Sorry this turned out to be an unexpected rehash, so it's long. But basically who do I go to to answer questions that have been buzzing around my head for a while now regarding a review of my dad's care in regards to a brainstem stroke, from the delayed 999 response ("only" 90 minutes) to the seeming inactive treatment during his first night on A&E and how this affected his outcome.
The long ramble I typed before I worked out what I was asking and surmised in the above paragraph 😉😂 is:
My dad had a brainstem stroke last year. He survived but is now paraplegic, severely reduced speech, requires 24 hour care and is in a rehabilitation care home. Its unknown if he'll ever be able to return home. He's late 60s and was previously very active.
Although generally his care has been exemplary, I have a niggle about the response received to begin with and whether had things been handled differently could his outcome have been better.
I got to him after a panicked call from my mum (a nurse of 30+ years experience) and made the 999 call. He didn't have obvious stroke signs but ultimately collapsed on the floor and lay there for 90 minutes. It was only when, through desperation at being told "you're high priority, help is on its way" for 85 minutes... I lied and said he was having chest pains that the crew was there within minutes. Until that point the call handler was asking about dad's diabetic history and if he had had his insulin... Meanwhile my dad was crying and begging me to get him help as he was convinced he was dying. Crew were lovely, but they said it wasn't a heart attack as ECG not showing but some signs that something wasn't right and no obvious signs of a stroke.
Taken to A&E, spent a night alone (covid restrictions) and very poorly but Dr's didn't know what was wrong as initial scan showed no sign of stroke.
The following morning at 5am I got a hysterical call from my mum to take her to hospital as she'd been asked to get there ASAP. Mum and I arrived to be told his condition had severely deteriorated in the past 2 hours. We sat with him and it was horrendous. He knew we were there, was conscious but was choking as didn't seem to be able to swallow and was slurring speech. Dr still not able to diagnose, even after a 2nd scan.
As we sat with him he deteriorated in front of our eyes and suddenly there was a rush of HCPs around his bed, we were escorted out as a consultant told us through the mayhem that he was about to arrest if they didn't intubate him. We were told "if he stabilises he's going to be blue-lighted to X neuro hospital" and that "he is very very poorly, please prepare yourselves". (I genuinely came out of the situation for a split second at the consultant's use of "blue lighted" as until then it was something I had only seen used on Mumsnet!")
Of course the reprieve was over quickly and I don't need to explain how traumatising the unfolding situation was.
Dad wasn't stable enough for a transfer for 6 weeks. Overall he spent 3 months on ICU, then a bit of backwards and forwards to HDU, back to the ICU and so on as he overcame various setbacks. Eventually this year he finally got to the rehab home (via a stint on the specialist neuro hospital ICU and rehab ward) where he will now stay until he's fit to move to the next, permanent stage, of his recovery.
My issue, as grateful as I am for the care and dedication from the NHS teams involved in his care..... would a faster response from the ambulance have helped? Should they have/could they have treated him for a suspected stroke in A&E and medicated accordingly "just in case". They knew pretty quickly it wasn't heart, they knew it was neuro but couldn't pinpoint it. They bounced potential diagnosis around for 3 bloody weeks. What if they'd treated him for a stroke that first night in A&E rather than just seemingly watching him to see what happened.
Maybe they did everything they could and the communication was lost in the urgency of the situation and the devastation and shock we felt.
It's a year since it happened and we've gone from living half hour to half hour, hour to hour, day to day, week to week, month to month. Now we can finally see a glimpse of the future, albeit a very different one than we could ever have imagined and I think now that the intensity has died down, I'm starting to process everything (I have PTSD from another incident so I am aware that I need to process it, I feel a bit like I'm teetering on the edge PTSD-wise and am attempting to keep an eye on it)
My mum is really struggling right now, she's had her life turned upside down - not quite a widow but basically living as a lone woman. I think a review would help her enormously. Especially as she had the insight of 30 years nursing but was helpless to stop this or to make him better.
If you have got this far, thanks for reading and I appreciate being able to get this out of my brain where it's been bubbling around for a few weeks.