"Unable to get the emergency injection kit I need"

I was quickly diagnosed with Addison's Disease/ Primary Adrenal Insufficiency after being referred by my GP which I am grateful for.

Since then, I've struggled to receive the emergency injection kit required for my condition. I was promised it would be prescribed by my GP once the consultant had authorised it. Weeks later, this piece of information was missed out of the GP letter.

I've left a voice mail to the endocrine secretary. Chased this a week later to find a letter has been dictated to me still refusing me access to the emergency kit because I've had no training. I've been told they are in breach of NHSE commissioning guidelines by the charity and the endocrine society advice.

Stress can cause a crisis and this situation of having to battle to get emergency medication is causing me stress. The advice is go to hospital if you have a crisis. I'm home alone all day, I go out running in the hills. If I collapse with a crisis and can't call an ambulance or an ambulance is 3 hours away from me, how do I survive?

Liverpool University Hospital have created training videos and ensure all their adrenal patients have the emergency medication they need. My suggestion is that this practice should be rolled out across the country. If you can't make your own video, share theirs and provide patients with what they need.