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FTWW Responds to Health Minister’s Comments on Lupus Report

November 8, 2021

On Wednesday 3rd November, Mark Isherwood MS submitted a plenary question to the Senedd asking “How is the Welsh Government supporting people with autoimmune diseases?” (OQ57098). Mr Isherwood, who is Chair of the Cross Party Group (CPG) for Disability, followed up with a longer question referencing FTWW’s report, Making the Case for Better Lupus and Rare Autoimmune Disease Care, which you can watch here: Patients with diseases like #lupus, #vasculitis, #Sjögren‘s and #scleroderma are missing out on better care in Wales.@MarkIsherwood is right to ask the Welsh Government to improve care for patients living with these conditons. pic.twitter.com/yz6pN28MzD — RAIRDA…

Help Us Help You – while you shop! Donate to FTWW via AmazonSmile

October 29, 2021

We’re delighted to let you know that you can now support FTWW via AmazonSmile! AmazonSmile is a simple and automatic way for you to support us every time you shop, at no cost to you. AmazonSmile is available at smile.amazon.co.uk on your web browser and can be activated in the Amazon Shopping App for iOS and Android phones. When you shop with AmazonSmile, you’ll find the exact same low prices, vast selection and convenient shopping experience as amazon.co.uk, with the added bonus that AmazonSmile will donate a portion of the purchase price to us. It really is that simple! You…

Wendy, a white woman with blonde shoulder length hair is smiling at the camera for a selfie. She is wearing a grey and black top and black rimmed glasses, and is in front of a multi-coloured stained glass window.

Making the Case for Better Lupus and Rare Autoimmune Disease Provision for Patients in Wales

October 22, 2021

FTWW Calls for Better Lupus and Rare Autoimmune Disease Provision for Patients in Wales This Lupus Awareness Month, the patient-led women’s health equality charity makes 21 recommendations to Welsh Government in new report Fair Treatment for the Women of Wales (FTWW) has today published a new report which calls on Welsh Government to improve care for patients living with Lupus and Rare Autoimmune Rheumatic Diseases (RAIRDs). ‘Making the Case for Better Lupus and Rare Autoimmune Disease Provision for Patients in Wales’ highlights issues around diagnostic delays, lack of specialist care in Wales, barriers to tertiary care, and issues in general…

A selfie of Jessica, a white woman with dark hair, with her partner, a white man with dark and silver hair, and their son, a toddler with blond hair wearing a grey long-sleeved top. Jessica's partner is holding their son, who rests his right hand on his Dad's shoulder. They are all smiling at the camera, and look very happy.

Jessica Nominated for Chwarae Teg Award

September 30, 2021

We are absolutely delighted that our Recurrent Miscarriage Campaign Lead, Jessica Evans, is a finalist at this year’s Chwarae Teg Womenspire awards, shortlisted in the Community Campion category. Jessica has campaigned tirelessly for families experiencing the heartbreak of miscarriage, producing the ‘Making the Case for Better Miscarriage Care in Wales’ report, and liaising with health boards and charities to improve care and support for patients across Wales. We are incredibly proud of Jessica for the work she has done whilst experiencing her own losses. The Womenspire awards take place online on Thursday 30 September. We’re sure you’ll all join…

a screengrab from a BBC Breakfast report. Dee, a white woman with dark hair wearing a blue floral dress, sits with the Newport Transporter Bridge in the background. She's not looking at the camera - she's speaking to the reporter who is out of shot.

Opinion: Engage Britain – Why we must be able to critique the NHS

September 16, 2021

By Dee Montague, Engagement Officer at FTWW Earlier this year, FTWW facilitated two focus groups as part of Engage Britain’s community conversations around health and social care. Our conversations were two of 101 held across Great Britain, looking to find out more about people’s positive – and negative – experiences of health and social services. One of our groups focused entirely on endometriosis, and the second had a general ‘women’s health’ focus. As part of the publicity around Engage Britain’s conversations and subsequent survey results, I was asked to be a case study for the BBC coverage, and was interviewed…

Endometriosis Care in Wales is at Crisis Point

August 10, 2021

Since FTWW first came into being at the end of 2014, we have campaigned for better endometriosis care in Wales. This was made very clear in the 2018 report we co-produced with Welsh Government’s all-Wales Endometriosis Task & Finish Group. Right now, however, endometriosis provision throughout Wales is at crisis point. There are no endometriosis specialists in Mid or North Wales (although work is underway to improve provision in the latter), and access to specialists in England or Cardiff is not easily achieved. The two remaining endometriosis specialists in Cardiff are becoming increasingly inaccessible, with NHS waiting lists for surgery…

Bloody Brilliant is Launched

August 6, 2021

We are delighted that ‘Bloody Brilliant’, an online period health resource created by the young people of Wales for the young people of Wales, is live and on social media. Bloody Brilliant is delivered by Welsh Government and the WHIG (Women’s Health Implementation Group), NHS Wales and Social Change UK, with the ultimate aim of empowering young people so that they feel able to speak openly about periods, understand what’s normal and when to seek medical help – and to support others to do so. Many of FTWW’s members have experience of gynaecological heath conditions like endometriosis, adenomyosis, PCOS, PMDD,…

Menstrual Wellbeing Education in Wales – The Campaign Continues

December 23, 2020

On December 15th in the Senedd, Members of our Welsh Parliament debated the new Curriculum & Assessment (Wales) Bill. One third of those in attendance spoke out in support of FTWW and Endometriosis UK’s calls for mandatory Menstrual Wellbeing Education. It is absolutely vital that all young people, regardless of gender, understand what is happening to their bodies as they go through puberty, and recognise what constitutes a ‘normal’ menstrual cycle, so they know when and how to seek help if something isn’t right. Without this knowledge, young people will continue to suffer in silence, without access to the help…

Outrage at Welsh Government’s Failure to Make Menstrual Education Mandatory

December 7, 2020

After months of collecting evidence, including that provided by FTWW, Endometriosis UK, and many other individuals, on Friday afternoon, Welsh Parliament’s Children, Young People and Education Committee (CYPE) published its report on the Curriculum and Assessment (Wales) Bill. You can read the report in full here. Unacceptably, the CYPE Committee chose to back the Education Minister’s decision that schools should have the ‘flexibility’ to choose whether to cover Menstrual Wellbeing or not, instead of standing by a commitment to mandatory teaching on the subject given by Members of the Senedd earlier in the year. Part of a unanimously passed motion…

Manifesto 2021: Make Women’s Health a Priority in Wales

November 11, 2020

FTWW has just published its new Manifesto which is being sent to all political parties and candidates in the run-up to 2021’s Senedd elections. Our Manifesto is based on the discussions held by our members in a series of online Focus Groups held in October 2020. Our sincerest gratitude to all of those involved, including Rosa: the UK Fund for Women and Girls, for its support in making this manifesto a reality. To read the manifesto in full, or the one-page brief, please select from the links below: Manifesto 2021: Five Wants Manifesto 2021 complete Maniffesto 2021: Pump Eisiau Maniffesto…

FTWW’s Focus Groups

October 27, 2020

FTWW invited members from our online forum to participate in a series of focus groups that were held online between the 7th and 12th of October. The particpants in each session were asked to share their views regarding: Women’s Health-Related Priorities The future of FTWW Developing local peer support and involvement in health services within the different localities in Wales. The 90-minute sessions didn’t quite seem long enough to discuss everything. Everyone attending was given time to share their suggestions and their stories, and we were able to see themes emerging on the work that still needs to be done….

UK Government’s All-Party Parliamentary Group for Endometriosis Launches Ground-breaking Report

October 21, 2020

Yesterday (October 20th) marked a significant day for endometriosis patients across the UK. Westminster Government’s All-Party Parliamentary Group (APPG) for Endometriosis launched its report into the experiences of the 1 in 10 affected, a report which incorporated the views of over 10,000 respondents. The findings were shocking but, sadly, not surprising: diagnostic delays, treatment, and outcomes have not improved in over a decade. According to the report, in Wales, the diagnostic delay now averages 9 years – the worst out of all 4 UK nations. Prior to Covid, one third of endometriosis patients in Wales were waiting over 10 months for their operations,…

Endometriosis debated in the Senedd

October 20, 2020

On October 14th, FTWW was delighted to see endometriosis debated in the Senedd and to be approached to provide crucial data for those leading it. Jenny Rathbone MS, Chair of the Cross-Party Group for Women’s Health, proposed that the Senedd should: Recognise the devastating impact of endometriosis for the 1 in 10 affected and beyond Note the extended diagnostic delay and number of GP appointments required in Wales to get that diagnosis Make menstrual wellbeing education mandatory for all pupils Ensure that more endometriosis specialists are trained and accessible to patients across Wales The Health Minister, Vaughan Gething, responded with a…

FTWW is now a Registered Charity!

September 29, 2020

Up until now, FTWW has been a formally constituted not-for-profit organisation, registered with Community and Voluntary Support Conwy, and a member of the Wales Council for Voluntary Action. We’re still those things but can now add registered charity to our status. FTWW is at a very exciting point in its development, with August 2020 marking a change in our status to registered charity with the Charity Commission, registered charity number 1191069. What does this development mean for FTWW? As a registered charity, more doors are opened to us in terms of public recognition and increased awareness of women’s health issues in…

FTWW Contributes to Westminster Government’s All-Party Parliamentary Group for Endometriosis

September 28, 2020

For those not in the know, the UK Government has been conducting an inquiry into endometriosis care across the UK. Whilst health in Wales has been devolved to the Welsh Parliament, Endometriosis UK, the secretariat to the APPG, was keen to hear about the impact of Covid-19 on endometriosis patients in Wales. Back in July 2020 FTWW was pleased to have the opportunity to share members’ concerns about diagnostic delays, escalating waiting times, and the increasing demand on Cardiff’s specialist endometriosis centre – which continues to be the only one of its kind in Wales.

FTWW Writes to the Welsh Government to get Menstrual Wellbeing on the School Curriculum

September 28, 2020

The new Education Department Bill introduced in July will see schools in Wales prepare for the biggest change in education for generations. The new curriculum replaces traditional academic subjects with six new Areas of Learning Experience (AoLEs). At present, the curriculum offers schools the flexibility to decide whether or not to teach menstrual wellbeing. This has the potential to see the topic overlooked, leaving young people without the information they need to know what a normal menstrual cycle is, and when to seek medical help. On September 22nd FTWW in collaboration with Endometriosis UK sent a letter calling for compulsory…

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