Stroke. In hospital. Gloucestershire. Any experience or survival tips?

[DrGloucester]

An older family member had an unexpected stroke last week (following leg swelling post-Covid) and is in hospital with paralysis on his dominant side. Speech currently unaffected fortunately.

NHS care is overwhelmed as usual and he hasn't even seen a stroke specialist yet. A recommended private stroke specialist has a long waiting list unfortunately.

Only one visitor (same person) allowed in and we're all trying to support from the outside.

Where do we go from here? Does anyone have any experience of stroke, rehabilitation & good doctors, particularly in Gloucestershire?

Many thanks.

(Posted in chat for traffic too)

That’s bad luck. And especially difficult right now, of course.

The person I know was affected on their left side, including their speech. But after three months hospitalisation they were able to go home and gradually made a ‘good’ recovery. Permanent weakness on that side, memory somewhat affected but not disabling-ly so. Walking stick, grab-handles around house, carers, briefly. I’d say they were relatively ok for about ten years afterwards - but much less physically resilient, so succeeding health events and problems have gradually caught up with them.

Obviously your relative may have a very different outcome, for better or worse. It’s terrifying at first - and always unexpected. We learned that rest is important for recovery, and as much loving engagement as possible to prevent the patient becoming depressed.

Our NHS care was mostly fine in hospital. I’m not sure what difference paying could have made to the medical outcomes. Outside hospital it’s hit and miss and money probably does make things easier.

Thank you @LiterallyKnowsBest. Kind of you to reply. Yes the timing is poor.

Of course, every outcome can be completely different & it's the unpredictability of it that makes it so challenging.

Your experience sounds like an extremely positive rehabilitation outcome, especially as speech was involved. It's good to think about adaptations that might be needed, thank you.

Like the tip about rest & positive loving engagement

You're absolutely right, private is unlikely to change any medical outcomes in this instance. I briefly considered it because I have complex medical needs myself and did not receive any care until I chased hard & paid privately.

Thanks again

Well … Obviously speed of diagnosis and intervention, where possible, can be crucial. If that can be bought, then it’s good for that patient, less good for those who have to wait. My understanding has always been that one needs the NHS in an emergency.

Elective follow-up stuff, on the other hand … I think we’re still waiting for the off-site physiotherapy promised by the hospital - about a decade and a half later. (We arranged some privately immediately after they were discharged.)

My experience of stroke is my sister who was in her early 40s.
I’d say that time is the biggest thing they will need, even before therapy. She had speech therapy very soon after and got extremely frustrated but after about 6 months, her speech massively improved almost daily.
Every stroke is different, and the outcomes are also different. They will be very tired and want to sleep a lot if the time; the least but if activity both physical and mental is exhausting. You may really struggle to get anything out in place in the next few weeks because of the Covid situation, so it may be frustrating. However, as I said, time is what they need most x

Your relative should be receiving daily physio, occupational therapy and Speech and language. They should have had their mobility, cognition, vision, communication and swallow and their ability to complete functional tasks assessed.
Once a base line is established then the therapists will work with your relative to regain function.
With stroke patients their therapy is often completed in functional tasks, so rather than exercises it may be done by practicing getting washed and dressing.
The rehabilitation can often take weeks and months and can often continue once home with community teams.

Hope things are moving in a positive direction , OP.

(No need to reply.)

We are in a similar position. DH, 57, had a massive stroke out of the blue, on 20/11/21. Has no use of his dominant side, no speech, cognition impaired. Care in hospital was not the best, we pushed (I pushed) for discharge home as he ended up in a covid cohort. He was in a side room with no TV, no form of entertainment, and no visitors despite being terminally ill with cancer (although they did eventually relent and allow me to visit him). In the two and a half days he has been home he has improved immeasurably. He starts intensive SaLT sessions on Monday and he has been referred to a new physio team as he is too complex for the team he was initially referred to. The early days of stroke recovery are crucial to a good recovery.

Sorry for the delay in returning. I'm predominantly bedbound and my IV fluids were cancelled, so running on very limited energy here.

Much gratitude to @Soontobe60 & @Rocknrollmummy for sharing your experiences. It's so valuable to hear things we should be looking out for. Thank you for your input, I've passed all the information on to the rest of the family

The good news is he has been moved to his own room in the Stroke ward and has had visits from physios. Not every day sadly, but grateful for anything they can manage. He has a little movement in his arm too. A long journey ahead.

@bloodywhitecat I'm so sorry life is so challenging for you. I hadn't realised your DH had had a stroke as well I saw that you managed to get him home and I'm delighted that you have both seen a little improvement. Thinking of you x

Sounds as if things are challenging for you, too, OP.

But I’m glad to hear things are moving in a positive direction for your relative. Onwards and upwards …

Sorry to hear that. A close family member has recently been hospitalised with his 3rd stroke. Being moved back to rehab tomorrow. This is the treatment plan for most stroke victims, before returning home.
The Stroke Association are brilliant, I recommend getting in touch with them. They will answer any questions you have.
I hope your loved one makes a good recovery.

Thanks again for your kindness.

I'm sorry to hear about your family member @DollyD65, I hope their rehab goes well. I'll pass on the tip about the Stroke Association, thank you.