The Dr Louise Newson Podcast - 072 - The Menopause Charity - Vanessa Barnes & Dr Louise Newson

Episode Date: November 3, 2020

In this podcast, Dr Louise Newson chats with Vanessa Barnes, fellow trustee and Chief Executive of their newly formed Menopause Charity.  Vanessa describes in detail her own menopause journey and her experiences of being perimenopausal and how she came to first meet Louise when trying to find treatment for herself over three years ago.  Louise and Vanessa discuss the lack of information, knowledge and awareness surrounding the perimenopause and menopause and the apparent stigma attached to it. There is a very real need for this to be addressed and Louise and Vanessa explain how The Menopause Charity can help to do this.  Louise and Vanessa also discuss the wider impact of oestrogen deficiency and the general lack of information and knowledge about the very vital part that oestrogen plays in women’s health. The need for a menopause charity to be set up is something that Louise has been thinking about for some time and now, thanks to the collaboration and efforts from a wide variety of people who are working on The Menopause Charity team, Louise and Vanessa are hugely excited to be in the position where they have now received official registration as a charity from the Charity Commission! The whole team are looking forward to the future and getting the funding needed to get The Menopause Charity website built and to start the process of helping more women to get the support, information and help that they deserve.  Click here to find out more about The Menopause Charity  Vanessa’s Take Home Tips about why The Menopause Charity is essential:  The Menopause Charity will benefit millions of women and will make a positive impact on the lives of so many perimenopausal and menopausal women (and indirectly on their partners!)  The Menopause Charity has been set up by a very special team of people who come from a wide variety of backgrounds and skill sets but who are all united in their passion to improve the quality of menopause care are raise awareness about it. As a result of this collaborative effort, this expert team will work to ensure that The Menopause Charity will be the very best that it can be.  The Menopause Charity is essential as it will raise awareness about the menopause and will help to remove the stigma attached to it.  Through the charity, we will encourage society to embrace the change! 

Welcome to the Newsome Health Menopause podcast. I'm Dr Louise Newsom, a GP and menopause specialist, and I run the Newston Health Menopause and Wellbeing Centre here in Stratford-upon-Avon. So today I've got with me Vanessa Barnes, who is a lady who I met a few years ago, actually, when I first opened my clinic, and she's since become a friend, and she's a mutual friend of another friend. so all these things connect.

But the main reason that she's come on to the podcast today is to talk about something that's very, very, very exciting for me. The charity that we have just launched, the Menopause charity. And Vanessa has been working tirelessly to really get this together. And the charity is now official. So we want to talk about it and why we decided even to set it up. So welcome Vanessa. Thanks for coming on today.

Thank you very much for having me. So before we start talking about the charity, you're very open, which is lovely, just to talk about your experience. So I don't even know how you found out about my clinic because it hadn't been going very long and I certainly didn't advertise it. And suddenly you came one day to the clinic, didn't you? Yeah. Now, do you know what? I was so lucky. It was a good three years ago or so now, maybe a bit longer.

I'm 46 now, so I was only 43 at the time. And to be honest, I'd been, I really probably should have tried to seek you out years earlier if I'd been. able to. But it took me a while to kind of put two and two together and to sort of think that the symptoms that I was having might be perimenopausal. And it was actually a friend of mine who mentioned your name. And I was feeling particularly low. And I thought, no, this is it. I've had enough. I've tried various over-the-counter supplements and things like that to sort of try and boost your feeling during the time of the month and the rest of it. And yeah, just sort of Googled you and came to see you and within a week of going on the HRT just felt like the fog had lifted.

It was one of those situations where I didn't really appreciate how bad I felt until I started to feel better again, which I think is something which you hear an awful lot. It had been a gradual, I suppose a gradual slippage into just gradually feeling worse and worse. And not particularly physically. I mean, I would get the night sweats, but apart from that, I didn't really have any physical symptoms, but just the low mood and the inability to sleep properly and getting more irritable with people than I should do, particularly children and husbands. But it was just quite a gradual

process. Yes, I was just, you know, I feel extremely fortunate that it was around about the time that you'd set up your clinic and I think I'm, I don't know if I'm patient at zero, but I can't be far up. Pretty much, yes. And it's interesting because I obviously set up a menopause clinic and I set it up privately because I couldn't get a job working in a menopause clinic in the NHS because there are so few. But actually, you weren't even menopausal, were you? You're perimenopausal. And now we do see a lot of women and I talk to a lot of women who are perimenopausal. But three years ago, a lot of people weren't talking about the perimenopause. They weren't even talking about the menopause because a lot of people think it's an old person's, something

that's natural, it's not even a disease. So why should we go and see a doctor? And when you Google menopause, you often see a picture of a grey-haired lady running down the beach with their grandchildren and certainly you haven't got grey hair and you don't have grandchildren. And your periods haven't stopped. So how could you be menopausal yet you were coming to talk about something? And I don't know then if you knew the health risks of having low hormone levels because it's one thing helping your symptoms, but the other thing is investing in your future health, isn't it?

Yeah, absolutely not. You know, I was reflecting on this earlier today. I was thinking about the podcast and my own menopause or perimenopause journey, because as you say, I'm not actually menopausal yet. And perimenopause was a word I didn't even know. I hadn't even heard about it. And I can recall going to my GP sometime before coming to see you. A very nice lady GP, but I sort of was talking to her about my low mood in particular

and just generally not feeling myself. and she never mentioned paramenopause or menopause, and she was sort of pushing me more down towards the root of antidepressants and that, you know, maybe I ought to consider that, which I didn't want to do because I didn't feel that I was depressed. I didn't feel that this was depression. It just felt like I wasn't quite me. But yes, certainly paramenopause was not a word that I had heard of.

And really, before I came to see you, I would say all I knew about the menopause was that's when your period stopped. mine haven't stopped. And that was the sum total of my knowledge at the time. I mean, obviously, it's come a long way since then. But I think there is still a huge misunderstanding and stigma surrounding menopause. People just don't, women in particular, obviously don't realize that looking back, I think I was in my very late 30s or certainly by the time I was 40 when I was starting to get some symptoms. It's not something that you expect. I certainly didn't associate it with menobores because I'm, you know, I'm not menopausal. Yeah, and I think, you know, you're busy,

you've got three children, I've got three children, you constantly pulled and pushed and you think, of course I'm going to be tired, of course I'm going to be a bit irritable, of course I'm going to be snappy with the people who I love because I can take it out on them. I mean, I know when I had symptoms, I had the most irrational anger at times. I was so rude to my husband, and it was like I had this demon in my brain telling me, it didn't matter, I could be rude. I didn't care. I didn't love him. There was nothing about him I liked. His breathing was annoying me. Just looking at him, which just was awful. And, you know, there are times and he said, I just can't live with you like this. This is awful. But I said, I don't care. Go then. Actually, of course I didn't

want him to go. I've known him for 31 years. I can't function without him. But at times that your brain is taken over by someone else or something else. And it's really hard, isn't it? Yeah, I can remember two or three weeks after starting on my HRT and feeling suddenly so much better and just like a weight had been lifted off my shoulders in a way and my husband said to me wow I've got my wife back you know this is wonderful and it is something actually which affects as much men as it does women because of that because you know the people that love us and supporters and are around us and you know they have to put up often with the sharp end of things so it's really in everybody's interest not just women's to be more educated about it and to understand more what's happening to them.

Absolutely. And I think naively, before I started doing as much menopause work as I do, I really just thought about symptoms. And we know 25% of women have severe symptoms, 75% of women will have some symptoms. And so I was thinking, well, a proportion of women, it's important too. And then I started my clinic and listened to stories of women who are really struggling to hold down a job, to keep their partner. Some of them are suicidal because the effect of hormones on their brains. And then we think about the health risks. So even women who have no symptoms, when they have low hormone levels, they have an increased risk of osteoporosis, diabetes, heart disease, dementia, really important conditions.

And now, as you know, I seem to have dedicated my life to the menopause, but it still isn't enough. And I can't do any of this myself. And so for a few years, I've thought about a charity because I wanted somewhere where women could be a voice, they could be heard, and they could be supported, and they could be helped. But I didn't know how to do it. And whenever I mentioned to people, I've got this idea I want to set up a charity, they just said, you must be absolutely mad. It's so difficult.

So it's been there on the back burner. And the more work I've done, the more stories I hear. And also the more amazing people I've sort of collected. on my way who believe in what we want to do, which is to help more women. And I was very fortunate that somebody, Alison Keane, who I didn't know then, just approached me on Instagram and said, I've heard that you might want to set up a charity. I have phono. Can I help? So she started doing some of the huge amount of paperwork that needed to be done to set up the charity. And then you sort of came on board, really, didn't you? And how? But just explain a bit,

because it's no mean feat what you've done. Well, I mean, as you say, I sort of came on board a couple of months ago, or maybe a bit more than that, sort of just when it was first being spoken about and a seed of an idea, really. And I think as luck would have it, I had the time to be able to commit to it. It was looking for a challenge with two sons off at university and, you know, a lot more time now to be able to start to think about throwing myself into something.

And, you know, as you know, I'm hugely passionate about, the menopause and trying to redress the stigma attached to it and sort of spread the word about HRT and all the benefits, huge benefits of that. And so yeah, it was actually Jane who had mentioned to me about that you were thinking about the charity and, you know, what did I think? Would I be able to sort of lend some time to it? And I was a lawyer by profession. So I'm not sort of daunted by a lot of documents and drafting and applications and sort of the governance side of things. But I must admit, a bit like you, I didn't really appreciate quite what was involved before embarking on it. I would probably sum it up a little bit as maybe trying to set up a

company, but with more layers of regulation and red tape perhaps that you have to jump through. I think it's, sometimes it's an advantage to know slightly less because you then just get on with it and do it. So, yeah, so I've basically been sort of delighted to come on board and try and get the charity to the stage where we've now achieved the registration with the charity commission. So we are now officially a charity, which is fantastic. And we managed to get that through a lot quicker actually than we had initially thought that might happen. And now it's the case of trying to coordinate and really get the charity launched and

things up and running, funds coming in. We've got a brilliant team of people, as you know, who are collaborating with us and helping us on this journey from a huge mixture of backgrounds and, expertise levels who, you know, that's been one of the wonderful things is with the team we've got. There are so many different people with different skill sets. But together, you know, we're all able to kind of put something into the pot and help us all get the charity through to where it needs to be. So that's how I've ended up here. Which is really exciting. So you're one of the trustees, which is brilliant. I'm one of the trustees. And we've got Professor Matthew Cribs,

haven't we, who's worked for NHS England. He's now actually working on his head of behavioural change for COVID. He's done a lot of work for cardiovascular disease, all sorts of chronic diseases, and he really understands the menopause. And also he understands the health risks, but also the cost of the NHS, the billions of pounds a year that is spent on osteoporosis, on cardiovascular disease, on migraine management, even absenteeism from work for NHS employees.

So he's coming at a different angle, really. He's not a clinician, but he will help with policies and help get it onto the agenda more in the NHS. So he's amazing. And then we've got some good ambassadors, haven't we? So just to explain to who we have. Yeah, so, I mean, we're hugely lucky to have the support of many ambassadors. We've got Liz Earle, who is fantastically lending her support, Lorraine Kelly, Lorraine Candy, Kate Muir, And Davina McCall as well as also very kindly agreed to be an ambassador for us.

So we're really hoping that with ambassadors like that behind us, we can really spread the word and get the message out there because that's one of the key issues at the moment and we'll be probably for a while going forward is really sort of creating some noise around this and letting people know about the support and the charity that we're trying to raise and raise the awareness and the profile of it. Yeah, and certainly a lot of work I've done sort of playing a bit with the me

and engaging other people is because everyone's got a voice and the more voices are heard, the better. So we know that so many women aren't neglected. And whichever group of women you look at, they have stories, which are so sad. So we want to engage with other charities as well, don't we? So I've already got links with the Sophia Forum, which is an HIV charity, because we know women living with HIV, more likely to experience symptoms, less likely to receive HRT. and then various cancer charities. So I've done work with a couple of ovarian cancer charities. A lot of women have ovarian cancer

or have their ovaries removed because they've got a brackered gene, still need HRT often and they're not given any advice. And then there are other big charities like the British Heart Foundation, the Royal Osteoporosis Society. These are really important charities for us to work with. Alzheimer's. Alzheimer's, we've already engaged with them because research needs to be done.

And so just to explain a bit about what the missions of the charity are then for people who are thinking, why do you need a menopause charity? Well, I think they're very much two or even threefold. I think first of all, it's raising awareness amongst the general public about the menopause and the issues surrounding it and about the treatment options available and the various benefits and risk factors of those. Then we also have the education side of it in terms of. of trying to educate the health professionals themselves, which, you know, as you know,

as someone who was at the GP in the NHS, there isn't a great deal of training that is provided about the menopause. And the provision from one GP surgery to the next can vary greatly depending on the approaches and the attitudes of those GPs to the menopause. And there's still, you know, a lot of stigma and perhaps concern amongst GPs about HRT and the benefits and the risks of it. So we've got the education program, the online education program for doctors and the health professionals. And then the final stage of it is the provision of hopefully treatment options and facilities for women so they can get access to the treatment because there's such a paucity of adequate menopause and HRT provision. And it varies, as I've said so

greatly from locality to locality. You know, there is a great deal of women in deprived areas in particular, we were just reading a report today that was saying that, you know, 29% of women from deprived areas fewer get HRT than if they were in more affluent areas. And that simply isn't right. And we're really hoping that we can help address that with maybe some mobile treatment clinics or online treatment services and a helpline for women so they can call up and actually get some advice or some support or just realise they're not alone. Absolutely. Yeah. And it's very important. So we're really wanting to focus on disadvantaged women and also women from different socio-economic classes but also different ethnic groups as well because we know certainly a lot of women from

ethnic minorities actually have a higher risk of type two diabetes and a heart disease but they are finding it very difficult to even know what's going on and to receive help and one of the people that's very associated with the charity is dr adjika voyra who has translated some videos already in to Punjabi on my Menopause doctor website, and they've been really greatly received already. But that's only one language. There's a lot more languages, and I engage with people all over the world. And so we decided to call it the Menopause charity because it can be global, can't it?

It's not just a UK charity. Our website is themenopause charity.org. But it's very important that women are listened to, and a lot of women are really scared, because they feel that something's happening. to their bodies. And I know we were laughing earlier about how we spoke to our husbands, but actually it's very scary when you can't remember things. When you feel that you're turning into a different person, you have no motivation, you have no joy, you're not enjoying life. And the things that you used to enjoy just aren't there. And you have no one to talk to.

And perhaps the people that love you are scared as well, because they see you changing. I did a radio interview last week, and a man actually contacted the radio station afterwards and said thank you because I now understand what my wife is going through. I had no idea, but now I'm prepared to talk to her about it. And that's really important that everyone can access some information because the menopause is a natural process. It's not a disease. It's a marker for future diseases. But actually it can affect so many women in different ways. And we only need to look at how hard it is in so many countries and so many situations for women that this is just scandalous in my mind that the menopause hasn't been addressed before.

My husband's done some work in Pakistan and all the doctors that he's met of 90% are men and I'm just wondering because they're at the top of their game, they're all consultants. The women train in medicine. They're not there and not all of it. of course there will be menopause, but a lot of it will be. A lot of jobs, you see, there aren't the same men and women. And it's really sad that we're losing so much of our society, aren't we? Yeah, absolutely.

I mean, it's 20% of women leaving their jobs due to the menopause, or menopause are symptoms. And I think as you say, it's, you know, getting into more deprived areas, areas where women just really don't have the access to support and treatment. And really starting a conversation about it, And it's not just about what the menopause is. And for me, the perimenopause, it's, you know, the fact that this can start in your late 30s, early 40s. It can start even younger if you've had a medical condition.

But, you know, for a lot of women, it'll start when they're 40. And it could be a gradual slippage like it was for me. And you're then living with that for a very, very long time. This is not something which is just a short phase that you need to grit your teeth and get through. And, you know, I think the other part of the conversation, is the benefits of HRT, which is so misunderstood and unknown by so many women. You know, a lot of them think, well, I can put up with my menopause or symptoms. I can, you know, I can do this.

I'm a woman. I'm supposed to suffer a bit. And I've done childbirth and I've done periods. And, you know, this is just all part of the process. But I think if they actually realize that this isn't estrogen deficiency and that their health is going to be affected detrimentally as a result of that, just as it would be if you were deficient in any other sort of aspects of me, whether it's iron or vitamin D or thyroxin or whatever. You know, if they understood more about the actual benefits, they would be a lot

less willing to just put up with the symptoms. And I think that's all part of the conversation. Absolutely. And I think certainly in the UK, the figures are around 10 to 14% of women take HRT. Yet we know the vast majority would benefit from it. But in some countries, even such as Sweden, the rates even lower, which is quite surprising actually because they're a very healthy country. And it's hard to know in other countries such as Spain, because you can buy it over the counter, so it's hard to know the percentage of women, but it's low. And certainly in some countries such as Dubai, Middle Eastern countries, they can't even get HRT. It's not available for them. And I feel it's morally wrong. And actually, there is

something about gender equality that comes in as well, because Our main hormone is estrogen, which a lot of women aren't able to get because they're being refused. And then the other hormone that we produce in larger quantities than estrogen is testosterone, which can really help with mood, energy, concentration, can help with sleep. And also it can help with libido. Yet it's not licensed anywhere, actually, in the world for women, which is absolutely scandalous. I can't imagine men not being able to have testosterone. And so certainly one of the things that I'm,

would like through the charities to be able to allow women to even think about a bit of a campaign so they can, you know, get together and be really heard as a group so we can have choices because I think so many of our choices have been taken away from us during the menopause. And we're here to stay as menopals are women. And we wanted to be a really positive time for women's lives. You know, we're both very fortunate. I couldn't personally get HRT from my GP because they weren't prescribe. because they think the risks are too high, which is incorrect. But I was lucky I knew someone

and I could get it and now my GP will put it on my repeat prescription. You had to come privately. It's completely wrong. It's very cheap. It's very effective. It's very cost effective as well. And it can save jobs. It can save marriages. And actually, it can save lives as well. And we were talking earlier, weren't we, about engaging with the Samaritans. And one of my patients works for the Samaritans, and she said, gosh, now I'm menopause, and I realise so many of these women have phoned up for years. And they're on the brink of giving everything up. But they're actually menopausal, and no one's recognised it.

Yeah. It's such a hugely treatable. I don't want to call it a condition because it's not a condition. But it's, for my own situation, I felt better really, very, very quickly and dramatically got my energy levels back. And then as a result of that, you can do other things more that you perhaps were not doing, such as exercising more, because you actually feel like doing it. You know, I would probably say that I feel fitter, stronger, healthier now as a 46-year-old than I did as a 26-year-old. It really has been quite revelationary for me. And certainly I was talking to Rebecca Lewis, who you know, who's also associated with the charity.

She works with me very closely as well. We were both saying we feel the best we felt for a long time. And I think some of it is life experiences. You know, we're stronger, we're more resilient, we've learned so much. But because we are our hormones of balance, we don't have these symptoms that were flooring us before. And actually, you know, it's really important that we enjoy as much as we can every day because none of us know what's around. the corner. And so many women say to, well, I'm just going to battle through my symptoms. I'll come out the other side and I'm sure I'll feel better. Well, there is no other side. And some people find their symptoms improve. Often people find their symptoms change. And some women have symptoms for decades, but it's not just about symptoms, of course. It's about the health risks. So the menopause charity

is really going to help. And we have so many ideas. But we also, I'm really hoping we have a lot of volunteers that can help as well because so many women I talk to are so grateful that they feel better, but they're so sad that other women are suffering. And there's something quite magical about women getting together, isn't there? I think it can be very powerful. I, my teenage children are actually, well, they're a bit older now, so they've gone out of the sort of playground bitchiness, bickering phase, but my nine-year-old is just starting into it. And young girls are vile, I'm sorry, but a lot of them are. Whereas actually, when women grow, they get stronger.

And I think some of this vileness that happens in the playground makes us stronger, for whatever reason, we don't realise at the time. And we get things done, actually. We're used to having lots of things going on. And we're nurturing. We want to help. Yeah, absolutely. And so I think what we've done in a short space of time,

because we've got a good team of people, and we do have men. We have Marcus Daly as well, who's helping in the financial side, and Matthew Cribs and hopefully we will collect more men. But have women together, we've just moved on in a very fast pace. And it's been amazing to see, hasn't it? Yeah, absolutely. The collaboration and the sort of the way the team has come together is, I think that can be seen on the wider picture with women in general.

And I think that that is what we want to sort of speak to is this, almost the sisterhood element of it and trying to sort of say to people, look, you know, just because I don't want other people to suffer those few years when I wasn't feeling great. And you know, you pass the message on. It's, you know, pass it on to your children, pass it on to your daughters, to your nieces and to your friends. You know, I do want the conversation to be wide and to be amongst the general public, not just a sort of a whispered conversation in the coffee shop between women of a certain age,

because that doesn't help anybody. No. And certainly I really hope for our children's generation and generations to come. People are managed and treated appropriately during the perimenopause. if their menopausal because of treatment such as surgery or radiotherapy or chemotherapy, then their hormones are replaced straight away. So a bit like you were saying about people having thyroxin, if you have an underactive thyroid,

well then they just have that replaced. And then they can look at any health issues for their bone, their heart, their brains, but they can enjoy their life. They can feel liberated. And I think that's really key, isn't it? Yeah, I think women need to understand that the menopause is not a challenge to get through it and out the other side because, you know, there are,

even if you don't have any symptoms, there are so many effects that your body could be suffering from that you're not even aware of that are sort of happening under the radar. And I think the more that we can sort of encourage the conversation and increase the knowledge, and that's why it's on both the level of the general public, but also amongst the health professionals themselves,

and dispel the myths, you know, the myths about HRT and the risks associated with it. it, you know, that will help empower women. And that's really what we're about. We really want to empower women to have the ability to make choices about their own bodies and how they want to live their lives. And it might not be for everybody, but at least if you have the information and you have the knowledge,

you can make an informed choice. And so much I feel at the moment there isn't an informed choice for women because they're not given the options and they're not given the knowledge that they need. My 14-year-old daughter now knows far more about the perimenopause and the menopause, the most 40-year-old women do. If we can start at that age and just have it as a normal conversation that's not embarrassing or stigma or that people should be ashamed of talking about, then that in itself will be hugely beneficial and help spread the knowledge and the word about the whole thing.

Absolutely. Absolutely. So there's a lot to do. We're in our infancy, but we're very excited, as I'm sure you can hear. And I'm really grateful for you, Ness, to share some time tonight to talk about, the menopause charity. So just before we finish, can you give three take-home tips to people who are thinking, why bother with a charity? So could you just say three points? Why you think the charity is essential? Well, I think the menopause charity is essential, partly because I really believe

it is going to be a benefit to millions of women in terms of what we're hoping to be able to provide, the support, the services, the education to the medical profession. So, you know, that's the number one thing. It really is going to be a benefit to 51% of the population directly and indirectly to the other 49%. So that's probably the first thing. I think the second thing is what we've already touched upon, which is the team of people involved. You know, that everybody is collaborating and working to advance the cause and to get the charity up and running as fantastically as we know it can once we're up.

going and provide all the services that we want to provide. And thirdly, I think just going back to what I was saying a few moments ago, you know, the charity will hopefully empower women and will really help to take away the stigma about menopause and perimenopause and, you know, encourage people to talk about it. And I think in doing so, you know, what we want it to do is we want people to embrace the change, you know, embrace it. Don't shy away from it and hide away from it. It's, you know, I'm really hopeful that the charity will, will do it. a lot for that. Absolutely. There, we've got a lot to do. And as Kate Muir always talks about, is that this is the menopause movement and we're really making things move and hopefully making

a difference for the future. So lots to watch, lots to do, and let's see what happens. But thank you ever so much for coming tonight. It's been really good. Thanks, Ness. Thank you very much for for having me. For more information about the menopause, please visit our website, www. co.uk UK.