The Power of Three: Improving Awareness of Menopause

On International Women's Day, we meet three women in the UK who have created a genuine grassroots campaign, with no funding or celebrity backers, to increase awareness of the many and varied symptoms of perimenopause.

Their intention is to get a poster describing all the symptoms  into every GP's surgery in the UK - and it's already been achieved in Wales. As a result, the three women hope that doctors will become more knowledgeable and better able to advise women.
Last week, the three actually met for the first time to take their #KnowYourMenopause, or #Pausivity,  campaign to the Houses of Parliament in London to campaign for MP's support.  Very timely, with the widespread shortages in HRT supply in the UK.

The campaign is getting support in many other countries including the US and Canada, and posters are appearing in gyms and workplaces too.

To tell us more about Pausivity, and how we can get involved, I spoke to the three women behind it, Liz Carr-Ellis, bottom right, who's a 52 year old journalist from Newcastle, now living in Canterbury;  Karen Kenning, 50, top right, a mother of two from Elgin in Scotland, and Clare Shepherd, 65, top left, a nutritional therapist and health coach from Sheffield.

It all started on Twitter.

How did the idea for #Pausivity start?

Liz: "We’d been talking for a while on Twitter about how there was no information in the GP’s office about menopause and all our GPs had printed stuff out during our appointment – when we already knew we were perimenopausal as we’d had to research it to find out why we felt the way we did!

"Then one night, I was in the GP’s waiting for an appointment for HRT, when I looked at all the posters on the wall and got really meno-rage angry and thought: “Right, if the NHS won’t give us a poster, I’ll bloody give us one.”

"I had an idea of a poster and people sharing it on social media with selfies and I contacted a few people on Twitter that night and they thought it was a great idea. Pausitivity really began that night. I got in touch with Allyson Shields, a designer I’d worked with and written about, and she created our gorgeous poster. Then we started on 1 July - no one slept the night before!"

What was the moment you're most proud of in 2019?

Karen: "Hard to choose! On 1st July, when the tweets started rolling in when we launched our poster, I remember thinking “this might just work” and I was proud and terrified all at once.

"Also appearing on the BBC. Completely outside my comfort zone. I’d never met any of the people I appeared with. I hate flying – I had to fly there. So many things that I would normally have said no to as a result of the anxiety and self doubt that menopause gifts me. I’m so proud I decided to go and didn’t make an excuse not to do it. The BBC is what led me to Pausitivity and all the brilliant work we’ve done since then."

Karen Kenning

Liz:  "There are too many! Getting Marian Keyes to pose with a poster, our first MP, the GPs who joined in, all the selfies… International Menopause Day was amazing as we had so many selfies and then we heard they were getting sent to every GP office in Wales. That made us cry. Also, Dr Amir Khan sending us four hilarious selfies - there are too many. Every one is special because someone has taken the time and effort to do it."

What are your aims for the campaign this year?

Clare: "Still to get into every GP surgery in the UK. Wales has succumbed, we just need to break Scotland and England! When that happens, goodness knows what we will do."

What still needs to be improved, to make the perimenopause easier?

Clare: "So much! This is such a huge subject, with so many angles that need to be considered. Firstly, women must have more confidence in their GPs. They need adequate training, not just in the dispensing of drugs, nor be limited to the poor advice offered in the NICE guidelines. They need to fully understand the physical and emotional aspects of menopause, recognise that all women are different, (not just hot flushes) and be able to offer appropriate support. CBT would be great, but not to be added to a 6 month waiting list.

"Education of women. In my talks I explain what ‘menopause’ actually is, how the hormones can dance, why symptoms may be presented, why they are all unique,  you would be surprised how few women know. Covering it in PSE in schools good, but let's be honest, they will have forgotten about it when they’re in their 40’s! So a constant reminder …. Having our poster in GP surgeries can help achieve that.

"Workplaces: More workplaces need to understand how menopause affects women in work, how they can support them. And its really not too complicated! The mental health guidelines and policies they have to have in place would need only slight tweaking … but again awareness and understanding imperative."

Clare Shepherd 

In terms of their own experience of perimenopause,  Liz says she has had an awful time. "Hair loss, palpitations, aching joints, itchy skin, anger, tears, depression, anxiety, paranoia – I’ve seen some dark times with menopause."

Karen had to have a hysterectomy at 34 but bleeding continued, along with many symptoms of perimenopause. Her doctor was dismissive, saying it was impossible she could still be having periods. Read more about what followed here. 

Clare says she felt ignored,  misunderstood, irrelevant, fearful and out of control of her life and health.

What has helped you get through it?

Liz: "That’s hard to say as I’m going through a bad time at the moment fighting to get the right HRT. There is loads of support on Twitter and I am so grateful to everyone who messages or just sends me a like on bad days. It makes a difference to know someone is there. Karen and Clare are both amazingly supportive too – they know how it can be."

Clare: "HRT initially, then finding out what I could do to help myself when I decided to come off it.

This was all in the days before Dr Google and social media, so I was very much on a lonely path of discovery. Which in hindsight has really helped me with what I do today, as I explored and experienced so many options. When I came off HRT, I found that acupuncture, reflexology, nutrition and mindset can all work."

Karen: "I have literally spent a fortune and tried whatever I could to help with symptoms. Some worked for a time. Others not so much. After  sixteen years, I finally got HRT. The difference was transformative. Not without issue – but night and day from what I’d been dealing with. Until just a few weeks ago. "

What's your view on the current HRT shortages and what's causing it in the UK?

Karen: "It’s frustrating. It’s unnecessary. It reflects quite clearly that women’s health is not being taken seriously. I brought the shortages up with a reporter after the BBC appearance in May last year. There was chatter about it on the forums I’m part of. We asked women to tell us their stories but no one did. It’s frustrating that it’s taken this long for it to become newsworthy."

Clare:  "It’s a disgrace! As to the reason? I’m not sure. I don’t think it has anything to do with Brexit, rather that the drug companies can get more money elsewhere than the NHS are prepared to pay for their supplies. Matt Hancock's silence is deafening."

Liz:  "Cost-cutting. Emma Hartley did a great expose on this. I don’t believe all this “wrong glue” bumf as other countries aren’t having shortages. Someone in the Dept of Health must know the answer."  Read more in Liz's latest post. 

Are there any people in particular you would love to see holding the poster?

Karen: "I love seeing anyone with a poster. That someone cares enough about women’s health to take the time to do a photo blows my mind. The biggest reactions we’ve had from any selfie have been the TV stars – Jeremy Vine and Ross King gave us 951000 hits in one week!  My ultimate would be Oprah Winfrey, Michelle Obama and as a Scot, Nicola Sturgeon – but I’m genuinely thrilled with every PosterSelfie we receive."

Liz:  "I got Candace Bushnell with one and that was an incredible moment – she is a hero of mine. I’m a Sex and the City girl. If we go fantasy, then all of Depeche Mode plus Barry Manilow. Otherwise, I’d love to see Matt Hancock with it as then we’d be able to get them in GPs' offices."

Clare:  "Matt Hancock! And any other person, male or female, who can hold it up with pride and say “this has helped change my life"'.

Pleased to see my own MP, Iain Duncan-Smith, lending his support 

Get Involved:

Pausivity web site 

Follow on Twitter:  @Pausitivity2
Liz Carr-Ellis:  @50Sense

Karen Kenning: @Karen_Kenning
Clare Shepherd: @YourNewLifePlan

Download and print the poster - send a selfie to the three women, using hash tag #KnowYourMenopause. Ask if you can put the poster in your doctor's surgery. Write to your MP to ask him/her to support the campaign, and of course, the Health Secretary Matt Hancock.

Sharing this post with Claire Justine, #ShareAllLinkUp at Not Dressed as Lamb, Linkup on the Edge at Shelbee on the Edge, Anna at Muttonstyle,#BloggerClubUK or #AnythingGoes at My Random Musings

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