Health Europa discusses the urgent need to improve menopause-related services, care, and public understanding with founder of Menopause Support Diane Danzebrink.
Although the discourse surrounding menopause has become more widely understood in recent years, in many ways, it is a still a subject that is seen as somewhat taboo. This natural life stage, which typically occurs in women aged between 45 and 55, can cause symptoms of varying severity and in some cases can pose a heavy emotional and physical burden.
In February this year, the UK government held its inaugural Menopause Taskforce meeting which seeks to raise awareness and improve support and services for women experiencing menopause. Part of its remit will include encouraging open conversations among the general public, in healthcare settings and within the workplace. The latter marks an important step since a UK industry-wide survey earlier this year revealed more than one million women could be forced to leave their jobs due to lack of support at work as they experience menopausal or perimenopausal symptoms. Helping women to achieve an open dialogue with their employer and improve their experience and wellbeing in the workplace is one area of focus for Menopause Support. Founded by Diane Danzebrink, the not-for-profit organisation aims to improve knowledge and understanding of menopause among healthcare professionals and the general public through the provision of support and training. Health Europa spoke to Diane about the organisation’s national #MakeMenopauseMatter campaign and the key barriers affecting menopause-related education and care.
How did Menopause Support come to be founded and what are the organisation’s key aims?
Menopause Support was really born out of my own experience of menopause; back in 2012, I had surgery which put me in immediate surgical menopause. Unfortunately, I was not thoroughly counselled or informed, before or after my surgery, about the effects of having both my ovaries and womb removed. I had grown up thinking that menopause was generally no more periods, hot flushes, and night sweats. I had no idea that there were so many potential menopause symptoms, particularly when you are thrust into an immediate postmenopausal state. Similarly, having heard negative stories surrounding hormone replacement therapy (HRT), I was averse to considering this as a treatment option.
Three to four months after my surgery, whilst feeling quite well physically, my mental health started to deteriorate. Initially, I experienced increased levels of anxiety, which proceeded to be followed by panic attacks, insomnia and generally becoming less and less sociable. The irrational state that I was in meant that I was pre-empting everything to be very negative and it reached the stage where I had to stop working. I did not have the capacity for work anymore, I had become a husk of the person I used to be and it reached the point where unfortunately, I came close to taking my own life. Thankfully, I had good people around me, my husband was pivotal in encouraging me to seek the help that I needed. I was very fortunate to see a GP who recognised exactly what was going on and, more importantly, took the time to explain to me why I was feeling this way, and what could be done to remedy it. After discussing the benefits and risks of treatment options, I decided to start a course of HRT. Within quite a short space of time, the treatment started to make a difference and I could feel that I was heading in the right direction.
At this point, I started to wonder if it was just me, if I had been really unlucky, or if there were other people who might have been struggling the way I was. I turned to social media and was shocked at the amount of people sharing their stories and seeking help. While I appreciate that not everybody will have the experience that I had, there seemed to be an awful lot of people who were struggling. Although Menopause Support and the Make Menopause Matter campaign were not fully formed entities, I remember saying to my husband on one particular day, if I ever feel like me again, I am going to make sure that I do something to help others.
Professionally, I am a therapist, so I decided to go back to study for a while and get some formal nurse training in menopause. That way I could combine the talking therapy and the professional knowledge of menopause to help individual women going through it. Menopause Support subsequently became a platform where I could share basic information that was accessible to all.
The organisation has changed over the years, and it is now a community interest company. We still produce factual evidence-based information, but we also provide one-to-one consultations where we speak to people who are struggling to find help and advice and hopefully, we can signpost them and guide them in the right direction. We also provide education for businesses, organisations, and line managers to help them gain a general understanding of menopause and how they can support their team.
Can you tell me about the Make Menopause Matter campaign?
The national Make Menopause Matter campaign was born out of a desire to communicate everything that I had researched and been told over the years. There were so many women who were unable to find the right help and support from their GPs and there was also a lack of education amongst the general population about menopause and lack of support in the workplace.
The three aims are to have mandatory menopause education for all GPs and medical students, menopause support and guidance to be available in every workplace, and for menopause to be included in the new RSE curriculum in schools.
The campaign was officially launched on World Menopause Day in October 2018 at Westminster and by July 2019, with the help of some very committed MPs, we were told that menopause education would be included in the school curriculum in England from September 2020. We want to see this throughout the country and recently heard from Scotland and Wales that they are moving in the right direction. In the intervening time, we have had debates on menopause in parliament, workplaces are starting to recognise how important it is to understand and there has been a lot of media coverage, which is great.
Equally, at the end of last year, we saw the Menopause (Support and Services) Bill go through parliament, where the government said that they would now have a single, annual fee for those who are using HRT. As we speak today, there is no date for that to come into force, but I am assured it will be sometime this year. We also now have a government-backed Menopause Taskforce so we are definitely moving in the right direction but there is still a lot of work to do.
What are some of the key challenges or barriers relating to menopause-related care and support?
It is interesting because myself and colleagues often refer to the ‘menopause bubble’ because we live, eat, drink, breathe, all things menopause. However, we have to be really careful of recognising that while those of us who work in this area talk about menopause all the time, even with all the media exposure in recent years, for a lot of people, menopause is still not on their radar at all. Whoever you are, it is unlikely that you learned about menopause at school or had conversations with older relatives about it. We often hear from people who say they see leaflets and booklets for all sorts of things in their GP surgery, but never anything for menopause. There is a community on social media, which is growing and growing but in terms of the general population, we are just scratching the surface.
One of the things that I have lobbied for, pretty much every time I have seen an MP or a minister, is that we should have a government backed public health campaign. There are very few things that happen as part of the natural lifespan that are going to affect half the population. Historically, there has probably been a lot more information disseminated about pregnancy and childbirth than there has been about menopause. But of course, not everybody will either choose to become pregnant, or for that matter, even if they would like to, cannot. Equally, while the vast majority of people who experience menopause directly will be women, it is important to remember that there will be a small number who are transgender men as well as non-binary friends, family and colleagues, who will experience it too, and there is probably even less information there to support them.
Menopause, as a public health campaign, would serve so many purposes; it would help to educate the general public, and it would allow people to gain a better understanding and that, in turn, creates more compassion.
How far do you think the recently launched Menopause Taskforce perhaps suggests a step change in the way women’s health is acknowledged and valued and what would you like to see from this?
In the past 12-18 months, we have had two key government inquiries looking into women’s health and menopause in the workplace. It has also been encouraging to have the Menopause All Party Parliamentary Group (APPG) running too. However, in the past we have seen reports and inquiries such as the Baroness Cumberlege report which looked into several different areas of healthcare, the vast majority of which affected women, and very little has actually been acted upon. I am always very keen to see moves forward but I would like to see some actions implemented.
The key issues are clear, and it is not just because I say so, nor because they are part of the Make Menopause Matter campaign. We know that there is a problem with professional education, support in the workplace and in educating the general public. The Menopause Taskforce is due to meet every two months for 18 months so while I am supportive, I want to see an action plan in the same way that if you were a corporation, you would pull together a team and outline your key objectives to ensure you achieve the desired result.
A UK report published earlier this year suggested that as many as a million women could be forced to leave their jobs due to lack of support as they experience menopause-related symptoms at work. Can you give any examples of the challenges people face in the workplace and how they can be better supported?
Having spoken to a lot of individuals who are going through the perimenopausal stage and particularly into post menopause, there are some key things that come up. These include psychological symptoms such as anxiety and low mood, cognitive symptoms such trouble concentrating and also physical symptoms including hot flushes and fatigue. Those sitting at a desk for eight hours a day may also experience extreme vulva discomfort as a result of perimenopause. Everybody’s experience is different.
It is important to remember that if somebody is coming to talk to you about how they are being affected in the workplace it has probably taken them a very long time to pluck up the courage to do so. I often advise women to have a plan before they have that conversation with their employer and think about what has become more challenging. It might not be that everything is more challenging, but there may be certain aspects of either the work itself, being in the workplace, or even travelling to the workplace, that are more difficult. Following that, I recommend thinking about what the potential solutions might be because if you put yourself in the shoes of your line manager, it could well be that you are the first individual to ever go to them and explain that what you are experiencing is related to menopause. Therefore, if you can have some potential solutions, they can then at least consider them. Often, it is simple adjustments that make the difference.
Having that compassionate place and that space to be able to share, knowing that support is ongoing, and adaptions could be made as time goes on is important, especially because perimenopausal symptoms can fluctuate.
To give two examples, I worked with a lady who was experiencing horrendous hot flushes and had to travel on busy public transport to work. On a couple of occasions, she felt that she was going to faint, and it had really scared her. It reached the point where she felt that she could not see outside of the fact that adjustments could be made and when she came to speak to me, she was about to leave the workplace and a job she really enjoyed. We put a simple solution to her employer, which suggested that she adjust her travelling times to avoid the heat of rush hour commuting, and her employer was really open to it. Another lady was experiencing increasingly heavy periods, and this had hugely increased her anxiety. Her workstation was a long way from the nearest facilities so we discussed what would help and she mentioned that having somewhere where she could leave sanitary products and a change of clothing would be really helpful. Her employer rearranged her desk so she was closer to the loo and also installed a bank of lockers where people could keep whatever they needed to. It was a really good learning point for them. Knowing that you have that open dialogue and knowing that you have that support makes all the difference.
This article is from issue 21 of Health Europa Quarterly. Click here to get your free subscription today.