"Lack of communication"

I was referred to the Endocrine and Diabetes Clinic in January, by my GP, after a blood test revealed some anomalies.

In April I got to see an Endocrine specialist. At this appointment the specialist told me that she was sending me for a brain scan (MRI) to look for a tumour. She also gave me some blood test forms and had me make an appointment for 6 months later (end of October). I was to distracted by the fact they suspected a brain tumour to take any notice of how long it was until the next appointment, but, I thought, if the results are bad then the appointment will be brought forward.

I subsequently went to see my GP and discovered that my MRI revealed I had microadenoma. My GP contacted the Endocrine unit on my behalf and was told they would contact me to discuss what happens next.

They never did.

I contacted them and left a message on their voice-mail. They did ring me back but only to say they would contact me after they had had a meeting to discuss the results.

They never did.

I made another appointment with my GP in the hope that they had been in contact with them. All he had was a FAX that arrived a couple of days earlier asking him to prescribe me cabergoline.

It is now July and I still have not heard anything from the Endocrine unit.

Here are a few basics that it would have been nice to know (there is more):

1. What is my prognosis?

Wiki and the NHS website say that there is roughly a 1 in 6 chance I will die within 5 years.

2. Are there any activities I should avoid as a result of the tumour?

I can not find anything on the internet but it would be nice to know.

3. Are there any symptoms that I should look out for that would indicate it was getting worse?

4. What side effects can I expect from the cabergoline?

According to wiki it can be anything from angina to hallucinations and depression but is dose dependant.

5. What is my treatment plan?

5a. What do you hope to achieve with the cabergoline? Over what timescale?

5b. How will you measure success or failure?

I find the lack of communication and complete lack of any thought of involving me, the patient, in my own treatment to be astonishing. It is because of this that I went to my GP last week and informed him that I no longer wished to be treated by the Royal Liverpool Hospital. He has now referred me to a different hospital. I realise that it might well set back my treatment as the new clinic will have to catch up on my condition, but at least I will get some answers nearly 3 months earlier than if I had stayed with the Royal.