My partner had a Stroke 5 weeks ago, she has right side weakness but has actually made real improvements since her stroke, she can now eat, stand, and has some very limited movement in her leg.
She’s been transferred to a rehab inpatient hospital where, we were told, she’d get increased care. But it’s worse than the hospital. At the hospital she was seeing a physio every other day now it’s less than 1 hour a week. She’s so angry and frustrated, her progress is going backwards and I’m at a loss at what to do to help.
The new hospital has said they are set up for acute cases, patients who are bed bound and they are short staffed. I know the NHS is broken, but she can sit up now, and wants to get moving, but she can’t walk on her own without support. Can I ask for her to be moved to a different hospital? What are the options here? We’re even considering paying for private physio at this point.
Shwmae @JoMorgz, I don’t know what can be done in this scenario but I would say, try and do as much as you can together, or develop a plan. Don’t let the system hold you back because it will impact negatively while waiting for it to step up to the plate, but don’t stop chasing options either. I didn’t receive any physio, apart from two emails, so much of the work I did was DIY. It might be worth giving the Stroke Association a call and asking for some advice.
@JoMorgz very often what they promise & what you get don’t match which isn’t great when you need the help most.
You could try asking for her to be moved but there’s no guarantees it would be any better. Research thoroughly first.
A lot of stroke recovery is down to our own determination. Is there anything you can do with her? Can she do some herself? There are many online resources that may be worth a look.
I know how you are feeling my husband had a stroke in July and after spending 5 months in hospital with limited physio .He then got transferred to a rehabilitation centre which was going to be the best thing ever but 2 months on its just the same or worse its so frustrating they say you need to keep at it to help the brain retrain itself but when physio is only 2 or 3 times a week how is it helping im doing exercises with him at weekends but it doesn’t seem to be helping i know he wants to come home but at the moment he’s not at that point
It seems the NHS system is failing again and again. 4 years ago my husband had a major stroke and ended up in rehab on Christmas eve. The physios and OTs were not available for the next 3 weeks. It did not set up a good pattern for his improvement. He needed motivating and 4 years later he has not had much more physio than the initial months once home 2 months after so called rehab. NHS could not come after that. He did have a brilliant Occupational Therapist helping me adjust things and learning how to get him from a chair to wheelchair to car, getting ramps etc. That only lasted a while though before his short term contract ceased. NHS contracts are not helpful!
During lockdown we discovered a specialist physio in a charity called Paces, in Sheffield and used their videos and online sessions 1:1. We had to pay of course. Then after lockdown we tried a few months of in person sessions once a month but my husband hated having to get into a car and panicked at every corner and hill. His partial vision gave him vertigo with the scenery passing by. His best session was the single occasion the PT could actually visit our home and assess what he needed better. So to benefit - seek out PTs that know what is needed and work with them. Unfortunately ours left that charity as she had to travel so far herself to get there. Also, do do the practice at home. My husband was very reluctant to do anything with me compared to doing anything with the ‘official’ PT. So he has not improved since, but gone backwards, just sitting watching TV, not willing to do much at all. I have learned that he will not improve without outside motivation but to get him to go out to e.g. an aphasia club means travel and he refuses to travel further than a mile or two from home. The lessons learned? - get Physio Therapy going from the start, with a good Occupational Therapist too.
It must be very frustrating for you when you can see he should be getting more rehab. That is after all the point of being in a rehab centre.
Keep persevering with the exercises you are doing as they might be helping more than you realise. Sometimes it looks like no progress is being made then all of a sudden you might notice a bigger change.
These next few days are going to be tough but iv got some new leg work to do on him Thankfully he can come home for Xmas Dinner but that will be tough going bk
I had a stroke 2.5 years ago i remember my patient rehab like it was yesterday… I thought it was Covid but don’t stay there if you can, the best thing is to engage your Stroke Association (person) and they will guide you. So for example i will now attend INS (integrated neurological services) which i really look forward too, its a Charity and the fees are not hectic, even the GP says that they are the only people who will be able to do things with me.
Try have a good Xmas & New Year.
I’m so glad you had an INS group but according to the website I’ve just found it is only for West London areas -Hounslow and Richmond. I can’t find anything similar for South Yorkshire - apart from Paces but that is too far for my husband to go. He needs a lot of motivation to do anything and doesn’t want to get any! This is a carer’s problem- me. Any suggestions?
Thanks for sharing, -Anne
Anne sorry for delayed response. To be honest i’m not sure, i got hold of the stroke association and she told me about INS, maybe they’ll know who you can talk or do things with? I know that ‘nothing’ and i mean nothing goes forward unless it comes from the stroke association, i have been messed around by universal credit and GPs for 2.5years, now they talk as if i should know, how the hell should i know, ive never used them before and i’m forgetting things the whole time and it’s making me mad and tired. The route JoMorgz sounds correct but with the NHS broken they need to contact stroke association and find another route. Help them if stroke association cant help but im pretty sure they can. I wish you all the best and please let me/us know how it goes.