains & losses 1,842 8,275
Closing revenue accumulated funds 179,870 178,028
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Note: In 2021 £1,000 was received towards ‘Remote Enhanced Training’ for the Trust’s Support Team and these funds were used in the 2021/22 reporting year. In 2022 there were no restricted funds.

The Ectopic Pregnancy Trust
Year ended 31 March 2022

Balance Sheet
		2022		2021
	£	£	£	£
Fixed Assets
TangibleFixedAssets
Total Fixed Assets		-		0

Current Accounts
Current bankaccount		18,516		3,729
GoldDepositAccount		159,490		171,461

Creditors
Amounts duewithinone year		0		0
Net CurrentAssets		1,864		2,837

Total Assets less Current Liabilities		179,870		178,028

Creditors
Amounts due after more thanone year		-		-
Provision for liabilities & Charges		-		-


Net Assets		179,870		178,028

AccumulatedFunds		179,870		178,028
Total Charity Funds		179,870		178,028

Notes to the accounts

1. Accounting policies

Basis of preparation of accounts

These accounts have been prepared on the basis of historic cost in accordance with Accounting and Reporting by Charities - Statement of Recommended Practice (SORP 2006) and with Financial Reporting Standards for Smaller Enterprises (FRSSE) and with the Charities Act 1993.

The accounts are prepared on a going concern basis under the historic cost convention.

Incoming resources

Incoming resources are accounted for on a receivable basis.

Investment income

Bank interest is included on an actual receipts basis.

Deferred income

In accordance with the Statement of Recommended Practice (SORP 2006), grants received in advance and specified by the donor as relating to specific accounting periods or alternatively which are subject to conditions which are still to be met, and which are outside the control of the charity or where it is uncertain whether the conditions can or will be met, are deferred on an accruals basis to the period to which they relate. Such deferrals are shown in the notes in the accounts and the sums involved are shown as creditors in the accounts.

Recognition of liabilities

Liabilities are recognised on the accruals basis in accordance with normal accounting principles, modified where necessary in accordance with the guidance in the Statement of Recommended Practice (SORP 2006).

Resources expended

All resources expended relate to marketing and administration of fundraising activities.

Fixed assets and depreciation

All tangible fixed assets, except buildings and freehold land, are stated at cost less depreciation. Items of less than £500 are not capitalised. Depreciation has been provided for at the following rates in order to write off the assets (less their estimated residual value) over their estimated useful economic lives.

Fixtures and fittings: 25% straight line

Computers: 25% straight line

Capital Gains

The Board of Trustees consider that, in order to comply with the Statement of Recommended Practice (SORP 2006), gifts or tangible fixed assets or grants of a capital nature given for specific purposes and fully utilised in the furtherance of the objects of the charity should be credited to the relevant fixed asset fund after the sums have been properly expended on the restricted purpose. The related asset is shown in the balance sheet at the cost of acquisition or subsequent revaluation.

If the related assets are subject to restrictions by the grant making organisation or on their use and disposal, then these restrictions are noted in the fixed asset section of these accounts. In such circumstances, the fixed asset fund created is treated as a restricted fixed asset fund. As the related assets are depreciated, then a transfer is made from restricted fixed asset funds to unrestricted revenue reserves to reflect the diminution in the asset subject to the restriction. In this year there were no restricted funds.

If the related assets are not subject to restriction by the grant making organisation on their use, then the fixed asset fund created is treated as a designated fixed asset fund. As the related assets are depreciated, then a transfer is made from designated fixed asset funds to unrestricted revenue reserves to reflect the diminution in the asset in the year.

Any residual liability to the donor arising from, for example, the assets future sale, is disclosed as a contingent liability unless the event that would trigger repayment of the grant becomes probable in which case a liability for repayment is recognised.

Taxation

As a registered charity, The Ectopic Pregnancy Trust is exempt from income and corporation tax to the extent that its income and gains are applicable to charitable purposes only. Value Added Tax is not recoverable by the charity and is therefore included in the relevant costs in the Statement of Financial Activities.

Funds structure policy

The charity maintains a general unrestricted fund which represent funds which are expendable at the discretion of the Trustees in furtherance of the objects of the charity. Such funds may be held in order to finance both working capital and capital investment.

Restricted funds have been provided to the charity for particular purposes and it is the policy of the Board to carefully monitor the application of those funds in accordance with the restrictions placed upon them.

2. Winding up or dissolution of the charity

If upon winding up or dissolution of the charity there remain any assets, after the satisfaction of all debts and liabilities, the assets represented by the accumulated fund shall be transferred to some other charitable body or bodies having similar objects to the charity.

3. Analysis of Incoming Sources

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Analysis of Incoming sources
2022 2021
£ £
Voluntary Income
Personal donations 1,836 3,055
Corporate donations 2,934 9,434
Payroll giving 2,485 4,262
Other donations 11,850 1,000
Total Voluntary Income 19,106 17,750
Fundraising activities
Other fundraising platforms 33,674 9,449
PayPal 4,741 9,162
Just Giving 101,231 72,679
Virgin Money 24,334 18,579
Additional GiftAid - -
Merchandise 7,888 8,070
Total of Activities for generating funds 171,868 117,939
Investment Income
Bank Deposit Interest Received 29 69
Total Investment Income 29 69
Total Incoming Resources 191,003 135,758
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4. Analysis of resources expended

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2022 2021
£ £
Fundraising costs
London Marathon costs 2,745 3,300
Other fund raising expenses 20,306 13,036
23,051 16,336
Cost of Charitable activities
Helpline consultants 32,284 17,905
Leaflets & distribution 28,896 17,570
Shop costs 8,714 9,180
Shop merchandise 7,123 6,421
Research 12,000 14,000
Management costs 23,307 20,205
Training and welfare 700 0
Travel and subsistence 114 0
Meetings 1,670 150
Website 33,434 8,955
Insurance 418 407
Postage & Stationary 6,879 4,621
Telephone 625 1,190
156,163 100,604
Governance costs
Payroll costs 479 198
Depreciation of fixed assets 0 0
Membership fees 365 285
Banking fees 699 673
Gross wages 7,968 9,051
Sundry expenses 435 336
9,946 10,543
Total expenditure 189,160 127,483
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5. Paid employees

	2022	2021
Gross wages & salaries	42,333	37,655
Helpline consultants	52,891	36,385
Total staff costs	95,224	74,040

Number of full time employees	0	0
Number ofpart time employees	4	2
Number of helpline consultants	12	12
Engaged on charitable activities	16	14

There were no employees with emoluments in excess of £30,000.

6. Tangible fixed assets

	2022	2021
Asset cost,valuation or revalued amount at start ofyear	0	0
Accumulated depreciation	0	0
Net book value end ofyear	0	0

Charge foryear	0	0

7. Creditors and accruals

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2022 2021
Accrued expenses 0 0
PAYE/NIC 0 0
Employee expenses 0 0
0 0
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