"A lack of understanding of Addison's"

About: Queen Elizabeth The Queen Mother Hospital / Accident and emergency Queen Elizabeth The Queen Mother Hospital / General medicine

(as a service user),

I have a diagnosis of addisons disease. Firstly, I am very grateful to the gps and hospital staff who initially diagnosed me and definitely saved my life. I have also had mostly good experiences with gps and endos since and manage my condition very well. 

I recently (a few months ago) was very unwell with some form of stomach upset and had severe diarrhoea. This led to me feeling quite unwell and feeling like I was heading towards an addisons crisis as I could not keep my medication in. I phoned 111 for advice who subsequently called an ambulance. The ambulance arrived and didnt really know why they were there. I explained my condition and how I was feeling and they decided to take me to a&e.

When I arrived, it was clear that they were very busy. There were patients lined up in the corridors on beds. The first person who initially spoke to me at the hospital told me that I wasnt having a crisis as an addisons crisis is "extremely painful". This isn't my experience of a crisis (although I know that it is some people's) as a result, I was told i would be triaged in the normal way. Luckily my husband was able to join me at this point and could see that I was really not well, I felt like I was going to pass out.

I showed my steroid treatment card and "life threatening illness" card to reception which states that I should have been given iv hydrocortisone. This was refused. As a result, my husband injected me with my emergency injection that I carry round. I started to feel better almost instantly. I waited hours for my blood test results and before anyone was going to see me. As my blood results were normal, I was going to be discharged despite there being clear guidance that I should have been given iv fluids. I had to request this several times and felt as though this was given to me as a placebo. I did not feel on this occassion that my condition was taken seriously nor that the medical cards I carry around with me were of any relevance whatsoever. 

I have also had an experience (december time) when I had mastitis. I asked the gp at the hospital if I needed to increase my steroids as a result of the infection and for how long. The gp (very wrongly) told me that I didnt need to and in fact the steroids could help with the infection. I was very unwell for a few days and am pleased that I did my own research as I did need to double (or triple) my steroid intake to combat the infection and prevent crisis. 

I understand that the hospital staff are very overworked and have to deal with a lot of different illnesses but I feel that on both of these occasions, a lack of understanding of addisons could have resulted in severe crisis or worse had I not have taken action myself. It has left me feeling that I will not go to the hospital on the future as I will inject myself at home and hope for the best. I hope that further education could be given around how to manage addisons patients.