First Annual Report and Review 23rd September 2017, Penny Brohn Centre Bristol Welcome and introduction
Founder Gilly Cant Meet the team…
Gilly Cant Sarah Coombes Sarah J Dow Sue Yates founder and trustee trustee founding member & trustee trustee
Rachel Ferry, admin Clare Jacobs, admin Sally Ann Watkiss, admin My Story…
• Diagnosed 2013 aged 45 • I personally found living with one breast difficult • There was little advice • Researched reconstruction but it didn’t appeal • Lack of support for ladies choosing to live without reconstruction • 24TH August 2014 I launched Flat Friends UK The Flat Friends Vision
To provide a safe place for ladies to talk about To provide advice on issues related to living clothing, underwear without reconstruction, and everyday living in a closed and private without reconstruction. environment Make a Provide difference genuine, to women’s heartfelt experiences service
To campaign for living For details of Flat breast free to be an Friends to be given to equal treatment option all ladies facing Build a Drive to reconstruction, and mastectomy surgery, thriving change in for all women, no so they can come to us matter where they live, for support and advice supportive attitudes community everywhere to be treated the same.
#allwoman #breastfree #noreconstruction #unilateral #bilateral #mastectomy Our new favourite number…
Charitable Purpose The relief of women in the UK who have had or may face mastectomy and who live or are considering living without breast reconstruction; in particular (but not exclusively) by providing information, advice, and raising awareness among healthcare professionals and the wider public Patrons announced Dec 2016
Professor Dame Lesley Ash Subramanian Lindsey Coulson Fallowfield BSc (Hons) MBBS (Hons) Actress DBE, BSc, D.Phil, F.Med.Sci FRCS (Gen Surg) Best known as ‘Carol Jackson’ Director of Sussex Health Consultant oncoplastic breast in the BBCs ‘Eastenders’ where Outcomes Research & surgeon based in south east. she met Gilly Cant when she Education in Cancer (SHORE- Advocate for patient advised on the storyline for C), a research group dedicated involvement in decisions, her character’s double to exploring the implications of supporting patients through mastectomy. It is important for a cancer diagnosis and the their choices is of paramount women who decide against benefits and harms of different importance – living ‘flat’ reconstruction to be properly treatments should not be seen as a stigma supported Funds and fundraising
Gilly Cant, Sally Ann Watkiss, Sue Yates Balance sheet to 31st March 2017
Income £5,936 Expenditure £2,301
Sponsorship £80 Website etc Cards Shop Leaflets £1,007 Donations Conference Calendars £133 Paypal (Shop, Cards, Calendars)
£343 £1,169 £464
£500 £3,761 £781 …and this financial year to date
Income £9,847 Expenditure £460
£150 £9,318 £0 Website etc Cards Shop Leaflets £0 Conference Calendars Sponsorship £529 Donations £309 Paypal (Shop, Cards, Calendars)
£0 £0
£0 What we use our funds for…
• Informing Health Care Professionals • Website and Forum development for online support • Flyers and leaflets for breast units • Fundraising merchandise Future: • Documentary development • Information booklet • Development of Regional Groups Building awareness & reputation
Aim: to get our details in front of every woman facing mastectomy surgery
• Up to date posters and • #86 Packs sent out • Networking flyers as packs for #70 sourced from FFUK FB group Breastcare units / BCNs #5 sourced from Trustee breast cancer units Macmillan / other charities referrals • To spread our name Cancer care centres and local #11 sourced from research cancer support groups through the cancer #5 posters spotted in Events e.g. Yorkshire Cancer networks breastcare units 2017 Harrogate Death matters event attended • Credibility through #? people who have been given a flyer Phone calls, cold calling history and background Asking 'who else should I be • Sourcing methods: FFUK, speaking to?‘ • New charities are not internet search, NHS lists, Assoc of Breast Surgeons embraced straight away towns with hospitals, Lymphoedema and Tissue by medical cancer care centres, Viability centres professionals Maggies, Macmillan U.K. Wide or Regional referrals Building awareness & reputation
Case Study Fundraising we can all help with
• Phone call to High Wycombe BCU • Collect postage stamps, printer • Stacey BCN called back, very interested and thanks for cartridges (oem), old mobiles, pack, suggested contacting Sarah, "cancer info girl" at Stoke Mandeville. • Easyfundraising.org.uk link through • Sarah used to be a BCN, loves the sound of what we are doing and would love to help. Packs sent and circulated to shopping in High Wycombe, Stoke Mandeville and Aylesbury • John Lewis, Holiday Cottages, Viator travel, Virgin • Aim for Patient Support Manager rather than clinical Trains, Interflora, Groupon, Premier Inn, team. Ticketmaster, car insurance, house insurance (up to 30% donation), stationery, business travel, • Other contacts: Amazon, Ebay • Maggies is national charity that provides local support • Can raise hundreds, all adds up • Macmillan local facilitator. Yorkshire: Ian Margerison • 300 retailers in the uk • Meeting with Ian, event (Dying Matters in Sheffield) • Speak with Prosthesis companies: Selima, Trulife, Amoena re training for healthcare professional • CancerKin for family history Highlights & Achievements
August 2014 – March 2017 Sarah Coombes, Sarah Dow Eastenders Advisors July 2015: Gilly Cant appeared in Eastenders as Carol Jackson’s Body Double, and promoted the episode, and living flat, on This Morning with actor Lindsey Coulsen. Jan 2017: Kim opens up in The Sun Sept 2015: Sarah shares post- about living with changes to her body mastectomy fashion tips in BCC Vita
Oct 2015: Sally Ann talks about choosing to live flat to That’s Life magazine
March 2017: Kayla discusses life when breast Dec 2016: Gilly talks the cancer returns, , and deciding against flat life to Pool Health reconstruction after bilateral mastectomy
Oct 2016 Penny talks in The Mirror about dating after breast cancer In the News… Oct 2016: Caroline appeared in a photographic project commissioned by the Forward Theatre Project
Nov 2016: Photographer Jai‘s self portraits appear in a Daily Mail article about why she refused reconstruction
Sept 2016: Photographer Sarah‘s self portraits on the theme of surviving physical and emotional change are exhibited in Salisbury. The Wiltshire Times carried an article featuring her cancer story & photographs Sally Ann in the BCC London Fashion Show 2015 Rachel in the BCC Wales Fashion Show 2016 The First Catwalk Queens Tonni, Janine, Karen and Alison shine at the BCC London Fashion Show Catwalk Queens London 2016 Most glamorous FFUKing supporters May 2016: Gilly presents research and discusses the need for patient choice at the Annual Conference for the Association of Breast Surgery
Advocating Campaigns
Flat Friends #allwoman campaign for BCAM 2016 Flat Friends Flatter Fashion
Collaboration launches December 2016 Oct 2015: Carol, Lynn, Fran, Sarah, Gilly, Tracy and Jo joined The Sun newspaper for a photoshoot supporting the Twitter #showyourscar hashtag, following our indignation at M&S ill-judged #showyourstrap campaign
SUN stars… #nostraprequired Calendar Girls
The project was covered by the Wiltshire Times and BBC Radio Wiltshire Channel development…
FB Closed Group 724 Members 369 Followers on Twitter
Website (average monthly audience) 1,800 Page Views 590 Unique Visitors 720 Visit Sessions FB Supporters Page 884 Likes 94 Followers on Instagram Research Collaboration
• We collaborated with Professor Fallowfield, Head of Psychosocial Oncology at SHORE-C, on a survey of patients, surgeons and breast care nurses about their experiences when a breast cancer diagnosis leads to surgery. • This was a ‘proof of concept’ which we hope will inform a much wider study of surgical choices, information provision and decision-making for women facing mastectomy. • The following slides are a brief summary • The full results will be published later this year by Ash Subramanian, Oncoplastic Breast Surgeon, as part of a wider literature review entitled “Mastectomy for ‘prophylaxis’ or ‘symmetry’: best evidence with patient choice – an integrated approach” Not every woman get enough time, advice, or the surgery she wants
Most women have to make a decision within a week of diagnosis, yet only half felt all options were covered, and Only a third felt options discussed were given equal weight
No Advice 47.4% Adapting clothes 6.6% Living flat advice 3.6% Prosthetics Advice 43.8%
Almost half said they were given no advice at all, and what there was was mostly to do with breast forms
30% of women who wanted a bilateral mastectomy didn’t get it
24% of women who wanted the remaining breast removed didn’t get it 71% cancer nurse specialists opted to refer a woman to a psychologist if she wanted a prophylactic mastectomy, but only 15% would do so for reconstruction
Less than 5% of surgeons and 2% of nurse specialists said they would discuss a prophylactic contralateral mastectomy as a way of achieving symmetry
73% of surgeons & 86% of nurse specialists believe reconstruction is gold standard
40% of UK surgeons surveyed would NOT offer a CPBMx under any circumstances
Flat Friends believes in a more balanced discussion that treats every surgical option equally and every woman's choice with respect Devastated, horrified, frightened, patronised Rushed, I was not given the opportunity to say what surgery I really wanted I was given the advice which fitted with their plan, not the best advice for me I was given no choice in my treatment, just told what was going to happen to me
The decision had been made for me, no other options were given to me. In short, I was told what would happen
Very rushed, very poor DVD from the hospital. I basically relied on friends helping me to look on the internet for options
At the time I did as the surgeon recommended, but 10 months later I would have preferred a double mastectomy if possible
I had to agree to WLE initially and then wait for bilateral mastectomy after referral to a psychologist. I would have preferred to have this immediately but was refused
I wish now that I had been given the option of a double mastectomy as I wish I had had one, but at the time, in a rush, I doubt if I would have considered it
Would have preferred to have both breasts removed, feel more of a freak with one boob, was told it was a knee jerk reaction!! – even after I explained being flat would be easier to dress and live with… 30 Projects in progress and in the pipeline Gilly Cant, Sarah Coombes Organisation and development
Charitable Purpose: The relief of women in the UK who have had or may face mastectomy, and who live or are considering living without breast reconstruction, in particular (but not limited to) by providing information, advice, and raising awareness among healthcare professionals and the wider public
STRATEGY AWARENESS & ENGAGEMENT
Guides the strategic management and INFORMATION COMMUNICATION RESEARCH direction of the charity, in line with the charitable purpose and CC commitments NHS breast units SY Public relations Conferences GC SD Individual trustees may lead on specific areas but all trustees remain knowledgeable Local charity partners Content development NHS Pathway groups SD of the issues and sign off on key decisions Written resources SD SC Channel management SD SC Research partners SD Strategic Planning GC SD Clothing advice SC Analytics & feedback SD SC Evidence development SD Brand strategy SD SY Finance GC w/SW SUPPORT Patrons GC Web Forum Policy SC Closed FB group Administrators CJ RF Co-ordinate volunteers
FUNDRAISING Promotions & Events GC SY Corporate partners SY Grants & funding SY Commercial initiatives Online Survey results
• 61% did not know about the closed Facebook Group when they first contacted Flat Friends UK. • 11% joined Facebook just to access the FFUK group. • 80% said they would use a public forum on the FFUK website. • One third ranked ‘General Chat’ as their most important discussion topic, with 28% choosing ‘Treatments’ and 16% choosing ‘Surgery’. • 18% said they had considered leaving the Facebook group, with many saying they wanted to move away from Breast Cancer discussions. Forum development
Hormone Surgery therapies
0
Cancer Clothing treatments
General Lymphoe Genetics Chat dema
Therefore: The Facebook Group will be split into separate discussion groups which will be mirrored in new online forums, including General Chat, Cancer Treatments, Surgery, Genetics, Clothing, Lymphoedema and Hormone Therapies - to allow people to choose which topics they access. These new Discussion Groups and Forums will be launched in the coming months once a team of admins is in place to moderate content. In the pipeline…
• Publication of SHORE-C research • Documentary • Information book • 2nd phase research • Stand at medical conference • Posters & flyers even more widely • Grow the website and forum • Develop regional groups Thank you
And Feedback Forms!