Yesterday I had my third and I will sum up the experience in one word: horrendous.
I was at the TC at the time and I felt a seizure coming on. I tired to make it to sofa but didn't quite make it and fell to the floor hitting my head and hip on the way down. A prolonged status seizure then ensued so a call to 999 was made.
Often the paramedic crew that arrive have met me at lest once and so will know what I need and will give me IV diazepam to bring me out of the seizures. This paramedic crew had come from Scunthorpe and so had never met me or know my medical history or needs. The minute they heard 'non-epileptic seizures' they decided on 'no course of action' other than the take my vials (blood glucose levels, blood pressure, temperature, pulse and oxygen saturation levels). In my semi conscious moments I desperately tried to communicate about my medical booklet which has a paramedic care plan in stating that I need IV diazepam; this was eventually found but non of the stated care plan was followed.
By this point I was gaining a little more consciousness but I was still having tonic-clonic seizures and constant myoclonic seizures.
By the time we got to the A&E department it only went downhill from there.
I was in a little cubicle in the back of beyond. I was in and out of tonic-clonic seizures and was having constant myoclonic seizures but there was no one doing any form of observation on me. (Even though I'm unconscious during my tonic-clonic seizures I know from my body when I've had once - firstly because I can feel it coming on (called an aura) and secondly because I have lost a piece of time and in my whole body aches and is is spasm). When the nurse came to collect a piece of equipment I managed to verbally say to her that I was still having seizures and that I was in a lot of pain; her response was to tell me "no, you're not having seizures" (?!).
Upset, and frustrated at a) being in A&E again and b) my so far "care" I called my care agency's nurse as my Dad and step-mum where both at work. Praying my nurse would pick up she did and I just burst into tears. She asked me where I was an I managed to say "in A&E" - she's fully aware of my previous poor care experiences in A&E and the issues I have when I'm there. She arranged for one of my carers to come and sit with me to keep me company, advocate for me and give me assistance with anything I needed help with and she stayed on the phone with me until the carer arrived.
I waited in pain for the Dr to come, I was told I couldn't have my own pain relief until I saw the Dr but I was in to much pain to take that advice so I took some of my own co-codamol.
The Dr was as helpful as a chocolate teapot. She barely listed to a word I said when I tried to explain my illnesses to her and the treatments that usually help me when I've been in a similar situation. Plus the fact that I'm waiting for tests to rule out or rule in epilepsy in the hope that she would take my seizures more seriously. The pain relief she offered me for: a subluxed hip, two dislocated shoulders and a throbbing head was... two measly paracetamol tablets to which I point blankly told her was absolute ridiculous. She refused to give me any IV medications despite the fact that its in my notes that IV is the preferred method of drug administration for me in acute settings due to my slow absorption of oral medication. She refused my request for any stronger pain relief (despite the fact that at home I have oramorph - I had some one me thankfully which I took; I did ask if I could take to which she said "if you want to"); she refused my very polite request for IV anti-sickness (despite being sick from the pain I was in) and IV diazepam to bring me out of the the seizures I was experiencing; I explained to her that I know my body and when my seizures get to this point the only thing that will bring me out of this episode would be IV diazepam, and said that they would "monitor me" - but not once did anyone actually come and do any monitoring and each tonic-clonic seizure I had and my carer reported to the nurses and not once did anyone come then either.
After a while of ongoing seizures and pain the senior consultant came in. He basically said that I was never to have IV diazepam again in this A&E department and that he would be putting this in my records. I challenged this and asked why and he said "the risk of respiratory distress was too high" I replied that I had had IV diazepam numerous times and never encountered a problem. I then challenged him and said "is this because my seizures are non-epileptic" to which he replied "yes".
Far too often I have found that non-epilecpitc seizures are see as 'pseudoseizures' and Functional Neurological Disorder are seen as a mental health issue rather than a physiological neurological issue and patients are treated lesser than compared to those with epilepsy or other neurological illnesss such as M.S. or Parkinson's (despite the fact that FND can be as debilitating as both of these illnesses).
I felt like screaming at him and when he left the room I burst into tears. I just wanted the pain and seizures to stopped. My carer just gave me a big hug and comforted me as I cried. I cried out of frustration - I HATE my seizures, I wanted them to stop, I NEEDED them to stop, I was in agony, each myoclonic jerk suxluxed the joint and this this had been going on for hours and it wasn't t going to stop and I needed help and I knew my body more that those Drs. I knew what treatment I needed but they where the ones with he prescription pad and I felt like my pain and distress and and myself was nothing to them.
Eventually they gave in and prescribed me a 5mg diazepam tablet. The nurse that brought it was the ward manager who knew me as my care agency nurse had been in contact with her a few times trying to sort this A&E care plan out. I said to the nurse how I felt and that this tablet wasn't really going to to do much and that normally I have 10mg IV. I expressed my distress and how I felt I had been treated by the Drs that he seen me that time and my concern about this blanket ban on me having IV diazepam as surely I should be assessed on an case-by-case basis? We discussed my need for a prescribed care plan and that I needed my neurologist in London's input on this (so I've got on my to-do list is email him ASAP).
I went home from A&E still having seizures and even today my myoclonic seizures have been worse than usual; the stress from yesterday hadn't helped but I've kept myself topped up with pain relief and diazepam which seems to have helped.
Before yesterday I hated going into A&E, but now I feel like no mater what I am NOT going to allow myself to go through that again. If the paramedics do give me IV diazepam for my status seizures then all I will do is self-discharge myself from A&E - I have (sort of) sufficient pain relief at home and I will have my own bed and I can do what I need to do to be comfortable and my Dad and step-mum are there to care for me. I won't have the distress of A&E; of not being understood or listened to and I will not put myself through that ordeal ever again. I know this probably not the most sensible thing to do but I just can't handle inadequate, ignorant, uneducated care again.
I've found this post really hard to write; I was going to keep it short and just write that I had a horrendous time in A&E and that the care was non-existent. But I wanted to share my story. To say how poorly treated I was yesterday. (On a side note I'm not surprised our hospital in is special measures; it has been for some time.)
My gratitude goes out to my carer. She gave me the care that I needed when I needed - something I often wait a long time for as there simply isn't the staffing to do those tasks.
*** NB: all views are my own ***