Lack of physiotherapy and support post stroke

Hello
I had my stroke 6 months ago and just wondered if the lack of support was normal everywhere or just a postcode lottery.

As a stroke survivor, I was lucky that my speech, facial droop and left arm showed recovery within the first 24 hrs afterwards. After a few weeks I started to get movement in my left hip, then knee, but the lack of movement in my ankle and toes, means that walking even with a stick is precarious, due to lack of feeling and dropped foot. The numbness and lack of feeling all down my left side is still an issue.

I have been surprised by the lack of support that I received both in hospital and afterwards. I was moved to a stroke rehab ward in hospital, but due to lack of specialist staff I only received about 2 half hour sessions of physio per week. I managed to persuade them that I was capable of going home even though my house is on many levels, thinking that the post care team might be better staffed. How wrong I was - over the following 6 weeks I had a visit twice a week and not usually by a physiotherapist. It took several weeks for them to get the recovery devices to me and then suddenly it was all over and it was all taken away again. I was then handed off to the community physio team and now receive a visit once a fortnight from a physio assistant. He is now off wok ill and they have no staff to replace him.

A good friend had his very similar stroke in Bristol a couple of years ago and his treatment by specialists both in hospital and afterwards was quite intense in comparison and he made a very good recovery within just a few months. His care was clearly within the NICE guidelines of at least 45 mins of specialist physio 5 days a week.

I am interested to know which of these levels of care is the norm and if anyone has any recommendations as to what I can do next please.

Paul

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Hi Paul, sorry to hear of your experiences. Firstly, support does vary from area to area. Secondly, support services have been affect by the pandemic. I cannot, however, fault the support in my area after my first stroke, now six years ago. In my rehab hospital we had physio on a daily basis and before I came home. I was taken on a home visit to assess what alterations to the house were needed and what other aids might be required. These were done and supplied free of charge by Age UK. I then had six weeks physio support from our Community Stroke Team with daily visits for the first month and Monday - Friday visits for the last two weeks. I was given exercise sheets and expected to do here exercises every day. I was then referred back to my rehab hospital for a day’s physio once a week for nine months.

So far as drop foot is concerned by health authority funds FES machines supplied by the West Midlands Regional Centre. The machine sends an electric shock though the calf muscle that lifts the foot. The West Midlands Centre also reviewed my progress.

At the height of the first pandemic I had a second minor stroke. I was seen by physio in hospital and visited by the Community Health Team at home. I had returned my FES machine my my drop foot improved so, after the second minor stroke, the team supplied me with an ankle support.

I would suggest you check what support is available by contacting your gp, Age UK and the Stroke Association. Sorry I can’t be more helpful, because support post stroke varies so much.

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Dear Paul

Stroke after care is atrocious. I got six weeks of visits to my home in the guise of the early discharge team. Those six weeks, plus the week I had been in hospital, was excellent. But after that I was somewhat bemused by the lack of care available. I went to private yoga, and private relaxation classes.

However much or however little rehab, the bottom line is that it is up to us to make the effort.
The forerunner of this forum, being version one, gave me huge support and reassurance from fellow survivors.
Compared to most other locations, I actually got very good treatment Colchester hospital was brilliant. The Tendring early release team equally excellent. Sheer good luck in the post code lottery.

You are so unfortunate in stroking during the pandemic. The NHS is on its knees and there isn’t any back up or support.

My best glow of hope is that a new after care team is being educated and trained about an hours drive away. At least something is in the pipeline. No help for me, but something for the future.

Keep positive. Smile a lot. Lots of us are out here for you

Colin

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I think your experience is fairly typical. It’s a case of finding your own solutions. If you need exercises I’d suggest you have a look at a charity called ARNI. They do books and DVD with exercises and they have trainers too who will come to you for exercise. You do need to ring them to find out if there’s anyone near you. This is their website www.arni.uk.com

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Hi,
It’s a sad fact that stroke recovery help after you leave hospital, is sadly lacking unless you’re prepared to pay. I had a few physio appointments after I left hospital, but was then sent to my local gym, which was OK, but no substitute for specialist help. I’m afraid The Stroke Association was no use and I couldn’t seem to get help anywhere. Then, by pure chance, I found out about the very excellent Upper Limb program, run by UCLH (3 week residential Monday to Friday). They gave me details of ARNI. It took me about 2 years to eventually get an ARNI trainer, but she was worth the wait. During lockdown I also looked to You Tube and found Tara Tobias (Orlando Neurotherapy). I also found aquarobics very useful because of the repetativeness of the movements (think neuroplasticity) and the weightlessness. There is help out there, but it takes a bit of searching and money.

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Thanks for your reply John
That sounds like you received fantastic support from your teams. It is good to know how others are treated as I am seeing my GP next week to ask about more support. I have already contacted the stroke team at the hospital, but was told that once the 6 weeks was up there was nothing more they could do - not that they could do much in the first instance.
It does appear that from what you have said, Cornwall is sadly lacking. I did manage to eventually get some FES support, but that took 3 months to get an appointment and then the machine went faulty, so 6 months in and I have just started to use it.

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Thanks for your reply Colin.
Yes the NHS is on it’s knees and again worsened living in Cornwall. We have one major hospital for the whole county with resident numbers doubling during holiday periods, but no extra funding. The lack of staff is not helped by the fact that nobody can afford to move to work here due to the lack of rental accommodation and the price of housing.

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Thanks Pamela - I will look again at ARNI but I am sure I have already contacted them and discovered they do not cover Cornwall with trainers.

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Thanks Minnie - I will look and all those suggestions. I am already paying for a physio to sort the issues with my shoulder so will probably need more sessions with him to address other things, but by his own admission he is not a neurologist specialist. There don’t seem to be any at all down here.

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Hi Paul
I was just going to post my experience to the forum, but since it really addresses many of the same issues, I will paste it here. Covid may be part of the problem but there just isn’t enough support available to us on the NHS, and what there is, is not easy to find.


I had my stroke in September 2020. At the time I was a fit and active 70 year old with no underlying medical conditions. The stroke was completely unexpected and my introduction to being a stroke survivor was being told by a consultant that I had just been extremely unlucky. Not the most helpful information I have been given!

At first I completely lost the use of my right arm and leg, but my speech is pretty good and my mental faculties seem reasonably intact, although I was somewhat slow off the mark for the first week or so. Since the stroke I have been focussed on restoring as much use of my hand, arm and leg as possible. When I read the accounts on the Forum from those of you who had strokes at a younger age, I realise how fortunate I am in many respects. I was already retired and so my income was unaffected. I did not have to worry about family members so much, since the kids have left home and are making their own lives, and of course by 70 I had already done most of the things I had wanted to. At a very practical level, we still have local friends from taking kids to the school gates, and they are mostly retired too, so there are always offers of help. The downside of having a stroke at 70 is that people have very low expectations of you and I felt that some of the therapy was really just aimed at making sure I could get dressed and make a cup of tea rather than addressing my own ambitions to return to something more like my old life.

We decided from the outset that I would try to get back as much use of my right limbs as possible, and at that stage alI I knew was that it would involve a lot of physio. I never had a chance of a spell in the recovery ward in hospital, just 12 weeks of home visits. To make a real difference, my wife found a private neurophysotherapist in the area, and I am still going for two or three sessions a week, with steady progress throughout. One of the most useful things I was told was that getting back movements after a stroke involves learning what they involve from scratch because your body has simply forgotten. My grandson is 4, and suddenly I realised that the first years of his life had been spent learning how to move. It has taken him years working at it full time, and he still has room for improvement, so I should be prepared to put in years if I want to get decent mobility and function. Rather than setting aside blocks of time for exercises, I try to incorporate them into my daily activities as best I can. When I first visited the physio, my wife helped me out of the car and assisted me in as I walked with the quad stick. For the last couple of months I have been driving myself and walking in without any stick.

My shoulder was problematic at the outset. It did very little and was extremely painful if my arm was moved out from my body, even moving in bed. The breakthrough came when my physio suggested she use an old school method and taped my shoulder in place for a few days. That got over the pain for normal use, and I have gradually got back most of the range of movement by exercising a little every day. The NHS physios gave me FES for my hand, which kick-started the movement of fingers and wrist, and was also a great help. After a few months work my physio referred me to the local gait clinic for FES treatment to my leg. After about 6 months wait, I got fitted with a unit in October and now use it daily. By curing the foot drop it means I can walk faster, further but above all better. Most promising, I am now walking better even with it turned off, so lessons are being learned and I’m not just responding to the electric shock. I’m really hopeful of managing country walks of a sort next year.

I was surprised how quickly I got to rely on other people to do things for me while I was in hospital. My stay coincided with the start of a Covid surge, so no visitors and pressure to leave. In the fourth week I could begin to walk a little using a quad stick so the next week I was given a try at using stairs and taken home to see if I could live there. I could, and my wife and I had 2 day’s notice to prepare for my return which gave her an awful lot to do. One job was to source a single bed that we could put in a downstairs room for me and she asked quite reasonably if I could take that on. But it proved quite a mental effort to organise myself, even though it just meant using my phone to look up local bed shops and get in touch. Rather surprisingly I was successful, which was a good boost for my confidence. My wife did a superb job of balancing helping me when help was needed with letting me get on with things for myself when I could. True independence came when I discovered elastic shoelaces; after that I could dress and go outside without help. Then early this year she was diagnosed with breast cancer. Two operations were followed by 18 weeks of chemotherapy and then a spell of radiotherapy, just completed. It was frustrating not to be able to look after her as I would have liked, but I had to become more independent and more proactive, even if it was just to order takeaways for us. Fortunately, we have good friends who stepped up and really helped us both out, and the prognosis looks good.

Looking back over my experience since the stroke, I am struck by the number of really useful tips and bits of information that I have only picked up by chance. I am sure there are more that I don’t yet know about. From elastic shoelaces to the existence of therapies such as FES and to the possibility of getting back to driving, it would be good if the hospital and the community stroke team had a check list of helpful information to pass on to stroke survivors according to the issues that they are facing. Perhaps there is such a scheme but no-one mentioned it to me? Maybe this is something the Stroke Association could look at?

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Hello there. I can only agree about lack of physiotherapy. It appears to be quite widespread due to lack of therapists. And also due to some patients being mistakenly assumed to be less worth treating than others. When professionals decide that you won’t survive very long but are still fighting after 2 years without their help, it shows we need more and better in some areas of the NHS. It is, as others have said, up to us to make the effort independently and pay wherever possible. Theraplate has been great and a little EMS machine.

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Hi Margaret @MargaretH, welcome to the forum, it’s great to have you here

Hi Margaret - yes it does feel that it is not considered worth treating stroke rehab. I am only 64 and had a full life of 3 rounds of golf a week (walking) walks around the coastline , riding motorcycles and bicycles and touring around Europe in the motorhome. Everything came to a sudden stop and I cannot see how I could possibly get close to any of that with my current support. I would happily pay (although I thought I had spent most of my life doing the already), but I simply can’t find anything in Cornwall. I do have an assessment appointment at an MS centre, but that is 6 weeks time.

Hi Bruce - Indeed I think Covid hasn’t helped anything. However, I do feel that in general in my area support is poor anyway.

There is lots of information I should have had and have only found out from forums like this and friends I know who have also had strokes. I agree that the information should not be left to chance to pick up.

One annoying fact is that nobody mentioned the fact that my shoulder was very vulnerable to injury, and they even encouraged me to move myself around using the affected side in hospital, with the result that I now have some major rehab to do in that area as I have hurt it quite badly.

Yes, similar here. Feels like retired people go to the bottom of the list for help.
Very few private opportunities for stroke rehab. Help has come from unexpected sources like animal physios and army veterans who have lost limbs.

Hi Paul
Seems like I am lucky in West Yorkshire with a couple of different private places within 10 miles, albeit with very contrasting approaches. If you Google “neuro physiotherapy” followed by a place name I found several places that specialise in stroke recovery. Again, why no list when you are discharged from hospital?
Good luck in finding somewhere
Bruce

Hi Margaret
Congratulations on soldiering on against the obstacles! A few months ago there were some useful exercise videos on this website, but I am not sure where they are since it was restructured.

Completely agree @Colin , I was in Colchester for a week in may '21 and they were great. I was independent throughout but still had regular visits from speech and physio teams whilst undergoing all sorts of tests. Early discharge was also great (Maldon/Chelmsford based i think) but it does seem to be much more variation here depending on the area we live.

The upshot that everyone told me is we only get out from the work we put in. For some this is incredibly difficult to maintain motivation especially when mobility/cognitive ability is more impaired. Good luck on you continued recovery :slight_smile:

Hi Phil
I couldn’t agree more with the “only get out what we put in”, but the problem I had was, next to no input from any relevant professionals, so I am in a position of not knowing what to put in.
I have previously had 2 hip surgeries and a serious break on the elbow joint. For all of these I received extensive physiotherapy , which I really worked at. Within just a few months I was back cycling and playing golf 3 times a week.
With no neurological input, how do you even know what to do? Videos and online stuff is only useful once you know what it is you are working towards. Hopefully, this may improve as my GP has referred me to the stroke team in Devon, so this will probably involve 100+ mile round trips, which I would be delighted to do if it helps.
I have also found a private physiotherapist with some stroke knowledge, but at £80/hr!!! Is that the sort of price others are paying?
Hope everyone had a good Xmas and wishing everyone a better year than the last two.

Hi Paul @pjstingray , I have had no professional input or physio since having a stroke in September ‘21 other than about 20 mins from a physio and a further 20 mins from a speech therapist to assess my swallow reflex, both whilst I was in hospital, so I know the feeling of not knowing what to do to help myself improve. Probably as I too showed signs of improvement within 24 hours.

Oh, I also had an email sending me some speech therapy and memory/cognitive exercises.

The Stroke nurse made an appointment to come see me at home, then cancelled on the day and haven’t heard anything since.

It really is a postcode lottery as to what aftercare we SS receive.

Wishing you all the very best for a speedy rehabilitation and a healthy New Year

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