"Felt let down"

I was admitted to SAU In Singleton Swansea last month. I have newly been diagnosed with adrenal insufficiency following pituitary surgery and adrenal crisis in December 2021. 

I didnt  feel listened to. I was scared as I felt I had symptoms of low cortisol even though I had taken high dose of hydrocortisone and felt it was not under control. 

I had not been seen by an endocrinologist after 40 hours. I called for help as I felt so unwell, the nurses called the endocrinologist team several times no one came to see me. Eventually I got to point where I could not speak and a doctor on the ward came to asses me and told me to speak or they could not help me. This was extremely frightening as I could feel myself slipping. Because my sats seemed ok they dismissed my symptoms. 

When an endocrinologist eventually saw me after being called by my private endocrinologist they gave me all the wrong information and wanted me to drop to a lower dose

I felt that this lack of care could have been life threatening and if I had not had support from a private endocrinologist over 200 miles away over the phone things could have been very different. 

I understand adrenal insufficiency is rare but it can be life threatening and more needs to be done to educate medical professionals within endocrinology as well as the broader medical teams. 

I have now waited 6 weeks very unstable with no quality of life to see a consultant as an outpatient in Cardiff in the hope my care will improve. 

I have had to updose several times as well as administer my emergency injection while waiting for this appointment. 

I also presented with possible adrenal insufficiency last year and was taken into Morriston hospital but on follow up with the consultant endocrinologist in Singleton  my concerns were dismissed and they refused to see, treat or test me further. 

My health declined further and I spent 6 months on the sofa unable to cope with every day life and struggled to get up the stairs. This pushed me into pituitary surgery privately as I saw no further options within the NHS. 

I feel totally let down and believe I was not treated correctly by the consultant for many years and I should not have had to suffer the way I have. In my experience they did not listen, are very dismissive and believe in one fit for all and unfortunately that is certainly not the case for me. I really don’t want this to happen to any one else.