"Poor care at endocrinology clinic"

I’ve been a patient of a particular endocrinology consultant at Stobhill Hospital since 2022. I have 6-12 monthly appointments. I’ve never met my consultant. Instead we have telephone appointments and where I live the phone signal is poor. I’ve requested in person appointments but this has been denied. 

I find her very dismissive of my concerns and patronising in how the consultant speaks to me. I feel my endocrine condition is not well managed nor do I feel my consultant cares. 

At my last appointment, I had a poor phone reception so the call cut out. My consultant tried to call back twice. They heard that I asked questions but started to speak but didn’t answer them. They proceeded to give up on the appointment and sent me a letter for another appointment 8 months away.  

I have unexplained adrenal insufficiency. My endocrinologist has attributed this to steroid use for my asthma. However I’ve had a senior respiratory consultant and numerous respiratory nurses and GPs tell me this is ‘highly highly unlikely, if not impossible’, in the words of the senior respiratory consultant. However my endocrinologist dismisses their views and won’t explore other options for why I have adrenal insufficiency. 

Furthermore, when I was three months pregnant the endocrine consultant told me they don’t treat pregnant patients and they will see me / talk to me again when I’m three months postpartum. I was then left pregnant (which is a high risk time for adrenal insufficiency) until I finally got referred to the endocrinology team that specialises in obstetrics when I was seven months pregnant. Here I saw the consultant managing the team who was very surprised that my usual endocrinologist hadn’t explored why I have adrenal insufficiency and hasn’t sent me for an MRI and he agreed it is unlikely due to steroid use for asthma. When I saw my usual endocrinologist again and raised this with them and they disregarded my opinion. 

Being on continual steroids for my adrenal insufficiency has massively damaged my immune system. I’ve gone from being ill zero to two times a year to being ill twice a month. I’ve just finished four courses of antibiotics over the last five weeks. I’ve also gone from needing oral steroids for my asthma once in the last eight years prior to diagnosis to about once every three months post diagnosis / treatment. I want to tailor off my adrenal insufficiency steroids but she won’t discuss this. 

The consultant did a test to assess my adrenal insufficiency (the synacthen test) came back with a poor result (I don’t know the level as she never tells me) and she looked at my notes and attributed this to me being prescribed steroids for my asthma recently. If my consultant read the notes more thoroughly or spoke to me they would have learned this was my emergency supply being replenished as my current pack had expired. I then phoned the secretary to inform them of this. I was told the test would be redone but it never was and there was no follow up despite my levels being low. That was over eight months ago. 

It is infuriating that I raised these concerns with them from the beginning and even when I had senior medical specialists expressing concerns they still don’t take the concerns seriously. 

I want to understand my condition better but I feel the consultant never takes the time to explain things to me and uses medical terminology. I feel like I am being rushed to get off the phone call.