"Extremely unhappy with my management"

I attended a Gastroenterology outpatient appointment in June. 

I have genetic Haemochromatosis and was diagnosed with this many years ago however, I was never followed up after the Covid pandemic and suffer from joint pains, I waited about a year for this appointment. 

I also got a letter from a liver nurse in April explaining that they didn't think that ferritin elevation was related to iron overload or haemochromatosis due to my transferrin saturation levels, but no one has explained what it could be.

It took approximately 1 year of a wait for the appointment. 

The consultant started the appointment by explaining they would start by carrying out a genetic test to confirm my diagnosis, I was confused by this as surely they could see from my records that I had this done at the beginning of my diagnosis. I explained this as did my wife. 

Only when pushed did the consultant then begin reading my notes and find the letters. They then said very little else and began dictating notes to their voice recorder.  I was less than impressed by the blase attitude and how unprepared they were for the consultation. Considering I had been lost to follow up and how long I waited for an appointment. 

The consultant then explained I was to get a blood test to determine my iron levels etc and would write to me within 1 week to tell me the plan for my care. 

It is now July and I have heard nothing. I have been trying to speak to the consultant's secretary for around 3 weeks and only managed to speak to them after phoning every other day. 

The secretary informed me during our call that they were still waiting to input my fibrosis-4 score from the blood results that were done in June. 

I am still confused about what my Ferritin level means, if anything, and still awaiting a plan from the specialist, I am extremely unhappy with my management and feel that there isn't any appreciation for all the implications a lack of certainty in my care and diagnosis causes -  i.e getting life insurance, health insurance, to name a few.