"Why is it such a fight to get treatment?"

About: Stobhill Hospital / Gynaecology

(as the patient),

I attended Stobhill Menopause Clinic in September 2013. I wanted to get support to manage Early Menopause. I entered early menopause at age 29 after surgery and lets just say it was like the sledgehammer effect. I would never have believed how much early menopause could have impacted day to day life if it wasn't for the fact I have now lived with it for 4 years. Yes there are the sweats and the flushes which in themselves are debilitating when you are 29 years old but for me the most difficult symptom's to live with have been the increased levels of anxiety and depression. I now know from running a support group for over 150 women managing early menopause that that these are extremely common symptoms and are very debilitating. I also know from research and lived experience that they are linked to low levels of estrogen in our bodies when we would normally have high levels at a young age.

I consider myself to be very well informed in this area, I have thoroughly researched my treatment options. I have spoken at Womens Health Conferences in Glasgow and London about my hormonal experiences and I have had an article published in Menopause International Journal. I am not stupid and do not wish to be treated as if I am. I consider myself to be the expert in my own life - and would like to work in partnership with the experts in the field of medicine to optimise my quality of life. I am very active in self-managing my condition as it's a long term condition that I am going to have to manage for at least the next 18 years until I am 'normal' menopause age.

Therefore I have taken a considerable amount of time over the last 4 years to research treatments to support me in managing it. I have an excellent GP who has worked with me to try to find a correct balance of hormone replacement therapy to stabilise my symptoms. This has included trials of a few antidepressant medications. These however do not work for my symptoms as my symptoms are directly linked to my low hormone levels. I have a hormonal imbalance in my body the same as someone who has diabetes or thyroid issues - so why do I find it so hard to access appropriate treatment? At the appointment I was requesting to access a different type of hormone replacement therapy that I was aware was offered via the clinic and I feel would help me to optimise my quality of life. I felt however that the doctor was more interested in expressing her own opinion on the use of HRT and was not interested in listening to my lived experiences of life with and without it over the last 4 years. I however continued to strongly advocate for my rights to access treatment and was told someone would contact me within 2 weeks.

I'm still waiting in December. What is extremely frustrating for me is the apparent lack of understanding around the importance of treatment for women like myself. It has been proven that the benefits of taking HRT greatly outweigh the risks for women like myself. The British Menopause Society issued a consensus statement which includes the following "Estrogen-based replacement therapy is the mainstay of treatment for women with POF (premature ovarian failure - early menopause) and is recommended at least until the average age of natural menopause (52 years in the UK). This view is endorsed by regulatory bodies such as the Committee on Safety of Medicines (now the Commission on Human Medicines) in the UK. No evidence shows that estrogen replacement increases the risk of breast cancer to a level greater than that found in normally menstruating women and women with POF do not need to start mammographic screening early unless other risk factors are present, such as family history" So why is it such a fight to get treatment?

Sometimes I feel like it is because my main symptoms are mental health symptoms - these don't seem to some as important to treat. Well they are important to me and I will continue to advocate for the correct HRT to optimise my quality of life.

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Responses

Response from Paul Cannon, Head of Administration, Acute Services Division, Greater Glasgow & Clyde NHS

Dear Dazzle

Thank you for posting to Patient opinion with your comments. We have members of staff reviewing these issues but in the meantime it would be useful if you could provide us with your details by e-mailing paul.cannon@ggc.scot.nhs.uk in order for us to further investigate.

Kind Regards

Paul Cannon

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Update posted by Dazzle (the patient)

I was contacted by NHSGG yesterday and given the chance to explain my concern. I'm not convinced that the person I spoke to had access to the most up to date information and guidance on early menopause either. This person explained that the Dr may have been reluctant to provide treatment based on 'the risks' associated with the treatment. I pointed out that it has been proven that there is more risk to someone my age NOT taking HRT (British Menopause Society & International Menopause Society), and repeated again that I have thoroughly researched this area. I also mentioned that I am part of Menopause UK Network, and we have been inputting into the creation of the new NICE Guidelines to help ensure that women's voices and their lived experiences are being heard. The initial scoping has just been completed and we will be playing an active role in the development of these guidelines. The person I spoke with questioned the validity of various pieces of research, stating they used to be an advanced nurse researcher.......and questioning if I was and I quote "medically trained"

Here is my point - it has absolutely no relevance if I am medically trained or not. I am living with this condition day in and day out and have been doing so for the last 4 years. I also happen to be someone that I would deem to be well educated both academically and more importantly in valuable life experience.

This is the best way I can think to compare it to try and get medically trained staff to start to LISTEN to their patients living with long term conditions:

Before I had children I worked in early education, I spent all my days working with children. I thought I knew all there was to know about children. I read more books than I care to remember whilst I was pregnant with my own children. I considered myself to be an EXPERT when it came to children. BUT - and it's a big BUT.........when I had my own children I suddenly realised no amount of education, experience or books could have prepared me for the real life experience of actually living with children 24/7. Do you see what I mean?

So Dr's and other medical professionals I am asking you from the bottom of my heart - please start to listen to and work WITH the people you are supporting who are managing long term conditions. Yes you are the expert in your medical field and we respect you for that. However people like me who are living with a long term condition - many of us are experts in our own lives. Please respect us for that. As my good friend Chris Young would say "Walk a mile"

I'm unsure how I feel about the outcome - I will wait and reserve judgement after my next appointment. However I do feel strong and assertive, as I have educated myself well with the fantastic support of my GP and my peers. Knowledge is power when applied - and believe you me I will be using all my self advocacy skills and knowledge to continue to fight for my right to access good treatment. I'll keep you posted;)

Oh and if we have ladies reading this who would like some invaluable peer support to help them manage Early Menopause please visit Daisy Network, Menopause Matters, Hyster Sisters, Early Menopause Support UK on Facebook:)

Update posted by Dazzle (the patient)

Today I revisited Stobhill Menopause Clinic. What a difference. From the minute I walked through the door to the minute I left I felt listened to by Dr Perera. Dr Perera spent time asking me how my early menopause affected my life (including the awkward questions that many Dr's either are afraid to ask - or to embarrassed to ask). We then spent time discussing different treatment options.

Dr Perera clearly outlined the pro's and con's of each treatment regime and asked my thoughts on each. At no time did I feel that he was imposing his own personal beliefs around HRT upon me. We agreed to proceed with a trial of a new form of HRT which will be monitored in partnership with myself, my excellent GP and Dr Perera. If this does not work I know without a doubt that Dr Perera will help me to move forward regardless.

Thank you for listening, understanding and working with me. And I believe I taught Dr Perera something today too - that I'm sure he will pass onto the ladies he supports.

Thank you NHSGG and thank you Patient Opinion. And NHSGG please do not let this excellent much needed resource for younger ladies in menopause be swallowed up in budget cuts. The right treatment can make such a difference to quality of life.

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