Transition from hospital to home - what was good and bad?

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
:slight_smile:

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?”

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@SimonInEdinburgh i had 6 weeks of home physio once i’d been discharged & then moved into the outpatients physio system. Like you it was less than once a week & to be of any benefit needed to be more frequent. I was motivated to do rehab myself though & looked up internet resources that might help.

I was provided 1 info leaflet in hospital in relation to driving. But as my vision was impacted by the stroke i wasn’t really able to read it.

I wish I had been told some of the symptoms I might experience. No one said about fatigue for example & how it would / might affect me. Ut was a massive issue for me but I didn’t know what it was I was experiencing.

On discharge I was simply told if you feel worse to go back. But I think a definition of what worse may look like would have been useful. I know it is different for everyone but they knew my stroke affects so a simple you might well get this or this but unless it’s very severe you don’t need to worry. I guess the danger there though is you might ignore something you shouldn’t.

They also took my word for it that someone would be at home 24/7 to look after me.

Not sure if that helps.

Ann

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I had 5 weeks in hospital and the physio was ok but a bit hit and miss! Usual problems of not enough staff and too many patients! I was not allowed to leave hospital without a care plan in place even though we didn’t want one and in fact cancelled it once I was home! I was very lucky in that my husband was happy to do just about everything. The physio came to the house to assess what equipment I would need and I had 2 wheelchairs one upstairs and one down, 2 of the “things” you stand on so my husband could move me easily, a perching stool for the kitchen, a seat for the shower etc. I cam out of hospital on Dec 2 last year and to start with the hospital Community team came out twice a week for physio then after 4 months it dropped to once and in fact my final physio session is next week. The hospital arranged for the local council to put up rails in the downstairs loo and grab rails in the bathroom plus another by the back door. They also supplied rails to enable me to get down some steps so I could get into the garden.
I realise now how fortunate I have been and I will be forever grateful to the hospital Physios.

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Hi @SimonInEdinburgh. Sadly I feel that COVID plus the cause of my stroke (RTA) resulted in no stroke aftercare whatsoever. Nothing to prepare me psychologically - I hadn’t heard the term neurological fatigue until I joined this forum, which was a light bulb moment several months after I was discharged. I had some physio during my 7 week hospital stay, but it was aimed at getting me discharged, I have never had any physio on my affected hand, I’ve had to do that myself. It really was could I get to the loo, could I wash myself whilst seated in the shower, could I manage steps. Nothing else offered. Sent home and put on antidepressants from my GP as I can only assume was risk management. No counselling, no physio, nothing to prepare me. 2 years on I’ve had to learn many things, and I battle on because I’m here, one of the things I’ve learnt is not to pin hopes on any help from any NHS entity. Sorry to put such a negative slant on this, but the only progress I’ve got has been entirely self researched and motivated.
I should mention I was never on a stroke ward, but general trauma so I get that that is not the norm. I don’t know if I was ever seen by a stroke doctor whilst in hospital as I have no memory of it.
When is a brain injury not a life changing event? When it happens along side a load of other stuff. Sorry but I am still really angry about discharging people home giving them no concept of what comes next or where to turn for help other than the Samaritans.
Apologies +++++. Julia

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They have recently decided on a much longer time frame for ATP (alteplase) to be helpful. I believe it is now given up to 12 hours later here in the US.

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Oh thats good news @DeAnn let’s hope they follow suit in the UK. Mind you the wait for an ambulance here these days is so long we’d still be outside the timeframe :confused:

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Thanks to those who have shared their stories so far :slight_smile:

It does seem that the commonest experience is one more marked by bumps in the road than a smooth journey

There are published care pathway documents that do not sound very realistic when contrasted with the contributions here and those typical of what I’ve read elsewhere in this and other forums.

Would anybody like to address the balance with an exemplary story?

Simon

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Hi Simon. I am obviously in the minority regarding transition from hospital to home. I had assumed everyone received the same treatment as I described in my earlier post. I did also have an MRI 3 months after I left but had to ask my GP about the results as didn’t hear anything from the hospital. I should have had a follow up appt with a stroke Dr 6 months after discharge but 10 months on I’m still waiting!

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Like you, I am coming up to the three year anniversary of being struck, right in the midst of a pandemic. I had a few emails from a physiotherapist and that was about it. Despite all the brain fog, mental anguish, physical impediment, and fear, I had to knuckle down and research my condition. I had an excellent stroke consultant who made time for me which made all the difference, I feel. Fortunately, I was also sent to a small hospital, which I feel I benefited from. It was still, highly, unpleasant but at least it wasn’t chaotically busy. My needs were rather specific because I craved information on cerebellar stroke but, alas, it is not a common type of stroke (hence being misdiagnosed) and so information on this was not forthcoming at the time, and indeed is not readily available now.

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I had two discharges. One from the hospital and the second from the rehab centre. Maybe we are very lucky in Bristol in that there is a dedicated brain injury unit for rehab.

Reading the other comments, I’m guessing no equivalent facility exists elsewhere. It’s considered world class apparently but seeing the other comments, might be an easy competition to win.

Neither discharge really went to plan. Getting out of the hospital in march 22 was really difficult as the nurses get getting COVID and the rehab unit would only take people if definitely COVID free.

The rehab unit had plenty of exercises and free to walk after I had gained the skills and use the exercise bike. Taught me how to cook again with adjusting for my weak side. Quizzes, activities, organised home adaptions, overall not too bad for me.
The physio told me they didn’t work on arms and hands as if they were not working by then, they didn’t bother. Is that really world class ? It’s a private business and definitely run as a money maker for someone. It should ideally be part of the NHS.

When I was discharged, realise I still knew very little about stroke. No knowledge of cpsp. Medicine on discharge was barely enough to tie in with later gp issued medicine. When you are on BP medicine, that isn’t ideal. Missed doses might lead to bad things.Felt totally on our own on discharge. Horrible feeling of what if something happens. No concept of a stroke consultant and GP, little if any help.

Had further physio at home for about 6 weeks.

It does sound like I should be thankful for the care I had but it could be so much better. The need for physio at home perhaps should be two or three years.
There should be leaflets on your type of stroke. A typical progression, danger signs. A helpline function for queries. Does anyone check your brain repair ?
It feels like we have had to fight for everything since discharge.
Good things, a charity Bristol after stroke.https://www.bristolafterstroke.org.uk/
Another charity for reduced cost physio
https://www.thebrightwell.org.uk/therapies

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