Stroke. In Hospital. Gloucestershire. Any experience & 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

Sorry to hear you’re relative is unwell.
In my experience you should focus on speaking to a good Occupational Therapist. They will be able to provide advice on adaptations to help. A good physio also worth their weight in gold. If the relative and the visitor feel comfortable I would recommend some massage and stretching on the impaired side. You will be able to get some advice on this from the Physio’s.
It is important to have the medical input for the prevention of further strokes but the rehabilitation team will be paramount in managing the recovery.

Your!

That's really useful advice @SingingWaffleDoggy, thank you very much for posting
Hadn't thought of massage, but totally makes sense.

So now just to find out how to get hold of the key people! It's all moving so slowly.

What sort of ward is he on? If it’s general elderly care they will have lots of post stroke experience. We have acute stroke and stroke rehab here so not sure what your options are there.
Personally, if I had a relative in hospital at the moment I’d move heaven and earth to get them home ASAP with good support. They should have a discharge to assess service where they are seen by Physio’s and OT’s on discharge and if you have the funds available I would look into care providers to get a package together. With the one sided weakness he is likely to need help mobilising so this will likely need to be 2 carers (often called double handed).
You also will need to consider if he has any swallowing difficulties (common with stroke) and if so if a referral has been done to Speech and language therapy (salt). Meal provision will need to take this into account but if family/ friends are unable to provide these there are companies that provide ready meals at the right consistency.
If he is likely to be funded by social services they will arrange the care package but there may be NHS carers that will bridge the gap between discharge and the carers starting.
The ward therapy team (Physio’s and OT’s) will be able to provide an ongoing program of exercises to be carried out at home and it is key that the carers or friends/ family complete these regularly.

First step is to arrange to have a chat with the nurse in charge of his care and find out what his new needs are, who has he been referred to, how are these needs met now and how will these be met moving forward.

Ah, thanks for all this @SingingWaffleDoggy! He's still on the acute ward I think. Two stroke nurses visited today, so that's reassuring.

We gather he won't be discharged for a while unfortunately, due to still having swelling in his leg. Further strokes can be possible, so I guess he'll have to stay put until that's stabilised. Although we'd all much prefer him at home obviously.

That's such useful information about his discharge, thank you! So much to organise. Can't imagine Christmas/New Year in a pandemic is the best time to try & arrange anything.

So tricky when relatives can't go in and find out what's happening.

I think having had a stroke, is probably the one time I wouldn't suggest rushing out of hospital too quickly, unless there is a dedicated community stroke/neuro rehab team. The first few weeks/months after a stroke are where the biggest gains in function are usually to be had, so normal process is to get to a stroke rehab ward ASAP, for the therapist to assess and provide early input, providing the patient is medically well enough. The weakness he has will require some careful handling and practice to debacle him to be safe enough to return home. With luck, getting the initial stages of treatment right can reduce long term impairments. A stroke ward provides a 24 approach, as staff will follow therapy advice even when the therapists are not there. At home, with an excellent community rehab team, he might have 1.5 hours of therapeutic input, it doesn't really compare.

Tell him he needs to practice practice practice to get function back so trying to use his hand if he's not allowed out of bed.

These early days and weeks are so important to regain as much as possible.

I hope the leg swelling gets better quickly for him. Sorry, I should have said that obviously it’s important that any medical issues are resolved prior to discharge. I am sure the doctors won’t declare medically fit until he is indeed so. I have seen some really wonderful care in the community using a combination of NHS and private therapy input and seen great outcomes so although I would say a stroke rehab ward would be ideal in normal times I know that I’d rather be providing the care at home if possible once medically fit but I’m a bit biased from my personal experience

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

Much gratitude to @SingingWaffleDoggy @tatyr @RandomMess for listening & sharing your experiences *& wisdom. 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. The leg swelling has started to diminish & he has a little movement in his hand too. A long journey ahead.

Thanks again everyone x

no specific info as pp have given but when my mum had a stroke, the thing that made the biggest difference was extra physio she was given by a family friend, way above what she got from the NHS and her own dedication to doing the exercises she was given religiously. Daily, really concentrating and pushing herself to achieve "normal" again. Years on, only her closest family would know. She can drive, does lots of walking, gym classes etc.

I’m sorry to hear you’re unwell too OP, just what you need!
Glad to hear he’s on the stroke ward. It might be worth the visiting family member asking the ward staff if there are any exercises they can do safely during visiting time. It’s the therapy that will make the world of difference.
Take care of yourself, and I hope you can enjoy your Christmas

That's a really good tip @HugeAckmansWife & @SingingWaffleDoggy, I'll definitely pass that on. Hadn't thought of that.

No visiting permitted at the moment unfortunately (Covid) but hopefully that won't be for too long.