"Disjointed Care"

After a first unexplained seizure a few years ago, I had many more this year, a few requiring A&E visits, 2 admissions, and the disjointed care and long waiting list almost cost me my life recently. 

Suddenly had increase in frequency and was admitted twice from A&E to Ward 50-53. The treatment in A&E was dismissive, but the communication and disjointed care meant that I was admitted twice from A&E for what was said to be overnight observation. Both resulted in a 5-day stay in Ward50-Ward 53, the second admission I was transferred to a different Ward where my experience was a lot better.

In Ward 50-53, I’d have little to no information, different doctors every time who had a different story every time. I understand it’s not a Neurology department, but I’d had a label of dissociative seizures added to my record without knowledge, with no discussion or mention of this by any doctor. No imaging or EEG to confirm. I was started on anti epileptics, on a low dose titration plan, that would amount to an ineffective final dose. Referrals were supposedly made to first fit clinic, but once again, my medical record states otherwise.

It was my second admission, in the second ward I was transferred to, where I received much better care, and was guided in a better direction.

No MRI or EEG, but better idea of what was going on and given additional treatment, and from there I have the first fit clinic referral recorded. This was in June.

No contact from MRI or neurology at all, little guidance or help. I was continuing to have less severe seizures, but they did continue. Letter for MRI appointment did come through - I ended up not being able to attend and couldn’t contact the service, due to being intubated abroad for status epilepticus. whilst abroad on what was supposed to be a 5-day holiday, I spent 22 days bouncing between 3 different ICUs with prolonged seizures, 2 instances of status epilepticus requiring intubation. EEGs showed interictal epileptiform activity. It was explained to me that the medication I was on wasn’t sufficient, and that it was likely my epilepsy was worsening due to being under treated, and possibly dismissed due to an initial diagnosis or label on my record as it being dissociative.

I feel the disjointed care, lack of communication between teams, misinformed decisions, long waiting time for secondary care, and the lack of guidance I was receiving from Glasgow Royal whilst inpatient and in A&E, as well as the lack of communication from Neurology, significantly contributed to the decline in my health and ultimately the events of my holiday.

I’ve had many experiences with Glasgow Royal, and have to say that this would be my only majorly negative experience. A&E staff are mostly lovely, and Ward 8 I received excellent care and was well looked after, despite being a very different case to the wards specialty. 

I’m sharing my story to highlight the need for a review of streamlining and pathways from A&E, not making assumptions, the need for improvement in secondary care waiting times, and just more guidance for patients before discharge where they ultimately wait in the dark until they are seen.