Wednesday 21st March, 2018
Today’s episode is inspired by the Black Women’s Health Imperative’s IndexUS report which looked at what healthy black women can teach us about black women’s health.
On 14th March, we hosted a fibroids Twitter chat with the Fibroid Forum UK. We had a great time discussing the work of The Forum, how they’re supporting women who have been affected by fibroids and explored some of the challenges women with fibroids encounter.
You can read some of the highlights from this really interesting chat below and if you have any questions for the Fibroid Forum, please do send them an email or drop by their next support group session (all the details are in the chat below).
Hi everyone, it’s our my pleasure to welcome you to another one of our #fibroids #TwitterChats. #FibroidsChat (1/4)
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Today we’ll be chatting to, @FibroidForumUK, and exploring all the great work they’ve been doing to support women who have been affected by #fibroids. (2/4)
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Now, it’s my pleasure to introduce our guests @FibroidForumUK.
Welcome @FibroidForumUK , please tell us a bit about your organisation and what you do. #FibroidsChat (4/4)
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Hello everyone, it’s great to be a part of this chat. Fibroid Forum UK was set up in 2015 by a group of women who have suffered with fibroids. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
We started Fibroid Forum UK to raise awareness of the condition, provide support for women with fibroids and empower them to make informed choices about treatment. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
So, let’s get started.@FibroidForumUK, can you tell us what motivated your team to start the Fibroid Forum UK #FibroidsChat
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Between us we have had various forms of treatment for fibroids including myomectomy, hysterectomy and embolisation #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
There were good and bad things about our collective experiences but we all felt that there was generally a lack of information about fibroids and about choices for treatment options. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
We wanted to make sure other women had all the information they needed. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
It can also be a daunting experience mentally and physically and we want to help other women on this journey by coming alongside them. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
We feel it’s important for those of us who have information to share this with others. We don’t want women to suffer in silence. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
.@FibroidForumUK Having probably interacted with many women affected by #fibroids since you started, what has been the most interesting and also the most surprising thing that you’ve learnt about fibroids since delving into this area?
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
We’ve learnt a lot! One example is that the location of the fibroid can be more important than the size, particularly when thinking about treatment options. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
We were also surprised to hear just how long women wait before seeking help. We seem to find coping mechanisms before reaching out and this doesn’t help. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
Many women didn’t realise how big a problem it was and looked for other reasons to explain their symptoms. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
I did this myself – when I was very tired over a period of time I put this down to lifestyle and thought I needed to slow down. We really want women to identify the symptoms early on and seek help. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
.@fibroidforumUK, you have organised educational events in both #London and #Birmingham. Can you tell us about these events? #fibroidschat
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Yes, that’s important. We held events in 2016 and 2017. There were presentations from consultant radiologists, obstetricians and gynaecologists. There was also a forum for women to share their experiences. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
.@FibroidForumUK , What were some of the most common challenges that women who attended these events raised about #fibroids? #fibroidschat
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Many women didn’t feel that the range of treatment options were explained or offered to them. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
Many women didn’t feel that the range of treatment options were explained or offered to them. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
There was also an issue of doctors not realising that fibroids could be a cause of the symptoms when some women visited and explained what was happening in terms of heavy bleeding, fatigue, etc. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
It looks there needs to be some educational work done with doctors too #fibroidschat @FibroidForumUK
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Absolutely l am totally there for doing some via social media and group chats it’s up to us to raise the profile of Fibroid suffers. I am really passionate about it because l am still suffering after surgery 10 years of fighting it. #fibroids #BlackTwitter
— RAINBOW BLAK (@RAINBOWBLAK) March 15, 2018
Yes, some doctors seem to know more about fibroids than others. We would like to see a universal standard of information included as part of their training. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
Did you find that women in #London and #Birmingham raised the same or different issues? @FibroidForumUK #fibroidschat
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Yes, the women raised similar issues about lack of information but also about feeling quite lonely as they went through their experiences. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
This is part of the reason why we set up the support group so women can share and be encouraged by others who have been through similar experiences. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
We’ve heard from a lot of women how their social lives were impacted, particularly if they were bleeding heavily. They just stayed at home, and sometimes had to take time off work. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
This is part of the reason why we set up the support group so women can share and be encouraged by others who have been through similar experiences. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
Oh that’s great. Can you tell us a bit more about your support group? Just in case people out there might like to attend @FibroidForumUK #fibroidschat https://t.co/ELljRu0xpo
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Oh that’s great. Can you tell us a bit more about your support group? Just in case people out there might like to attend @FibroidForumUK #fibroidschat https://t.co/ELljRu0xpo
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Yes, we run a quarterly support group for women. Our next one is on Monday 26 March at 6.30pm at St Thomas Hospital in London. Everyone is welcome. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
What do you think needs to be done (by the NHS and by organisations like yourself) to address these challenges? @FibroidForumUK #fibroidschat
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Organisations like ours need to do as much as possible to raise awareness of this issue among women. As individual women, we need to share our stories and also give leaflets on fibroids to our doctors. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
The NHS can follow the guidelines that are already in place about giving women leaflets on fibroids when they come to appointments, and others. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
What other events, support and work have you undertaken and what are your plans for the future? @FibroidForumUK #fibroidschat
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Our future plans are to host more events and see more support groups started across the country. We will continue to raise awareness where we can with those who are involved in treating women with fibroids. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
Hi @CAREAbtFibroids, if you’ve been following our discussion, I was just wondering if you see some of the same issues over there in the US – women with fibroids feeling lonely, lack of information, doctors not recognising symptoms.
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Definitely. One of the most troubling aspects is how many women with fibroids wait for years without seeking treatment.
Fibroids place a heavy toll on a woman’s emotional well-being and can lead to body-issue anxieties and lower self-esteem. #FibroidsChat
— CAREAboutFibroids (@CAREAbtFibroids) March 14, 2018
Where can women find out more about these services and the work that you’re doing on fibroids? And if people want to support your organisation how best can they do that? @FibroidForumUK #fibroidschat
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
They can join our Facebook group. They can also email us fibroidforum@outlook.com. We will have more information about how people can support us in the near future. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
Do you have any tips or advice you can share for women living with fibroids? @fibroidforumuk #fibroidschat
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Generally, it’s important that we take care of ourselves – that includes our physical, emotional and mental well-being. It’s important to seek appropriate medical advice as all of us are different. #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
Well, we have come to the end of our #FibroidsChat. A big thank you to @fibroidforumUK for joining us. It has been really nice speaking to you and learning more about the work of your organisation. It’s great what you’ve been doing and we wish you all the best #fibroidschat
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Thank you @lakehealthwell for having us as your guests. Keep up your good work too! #FibroidsChat
— Fibroid Forum UK (@FibroidForumUK) March 14, 2018
What a great chat we had with @FibroidForumUK. They provided some really useful insight into some of the challenges that women with #fibroids face and how they’re addressing some of these issues.#fibroidschat
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
If you’re based in London and have been affected by #fibroids, check out their support group on 26th March at 6.30pm at St Thomas Hospital in London. Everyone is welcome. #fibroidschat
— Lake Health and Wellbeing (@lakehealthwell) March 14, 2018
Welcome back to our Inspirational People in Healthcare blog series. Today we are absolutely delighted to feature Apryll Chase.
Apryll Chase is a Consultant Obstetrician and Gynaecologist at St George’s Hospital in London and has a specialist interest in ambulatory and endoscopic gynaecology, with a focus on the evaluation, diagnosis and treatment of pre-malignant disease.
She studied medicine at Guy’s, King’s and St Thomas’ School of Medicine, KCL which she followed with extensive training at centres of excellence for Obstetrics and Gynaecological Surgery. She holds post-graduate qualifications in Clinical Leadership and in Academic Practice; has completed Fellowships in Ambulatory and Endoscopic Gynaecology, and in Management and Leadership in Education; including pursuing an MA in Academic Practice (Education).
Ms Chase is passionate about education, mentoring and widening participation in medicine and is a Fellow of the Higher Education Academy. She has taught undergraduate students at leading medical schools throughout London, has been on a number of examination and assessment committees and developed courses and teaching materials for students and qualified doctors. She is an innovator in medical education having been involved in the creation and evaluation of e-learning tools, clinical simulations and video-based teaching resources which led to her receiving the Excellence in Education Innovation Award from the Simulation, Technology and Enhanced Learning Initiative of NHS London in 2010 and the Excellence in Contribution to Education Award from the School of Obstetrics and Gynaecology, HEE Kent, Surrey & Sussex in 2013.
She is well-respected in her field having served on several boards and advisory committees at the Royal College of Obstetricians and Gynaecologists, Health Education England and the Confederation of South London Lead Providers, to name a few. She is widely published in her speciality and in education, has delivered presentations worldwide and has not only received the awards previously mentioned, but her excellence as been recognised through prizes, scholarships and being awarded several leadership positions.
Ms Chase is also very active in her community having coordinated or participated in the following programmes: Hands up for Health, Rise Leadership Academy, Access to Medicine Scheme (King’s College London), Annual CV Clinic (Bahamas), Guy’s, King’s and St. Thomas’ Mentoring Scheme and the National Respect Campaign.
Apryll Chase is a true inspiration having excelled both in her field of Obstetrics and Gynaecology, and in education. We wish her every success as she continues to have such a positive and significant impact in the field of medicine and on the next generation of doctors.
Wednesday 14th March, 2018
In today’s episode you’ll hear from Candice Bryan, the founder and CEO of Noire Wellness. We spoke to Candice about our campaign and she reflects on the how the campaign went, and Noire Wellness’ plans for supporting women with fibroids.
It is always wonderful coming across organisations in the health and wellbeing field who are making a significant impact in their community, and Fly Girls Fitness, Wellness and Mindfulness is one of those organisations.
Fly Girls Fitness, Wellness and Mindfulness is an award-winning organisation based in Wembley in the UK and founded by Amanda Epe who is a writer, coach and health promotion specialist. They aim to improve the health and wellbeing of their community through creativity and activity. Their work primarily focuses on girls, women and young people and centres around three activities:
With Fly Girls Fitness young girls are encouraged to get active using fun activities likes Box Fit and Dance Fit. Here young ladies from the age of 12-25 can come together for free to have fun, get fit and improve their health. The sessions are all about the participants with attendees being able to bring their own playlist of music, this greatly enhances the experience making sessions more enjoyable and giving everyone a sense of ownership of the class.
Classes take place every Saturday afternoon from 3:15pm to 4:15pm at the Chalkhill Centre in Wembley.
The Fly Girls Running Community is a group of local women mostly from the London Borough of Brent who meet every Sunday morning at 9am to run together at the national stadium, Wembley. Women of all ages and abilities assemble in the municipal offices at the civic centre before they move upstairs to the stadium for their warm up exercises. The run is for girls over 14 to senior women but particularly targeted at the older population and women from African, Caribbean and Asian heritages, who have higher rates of health inequalities.
This is a get-me-started, run-together group, which started initially as 3 women back in October 2016 and has grown to 30 registered members. By getting people started the group encourages people who are new to running and/or being active. New members feel welcome in their friendly group where members are non-competitive, and the individual decides whether they wish to run or walk. Those who are new to running take it step by step, gradually going from walking to slow jogging up to 2km, 5km or beyond.
The Fly Girls Running Community has been a massive success with the group winning Run Group of the Year at the London Region England Athletics Volunteer Awards 2017. This was an amazing achievement with finalists being selected from over 600 entries in various categories. In addition to this, Amanda Epe, founder of Fly Girls won Run Leader of the Year.
With Fly Girls Wellness, Amanda Epe being a writer herself, explores writing as social therapy. The benefits of writing as therapy has been widely studied and we’ve even written a blog about this here.
Fly Girls Wellness recognises that writing can help people clear their mind and make sense of their situation. They state that writing brings clarity and can bring about a remarkable transformation of feelings. With this in mind they aim to create an opportunity for people to share their true thoughts which can build confidence. Their Writing for Wellbeing sessions are very different to regular literary groups where members critic your writing style, instead it aims to connect people with each other as their true feelings are shared through writing.
This is a great initiative that provides attendees with a creative way to improve their wellbeing, express their feelings and address the challenges of life.
We love the creative way that Fly Girls is addressing the health and wellbeing challenges in their community and wish them every success with their work.
To find out more about their work you can visit their website or follow them on social media
Facebook: @MsRoseBlossom
Twitter: @MsRoseBlossom
Instagram: @flygirlsuk
Wednesday 7th March, 2018
In this week’s episode we discuss our new fibroids social media campaign which we launched last Thursday in the run-up to International Women’s Day tomorrow (8th March).
We are so happy to announce the publication of our new fact sheet on fibroids and exercise. This is the first in our new series of fibroids fact sheets which aim to cover a range of topics that you have told us are important to you.
This fact sheet series is a direct result of the findings of our small research project where we explored the needs of women with fibroids. From this work we discovered that there were significant gaps in the information and support available to women and we are on a mission to fill those gaps. We have worked towards this by:
Our fibroids and exercise fact sheet discusses how exercise can help alleviate the symptoms of fibroids and provides readers with simple tips on how to get active without aggravating their current symptoms. We hope that this resource will provide women with useful information that empowers them to take control of their health and take positive steps towards improving their health and wellbeing. You can download the fact sheet in the download section below.
The next fact sheet in the series will be published soon and this will focus on fibroids and mental wellbeing. This fact sheet will aim to help women identify, understand and address the emotions that may be associated with having fibroids.
We’d like to thank Candice Bryan from Noire Wellness for contributing to this new fact sheet, Way Wive Wordz Publishing, Editing and Tuition for their editing services and FutureSoft for their design work.
For Immediate Release
2nd March 2018
Basseterre, St Kitts -This year the global theme for International Women’s Day on 8th March is #PressForProgress and Noire Wellness and Lake Health and Wellbeing are calling for progress to be made to improve the experience of women with fibroids.
This initiative has been designed to raise awareness of key areas that need focus if there is to be equality in healthcare. Noire Wellness and Lake Health and Wellbeing are calling for:
Despite fibroids being very common a survey conducted in the UK by Lake Health and Wellbeing showed that there is a low level of awareness of fibroids and women don’t feel equipped to make an informed decision about their treatment1. The survey revealed gaps in patient information on all aspects of fibroids and in the availability of peer support. Women also reported that fibroids affected their quality of life, affecting them both physically and emotionally.
Additionally, the UK’s All-Party Parliamentary Group on Women’s Health’s fibroids inquiry found that 43% of women were not satisfied with the information about their treatment choice and a third of women were not happy with their treatment2. Furthermore 40% of women were not told about the short-term complications of their treatment and 50% were not told about the long-term complications.
Research has shown that fibroids are more common in black women with an estimated 50-80% of black women affected3. In addition, black women are known to develop fibroids at a younger age, are more likely to develop larger, multiple fibroids, and tend to develop more severe symptoms4. The reason for this is unknown, but it is thought to be a combination of genetic, environmental and lifestyle factors.
The experience of women with fibroids reveals an inequality in healthcare that needs to be addressed. Noire Wellness and Lake Health and Wellbeing believe that because fibroids are a women’s issue: it affects predominantly an ethnic minority group: and it is not life-threatening, it has been overlooked. But, many women are suffering, and something needs to be done to ensure that women receive the attention, support and quality of care they deserve.
Candice Bryan of Noire Wellness says:
“In order to truly provide a better experience for women living with fibroids, we must acknowledge that health inequalities continue to have a detrimental impact on the quality of life for black women living with fibroids across the globe. It is time to collaborate and press for progress to provide solutions.”
Whilst Abi Begho from Lake Health and Wellbeing said:
“For too long women with fibroids have been neglected and it’s time for society to step up and address this inequality. We need to ensure that women, particularly black women, with fibroids have easy access to accurate, reliable information, appropriate support and a high standard of care to improve their wellbeing.”
The campaign will utilise social media to highlight what needs to be done to improve the experience of women with fibroids. The public can get involved by using the hashtag #PressForProgress in the week leading up to International Women’s Day to tell everyone of the change that needs to occur. To help, organisers have created a briefing which is available HERE.
Ends
NOTES TO EDITORS
If you would like to write a feature or interview the team behind the campaign, please contact Abi Begho/Candice Bryan
For more information please contact Noire Wellness/Lake Health and Wellbeing email candice@noirewellness.com and abi.begho@thelakefoundation.com .
The campaign launches on Thursday 1st March 2018.
ABOUT NOIRE WELLNESS
Noire Wellness is a wellness brand established in 2016 that aims to improve the health and well-being of African and Caribbean communities living in the UK through providing a range of evolving and enriching wellness experiences, nurturing the provision of community wellness hubs, community consultancy and a growing wellness network of professionals.
Website: www.noirewellness.com
Facebook: @noirewellness
Twitter: @noirewellness
ABOUT LAKE HEALTH AND WELLBEING
Lake Health and Wellbeing is a Caribbean based organization that aims to improve the health and wellbeing of the black community through research, public health interventions, giving patients a voice and raising awareness.
Website: www.lakehealthandwellbeing.com
Facebook: @lakehealthwellbeing
Twitter: @lakehealthwell
References
We are so happy to announce that we’ve joined forces with Noire Wellness to launch a fibroids campaign today, in the run-up to International Women’s Day on 8th March.
The theme for International Women’s Day this year is #PressForProgress and, together with Noire Wellness, we are calling for everyone to #PressForProgress to improve the experience of women with fibroids.
We believe that for progress to be made, there needs to be:
We want all women, particularly women who have been affected by fibroids, to join us in our social media campaign to highlight the change that needs to occur to improve the experience, care, health and wellbeing of women with fibroids.
We’ve created a range of resources you can use to join us in this campaign. These include images for social media, Facebook and Twitter headers, sample social media posts and a media kit. For more information and to download our resources, please visit our campaign page here.
We are extremely proud of this collaboration which has brought together two organisations passionate about addressing the issues that women with fibroids face. We believe we are stronger together and can achieve so much more by pooling our resources, expertise and strengths. We hope that this will be the start of many joint health initiatives.
For more information about this campaign, please visit the campaign page here or send us an email, we’d be very happy to hear from you.
We’re so delighted to announce that our March Fibroids Twitter Chat will be with the Fibroid Forum UK on 14th March at 3pm, AST (that’s 3pm EST and 7pm GMT).
We’ll be discussing all the great work that the Fibroid Forum UK have been doing to raise awareness and provide support to women who have been affected by fibroids.
Fibroid Forum UK is a Registered Charity Number 1177878 formed by women with experience of fibroids. The aim of the Forum is to provide information and create a support network through events, social media and a support group at Guys & St Thomas’ Hospital.
The Forum has contributed to the UK Government’s All Party Parliamentary Group (APPG) on Women’s Health and the report published in March 2017 which focussed on endometriosis and fibroids. Like the APPG the Forum’s aims to empower women to ensure that they can make an informed choice about the best treatment options for their fibroids
The Fibroid Forum has a private Facebook group which you can access here: https://www.facebook.com/groups/1294778417257709/ and they host a regular support group at St Thomas’ Hospital in London.
To take part in the conversation please use the hashtag #FibroidsChat.
We look forward to tweeting with you on the day!
