Hi in UK I’m about to be discharged from NHS rehab physio, I thought when he explained few weeks ago if I didn’t make progress I would have to be discharged. However today I’ve shown that I have improved going from 17 points to 22 in 3 weeks. I still can’t walk as i struggle to get from chair to stand. So now I have an appointment with him In two week i think for him to sign me off. I’m so confused i really don’t understand why is he signing me off when I still can’t do this task
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The trouble I found personally was that they seem to have an expiry date on our progress and if not up to their meeting range they move onto the next one. We should need to be made feeling 1) we are t hard enough or 2) a failure so that we try to exceed ourselves causing more problems then, living under the worry of discharge
I’ve been through this myself and this was my reply to them
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Hi @Gems27 & welcome to the community. It seems the physios do have a tine limit or threshold at which they sign people off. I had the same problem. Explain that you want to master sit to stands before they sign you off.
At your next appointment see if you can persuade them to keep seeing you as you have made some progress.
You do fund though that some of the best progress is made once the physios let go of you. There are many resources on YouTube that you could look at. Also the stroke association have online exercise classes that you could join. You can sign up got those and find out more info at this link.
https://www.stroke.org.uk/stroke/support/online-activities
Best wishes
Ann
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Hello @Gems27 - welcome to the community.
NHS anything can be inconsistent across the country and even amongst local practices and hospitals, at least that is how I see it.
Wrt physio, I think the NHS limits to how much rehab is offered and it does vary according to perceived needs of the patient and the perceived expected benefits for the patient.
In a nutshell, there is a lot of inconsistency, but if you are able to demonstrate you can benefit from it, show progress and are willing to spend some time challenging their decisions, you may get more offered to you.
But, as well as the physio you are given, there are things you can do yourself, and there are some on social media showing these things. Finally as Ann, @Mrs5K says
Wishing you all the best.
Namaste|
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We have been discharged from the NHS physio at home from the Early Supported Discharge team and had nothing for 8 weeks. We were referred to NHS community physio.
She turned up and made it very clear that just 6 visits was our lot! She was very direct and suggested several things my husband could be doing, clearly forgetting he can only use one arm which he needs to use to stabilise himself when standing. She also said since it is several months since his stroke he should start accepting that he may not walk again. I was not impressed.
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OK Trisha - don’t worry. This is fairly normal and as previously mentioned by Ann, your husband might make better progress once the physio has completed their course.
Make the most of the 6 weeks, learn the exercises so they can be done without the presence of the physio and then carry on.
Ask the physio when you can request a new referral. We found that if you are able to demonstrate potential and improvement, you may get further physio after say 6 months. It’s not ideal but unless you can afford private physio there is not much else you can do other than try to follow what’s on social media.
Also, there are exercises and advice the SA website and on this forum.
Many members have discussed these here on this forum and it’s early days yet, but I expect in time others will come along and offer you more support and advice.
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Hi @Gems27
Welcome to the community, I’m sorry to hear of your difficulties and confusion with your physio. My advice would be to give our Stroke Support Helpline:0303 3033 100. They will be able to advice you on what should be happening and if there is also anything else you could try in your local area to get more help.
If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
Anna
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This is why charities like ARNI (action for recovery from neurological injury) exist. To fill the gap and enable survivors to continue their recovery. you should have a look at their website there are books and online streaming videos. All provide exercises to help. They also have trainers throughout the country. You need to ring them to find out if there’s one near you.
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Nice one Pamela - I had never heard of ARNI.
It would be good if @Trisha2 could follow up on this and get some help.
There you go Trisha, something for you to look into.
Wishing you all the best.
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Same happened to me Gems move him on and get another on the system. I followed up by getting involved in a local Heartbeat Preston group which helps cardiac and stroke victims. Then I enrolled in neurological connections which pro motes brain training. This latter has worked wonders teaching me things such as how to get up off the floor. Look around locally see what help you can find. . Don’t give up just because the physios are doing.
I was in touch with ARNI after reading Tom Balchin’s book “Had a Stroke. Now What?” The lady I spoke to was very polite and helpful but we are a long way from the nearest trainer.
It was something like £120:an hour plus travel costs. We decided to carry on with NHS physio for now.
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Hey Trisha - no matter.
There are still things you can do.
There are social media posts where you can do these things from your home and without the help of a physio.
I am tagging Lorraine, @EmeraldEyes who is very experienced on this subject and she has many ideas and examples, tried and tested that your husband could possibly work from/with.
If there is anything specific you would like to tackle, please mention it here on this thread and I am sure there will be something that you will be able to do.
There are many books, but one I have looked at is
Stronger After Stroke - Roadmap to Recovery by Peter G. Levine
Keep going. You will get there!
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