Patient Opinion is an excellent vehicle to exercise your self advocacy skills - it can get your voice heard and also let others know that they are not alone in the trials that they face. It is also an excellent way to give good feedback - something that isn't given often enough. (reminds me to post about my wonderful GP)
I continued to chase up NHSGG about this appointment and lack of follow up, and I did eventually receive an appointment letter on Friday. I also received a response via patient opinion that day. Yesterday I took a call from a lovely lady who asked me to explain to her my frustrations. I explained that firstly it was disappointing to be told that someone will be in touch in a few weeks and then have no response for months, regardless of chasing it up. She agreed this wasn't good practice.
I then explained (as per post on PO) that I felt that the professional who dealt with me was imposing her own personal views on HRT upon me rather than fact. Not having been in the consultation - she couldn't comment which I understand. However this is when things started to go a tad downhill.
She then asked me to understand 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. She questioned the validity of various pieces of research, stating she used to be an advanced nurse something or another.......and questioning if I was and I quote "medically trained"
SO 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 or our friendly peer support group on Facebook
