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Update from the Welsh Government’s Ministerial Disability Rights Taskforce

September 26, 2023

We’re delighted to bring you an update from the Disability Rights Taskforce, in which FTWW and our volunteers regularly participate. The Taskforce sends a big thank you to members of the working groups which have now concluded their deliberations, all of which have been Chaired by people with their own lived experience of disability. The working groups saw people with lived experience and expertise, disabled people’s organisations, and Welsh Government policy leads coming together to hear about the things that are important to disabled and chronically ill people and to think about how to remove barriers affecting their lives. Recommendations…

Female health and Endometriosis: Read our blogs for The Welsh Fabians

September 22, 2023

We were delighted to be asked to write two blogs for The Welsh Fabians, part of The Fabian Society, which is an independent left-leaning think tank and a democratic membership society with over 7,000 members. They influence political and public thinking and provide a space for broad and open-minded debate. They also publish insight, analysis and opinion; conduct research and undertake major policy inquiries; convene conferences, speaker meetings and roundtables; and facilitate member debate and activism across the UK. For our first blog, In ‘The Land of Our Fathers’, is Women’s Health a Poor Relation?, we discuss female health inequalities…

Becci is a white woman with short red and orange dyed hair. She is sat in her kitchen speaking to a reporter who is off camera.

PMDD: Becci Launches Petition

August 21, 2023

FTWW members and PMDD Champions, Becci and Laura, featured on BBC Radio Wales Breakfast regarding Becci’s Senedd Petition to improve care for the condition (1.35.00 on). Becci also talked to BBC Wales News Online and BBC Wales Today. ITV’s This Morning programme also highlighted the campaign, and discussed PMDD in more detail, to help viewers understand symptoms. Watch here (from the 3.25 mark). Becci is calling for PMDD (Premenstrual Dysphoric Disorder) to be part of core teaching for healthcare professionals in Wales, as the condition is so misunderstood and under-recognised. Please sign and share her petition, here.

Experts call for urgent mental health support for people living with long term autoimmune diseases

August 18, 2023

A new study has highlighted the shocking mismatch of clinician and patients experiences of neurological and mental health issues in people with autoimmune rheumatological conditions. More than half of patients with auto-immune conditions experience mental health conditions such as depression or anxiety, yet the majority are rarely or never asked in clinic about mental health symptoms, according to new research from the University of Cambridge and King’s College London. Read more, here.

Focus on Menopause: #Flushfest23 and the second All-Wales Menopause Conference

August 17, 2023

Join #FlushFest23 in Edinburgh or online on 8 and 9 September, for a festival full of menopause advice, fun, storytelling, wellbeing workshops and much more. See the full programme and buy tickets here. We’d also like to remind you that the second All-Wales Menopause Conference takes place in November. This one is also hybrid, and will welcome renowned national and international speakers, shining a light on topics such as menopause and cardiovascular, bone, and mental health, menopause in the workplace, and the role of testosterone. FTWW is pleased to be facilitating the involvement of expert patients. Find more information and buy…

Llais: First 100 Days

August 16, 2023

Since April 2023 the people of Wales have had a new independent body to help shape health and social care services. Llais has been set up by the Welsh Government to raise the power and influence of the voices of people living in Wales, and we regularly recommend them to members of our community who feel a struggle to be heard. FTWW is delighted to be having regular meetings with them to discuss ‘all things women’s health’. In the meantime, you can read about their first 100 days, here.

The Disability Pride flag. A black background with red, yellow, white, blue and green stripes moving diagonally from top left to bottom right.

Disability Pride – is disability something to be ‘proud’ of? We say, ‘yes’ – and here’s why.

July 31, 2023

Disability Pride Month was born in the USA in 1990, when the Americans with Disabilities Act (ADA) was passed to prevent discrimination against disabled people. It is now a global act of celebration – and an act of protest: the first Disability Pride Parade in the UK took place in Brighton in 2016. Disability Pride Month exists to change the way people think about and define disability (and, yes, that can also include people living with chronic and recurrent health conditions)! It also aims to end the internalised ableism experienced by many disabled people, and to promote the knowledge across…

Endometriosis.Cymru Update

July 14, 2023

FTWW is excited to be working with colleagues in Cardiff University and Proper Design to expand and update the Welsh Government and NHS-funded Endometriosis Cymru website. We’ll be developing information about Wales’s endometriosis services, the social model of disability, and how to access further support outside of healthcare settings, as well as ensuring that the website is accessible and available in an Easy Read format. Watch this space for further updates and involvement opportunities!

A picture of an intrauterine device (IUD), otherwise known as the coil

The BMJ: Intrauterine devices (IUDs) and pain

July 10, 2023

The BMJ Opinion: We must validate the painful experiences of many women using intrauterine devices FTWW volunteer, Lucy, and the Women’s Health Coalition were mentioned in an Opinion Piece featured in the British Medical Journal (BMJ) about the need to address women’s experiences of pain, trauma, and lack of informed consent when having minor gynae procedures. The article, written by Stephanie O’Donohue from Patient Safety Learning, responds to Davina McCall’s documentary Pill Revolution, which Stephanie argues missed an opportunity to validate painful experiences of intrauterine devices and promote better practice. Read more here.

The webinar flyer, showing details and FTWW and FNUK logos, as well as an illustration of people holding hands.

Watch our Webinar: Getting the Most from Your Medical Appointments

June 29, 2023

We were really pleased to co-host this event with Fertility Network UK Cymru on June 19th. We were joined by FTWW member and Hormone & Mindset Coach, Laura Teare-Jones, who offered practical tips on how to prepare for healthcare appointments. Alongside her was Angela Mutlow, from Llais, an independent statutory body set up by the Welsh Government both to provide support to those wishing to make a complaint about their care and to give the people of Wales much more say in the planning and delivery of health and care services. Whether you are on a fertility journey or not, we are sure you…

Every Woman Festival Recap!

June 26, 2023

We’d like to say a HUGE thank you to Julie Cornish and The Every Woman Festival team for such a fantastic event in Cardiff on Saturday! It was empowering, emotive and informative; seeing so many people coming together to discuss female health, share information and support each other was just brilliant. Thank you so much for inviting us to be part of it. Dee spoke on the main stage about her experiences with endometriosis and adenomyosis, alongside two incredible women; Molly Fenton, founder of The Love Your Period Campaign, and Bethan Walters, a UN advocate for menstrual health and…

Beth hands in the petition to the Senedd with Jenny Rathbone MS, supportive MSes and FTWWers

Don’t Delay, Vote Now! Endometriosis Petition to the Senedd Shortlisted for Petition of the Year

June 20, 2023

This month, voting opened on the Senedd’s Petition of the Year competition to recognise and celebrate the contribution of campaigners in Wales. FTWW is delighted to see that of volunteer, Beth, amongst the five notable petitions shortlisted by the Petitions Committee. The public is now being asked to vote for the one that has had the most impact on the people of Wales – closing date is 30th June. You can vote for Beth’s petition, ‘Improving Endometriosis Healthcare’ here.

A photo of Sam Skelton, a white woman with black curly hair.

Marie Curie Gender and End of Life Care report published

May 26, 2023

FTWW thanks Marie Curie for its report into gender differences at end of life across Wales, which includes a powerful foreword from FTWW Member, Sam Skelton (pictured). The report’s top recommendation is that findings are considered in any life course Women’s Health Plan for Wales – a recommendation that FTWW supports. Find out more and read the report, here.

Dee speaking at the Rosa event

Happy Birthday, Rosa!

May 25, 2023

We were honoured to be invited to the 15th anniversary celebrations of one of our key funders, Rosa, where Dee was one of the speakers. Rosa is a grant-making charity that resources specialist women’s and girls’ organisations across the UK, and Dee spoke about the positive impact Rosa’s funding has had on FTWW since we were established back in 2014. It was fantastic to meet so many other people who are working to support and empower women and people assigned female at birth across the UK. Find out more about Rosa, here.

Dee Dickens

Mental Health Inequalities debate in the Senedd

May 9, 2023

FTWW was pleased to support members to participate in the Advisory Group and attend the debate as audience members. The Advisory Group continues to hold the Government to account, with FTWW Trustee, Dee Dickens (pictured), quoted in a BBC report about the debate, which you can read here.

A shot of a group of people's hands on top of each other

Welcome Our New Trustees!

April 28, 2023

Last year we advertised FTWW Trustee roles and received so many excellent applications, which led to a very challenging shortlisting process, but we are delighted to welcome seven new trustees to the FTWW Board. We genuinely felt that we could have recruited every single applicant shortlisted, and we’d like to thank all who took the time to apply. Meet our new trustees here.

Every Woman: A Women's Health Festival

FTWW at The Every Woman Festival

April 28, 2023

We are delighted to be speaking at the Every Woman Festival, taking place at Insole Court in Cardiff on Saturday 24th. Hosted by Julie Cornish, the event seeks to empower and support women, and those assigned female at birth, on health topics that may be difficult or considered taboo to talk about. Dee will be delivering a talk entitled ‘Endometriosis and Adenomyosis: Yes, I have tried Yoga; No, it’s not all in my head! How learning from experts by experience can improve diagnostic delay’. Find out more and book tickets here.

PMDD in Wales - What's Occurin'?

PMDD Awareness Month: What’s Occurin’ in Wales

April 28, 2023

April is PMDD (premenstrual dysphoric disorder) Awareness Month, and we were invited to speak at an event hosted by IAPMD to highlight developments in Wales, not least around the Women’s Health Wales Coalition and the Welsh Government’s Women & Girls’ Health Plan. We were also delighted to hear more from volunteers Becci Smart, who discussed her awareness event at The Senedd, and Laura Teare-Jones, who talked about raising awareness at her networking event. You can watch What’s Occurin’, here. Becci, Laura and FTWW member, Amy-Leigh, were also featured in an article for Wales Online, which also included a spokesperson quote from…

Jacob completes his challenge

Diolch, Jacob and Harriet!

April 28, 2023

FTWW Volunteer, Harriet Jones, who also runs the @apaininthepelvis Instagram account, was recently invited to talk about Endometriosis by abigo mboke, creator of The Waiting List podcast. They discussed life with endometriosis and why it’s important to be inclusive, as well as the symptoms and temporary ways of managing them. Listen to the episode here. Speaking of Harriet, we would like to say a huge thank you to her and her partner Jacob Law, who set a huge personal challenge to run 100km during March as part of Endometriosis Action Month, raising money for FTWW and Barbados Association of Endometriosis and PCOS. Not…

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