Fair Treatment for the Women of Wales (FTWW)
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ftww.bsky.social
Fair Treatment for the Women of Wales (FTWW)
@ftww.bsky.social
260 followers 470 following 130 posts
The only patient-led charity in Wales dedicated to achieving health equality for women, girls, and people assigned female at birth. We Chair the #WomensHealthWales Coalition. Disabled People's Organisation.
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ftww.bsky.social
#PolycysticOvarianSyndrome (PCOS) Awareness Month

#PCOS affects 1 in 8 women and people AFAB in the UK - many go undiagnosed.

FTWW is calling for better awareness, joined-up care, and investment in research to improve lives in Wales.

Learn more and explore support: ftww.org.uk/health-issues/pcos
To the left of a photo of Rachel, a white woman with long blonde hair, text reads: "Meet Rachel, FTWW’s PCOS Volunteer Champion." Followed by a quote from Rachel: “There are still a lot of assumptions around the associated symptoms of PCOS, for example weight gain or obesity, acne, excessive hair growth to name a few. However, for myself and I imagine many, many others, these symptoms were not applicable in my case, and I believe this stereotype of linking PCOS to these more 'common' symptoms led to the long delays in my diagnosis. More needs to be done to bring in a more inclusive approach to testing and diagnosis of PCOS and not basing diagnosis off just symptoms alone.” Text reads: "Our Work in Wales: We raise awareness through events, media, training and fundraising. We engage directly with policy makers and researchers - We ensured PCOS featured in the Women’s Health Wales Coalition’s report to the Welsh Government ahead of the publication of the NHS Wales 10-year Women’s Health Plan. We're also working with the Verity PCOS charity and Cardiff University on a James Lind Alliance Research Priority-Setting Partnership which aims to identify the most pressing issues, uncertainties, and areas where research is needed for PCOS patients across the UK, including Wales." A graphic featuring an illustration of diverse individuals gathered together, with the title “Polycystic Ovary Syndrome: A Call to Action.” Above the illustration, text reads: "On behalf of FTWW, Volunteer Zoe recently attended the UK All-Party Parliamentary Group (APPG) on PCOS’s launch of their report at the Houses of Parliament. The launch brought together parliamentarians, clinicians, patient advocates, charities, NHS leaders and policymakers to highlight the urgent need for reform in PCOS diagnosis, treatment and long-term care. The report sets out ten clear recommendations to reduce diagnostic delays, integrate care, expand mental health support and strengthen clinical training and public awareness. Diolch o galon, Zoe!" Text reads: "Find out more about PCOS and what we’re calling for on our website: ftww.org.uk/health-issues/pcos" Below it is a screenshot of the PCOS page on the FTWW website alongside the FTWW logo.
September 25, 2025 at 11:58 AM
ftww.bsky.social
Has #IUD #PainRelief improved since 2021? FTWW Champion, Lucy, is gathering real-life experiences - if you’ve experienced this, please take the survey & share!
🔗 www.surveymonkey.com/r/HXPJ8DR

Looking for info & support? Check out our website
🔗 ftww.org.uk/health-issue...

#ReproductiveHealth
A green background frames a white notepad-style paper in the center. At the top, there's a photo of a pink IUD next to Scrabble tiles spelling "IUD." Below, bold text asks: "Has IUD pain relief improved since 2021?" with a red button that reads "TAKE THE SURVEY." At the bottom is the FTWW logo. Dried flowers and two sparkles decorate the left side of the image.
September 11, 2025 at 2:41 PM
ftww.bsky.social
Applications for our Volunteer & Community Coordinator role have now closed. We received over 150 applications! So shortlisting is taking a little longer than expected, as we review every application thoroughly. We aim to reply to all applicants by the end of September - diolch for your patience!
Graphic announcing a recruitment update for the role of "Volunteer & Community Coordinator." The background features abstract pastel illustrations of people, with wavy green and red lines on either side, and the FTWW logo at the bottom.
September 9, 2025 at 12:57 PM
ftww.bsky.social
We're delighted to share details of an upcoming #WomensHealth Symposium taking place at @bangoruniversity.bsky.social!

If you would like to attend, please contact Dr. Sophie Harrison by emailing s.harrison@bangor.ac.uk to register your space.

#HealthResearch #GenderHealthGap
September 3, 2025 at 1:20 PM
ftww.bsky.social
🎙️ We spoke to BBC Radio #Wales about why menstrual leave matters for those with #endometriosis & #adenomyosis - and how existing legislation should already support it but often fails. FTWW backs the petition on this and urges MPs to act. Listen + info: ftww.org.uk/2025/08/22/t...

#MenstrualHealth
A woman with red hair sits at a desk, speaking on the phone while looking at a computer monitor. Above her is the FTWW logo showing three figures holding hands over grass roots. Below the desk, a banner reads 'The Menstrual Leave Petition: Our View.' The bottom of the image displays the URL: ftww.org.uk/news. The background features abstract green and orange shapes.
August 22, 2025 at 11:12 AM
ftww.bsky.social
Help shape the future of #PCOS research! We’re working with patients & experts to identify the top 10 priorities for #PCOSResearch in the UK.

🔗 Take the Survey: www.verity-pcos.org.uk/jlapcos.html

📣 Please help us get as many voices heard as possible and share this post #JLAPCOS
A purple infographic titled “Can you help us shortlist the top PCOS research topics?” encourages participation in a survey. It emphasises the importance of lived experience in shaping research priorities. A checklist shows progress: “Form steering group,” “Launch 1st survey,” “Sort 1000+ responses,” and “Check against evidence” are ticked off. “Launch 2nd survey” is highlighted, followed by “Shortlist responses,” “Prioritisation workshop,” and “Publish Top 10.” A QR code labeled “Scan me” and a clock icon with “10 min” and “Take the survey” invite action. The hashtag #JLAPCOS and logos of supporting organisations, including Verity, Cardiff University, Cysters, FTWW, and PCOS Vitality, appear at the bottom.
August 19, 2025 at 10:44 AM
ftww.bsky.social
We at FTWW are so sorry to hear of the death of Hefin David. Our deepest condolences to his family, friends, and Senedd Colleagues.
All of us at FTWW are incredibly sad to hear of the death of Hefin David MS. In his work as the Long Covid Cross Party Group Chair and as Member of the Autism Cross Party Group, Hefin was kind, compassionate, and a champion, regularly amplifying lived experiences to his colleagues in the Senedd. Our thoughts go out to Hefin’s family, friends, and Senedd colleagues. He will be missed.
August 13, 2025 at 1:25 PM
ftww.bsky.social
We hope that the days of dismissing this cruel illness will be confined to the past, and that further research, treatment options and cures will be developed in the future.

Visit ftww.org.uk/health-issue... for more info about ME, and be sure to follow our friends at @wamesmecfs.bsky.social too.
Find out more about ME on our website, where you’ll also find a downloadable bilingual information leaflet, and signposts to support available. A QR code has been added to the page, linking to the website.
August 8, 2025 at 12:21 PM
ftww.bsky.social
As part of #SevereMEWeek, we are cautiously optimistic that we may finally be turning a corner and have hope for the future.

@decodemestudy.bsky.social has published findings from their research, and WorldMEAlliance has released vital guidance to clinicians.
Eight genetic signals have been identified. As DNA doesn’t change with ME/CFS onset, these findings reflect causes rather than effects of ME/CFS. The signals discovered are involved in the immune and the nervous systems, indicating immunological and neurological causes to this poorly understood disease. At least two of the signals relate to the body’s response to infection. Other signals point to the nervous system, one of which researchers previously found in people experiencing chronic pain, reinforcing neurological contributions to ME/CFS. These signals align with how people with ME/CFS describe their illness. “Most of us with ME have had our symptoms and experiences minimised, dismissed, and questioned, by medical professionals, employers, and even those close to us. I personally feel vindicated and hopeful for future developments in diagnostic tests, treatments, and cures (which currently don't exist). Any doubters can now have this research put in front of them.” Dee - FTWW Engagement Coordinator and Volunteer ME Champion The World ME Alliance has also published new vital guidance for clinicians, designed to support self-advocacy when people with Severe ME may be too unwell to speak for themselves, and to guide healthcare professionals toward safer, more appropriate care. (a screenshot of the document)
August 8, 2025 at 12:21 PM
ftww.bsky.social
Today is #SevereMEDay, where we remember those we have died from severe ME and to advocate for better understanding, research, and support for those living with this debilitating condition.

Our thoughts are with them, and their loved ones left behind.
Severe ME Awareness Week Remembering those we have lost, and sharing glimmers of hope for the future... Living with Severe ME About 25% of Myalgic Encephalomyelitis (ME) patients will be severely disabled. They might be: housebound and bedbound 24/7 Unable to sit up in bed much or at all Unable to tolerate light or sounds, and have to stay in dark rooms with eye masks and ear protection In need of 24 hour care Unable to eat or drink, and need to be tube-fed Louise's story: “I am bedridden in a dark room for weeks on end. It's not something one can easily describe, but I do appreciate when people try to understand. Remember that ME is not tiredness - nothing can portray the complete annihilation of energy we experience and the effect that has on daily life. Last week I was physically struggling to swallow food. Many struggle with basic tasks like brushing teeth. I can't engage in my usual hobbies. But, there is always hope, and simple understanding and accommodations can make all the difference in the world.” Next to the story is a photo of Louise, a white person with shaved hair, smiling gently to the camera. Speaking of hope, Decode ME’s Initial DNA study results have been published. Intial findings show: Your genes contribute to your chances of developing ME/CFS. People with an ME/CFS diagnosis have significant genetic differences in their DNA compared to the general population.
August 8, 2025 at 12:21 PM
ftww.bsky.social
📣 Please spread the word!

Volunteer & Community Coordinator:
🏡 Home-based (Wales)
🕒 Full-time or part-time/job share
💷 £30,000 + £312/year WFH payment
📅 Funded to 31 Mar 2027 (possible extension)

💜 Passionate about community? Apply now! ftww.org.uk/job/voluntee...

#Hiring #WalesJobs #Cymru #Jobs
raphic featuring diverse illustrated women, with the text 'WE ARE HIRING! Volunteer and Community Coordinator' above the FTWW logo and QR code.
August 5, 2025 at 1:48 PM
ftww.bsky.social
🗣️ Have your say!
#RCGPCymruWales wants to hear from you about your experiences accessing your GP.
💬 Share your views and help shape future services.
👥 You can also express interest in joining the RCGP #Cymru #Wales Patient Forum!

📋 Take the survey here: forms.office.com/e/EdvU50bgkC

#PrimaryCare
RCGP Cymru Wales survey poster with a QR code, healthcare images, and the text 'Have your say!' encouraging feedback on GP access.
August 1, 2025 at 11:37 AM
ftww.bsky.social
💪 #DisabilityPrideMonth isn’t just a celebration, it’s a protest! Like so many of the health issues we campaign on, advocacy is needed all year round.

👉 Read our latest blog to find out how we’re fighting for better health and rights for all: ftww.org.uk/2025/07/29/d...

#WomensHealth #Disability
"A smartphone displays a blog post titled 'Disability Pride & Women's Health' by FTWW. The background features the disability pride flag. To the right of the phone, bold text reads 'Disability Pride Month: Read our blog.' In the bottom right corner is the FTWW logo.
July 31, 2025 at 11:13 AM
ftww.bsky.social
Our monthly newsletter is out tomorrow!

We'll be sharing updates on what we've been up to this month, media coverage, exciting #WomensHealth research updates and opportunities, and more!

Read last month's edition (+ previous issues) and subscribe here: mailchi.mp/d0c8ff56c9aa...
A screenshot of the bilingual newsletter from FTWW featuring updates on Volunteers' Week, Everywoman Festival, PMDD info for NHS Wales, and more. Includes a photo of volunteers holding signs, a thank-you message, and a QR code with the text 'Read all about it'
July 30, 2025 at 2:43 PM
ftww.bsky.social
We have another opportunity to help shape research on decision making about stopping #HRT, by completing this very short survey:

cardiffunipsych.eu.qualtrics.com/jfe/form/SV_...

Please feel free to share with anyone you know who may be interested. Diolch!

#Menopause
A vibrant announcement with a watercolor background invites individuals to share their experiences with hormone replacement therapy (HRT) for menopause. It asks if they have stopped, considered stopping, or decided to continue HRT, and encourages participation in shaping healthcare research in Wales. The deadline to respond is August 18th. Logos of Cardiff University and FTWW appear in the bottom left corner, with an illustration of three people on the right.
July 21, 2025 at 11:38 AM
ftww.bsky.social
July is #FibroidsAwarenessMonth - Meet Carina, our FTWW Fibroids Champion!

Find resources and information here: ftww.org.uk/health-issue...
July 17, 2025 at 1:09 PM
ftww.bsky.social
The first of our drop-in stakeholder sessions to discuss the Women’s Health Hubs project within Betsi Cadwaladr took place today, but don't worry if you missed out! Three more sessions are due to take place - find out more on our website:
ftww.org.uk/2025/07/16/b...

#WomensHealth
A social media graphic with a pink background featuring a message box that reads: “FTWW – North Wales! There’s still time to tell BCUHB’s Women’s Health Clinical Lead about your experiences! Don’t miss out – visit ftww.org.uk/news to find out more…” Below is the cover image of the NHS Wales Women’s Health Plan 2025–2035, showing a blended portrait of five diverse women. Logos for NHS Wales, Betsi Cadwaladr University Health Board, and FTWW (Fair Treatment for the Women of Wales) appear at the bottom.
July 16, 2025 at 1:53 PM
ftww.bsky.social
We're delighted to be attending the WOMB cic Summer Festival on Saturday 26th July!

Find out more here: ftww.org.uk/event/womb-s...
Poster for "WOMB Summer Festival" on Saturday 26th July 2025, 10 AM to 5 PM at Grange Pavilion, Cardiff. Tagline: “A celebration of menstruality, maternity and menopause.” Visuals include mirrored images of women breastfeeding and embracing themselves, surrounded by sunflowers and purple flowers. Themes listed: Cyclical Living, Matricentric, Ecofeminist. Activities include ceremony, talks, workshops, crafts, family fun, food, and art. Logos for supporting partners: National Lottery Community Fund, Leigh Day, Holland & Barrett, Bawso, The Birth Partner Project, and EYST. Website: wombcic.co.uk/festival.
July 14, 2025 at 1:46 PM
ftww.bsky.social
#WelfareBill Concessions – FTWW Statement - Please Share!

As a member org. of @disabilitywales.bsky.social, FTWW supports their statement. You can find our full statement on our website - as well as a link to a template letter to MPs from @dpac-cymru.bsky.social - here: ftww.org.uk/2025/06/27/w...
A green and white graphic from FTWW featuring a stylized logo of three figures holding a scale over a campfire. The bold text reads "STATEMENT: Welfare Bill Concessions." A black-and-white halftone megaphone with red sound lines is on the left. A large QR code is centered on the right side, and the website "ftww.org.uk" appears at the bottom in a rectangular banner.
June 27, 2025 at 1:42 PM
ftww.bsky.social
Many in the FTWW community have been part of the @epev.bsky.social programme in the past and speak very highly of it. If you want to get more involved in public and political life in Wales but you're unsure of where to start, Equal Power Equal Voice is for you!

Find out more and apply: epev.cymru
Promotional image for the "Equal Power Equal Voice" (EPEV) programme. At the top, the logo and bilingual title are displayed: "Pwer Cyfartal Llais Cyfartal / Equal Power Equal Voice" in white and orange text on a dark purple background. Below is a circular photo of a smiling woman named Sara, standing in front of an EPEV-branded backdrop with colorful balloons. Underneath her photo is a quote in an orange text box: "If you’re thinking about the EPEV programme, do it. This course will teach you about politics, society and most importantly, about yourself. And when our political spaces reflect the people they serve, Wales will be all the stronger for it - Sara."
June 27, 2025 at 10:42 AM
ftww.bsky.social
The ESTEEM study team is conducting a project to develop a measure of the costs related to having menopausal symptoms for use in the ESTEEM trial, which is looking at the use of testosterone when added to hormone replacement therapy (HRT).

Find out more here: ftww.org.uk/2025/06/19/e...
A diverse group of women is shown under the text: “Are you taking HRT and still experiencing menopause symptoms?” with FTWW and ESTEEM study logos above.
June 19, 2025 at 3:20 PM
ftww.bsky.social
10 days since @everywomanfestival.bsky.social!

We were thrilled to be invited to take to the main stage at this year’s festival. Dee was part of the Empowering Women’s Health: Research, Policy & Change panel, and our fantastic volunteers did an impeccable job of running our information stand ❤️
June 17, 2025 at 1:04 PM
ftww.bsky.social
Let's celebrate a huge win for our #PreMenstrualDysphoricDisorder Champions this #VolunteersWeek!

Congratulations, @becci-smart.bsky.social & Laura - #PMDD and #PME are now included on the NHS 111 #Wales Website: 111.wales.nhs.uk/encyclopaedi...

Diolch o galon, Becci, Laura, & NHS 111 Wales team!
Our huge congratulations and thanks to FTWW Pre Menstrual Dysphoric Disorder (PMDD) Volunteer Champions, Becci and Laura - thanks to their months of hard work, PMDD & PME now have their own page on the NHS Wales 111 website! a screenshot of the NHS Wales 111 website's PMDD page
June 2, 2025 at 4:25 PM
ftww.bsky.social
It's #VolunteersWeek!
Here's a thank you card for all of our volunteers, featuring just some of our Volunteer Champions!
We are so lucky to have nearly 100 volunteers who bring so much to FTWW. Without them we wouldn’t be able to do what we do - especially as such a tiny staff team! Diolch o galon!
A collage of volunteers' portraits surrounds a central thank you message for FTWW volunteers, with colorful hand graphics and a #VolunteersWeek banner at the bottom.
June 2, 2025 at 12:34 PM
ftww.bsky.social
Happy #PrideMonth! Many in our community are also part of the LGBTQIA+ community - you are safe with us ❤️

If you need support with your healthcare journey, please do feel free to join our Facebook group: www.facebook.com/groups/ftww.... 🌈
Happy Pride Month from all of us at FTWW! We are committed to being inclusive and welcoming to all LGBTQIA+ people who need us. Intersectionality is vital in improving health services and removing inequity experienced by marginalised groups. As stated in our Vision, we want to see a Wales where everybody’s right to good health and wellbeing is respected and fulfilled, with everyone able to access the healthcare they need, when they need it, and without barriers. Find out more about FTWW and our work on our website. ftww.org.uk/about-us
June 2, 2025 at 12:04 PM