Not sure what to do. Feel like hospital have let dad down

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I'm terribly concerned about my father, who had a stroke about 5wks ago. What follows might seems a bit long winded but I'll try and keep it short. The stroke was a right frontal one and he was told it was a massive one, initially when he had the stroke he fell badly on his left side, when he got to hospital he had no feeling at all in his left leg and his left arm was locked. Because of the fall he was on some pretty strong painkillers and mainly slept through the next two weeks.

At the hospital he's being looked after by a team of doctors and we'll call the lead one Dr X.

At the end of those first two weeks he had the use of his left hand and lower arm back, and in the following three weeks has been making slow gains, in the following week he had feeling in his leg and he's now able to move his knee. The person is still there, no vision, speech or memory problems thank goodness. He just can't get out of bed, but every week since he's been off the painkillers there have been gains.

The problem seems to be Dr X has written him off and told him directly that he's never going to get any better and he should consider going into a home (he's only 65). Physio seem to be following his lead and are not doing anything with him they come once or twice a week and manipulate his arm or leg for five mins and that's it, i've read enough to know that isn't really any significant amount of rehab for a stroke patient. Once or twice they have come over and asked how he is today and if he says he didn't sleep well they say 'oh ok, well we won't bother you right now then' and that's it for that day.

I have asked to speak to Dr X numerous times but I only ever see his another Dr on the team who agrees he's making progress and should have the rehabilitation exercises to get full mobility back, he says there is no reason why, given time, that he should get his mobility back, not as it was perhaps, but at least up and about and independant. But this feeling isn't being demonstrated in his care.

Now it's time for discharge, but he can't go home because in his current condition he would need a two man hoist. They called a best interest meeting with me to decide what to do with him next, this was because when they assessed him they decided he had no insight into what would be required when he got home. This appears to have occured due to a kind of misunderstanding when i asked him about it he said he was only joking about getting home to do the hoovering (he doesn't know one end of a hoover from another) but the girl who he was talking to took him seriously and now it's on record that his capability into insight is diminished. I've had a word with him about reigning in his sense of humour.

So in this meeting I stated that i wanted him to get more rehab so they agreed to refer him, he's been turned down because physio have recorded that there has been a lack of both engagement and progress, which i find very hard to believe (though i suspect the tiredness thing above is being recorded as Dad declining to participate). I couldn't really get anywhere trying to explain the capability thing, it was like they didn't believe me and i have noticed when they talk to him on the ward it's always quite slow and loud like they're talking to someone who's not all there or deaf, but he very much is all there and I can't seem to get that through to anyone, it's so frustrating.

My gut feeling is that Dr X's negative opinion has sent a ripple effect, physio aren't putting the effort in with him and it's effected his chances of getting any meaningful rehab.

It looks like he's got to go into short term placement now and i'm just so worried he's not going to get back home again. I promised him he won't go into a home permanently and he's so worried that he'll have to sell his home.

I'm really at a loss to know what to do. If I could see that he wasn't making any progress i would agree with Dr X, but the fact that stroke is such an uncertain thing and recovery is different for everyone, just seems to have gone out of the window for my Dad. I am so torn as one part of me thinks they should know best but something just feels so wrong about the care he's been getting.

I should point out that Dad's a widower who normally lives on his own and i'm the only child. I live an hours drive away, but am coming in every afternoon to see him at the hospital. So it's all on me to make sure he gets the best care.

Can anyone help me clear my head and give me some reassurance i'm not going mad. It's stressful enough when a loved one suffers a stroke, but all this on top I could do without

(Sorry about the long post, just wanted to make sure i covered it all)

Hi loriloop. None of us here are medical experts and cannot really comment on what doctors do. Firstly, I am sorry to hear about Dad’s situation and understand your concern. Stroke treatment,I suspect, varies from area to area and, overall, NHS services are cash strapped. I was lucky in that I had daily physio in hospital from a very dedicated team who insisted on exercise and would not take ‘no’ for an answer. My county also had a Community Stroke Team who gave me six weeks support at home. The stroke doctors, however, were local gps and the consultant was semi retired. The county has a major shortage of stroke consultants. However, patients can go home with a care package, so at least they are in their own environment.

I would suggest contacting the Stroke Association helpline and any local carers group to see if they can help. No two strokes are the same and recovery is a long, slow process. Try to encourage Dad all you can and see if there are any alternatives to residential care. Clearly, as dad lives alone, they are unwilling to discharge him there at the moment.

Hi John, Thanks for the post. I've just spoken to the social worker who is currently looking for a short term placement for dad as she says it's the only option available to us. She also says it's her understanding that he was rejected for the rehabiltation because of a lack of engagement on his part. So now i'm really unhappy cos i know that's not true. After the best interests meeting, (where physio stated that he gets exercise for at least an hour a day 5 days a week, which she had to retract when pressed) i made a point of asking nursing staff if they've ever witnessed Dad's lack of engagement with physio and they've all said no he's been really good. In the beginning, I was putting it down to the lack of resources, I wasn't thinking anyone wasn't doing what they should be, I was giving them the benefit of doing the best they can with what they hve, but now it's all feeling a bit dishonest, I think i will request his notes, that'll give me a clearer picture

Thank you i will call the helpline.



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