Hello everyone.
I’m coming up on 3 years since my stroke. it happened at the height of lockdown.
The hospital target was to discharge me as soon as possible. The definition of that was I could get to the loo. I had three sessions of physiotherapy that lasted 30 minutes each during the month that I was in and that was it as an in-patient
Then
-I was just charged with basically no understanding of what path life’s journey had been teleported to.
-The same same for my wife.
-A post discharge therapy service that was not supporting its service delivery frontline staff to transition to the new ways to deliver services in covid
I would say that that deficit has accompanied me throughout the two and a half years since discharge.
I’ve been thinking about that gap.
I wonder about your observations of your journeys?
what was good? What would have made transition to life after stroke easier / better for you, what was missing, what have you heard of and wish you could have had access to, or any other thoughts
There wasn’t much information in hospital, what was was provided was in endless leaflets, most of which had more space devoted to pictures of smiling people than useful info. The leaflets weren’t delivered in a staged, incremental, timely manner that I could absorb what they meant. They didn’t join up. I didn’t have enough context and nothing filled the gaps. They were a few disjoint jigsaw pieces without the box lid picture. Another way of describing them is as rather large pieces of confetti
what would have been useful would have been answers to what the journey could look like, who are the people involved in it, which services exist, how do I gain access to them, how do I swap who’s delivering the service if I still need it but they’re not meeting my needs, how do I navigate financial, legal, etc,… hurdles. None of which was actually provided - even if covid was a disruption it shouldn’t have caused an abscence in the provision of the information, shouldn’t so intrusively prevented the provision of physiotherapy, likewise the connection to occupational therapy, etc. Speech and language was covered in hospital, cognition was not.
Physiotherapy was my biggest need. It was less than once a week and simply a video call. It covered nothing about motivation and application it was just Latin musculoskeletal and movement terms - lots of “pronation” no vision of holding cutlery - looking back to evaluate against what managed service should provide it was hugely unprofessional
I am going to provide some feedback to my local health authority (again! I’ve tried twice already)
I’d like to be able to give some examples of what good looks like - some of you who posted bits of story that I’ve read and thought You were lucky and I wish… - so my question to you is
"Can you paint a word picture of what the elements of that journey from stroke through hospital and then transition to home and recovery should ideally have in it?”
