The story so far is that I had been to see the dietician with a largely unsuccessful appointment. I had been having trouble getting hold of my consultant in London and have been declining in health quite rapidly.
On Monday I went to see a Dermatologist recommended to me by people from a support group who have a similar disease to me. I went privately to see him because I could not wait any longer as I feel right now I am in quite a mess physically.
I want to quickly answer people who ask why I don’t go and sit in my MPs office armed with all my notes. The fact is I am practically bedridden at the moment and extremely immunosuppressed. I am not in a state to be out staging any sort of protest though believe me I wish I could. If I pick up a cold even right now it is serious, especially with the level of my white blood cell count which is not being managed. I do have all of my information in a pack, all my letters and notes and I go to all these appointments as well prepared as anyone can be. I document everything that happens I have photographic evidence of everything, which has proven necessary with a lot of doctors I have seen, they have to see it to believe it.
Anyway that is side tracking. I went to Liverpool full of hope that this doctor would be the one as I had been told how amazing he was. He called men and my mother who came along into his office up a big flight of stairs and walked off in front, I was struggling but he did not wait for me so we had to go looking for him standing at the door of his office. It wasn’t the best start. I sat down and he asked me about my health problems. I gave him my referral letter, supporting diagnostic letters and I showed him my lists of symptoms and album of photographic evidence on my ipad. He kept saying wow and how very interesting it all was. I was so hopeful that he was taking it on board and that I would finally get to see someone who wanted to think outside the box and help someone who isn’t just a textbook case.
He began by telling me I had brought some very impressive photographs along, but what did I want from him? I was kind of taken aback, so I explained (after already explaining my situation to him) that the person prescribing my medication was uncontactable, I am vomiting several times a day, losing blood, fainting, getting fevers, swollen glands, sore throat this is all on top of a plethora of other symptoms and on top of my existing ones. He laughed. I had to ask what was funny and he replied nothing, I’d just come along and showed him all of this and knocked the wind out of his sails, to quote him. I told him I live this every day and he did another laugh under his breath. I asked him not to, that this is my life.
Things took a very strange turn in the appointment. He said he was only a dermatologist and didn’t deal with my kind of symptoms, even though I had been recommended to see him by people part of a foundation set up for people with similar issues. He flat out lied to me that he didn’t work with a dental doctor that I had already been given information about from people who see him. He seemed gobsmacked that I knew and relented and told the truth when I presented him with this knowledge.
In the letters I took along he started name dropping my ENT doctor by his first name and the behcets doctor who caused me to have a huge breakdown, put me through a lot of unnecessary tests only to say out of the blue he wasn’t going to see me anymore despite promising to help me with some form of treatment. He told me he would not get involved with me because they were his friend “Rob and Andrew” and there was no way he was stepping on their toes by seeing me. I told him that was the most unprofessional attitude I had ever heard, I mean, what kind of doctor decides he won’t look at a patient properly because he’s mates with doctors I had seen previously? I said personal relationships should not come into it. He started putting his head on his desk like a mad man. My mother and I looked at each other in disbelief. He said he wouldn’t get into an argument about that, that they were his friends and colleagues and he didn’t want to upset anyone. I told him I was not arguing, merely discussing my case, that I did not care for his friendships I cared for getting better and that by all means he could blame me for approaching him, why should I care if I hurt a doctors feelings by getting another opinion?
After shaking his head for a long time and laughing to himself and spending a great deal of time stuttering he asked my mum what she thought. She said if it was his child what would he do if he was sat in her position. He had nothing to say and just kept repeating how nervous he was and how complex I am. He out of the blue said to my mum that actually he couldn’t do that because if he was in her position he would be irrational too. She hadn’t even said anything at that point, only affirmed the bad experiences I had conveyed regarding his “friend Robert the Behcets doctor” (or the Prof to the peasantry like me).
He said again what did I even want from him I am clearly being taken care of properly (when I spent over a month in a critical condition trying to get hold of my consultant in London – apparently this is ok). I asked if he could at least help me with meds, stop me being sick or something as I am slowly dying I can feel myself deteriorating. He said that was better than him taking me off the meds and me having a flare up and dying from that quicker. I was so angry but I knew I could not have a go at him.
He again told me that he does not deal with diseases like mucous membrane pemphigoid and pemphigus as these aren’t skin conditions. He even relented to take some blood tests of his own and a skin graft from normal skin to prove it’s not a skin condition, even though external skin is affected on me too and I have a letter telling me my illness in black and white. A quick google will tell you mucosa is part of the skin so why he was lying I have no clue http://www.myvmc.com/anatomy/oral-mucosa/
I fought back with facts, and after stuttering his way through he just stopped and said “you’ve lost me”. Me and my mum looked at each other in confusion. I quoted back to him the part where he said he wouldn’t touch my medication and he wouldn’t treat me for fear of a backlash. He said I just made him nervous with my complexity he didn’t mean that, but he was just very very nervous. I said I would sign any form in the world to give him complete freedom of responsibility if anything went wrong, that I just need to do something rather than sit here and allow myself to go downhill further.
The appointment was the worst I have ever had I think and that is saying something. I have never had anyone laugh so much, lie so much, stutter so much or be so plainly odd because his friends might not like something. When I mentioned to him that when his dear friend “Rob” from the Behcets centre booted me out with no help so kindly this got me to actually see the person higher up than him, his boss so to speak, the guy went white as a sheet. Apparently name dropping someone he at first “never even heard of” but then turns out to be his best mates boss makes a difference in healthcare.
To summarise. Telling someone who is really sick that yes they may be dying slowly now but its better than not bothering to try anything new that could actually work, in case I die faster, is not nice. To bring personal relationships into a consultation is beyond appalling conduct. I am disgusted. I might be more complex or severe than his other patients but being fobbed off in this manner is EXACTLY WHY I am so poorly.
Then a miracle happened. On Tuesday 8th December 2015 I did my daily routine of keep trying London and hope I get through and SOMEONE ANSWERED. I cried down the phone and begged them to please call me back. She said that my consultant was in that day and she would definitely speak to her. It got to 4.30pm and I was scared I wouldn’t hear back, then I got a phone call. For the first time in over a month someone had spoken to my doctor and she wants me in the next clinic. Which is tomorrow 9am Friday 10th December 2015. So midnight tonight I start the journey to London. Number one agenda is get contact details directly to my consultant! And obviously sort out my medication and hope to god I start improving or at least reach a plateau from this sharp decline.