Progress of a sort

[davidgillon]

So my mother, sister and brother-in-law finally had a 'family meeting' with the rehab team yesterday. Maybe it's just me, but I can't help thinking we should have had one before now (coming up on two months in the local unit. just over that counting time at the regional centre). Anyway they'd met with a rep (retired nurse I think) from the Stroke Association beforehand,  and she was in the meeting with them, together with all the different rehab specialities. And my sister let them know in no uncertain terms that we think their communication has been diabolically bad, and that dad's rehab has been compromised by their failure to address ongoing medical needs and work around them, while still holding him to unchanged targets, which they pretty much had to admit was the case.

The good news is that they've agreed to another meeting in a fortnight, which in practise means they won't be able to discharge him for at least three weeks (at which point he'll move out of the unit, but not out of the hospital until a suitable care home can be found). Obviously that means that the care situation is still hanging over us, but at least now we have the Stoke Association pointing out to the rehab unit that his care needs are so complex they can't just dump finding a suitable care home on us.

Not so good is that the rehab staff think he has substantial cognitive issues - my sister, who spends much more time with him, but obviously isn't qualified (but as a senior teacher isn't quite the man in the street either), thinks his cognitive ability is relatively intact, it's his short term memory and attention span that are shot. It doesn't help that he talks all of the time, but isn't easily understandable, so it's difficult to gauge understanding.

Related, and distinctly problematical, is that there is a 15 week waiting list for community speech therapy. As the unit's speech therapy team have prettty much wasted two months by insisting on turning up on their own convenience, rather than when Dad was well enough to participate, to the point he effectively only started speech therapy a week ago, we aren't impressed and will probably keep pressing this point to try and force the unit into making good on what it was supposed to be doing. (And they've done better than Occupational Therapy, who still haven't seen him).

Slightly more positive is that the physio team now seem to be settling on there being a role for ongoing (two days a week) physical rehab once he's discharged, rather than against it, which one of the more senior ones was openly agitating for last week.

The overall opinion is that he needs 24/7 care, with someone continuously in the room with him, equally he has a continuing issue with getting sufficient hydration such that it imposes an ongoing nursing issue, that's going to make it very difficult to find appropriate nursing care. Obviously that's not as good an outcome as we were hoping for, but progress is still possible. And with respect to his longer term care we've now got the Stroke Association onboard, will probably add in Social Services in the near future, and the unit isn't going to be allowed to shirk their ongoing responsibility, so that's a hell of a lot better than last week when they tried to dump everything on us with no notice and no support. The financial implications aren't entirely clear, but the reasons they said last week that he would qualify for fully funded care still seem to be the case.

The downside is that we still may end up trying to find an appropriate care home placement, for a particularly complex case, over the Christmas period, which isn't great. I normally spend three weeks up in Durham over Christmas/New Year, this year it may end up being longer.

Comments

[nanila]

Ooooofff. I'm sorry that all the various services have been dragging their feet so badly. I'm glad, though, that your dad has a dedicated family pushing things ahead for him.

[davidgillon]

Yeah, the faily bits all different facets of the stroke rehab unit, which we were told at the start was very well regarded. Personally I'm not seeing it!

[calissa]

I'm glad you're posting these updates. Not only does it help you process but it helps the rest of us to know what is going on for you.

I do hope things improve from here.

[davidgillon]

Thanks. The various messages of support here and elsewhere do help.

[jesse_the_k]

How frustrating. The four month wait for speech therapy is heart-breaking.

[davidgillon]

Yeah, it's unfortunately symptomatic of the way the current government (heavily in the pocket of private healthcare) has been systematically shorting the NHS budget to make people think there's a problem with the NHS.

(It might have been 12 weeks not 15, but even that's not great).