Ectopic Pregnancy Trust The Ectopic Pregnancy Trust Accounts for the Year Ending 31st March 2024
A NOTE FROM THE BOARD Alex PeaCeadSbY stepped down from the position of Chair and was replaced by fellow Trustee, Chris Woodward in tkcember 2023. Thls year has again been ather challenging one. We continued to see the impacts of the Covid-19 crisis Including withln hospitals, the Ireatment 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 lo support those in need through this traumati¢ time through all the various IkdoWnS. The condition remains the leading cause of death in the first trimester of pregnancy and has a devastating physical and emokn'onal impacL People must come to lenns with the risk of life to the womanlpregnanl person, the experiencè of major invasive treatrnent or surgery, often performed in emergentry arcumstances, and loss of part or all of the womanlperson's natural fefblty, at the sarne time as coming to lemis with losing thelr baty. All of this happens in a short peri¢)d of time. often in arcumstances vthere the people affected have never heard of the condFbon until it happens, and leaves people vulnerable to emoti¢)nal difficulties In the months and sometirnes years after the loss. The Edopic Pregnancy TTUSt remains a niche chanty with limrted resources but big ambitions. We provTrd8 exceptional support on a large scale and work tirelessty with key stakeholders, such as healthcare professionals and govemment. to improve diagnosis, treatment and raise awareness. We are successfulty positioned and respected as key influenctts in affecling changè. These great outcomes are achieved thanks to an amazing team of employees, consuttants and volunteers vtho realty care and give their tin and support for nothing or nominal financial amounts. Without the dedication of team member5.- volunteer5. fundraisers. trustees. medical advisers and ambassadors. we would not be able to provide our vital seNus that make su¢h a huge difference at suth a difficult time. The success of the Trust over this financial year is lestsment to everyone's efforts and l thank everyone for their kind contribution. Being a small chaiity, every penny of income is realky rnade to count No rrK)n8y is ever spent on advertising for donations. Instead. many who support us have used our services historicalty 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 generosty and good%%ill. we will continue to invest in our support seprfices and work to make the hospital experience the best it can be in the difficult arcumstances. No one should ever die from an ectopic pregnancy and. for anyone affected by the condilion, Ihe qualty of their hospital experience and emotKJnal support should be excellent. Chair, Th¢ Ectoplc Pregnancy Trust
OUR PURPOSE AND STRATEGIC AIMS Our Purpose Ectopic pregnancy is a common. life-threatening condrtion that is the leading cause of matemal death in the first trimester of eaty pregnanty. The condltson affects around 1 in BO pregnancies in the UK and occu when an embryo grows outside of the vnmb. The pregnancy can never be sav8d. 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 e¢iopic pre9nancies diagnosed each year Isource: Confidential Enquiry into Matemal Deaths and Mort)idity 2009-14, December 2016]. However. from anecdot21 evidence. this may be doser to more than 30,1)00 admissions in the UK alone. as son* instances may not be diagnosed as an ectopic pregnancy bul instead as a miscarriage and undergo expectsnl management. Unfortunately. women can still die from an ectopic pregnancy. The 2019 MBRRACE-UK Matemal Deaths and Morbidty Report 2015-17 states that six women died from earty pregnancy problems, fve of vthom had ectopic pregnancies. All five women with ectopic pregnanaes died within 48 houts of presentation and three of the six women who died were from Black or olher ethnic minorty groups. [Source: Confidents"al Enquiry into Matemal Deaths and Morbidty 2015-17. November 2019]. According to the 2022 MBRRACE-UK Report. 8 women died in the report period between 2018-2020, which is an increase from the previous rewrt [Source". Confidential Enquiry Into Matemal Deaths and Morbidty 2018-20. November 2022]. In the 21. century. no woman or pregnant person should die of an ectopic pregnancy. The legacy of suffering an ectopic pregnancy can be far-reaching for w¢)menlpeople, coupks and wder famity and friends. Women and peopk who suffer have to endure the physical trauma of inva51ve treatment and face their own mortalty. the impact on their ftrture fertility and the sad loss of losing their baby all very quIcY. Thk8 can be a very frightening and distressing experience. The impad can be long4asting and many people require ongoing support many mnths 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 naturalty or through assisted conception roules as well as those who do go on to conceNe successfvlty. Given the increased risk of a subsequent ectopic pregnanry, earty pregnanw post-ectopic is also a traumatic time for many people. The Trust also provides its services to medical professionals who treat earfy pregnancy complications. We are a smll, ntche UK-based tharity wilh an eXtense reach. We have the suprort and guidance from worfd-class heath &qre professionals as our medical advisers and tmstees. Our team members are driven to help others th[0Jh their own experiences and empathise th our seNice users since many have experienced pgnancY loss and difficulb.es of their ovm. We operate with the assistance of our MmItted leam members, volunleer5 and fundraisers (many of whom have suffered an ectopic pregnancy and used our seNices historicaltyl and are graleful for the support of our ambassadors. Our seryices have been in demand nth¥ K)re than ever due to the challenges that the Covid-19 pandemic brought and r(s ongoing impacts. We continue to rise to that need.
Our Wision The Ectopic Pregnancy Twst believes: no woman or person should from an ectowc pregnancy; any woman or person capable of conceiving of childbearing age, who is sexualty active or undergoing assisted reproductive technology (ART) treatment. having ectopic pregnancy symploms. shiwld be consided lo be pregnant until proven otheThvise lo maximise the speed of diagnosis.. anyone diagnosed with an ectopic pregnancy should recerve as many treatEnt options as the stability of their ndical condition allows: this indudes conseNative management. medical treatment with methotrexate, and surgical treatment,. it should be universalty recognised that earfy diagnosis enables treatmenl choice, preserves fertilty and enables a person to feel a gater degree of control over her medical condtbon. This commonly reduos the emotional impad of the ectopic pregnanGy'. it should be universally rec()Jnised that the en•)tional effects of lon9 a baby can far oUe1gh the physical nditiOn even in the earty stages of pregnancy: and anyone vtho has suffered an earty pregnanry loss should have access to all of the infornation and support they need to aid their physical and emotional recovery. Our Aims Our strategic aims are: to provide Infomiallon and support to all persons affected by ectopic pregnanGy and other early pregnancy complications and the healihcare professionals vkno care forthem; to advan education and to promote awareness of ectopic pregnancy and other eaTty pregnan complications among the medical profession and wider public: and to support research into ectopic pregnancy and other earty pregnancy corKlitions.
Strategic aim 1: Inforniation and support Just a quick message to say a hu8e thank you for the tgroup Zoom] session yesterday and for creating such a warm. encouraging space. The Ectopic pnancY Trust has made a huge difference In my life the past rnonth. I especlally loved havlng the opportunlty to dedicate a tulip to my baby. I have found a lot of Sola and hope and really good Infomiatlon on your websltes and forums lately thavs really helped. It's nice to know I'm not alone. I sent my story in recently vla emall hoping it may help others. The work you do is amazlng. X We play a key role in disseminating inf0mlOn and suppcxtrng anyone who experien the condition during diagnosis. treatment and recovery from the condition. Our medical advisers continue to support us to ensure we provide current and accurate inf0mtiOn. We provide training so thal the team gain insights into INed experience for the range of people who can be impacted by ectopic pregnancy. The Director completed Iwo sets of trainlng for safeguarding provlded by NSPCC - child protection forg0vem0 and trnstees and $8fegu8rt1ing 16-25 year olds and sent the Ilnk for latterto supwt team highlighling the excellent trainiNJ. These sessions help the charlty tr) reflect the diverse range of latIOnShIpS and people Ihal can be impacted by ectopic pregnancy. We aim to produce and easy read guide to ectopic pregnancy if funding is secured. Our annual Strategy day planned for May 2023 vms hekl online via Teams due to rail strikes and the venue booking has been moved lo 2024. This was a welcome opportunty for the team to reconnect as well as to plan for the forthcoming fjnancial year. We also held ourffitst team Refledive Practice se$sion in Jun8 2023 and plan to hold further sessions, aiming for ryce a year. In March 2024. The EPT became a r8gi$lered charity in Scoland. The team has continued to work incredibly har(1 to maintain a consistenfy high-standard of service. A new team memberjoined in January 2024 providing administrative support and continuing to support on Facebook fundraising groups and, over the last financial year. we have achieved the following: Information disseminated via our website
We believe that equipping peopte with infomiation abDUt the condition at such a challenging time helps to process what is happening to them. Empowering people in this way results in an incre88e in their person81 knowledge Iparticularty on the assessment and tatrnent processes and expected outcomes} and thus reduces the degree of stress and confusion. helping the healing process. The EPT was awarded the Patien rum tick as a trusted inf0mtiOn creator. This is a UK-wide qualty mark for heatthcare information. Through PIF Tick membership. we have made connectKJns wilh providers of infomiation to professnal$ and the EPTS infom'0n is aCcesSb to them through those plattoms. Infomiati Our web8Éte provides a valuable resource for VMen and their families vtho are being diagnosed or treated for ectopic pregnancy, wth secticffjs covering the definiti(m of ectopic pregnancy. diagnosis and treatment, physical and em¢)lional recovery and trying to conceive again as well as infotmation for parthers and medic31 professionals. The information is relevant. accurate. accessible. peer-reviewed and up-to-date. W8 over 860,500 users on our website and forum (increase from over 651.(K)O users in previous finanual year>lh Ippws againbthg symptw Ofe(aopPeganI¥ and trytrn at the pohit of neo¢. such as at hospktal. Broadty consthnt with the previous financkl year. .,feinale with &5%.n4 (forwn be6&%rA4[e.afid.s20Wkn We continue to invest in the website and a recent project involved adding a $8arch capabilty and we plan to update the fonjffl in the next financial year. The website atso has new content on scans and IUDS. The ReachDeck toolbar continues to be used regularty. It has various aCsSibIlty tools to reduce barriers Induding being able to translate the website into 100 languages, readiig aloud in 40 languages, screen- masking, and reducing dislracling contenl. We riow have animations on symptoms of ectopic pregnancy in English. Welsh. Bengali, Chinese, Somali, Portuguese. and Polish. Information disseminated through hospitals We distribute a surte of free patient infonnation ieafiets to hospitals across the UK. These are then disseminated to palients on dkqgnosis or when leawng hospital which means that people have acce8S to infomption quickty and are Snposted to our services at the point of need. Thi$Èinfomplion suite was Highly Commended at the BMA Patient Inf0MtIon Awards 2019 and shoruisted for the overaiiaBMA Patiènt Infomiation Avtsrd 2019. We produce three specialist leallets on treatment routes for ectopic pregnancy {Surgical. Medical and Expectant Managemenl) as well as one on Pregnancy of Unknown Location. The relevant leaftet is inserted into the back pocket of EPT-branded A5 wallets which have inserts Vering general infonatIon on ectopic pregnancy and FAQS. This means that the infomiation is tailored to the patiènvs 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 vtheels with a reminder to hospital staff to Order leaflets. The number oftreatment packs sent over the portIng period exceeded last yea¢s record number with over 12707 packs being sent ou¢.
af.. We have also sent out 7245
leaflets on wegnancy of unknown location. We aanged for the generdl inf0mtion and individual leaflets to be translated into seven languages and produced an accessibte print version. The 5anguages a.. Arabrc. Bengali, Chinese. Polish, Portuguese. Somali, and Welsh. These have been uploaded to a dedicated sectFon on our website and each treatment pack includes an A5 leafiet stgnFrf)sting to the various language versions in the corresponding language and English. This is so that healthcare professKinals can advise theFr palients, about the language versions and native speakers can also h)cate them. We sent out over 869 EPT-branded posters is again an expected #iuease following the fall during the previous financial year. These raise awareness of the symptoms and ernolional impact of ectopic pregnancy and are disserrinated free of tharge to hospitals. We also encourage SuprterS ofthe charity to disseminate these across GP surgeries. clinics. phamlactes and Urgent Care Centres. Our"symptoms' poster infonns the general public of the signs of ectop pregnancy wilh the aim of educating communities so that anyone experienung symptoms sed( the care that they need as soon as possible. The"emotions' postsr reassures people that their feelings are common. Both posters indude the EPTS contact details and website address. We produced simple, wallet4ized Contact cards and sent out 3700 during the financial year. These are useful ot only for people lo keep in their purses and 74Yallets over time in case of future need but also helps healthcare professionals wilh an added printed resource. These are especially helpfijl for hospilals who do not distribute our leaflets and give out their (e.g. due to Tnjst pdicies) and can instead indude these cards with their own materials. Key support services Equlpplng people wilh infornplion goes hand-in-hand with our providing ffKJre personalised support Sermces. We offer emotional supwrt and inf0m1atn in a number of ways.. via support line, email exchange, Zoom group sessions, lext exchange. social media direct messaging and through our online forum. Topics range from experiencing symptoms. going through diagnosis of eclopi¢ pregnancy. to infomation on trying to conceive succèssfvlty again. We also frequenty help those who need us after a number of years of heartbrèak. The informalion we provide is medicalty mcNJerated and overseen ty Irained staff and team members. Our support team mentsrs are exceptional in their care for anyone suffering the aftemath of an ec*opic pwnancrf. We are knn among healthcare professionals for providing empathic support and evidence-based infomiation and a approached by them vnth suggested ideas and ¢tent. For instan, a leading dinician c<Jntscted us to offer training to help us support women and people wtho experience caesarean section scar ectopic pregnancy and discussed what more we could be doing for this type of ectopic pregnancy. The team aims to provide a dedicated Spa for women and people who exFerience Caesarean section scar ectopic pregnancy.
Support Ilne.. Support calls prowde in-depth opportunities for callers to discuss events, their emotions aThJ ask any questions. Our support line functionality in nv)ving to a calkback service continues to be highly effective. By encouraging callers to leave conLgCt details on voicemail, we are able to Communite quickly via emailltext message to arrange a call at a time that suits best which can indude evenings or weekends. We aim to Spond via text messagelemail within an hour Of two of the message being left so that callers ¢eive acknowledgement fast al an anxious time and strive to ensure calls take place within 24 hours of the original request or accommodate aliemalive times to suit individuals. To break dovdn baffiers. we have put in place interpreting services with two speualist suppliers to enable people whose first language is not English and British Sign Language to use our support line Iout hindrance. Emalls: We respond to over 300 emails per rrK>nth requesting SpIfiC help and support during or after treatment for eclopic pregnancy. We continue to recruii and train additsonal team fftmbers vtho are supervised by senior staff. In addition, we also exchange emails and other fomis of communication with medical professionals, joumalists and supporters. resutting in over 5.IX)O ernail exchanges a year. Due to demand, we ffiJIted 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 websrte and are 'lNe', thereby offering virtualty instant infomation and support for those in need. We had over 486,OW page views in the last report year (over 310.tM)O last report yearl. 92% of users access the forum via tsbletlphone.. A volunleer with lived experience of ectopic pregnancy vtho is a websrte user experience (UX) student has kindty assisted with suggestions on how to improve Ihe forum and we hope to upgrade to an improved, more user-fn'endly platfom next )In8nci81 year. We are planning to secure grant funding for this. We will look into altematwe. more user-friendly forum plafft)rms, gather user experiences, and web developer will perfom a VIeW and report on phpBB perfomiance and tracking to infom the process and select the most effective for our audience's needs. For every person vtho has the cK)nfidenrk to post on the boards, there are many more who take their comfort from reading the messages of others. Our Forum Moderalors continue lo monitor the boards on a daity basis and aim lo respond to poster5 Within 24 hours" this is so thal no person is warting for MO than a day for a repty at an anxious ts'me in their lives. Soclal medla: We have solid. athve presence on social media platforms, namety Facebook, X {formety known as Twitter), Instsgram. TikTok, Threads and Linkedln accounts. Some direct message via these social media sites for support and many others read arKt take o)mfort. Some people comment and find support on our posts from others who have been through similar eXperIen$. The EPT follower groth across all pktforms has increased by 14%. with over 41.000 followers at the end of this finanual period. Ir engagement rate was 4.39% IAnythirvJ bètween 1 % and 3.5% is considered an average engagement rate, with a higher 8nga9ement rate represented ty anything over 3.5Y•>. On Facebook, we have a public page with over 21.OLYJ followers (18.900 last financial year) centred on infonmation. However. Facebook made changes to wblic groups which resulted in lack of control over who could join and visibilty of grouplcomments. The EPT has a dosed Facebook group with over 1.6k members and it provides a virtual community enabling Ihose who have experienced ectopic pregnancy to readj out to others going through a similar expenence and facilitate our directing users to sources of accurate information on ourwebsite and othersupport services. Some of our top perfoming posts reach over a quarter of a million people.
The Epfs Instsgram and X accounts have over 11.300 and 3,S¥)O followers speCtelY {9,500 and 3,81)0 respectivety last financial year). The EPTS reath on Instagram for this finanraal year shows an increase of 291.9% compared with last year. Instsgram is our tastest growng platform and the use of reels and stories is increasing our reach and Ectopic Pregnancy Awareness Day h1 a big impact. For Linkedln. since updating our profile in March 2022 to a -company" (there is no not for profft option) for a more professional appearance. at Ihe end of this reporting peiiod has 819 folk)wers. Increasing reach on Linkedln viill be a focus for the coming financial year. Our TikTok account is primarily used to reach the key 13+ demographic and since launch have over 2500 followers. Our Treasured Tulips gardens on social media enables anyone visitsng our website the abilty to request a "plant" and dedicate a tulip they can choose lo personalise. People are provided with the option lo donal8 so there are no barriers to remembrance. During this financial year. we had 670 tulips, with 83 completed and published garden patches. At ear end this increased our total atches to 279 slnce Jul 2021. inEn f rtificates for ncies and babies re the 24th we nanc This is tional and can be a member our ba . The certification indu es ecto ic miscarria es and termination a estation befo 24 eeks. This sub. becam ne of our to rmin osts acro an Durin earfs Bab Loss Awarenes5 Week our social media sts were seen h tf a million limes wth that number still InCrean since the end of Ihe Week. Eve share allows our contenl to reach those who ma ed our su rt and resources. Our s toms animation video was viewed over 27 000 times with man ofthe commun shari to hel others ident. toms. Markin 25 ears of The EPT we chose a res l acknowled ement across swal media with an a0M with stan out achievements Losen The EPT team. This vras mel with a ve owerful res nse of su ort from our communi with comments such as 'Thank ou for eve hin ou do. It reall 15soim ortanl f on educatin le but also for hel in those who like m self find themselves all of 8 sudden in this sca sttuation n ecto din su ort&l in to make some sense of ve in ' bein shared across ufferin As of end of April. linked Stpty with Inslagram and Facebook thannels to make purchasing easler particularly after shop posts and already seeing irnp&t. Face4oface 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 appettte for using video calling etc, we offer remote face-to-face support now usin8 Zoom. This can be requested on an individual. couples or group basis. We hold monthly sessions and include a mix of general and dedicated group5 for those who have experienced more than one ectopic pregnancy, non-tubal ectopic pregnancy. and partners. Llve Chat: We offer a Lr¥e Chat sep11 using the Skype platfonn to accommodate anyone who prefers to type and receive replies in real-time. This is currently operated on a requested bass due to resourcing constraints.
Support for healthcare professionals: At the rent AEPU conference, we started conversations wÉth The Miscarriage Association about support for healthcare professionals working in early pregnancy following a workshop. Our organisations started collaborating to create a space dedicated to facilitating peer support for staff in early pregnanry. The support services process involves recruttment, trainin& and on*oing support and pastoral care. Thesupport is medicallyoverseen and moderated. The supportteam Ésvery collaborative and areable 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 dirert to organise. The team works efficientty and each support route has at least two dedicated team members. This is so that no one person is overly burdened by emails/calls/mess3ges which are intense in content. there is shared learning and peer-to-peer support among these team member5, and we have means for cover during absen. Our Project Support Team (member5 help with 3 variety of administrative tasks on an ad hoc basis) grew to 80 during the report year. Our improved newsletter, e-topic, continues to be delivered electronically.
Strategic aim 2: Education and awareness Brflllant works you guys are creatlngll Creatlng awarene55 Is outstandin& but what wlll make It even more amazing Is .. as YOU 50 confldendy and beautifvlty stated... women and families need to know there are places of support and The Ertoplc Pregnancy Trust is at the top tier for Infomiation. support and just all round sisterhood ! ! ! The Trust seeks to raise awareness among the medical profession and public at lar8e so that earlier diagnosis can be achieved. To facilitate this over the last year, we have: Ectopic Pregnancy Awareness Day TheEPTh I e second Ecto icP nan Aw Da on1Au ust2 Ecto ic Pre ha$hts #ect Becca Mabe of ecto of an ecto nan Awareness Da saw our en ement ra e 6.91% acros nnels and th nan awarenessda has over 732k views on TikTok. Sooal media influencers such as AMotherPlace and Aliaa Bumett BlackBab LossAwareness shaied their own ex eriences nan and su orted the da yth osts and si osls. Charfottecrosb h d the s toms nan athou h from a different account's content rather than our own. ic Collaborations Pregnancy & Baby Charities Network: The EPT is a member of this Netsvofk whsch represenls UK charits'es whose focus indudes improwng care throughout the path lo panth0od before, during and after pregnancy and after losing a baby or pregnanLy. The group collaboTrtes to influence the Govemment and the NHS to improve care for parents. The EPT strives to ensure that people vtho experience early pregnancy losses are represented. The Director of the EPT was fomierty one of Ihe vice co-chairs of the Network (and previously to that its secretary) and is instrumental in govemance. oversight. and strategy. All-Party Parllamentary Group: We are rrEmbers ofthe AlPaty Padiamentary Group on Baby Loss which brings together MPS and Peers from acmss parties to on this vita issue. The EPT has been a part of the Group from incepkn'on in 2016. The APPG'S overall aims are to develop polry thal supports families dealing with the grief and k)ss ofa baby and to raise awareness of what more can be done by the govemment. Partiament or other agencies lo help those affected. By participating in discussions. The EPT constanty ensures that ethjpic pregnancy and earty pregnancy loss remain viithin the Govemmenfs agenda. NICE Guldellne: Followng representation as a stskeholder on the introduction of a NICE GuKleline for Pain and Bleeding in Eaty Pregnancrf in 2013. regiSted as stakeholder for updating the clinical guideline on CG154 Ectopic pregnanw and miscarriage: diagnosis and initial management. EPT director Munira Oza continues to be a Lay Member ft)r subsequent updales and particÉpates in the NICE Women and Reproductive HeaFth Suite committee.. Ms Oza has been part of the committee for the Women's and
Reproductive Health Suite for NICE since March 2023 and was contacted to contribule to a blog post for International Women'8 Day 2024 as lay member.- She participated in a rent update published in August 2023 conceming NG126 Ectopic Pregnancy and Miscarriage" medical management of miscarriage. Malemal Mental Health Alliance." The EPT joined Ihe Matemal Mental Health Alliance in December 2023 and The EPT and MMHA are planning to collaborate on o)ntent. National Bereavement Care PalPNYdy: The EPT wothed in collaLw)ration wtth other chariles and with Ihe support of the Department of Health and the APPG on Baby Loss to produce a National Bereavement Care Pathway. We were reviv•ied the Pathway on Mkscarriage. Ectopic Pregnancy and Molar Pregnancy Pathway to ensure that infomiation on ectopic pnancI is up to dale arKI CaT so Ihal all bereaved parents are offered the same high standard of parentacentred. eryathic and safe care when a baby or pregnancy is lost through the condtbon. The EPT conlinues to supwrt the Pathway.. Training talks The EPT offers training talks to healthcare professionals and students which indude lived experiences of ectopic pregnancy. We provided talks to healthcare professionals auo$s the NHS. medical course%, govemment departments, and charityes. Othér key collaborations: We along wilh 12 other pregnancylbabylparenting charits designated Core Particapant status for the UKS Covid Inquiry (healthcare module). The Director joined Women's Voices Ad¥i50ry Group for MiscarrFage Care and various Patient and Public InvolveffEnt {PPI) groups joined into a colledive, foFmally named as the Wornn's Advisory Group Tommy's National Centre for Matemty Improvernent. Campaigning and Policy Thlnk Ectoplc campaign: We prOg$Sed our Think Ectopic campaign foSed on raising awareness among kximary, urgent. emergency. and out of hours re. At the heart of the pmject is a biocard on ectopic pregnancy which reminds healthcare prOfessnalS atKKrt ectopic pnancy. There are also supporting materials which include patient safety netting pro forma and clinul handover template. All materials for the Think Ectopic campaign We cothated viith health professionals and we launched the pilot in September 2023. The feedback from these pilot sites was highty positsve. 1 of clinical staff suNeyed had used the biocards. 78% of respondents feli that it had increased their kno8ge about ectop pregnancy symptoms and 68% stated that their kn¢)wledge of how to refer someone vnth syrnptoms had increased. Rather than a second phase of the pilot as originalty intended. due to the incredibty posilNe feedback, we planned to go straight to launch. Launch will entail enlisting staff in e8rty pregnancy units to become Think Ectopic Champions at their hospitals and disseminating copies among their colleagues in acadent and emeryency, paramedics. and midwrfery Ihereby raising awareness in those sp)ecialist units.
We continue to participate in three foSed la[gn$. Baby Loss Awarenes5 Week; Small Charity Week and Volunteers, Week as opportunities for our voice to be part of a powerful, collectNe message. Through campaigning, we are able to shine a spotlight on ectopic pregnanw and eaty pregnancy loss and seek to influence poliLy and action Change. Baby Loss Awareness Week: Baby Loss Awareness Week tskes place annualty from 9 to 15 october and is an opportunty for bereaved parents and their loved ones to acknowledge and remember their losses. It is also a chance lo raise awareness of the e¥)lionaI 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 15 a collaboration of a number of charities untted in their supwrt for families who experFence the dèath of a baby induding Bllss, Child Bereavement UK, The Miscarriage Associalion and Tomms as well as the EPT. Wa have partkipated sinc inception and this year was the 20Tr1 anniversary. Today, the EPT Continues to drive the Week fotward extensivety alongside other charities as the EPT Director sits on the core Working Group and s¢xal media coordinator sits on the group for Marketing and Communicatfjns. The EPT were contacted by an intemationalty knovm company to assist with eaty pregnancy loss support for employees, providing tslks in the workplace and sharing cirde viith anothercharity. The EPT also secured a case study for BBC Radio London during Baby Loss Avrareness Week and Diredor. Munira Oza spoke on the Shay Kaur Grewal show. As part of the BLAW campaign, we sold special Baby Loss Awareness pins and used social media to reach out lo oui followers, particularly on Fae£book. On 15 October, as in previous years, the week closed wth Ihe Global 'Wa¥e of Light, where candles were Itt across the gk)be as part of the intemational Pfegnancy and Infant Loss Aw8reness Day. During this yearfs Baby Loss Awarerkess Week. our social media posts were seen half a million times. with that number still increasing daity since the end of the Week. Every share allows our content to reach those vtho may need our support and resources. Our symptoms animation video was viewed over 27.CQO times, with many of Ihe communty sharing to help others identify symptoms. CollectNety across the partIpating charities, the number of families reached wll have reached into the many hundreds of thousands. As well as participaling in Baby Loss Awareness Week on an annual baws, this group shares best practice and identffies potenb.al joint opportunities. Small Charlty Week: Small Charity Week takes place annualty and is devoted to raising the profile of small charities. Held ben 24 and 28 June, we ched over 450(KJ lup from 261JXt last Trport yearl. largety down to a post fUSed on symptoms (°Five things you shoukl know about symptoms of an ectopic pregnancy.). Volunteers. Week: The first week of June sees Volunteers. Week and. vms a valuable opportunity to highlighl our valued volunteers for th[ support and publth thank. Wom•n's Health Strategy: The charity had submitted evidence for th@ govemmenys Women Health Stralegy and it published in Juty 2022, wth focus on improveff*nts for women's and girl's healthcare in
England. The EPT continues to work alongside the Department of Health and Social Care to fvrther actions on eaty pregnancy loss care and PnancY Loss Review recommendations. Conferences We frequently participate in 6xtemal conferences focusing on eaty pregnancy. The Director sits on the Board of the Assoaation of Earty Pregnancy Units (AEPU) offering the patienvs vol. Our DitOr represents the Trust al AEPU meetings and attends the annual Conferen.. Our Director also usualty presents at in-house hospital semlnars and meetings and we often provide EPT materials for displays whh largely ceased during the pandemic. We attended the SEPN confen and this was a valuable opportunity, hawng Ihree sessions In the day with focus on ectopic pregnancy as 11 as other important tcycs like suppo"ng transgender patients in ttended the Prima ca Conference where we introduced the Think Ectopic project and concept of the ectopic pregnancy biorArd, gathering valuable fredback on our ideas. We presented the idea of an ectopic pregnancy biocard and received very posrtNe feedback on our plans. We wÉll build on this feedback to develop a Strategy. induding ¢trcreating materials with healthcare professionals and piktting the campaign. This work will be a key part ofthe charity's activibes in the next financial year. We attended a Pregnancy and Baby Loss Avrareness event at Boots HQ. Media We continued to assist a number of media OLrtkts covering print. on-line and televisiorvradio fonnats. We feceived yde ranging exposure in print newspapers and magazines. COvege included a headline artide on The Guardian websTle aboul e¢topi¢ pregnancy corrtributed to by the director and a case study. referenced by ITVS This Moming as a source of support. assisting an article in The Telegraph. and artides in the Daily Mail and The Sun. ttke fom)er of which signposted to our support and latter needed some corrections to artide for which we contacted the ioumali$t. We asked to vIeW magazine articles and a script fr)r a Vl- known BBC TV programme. Our dedicated team of volunteer fundraisers continue to swead the word through InteIewS such as with BBC 10¢81 radio stations and local press. whic* often indude the Trusfs contact details. We are fortunate to have the continued support of a PR agency through someone we had supported and the agency's foundats'on sought to wort wtth us for PFUmarteting. Merchandise Our onknline shop stocks a range of branded merchandise Ihat promtes the Trust. By purchasing and using our products. awareness about ectopic pregnancy and the Trusfs name and website get increased exposure am(Ing the general public.
Our biggest Selle continue to be our pin badges which are excellent for increasing awareness about the condibon. Our second most popular item this fin8n(ial year has been a new produd, a branded snted candte, whlch VRS received extremety well. We added a new design 25 year Christrnas bauble and 25 year EPT badge which have been popular too. Shop sales for this financial year increased by 17QA as compared with the premous finan(aal year. During the nexl finanual year. we aim to launch new products for remembrance as we recognise that people applate a meaningful purchase and plan to introduce four new items. Fundraising We receive no Govemmenl funding and exist through the g00dvlI of our fundraisers. Through the dedication and energies of our fijndraisers. we have had another Successful year. Our bespoke fundraising initiatives EPT80in1, EPT1000 Challenge. and EPT Mini Challenges continued to be popular. We continue our successftjl partnership with Run4Charity which provides a(Less to thal runs covering distsnces from sk to full marathons bolh across the UK and intematbonally. The London Marathon and Great Noth Run continue to draw significant interest from our fundraisers. For The GNR. we had 15 runners. For LM, we had 15 runners. During this financial periTrJ, we had a mixture of events: Ihese induded race nighls, being rKJminated for charity of the year. golf days. wedding favours. raffles, runs induding 5-10ks, half and full marathons in the UK and Paris. a dinner dance lin memory of a friend who died of ectopic pregnancy), swimming, tm'king. and vrdlking challenges and skydivesl The EPT 80 in 1 thallenge, where people cover 80 miles during the month of August {8th monthl. continues to be popular. This finanual year had 223 participants who helpeds to raise awareness of the 1 in 80 pregnancies that are ectopic. This is now an annual event. Our Fundraising Coordinator continues to be supported by our press officer vtho assists fundraisers in getting press coverage, fundraing supports who ltsjks after the EPT 1000 Challenge dedicated closed Facebook page forfundraisers to offer a space for mutual supwrt and encouragement. running and LM groups amongst other activities and closely our social media coordinator to promote actiwlies, achievements and vrkS closety with crealing campaigns and digital support.
Strategic aim 3: Supporting research Ectoplc pregnancy is sttll the commonest cause of death In early pregnancy and, even if not fatsl, the effects are distressing and far4eaching. Women can suffer from long tsm) psychological problems and it can impact on their future fertility. If an ectopic pregnancy Is diagnosed early. it likely It can be treated effectlvely and perhaps avoldlng the noed for invasive surgery. Thavs vthy it's Important that there Is more research like our trial into way$ that we can improve the medlcal management of the condltion. - Profe550r Andrew Horne. Univetsity of E(finburgh The EPT contlnues 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 objecttve.. Improving treatment choice The EPT supForts research into biological prOse$ Ihat may be conne(aed to ectopic pregnancy. The Trust sponsors a PhD student at The UnNernty of Edinburgh who is researching the causes of ectopic pregnancy. This involves examining llUlar changes in the lining the Fallopian tube vnth may result in ectop embryo implantats"on. Th vmrk was supported by a joint Medical Research CounciVEctopic Pregnanw Trust PhD Fellowship. This research was briefy paused during the pandemic but was restarted in Autumn 2021 and final third year pledge was advanced. The research compkted and the paper is to follow soon. The EPT worked wtth Sands, The Miscarriage Associatvjn. and Antenatsl Results and Choices on audit questions conceming bereaverrEnt care in earfy pregnancylgynaecology unts and partiopated in the Pregnancy Loss Review on whether the law should be changed to allow registration of pregnan¢y losses before 24 weeks. The report was published in Juty 2023 and The EPT remains part of the steering group reg8rding implementstion of recommendations. A key recommendation involved the implementation of a certification process for pregnancy k>sses prior to 24 weeks which was launched in FeLffuary 2024. We continue to WO[* on a Priority Setting Partnership for Ectopic PgnanCY. The proje(# is a collaboration btheen the Cochrane Gynaecology and Fertilty Group, the Universty of Monash. UnNersity College London, and The EPT and commenced the previous financial year. It aims to idenlify the top ten prioiities for futu research in ectopic pregnancy. The firnt stage broughl together people from across the who suggested their lop five'unanswered, searCh questions. vthich to then prioritised in an intemational survey. The final Stage involved refining the interim list to the top ten research question5. Ms Oza is a key lead in the project and sits on the Sctentific Steering Committee and attended ESHRE for PSP this year. to finalise the list li is anticipated that the paper will be published in the next finala1 year.- We assisted Kings College London on a study on eathl pregnancy loss during the Cowd-19 pandemic (along with the baby k)ss coun5elling charity Pelals). The study is part ofvAder research enltued PUDDLES (Paients wtho suffer pregnancy loss and vthose babies die during the pandemic) and is 8 global collaboralion betsveen
the UK, Australia. Brazil, Canada, India. ttaly. and New Zealand to understand the experiences of bereaved parents during the COVID-19 pandemic using qualtlative interviews and 8naWses. This specific collaboration with The EPT and Petals investigates women's experiences of eaty pregnancy loss and care during the COVID-19 pandemic. The EPT requested participants for the study which was quickty oversubscribed due to huge interest in those thishing to tske part. The paper is expected to be published next finan81 year. In connection with our vrk on PUDDLES, we reviewed a consensus statement on post-pandemic perinatal mental health, Last yearwe Vre contacted by the Aberdeen Centre for Women's Health Research to assist wth Public and Patient Invofvement to explore the impact of existing medical trealmen[ priorib'es foT new medical treatments and acceptability of rTHfepristone as an experimentsl treabnent. We assisted wth gathering participants for PPI engagement and participating in meetings to gather insights into vthelher women thought this Vuld be a beneficial stuty. Entilled the AMETHYST trial (Adding Mifepristone to mETHotrexate for ectopic pregnancy ¥fudy), the stage 1 bid was submitted to the National Institute for Heath and Care Research (NIHR). We were contacted last fjnancial year by Uni¥er&ty College Hospital to asslst wilh a research study investigating the psychological impact of being diagnosed and managed for a caesarean scar ectopic pregnancy. We were contacted in December 2023 by UCL the development of a core ouicome s8t for trealment of caesarean scar ectopic Pfegnancies - COSCAR. Vle continue to progress COSCAR We were invited by Sergio Silverio to Joln regular Ltfecourse Analysis of Won*n'$ Mentsl Health Research group meetings. The EPT were also asked by Sergio Silverio to be invcAved in a new study to look at earty pregnancy loss and complications in Ihe post-pandernic era. This is a foll¢)W-on study from VESPA and PUDDLES. We were contacted bythe Royal College of Midwives to assist on a priority setting partnership for maternity and midwifery care. We joined as project partner alongside other organisations including The Miscarriage Association. Antenatal Results and Choices, and Birmingham Women and Children's Hospital. We supported research through UCL including sharing a survey on patient experiences of early pregnancy units which seeks to look into ways to improve care and participated in a symposium regarding linguistic challenges in pregnancy loss communication alongside Tommys, Sands, and ARC.
Representing lived experiences of ectopic pregnancy Exaetty 21 years ago for me. No sUPP(Kt whatsoever, Just experted to brush It off and cary on. People around me dldn't like it when I fell to Ple Thank you for bringing this Out into the open. The Trust has forged key lationShIpS th a nuntsr of similar focused organisations and infonn the debate through INed experiences and besl practice. These indude other charilies and groups such as: The Asso(iation of Earty Pregnancy Units". The Trust has a repsents1[¥e on the executive board of the AEPU which develops best practice to managing ectOFMC pregnanry and other earty pregnancy complications. participating in regular ting5 and the AEPU strategy day. Professionallgovernment81 anIsatIOnS.. These indude NHS Drect, the Nati81 Institute for Health and Care Excellen, the Department of Health ar Soual Care. the Royal College of Nurses, the Royal College of Obstetricians and Gynaecologists. the Royal College of Genefal Practstionets. the Health Services Safety Investigation Body, the Matemity and Newbom Safety Investigatii)ns programme, and the Intemational Society for Uttrasound in Obststri(s and Gynaecology. This ensures that the condition and lived experien¢es are well presented and induded in the developrrtrènt of best practi.
The Ectopic Pregnancy Trust The report of the trustees for the year ended 31 March 20234. Charity name." The Ectopic Pregnancy Trust Reglstered charity number: 1071811 Date of reglstrallon: 2 0(knber 1998 Principal address.. 483 Green Lanes, London, N13 4BS Telephone: Admin- 020 7096 1838; Hdpline - 0207 733 2653 Trustees.. Mrs Alex Peace-Gadsby {Chair until December 2023).. Mrs Shabana Masavi ffreasurer) Mlss Julle Price" Prof. Tom Boume., Prof. Andrew Home; Mr Chris Woodward (Chair from December 2023); Rachel Small.. Mtchael WocKI-Wlliams Stsffrream mèmbers: Munira Oza (Di0r>", Jill Ansell (Fundraising Coordinator); Sonal Colvsn (Shop and donations coordinator)., Sam Page (Hospitsl leafiets coordinator).. Kerri Stedman (Social Media Coordinator). Helen Corsi-cadmore (Projects coordinator): Lois Rowland (Fundraising support coordinator); Tara Movertoy (Volunteer support coordinatorlAdmlnistratKfynl: Natslie Max (Press officer}.' Karen Donovan (Support Team)., Mlchele Fugiel Gartner (Support Team)., Joanne CadWunor (Support Team). Gita Noren (Support Team)., Katharine Christopher (Support Team); Beth Ptdd {Support Team).. Sophie Ashby-clarke {Support Team),. Kalle Levls (Support Team). Mary Hall {Admlnlstrallve support) Medlcal advlsers: Ceulia Bottomley MB BChirMRCOG", Prof. Tom Boume PHD MD MRCOG,. Sonal Colvin Bsc., Professor Colin Duncan BSC(hons). MBChB{hons). MD. FRCOG. Janine Elson MD FRCOG; Prof Andrew Home Ph.D, MRCOG,. DavorJukovic PHD MD MRCOG.. Emma Kirk Bsc, MD, MRCOG,. Nick Raine- Fenning MRCOG. MBCh8 Ph.D: Jackne Ross MBBS MROCG,. Prof. Siobhan Quenby.. Rachel Small RGN, RM,FRCOG(Hon).Lisa Stsrrs IHonsl RN RM Ambassadors: Michelle Gayle (A¢tress and Singer): Susan Penhaligon (Actress},' Amanda Redman MBE (Actressl,. Philip Calms (Actor): Charlotte Crosby tN Personalty) Voluntsers Volunteers continue to be an essential resource in ensuring thal the tharity is able to delNer its objectives. They are typically people who have been affected by the conditi.on and want to give something back to the chartty, such as by answering helpline enquiries, facilitating the message boards, becoming a budty through to administrative tasks. The tharity has striot policies and pmcedures 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 les5 favourabty on the grounds of their sex, race, dass. colour, racial group, ethnicity. marital status, sexual orientation, age, trade union membership or otheTh¥ise, religious belief or physical or mentsl disability-
Dec181on making The Trustees are spOnSible for strategic decisions with appropriate consultation with the staff. Whefe medical infomalion is required. the Medical Advisors a Consulted. The staff have the authority to make operational decisions without prior Trustee consultatn. Rècord8 maintenance The charity's records a maintained and annual accounts are prepared by the treasurer. Type of govemlng document Trust deed. How the charity Is constituted The chafity is constiluted as a Trust. Charfty Trustee selectlon methods The Chadty has a clear poliry and procedure for the recruitment, seledion and induction of Trustees. which runs alongside our equ81 opwtuntties policy. Policy on reserves The chaTTty holds ts¥o bank accounts with Charities Aid Foundation, a cash account and a Gold account. The Treasurer takes responsiknlty for ensuring that excess fvFKls are nVed into the Gold account to ensure that the potenlial for interest is maMISed. The trustees have set a reseNes licY which requires Ihal the reseNes be maintained at a level that ensu5 that the charity's core actNity continue during the perKxI of unforeseen difficulty. The calculation of the level is an integral part of the organisation's planning. budget and forerxst cycle and lakes into account risks assoaated Mth each stream of income and expenditure being different from Ihal budgeted. the planned actiwty level and the organisation's commitments. Further financial review detsils TheTnMtse#l# trth¢ttsmontrthe sftuatitinknènsurelhe chaiityls.in a ty99. ... . . Avallablllty and adequacy of funds The board of trustees is satisfied that ¢hanVs assets in each fund are available and adequate lo fulfil Ihe obligations in respect of each fund.
Ststsment ol Trnstees Responslbllities 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 ofthe financial year and of the surplus or defiat of the charity. In preparing those finanaal statements, the Board is required to., 1. select suitable accounting melhods arKI them appty them consistenty., 2. make estimates and judgements which are prudenL 3. prepare the financial stalements on the going concem basis unless it is inappropriate lo presume that the charity will continue in business. 4. statè whether applicable accountirvJ standards and stataments of t¥)mnded practw have been followed, subj'ect to any matenal departures di$dosed and explained in the financial statements. The trustees are also responsible for maintsining proper accounting records which disdose with reasonable accuracy al any time the financial position of the charity and which are suffiaent to show and explain the charity's transactions and enable them to ensure that the financial slalements comply with regulations made under the Charities Ad. They a also responsible for safeguarding the assets of the charity and hence for taking reasonable sleps for the yevention and detection of fraud and other irregularities. The trustees are also responsible for the ntentS of the tnjstees. report. Signature Chris Woothrt8rd Acllng Treasurer
Independent examinetrs report to the tftteeS of The E¢toplc Pregnancy Tn¢ I report on the accounts of the Tnjst for the year ended 31 March )21. Respective responsibilities of truslees and examlner The charity's trustees are responsible for the preparation ofthe accounts. The charity's trustees consider that an audtt is not required ft)r this year under Seclron 43P) of the Charities Act 1993 (the 1993 Act) and that an independent examination is needed. It is rny responsibilty to: examine the accounts under seclion 43 of the 1993 Act; to follow the procedures laid down in the general Directi$ given by the Chaiity Commission under section 43(n(b) of the 1993 Act., and to slate whether particular matters have come lo my attention. Basls of independont oxaminetrs 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 aoUntS presented with those record$. It also include5 consideration of any unusual items or disclosures in the accounts and seeking explanations from you as trustees conceming any such matters. The procedurès do not provide all the evidence that would be required in an audtt and consequenuy no opinion is given as to vthelher the accounts present a 'tru8 and tsir vievl and the report is limited lo those matters set out in the statement below. Independent examinerfs ststement In conneclion with my examination, no matter has come to my attentn vthich gives me reasonaEJe cause lo believe that in any material respect the requirements to keep accounting records in accordance with section 41 of the 1993 Art and to prepare accounts whith accord with the accounting record5 and CoMY with the accountlng requirefflents of the 1993 Act have not been or to which. my opinion, attention should be drawn in order to enable a prOFr underslanding of the accounts to be reached. Signatur8 Date= 22.0{ A.
1r23125. 1127 AM Xero I Profft arbJ Loss. DetaIj l Ectcyc Pregnancy Trust Profrt and Loss - Detailed View The Ectop Pregnarw Trust For the year ended 31 Marth 2024 2024 2023 Tumo¥er 9.047.36 667.18 53.ffi6.53 7.354.37 20,087.52 10.832.T8 270. knknst IrKcfflo 817.59 141,072.43 5,895.23 206. FUndr8ktJActlY1t 209. Mithantli5e Sakns 204.othw Fundrar0 Pifcrfm8 2W. Perso1 Donalcd 23,725.23 12,767.36 184,517.84 111.143.6T 21119gA1 TotsiTumDvqr Cost of Sales 1(X)1 . Shop C0515 6M46.03 1.420.82 7221.24 6.900. 25,726.08 22217.22 502. PAYE 9.427.04 13m.54 9.715.00 506. Supp1 GEwp C(.. Ht 11.378.99 501 . Not SaWo8 s5..33 &3.793.23 2.684.15 7.625.34 119.528.81 65,08923 504. suppo Group C5.. Em"I Tolal Co•t of 8Dles 3,425.00 74351. 101- Bonk Fees 478-Admin CC$ 401 . Ccv)SL 234.00 9.561.16 670.txi 4LKlb. SloragtrfDr L Total L•allot• 1.153.61 1,153.61 8n80 Managem•nt Costs 512. Man¥J8m)t Costs." Ger1 14M51.0¢ 13,611.32 17.71629 33.6&8.59 439.16 13,611.32 42.218.ee 108. PayTrAI Costs 461 . Paswe & Stsuorwy sIP Costs 1Crt)3. Storage". Sknp Totsl Shop Colts 1C6.Sundry Expel Support Group Costs SJ7. SupFL¥t Group CoGls.' Zc Tot•1 Stspport GroupCo¥ts 704.To[0 & Intem 105.TTrv & We¥8re 493-Trnvel & Subsi9tor 1.075.6f 1075.61 1,173.T8 1,337.72 1,632.79 1&32.79 381.20 1.560.75 1.560.75 979.60 316.Th) 916.16 425-Website & DBJit41 klwkoti Fundraislng Costs 4). Fundrai¥ Cr6ts.. lU¥¥j% 56.718.19 35,568£1 19.1.97 5.$53.60 17,105.11 6.907.20 .012.31 Totsl Fundrnlslng Cojts Project C<tsts 3XI- EW9n Prini& PLt Trknl Project Cogts T•talAdmknl8lrnllv• Costs 13.09).60 11090AO 144.31&54 If9227.311 179.227.311 179.22731? Opernung Profft 1fj%717211 I71721) (4717211 Profi¢ *1grT•xalioft https:IlrewJrling.xer0.mIlZFlIRunl4s469l6?15cuSlC-TTue 112