"Complex Patients"

After a serious illness when I was a teenager, I have been left with long term health issues. One being a long term tracheostomy.

Until recently I had the most amazing consultant, who had been my consultant for over 20yrs, and with myself having some very complex medical issues with my airway plus swallowing I had always felt safe & cared for under this consultant.  Sadly for me this consultant retired. 

I have been having some issues with pain & swallowing so I was referred to a new ENT Dr, who was nice, understanding and listened to my concerns. I was going to need further investigation for them to get a full understanding of my situation and I would hear from them. 

Over a year or so passes and I received an appointment letter to go and see a different consultant. I attended the appointment but I'm surprised at the lack of knowledge of my past medical history that the Dr knows, as they were talking about putting tubes down my esophagus to dilate my swallow - which if they had any knowledge of my past medical history they would of known that this procedure was impossible to perform on myself due to past medical trauma in that area and not to mention placing any tubes down my throat/gullet/esophagus is dangerous as I have been told by my original consultant & other ENT consultants in the past.

So I was a bit standoffish with this consultant, I stated that I thought I was there for another reason (I had requested the possibility of a skin lined stoma) so I could take my tracheostomy tube out at nighttime without my stoma closing over, hopefully lessening some of my pain. I was told by the consultant that they didn't understand what I was requesting & my terminology of procedures was not the same as theirs. I know myself a skin lined stoma is possible as I have contact with other tracheostomy patients who have one but the correct terminology for this procedure is simply a permanent tracheostomy, which I don't know if I have already?

The consultant then said they would like to look at my larynx, I said they could but didn't see any point in them doing so as I already know my  vocals are paralysed,  it's the reason I have my tracheostomy. As the appointment was coming to an end, the consultant made a comment that maybe my pervious ENT consultant should have tried to fix my issues years ago & I wouldn't be like this today. 

I left this appointment with my husband feeling absolutely distraught & angry. I feel like this new consultant took no time before my appointment to look at my past medical notes & disgusted they made the comment about my past medical care. 

Of late I have been struggling immensely with my mental health, struggling to get Dr's to understand & to be heard has left me feeling so depressed and sadly having suicidal thoughts. Struggling to see how I am meant to see a good happy healthy future for myself when I can't get anyone to understand how all these health issues are impacting my life. 

I have since been in contact with my Tracheostomy nurse , who knows me and my medical conditions very well & thankfully after an appointment with them today I feel my care is in the hands of people who understand what is going on with me and my medical conditions. I will now be contacting my nurse for any ongoing problems I might have. 

I have for now declined any medical procedures to be done as I no longer have any faith that Dr's know enough of my medical history to carry these out safely.