This post is a condensed version of scribblings, notes and letters written over the past year, more as a way for me to make sense of all the efforts expended to an elderly person navigate the care system in the UK. Some of the details are already growing hazy, while some, I would rather just forget. This is part of a series I broke down into smaller posts.
On a cold, sleety December evening in 2017, I spent what felt like an unending 30 minutes in the back of a windowless ambulance answering questions from a paramedic, as my mother breathed heavily and absently in the bleep filled journey. Arriving at A&E, I had to go through the same material again. Three hours of repeating the same information to first responder, paramedic 1 and paramedic 2, I was repeating this information for the fourth time at the emergency room. And three hours after hanging around A&E repeating the information again to nurse, doctor 1 and doctor 2, I went home. Only to receive a call before dawn to confirm this information to another doctor! What I couldn’t understand is why this was not one process – I understand the need to confirm accuracy of data, but this was wasting everyone’s time. A precious commodity in short supply.
After a night in an A&E staging space, a bed was found for her and my mom was admitted to a ward. I was able to speak with a very nice geriatrician who assured me all would be ok and she would be my point of contact. My mom’s good hip now needed an operation. This was the only time I ever spoke with her. Soon, I was in recovery ward with different doctors post-operation, informing me all would be fine. My mom even managed within a week post-op, to walk on a frame to the end of the ward! While hopeful for a reasonably paced recovery, all was not ok. We began to notice a decline in memory and cognitive functioning. But since the doctors and nurses rotated after two weeks, there was little continuity and the ward staff simply assumed she was just slow.
At a personal level, I interacted with very hard working, well-meaning staff who wanted to do the best for their patients. But the the structure and system, in my opinion, got in the way. I soon learned that doctors rotated every two weeks and while nurses on the ward were longer-serving, differing shifts meant I wouldn’t always find the same people at the next permitted visiting hours. And since rounds mainly occurred before we were allowed in, the chances of speaking with a doctor during permitted visiting hours were reduced. I was given to understand that all the doctors met as a team and discussed patients.
So I started taking notes and needing to brief every time I met a doctor or nurse on their rounds. And I saw that none of them really read their notes, other than the first page of her charts at the foot of the bed. Applying techniques I had learned from experience in the developing world, I kept up chasing for an update on her condition daily. It became an inside joke in the family when I was asked if I was a doctor each time I asked for an update from the doctor on duty, and after hearing a grudging, canned & vague response, my follow up questions provided facts that actually required them to read their notes! That these were handwritten extensive notes (which takes each doctor time to scribe), and there did not seem to be a way to highlight key information was not lost on anyone. In any case, I asked clarifying questions, did my homework, and tried to avoid any lapses from a very busy medical team.
The system has to deal with an inordinate volume of disparate information, a ‘high touch’ patient and family base, and is clearly under-resourced. Despite the convenient blaming of ‘too many managers’, I did not get the sense that these issues couldn’t benefit from someone throwing some money at them – whether people, or better systems & technology. Yet somehow, everyone just seems to keep treading the same path. Patients are too exhausted by their stay, and families are scrambling to deal with the aftermath – complaints are signposted to the patient liaison team, who I was given to understand, will spend more time listening than doing.
The CEO of the NHS trust under which our various episodes of care took place, was silently ‘AWOL’ for much of this year (they actually took up a post in another area for anyone willing to do a quick web search but our own local website still showed them as the primary contact). During the past 11 months, I wrote many letters, left many detailed notes, and not even once, received a written response. I’ve removed mention of names of institutions as naming and shaming will serve little purpose – I had documented sufficient information to populate a fairly damming and chronologized complaint, but doubt it will yield anything. Patient-centric ‘integrated’ care may be the official line, but from my experience, systems seem in place to support the provider rather than the patient.