Fair Treatment for the Women of Wales (FTWW)

What we’ve been up to this month… - Fair Treatment for the Women of Wales We’ve had a great month of attending a wide range of events including Cardiff and Vale University Health Board’s Sexual and Reproductive Health and Community event, the Senedd Cross-Party Group on Wom...

FTWW had an incredible July attending events focused on women’s health & wellbeing across Wales — from health boards and the Senedd, to the WOMB Festival 🌸

Catch the full recap here: ftww.org.uk/2025/07/29/j...
#FTWW #WomensHealth #WalesEvents

In case you missed it... 🚨 We’re Hiring! 🚨

Full details in the post and link - feel free to send on to anyone you know who might be interested!

#Jobs #Wales

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.

We at FTWW are so sorry to hear of the death of Hefin David. Our deepest condolences to his family, friends, and Senedd Colleagues.

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.

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.

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)

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.

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.

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.

raphic featuring diverse illustrated women, with the text 'WE ARE HIRING! Volunteer and Community Coordinator' above the FTWW logo and QR code.

📣 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

RCGP Cymru Wales survey poster with a QR code, healthcare images, and the text 'Have your say!' encouraging feedback on GP access.

🗣️ 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

"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.

💪 #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 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'

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 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.

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

July is #FibroidsAwarenessMonth - Meet Carina, our FTWW Fibroids Champion!

Find resources and information here: ftww.org.uk/health-issue...

This opportunity was first shared in our Facebook group - if you are a female patient (or assigned female at birth) living in / accessing healthcare in Wales, please do join us! www.facebook.com/groups/ftww.... - please answer the joining questions and agree to the rules so as we can admit you.

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.

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

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.

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...

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.

#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...

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."

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

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.

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...

Everywoman Festival

HUGE thanks to them for their support, and to the Everywoman organisers for inviting us!

Next year the Everywoman Festival heads to London! Find out more at www.everywomanfest.com

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 ❤️

Everywoman Festival

The @everywomanfestival.bsky.social is tomorrow!

You can find us in the main house all day, and on the 'Empowering Women’s Health: Research, Policy & Change' Panel in the Main Tent at 2pm. We hope to see you there!

More information and tickets here: www.everywomanfest.com

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

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!

As a Disabled People's Organisation (DPO), we are passionate about providing inclusive & accessible opportunities that can fit in with our community's lives and health issues. If you'd like to find out more, visit ftww.org.uk/get-involved/volunteering.
#WythnosGwirfoddolwyr

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.

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!

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

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.... 🌈

Two women, Anna and Molly, are introduced as Menstrual Health Champions in a promotional graphic for FTWW’s Menstrual Health Day 2025 campaign.

Visit our website to find out more about our work, and meet our Menstrual Wellbeing Champions, Anna (Co-founder of Menstrual Health Project) and Molly (Founder of Love Your Period). ftww.org.uk/health-issue...

#MHDay #PeriodFriendlyWorld

Our overall aim is to raise awareness of the importance of menstrual health through #PeriodEducationForAll, and overcome the taboos that surround periods, so that those who need help can access it without barriers.

#MHDay #PeriodFriendlyWorld

Here in Wales, there continues to be a huge lack of awareness and education about menstrual health and wellbeing, which means that many struggle to get the help and support they need.

#MHDay #PeriodFriendlyWorld

A graphic promoting period education for all, featuring menstrual icons, a QR code, and the hashtag #MHDay2025 on a red background.

Today is Menstrual Hygeine Day - or as we prefer to call it, Menstrual Health Day!

Stigma around periods and their impact persists, which can make it very difficult to understand what’s 'normal' and when we need to seek support or medical advice.

#MHDay #PeriodFriendlyWorld

Graphic with the text: "P.S. Today is also Menstrual Hygiene Day! Keep following for more posts! #MHDay25" and FTWW logo at the top

Today is also Menstrual Hygeine Day - we'll be posting more on that later!

You can find out more about the day, our manifesto, and our website, at ftww.org.uk/news-and-blog/

#MHDay25