My mum had a stroke on 9th October and has been in the acute stroke ward since then. She was declared medically fit on 8th November and was referred for inpatient rehab on that day.
They initially told us to expect 1-2 weeks for her to be moved but it’s now been almost a month and they are now saying it could be 1-2 more months. I know the first 3 months after a stroke are really important so this seems crazy. She does get some speech/physio therapy in the hospital but it’s only a few times a week. The hospital environment is really bad. One doctor told us it’s “the worst possible place for her to be” and a physio said it’s absolutely not set up for people to stay there that long. She is miserable.
Part of the issue is that we live close to the border of two counties and she is in a hospital in one county but her GP is in another. She has to go to rehab in the county where her GP is because of the funding. There are apparently only 17 neurorehab beds for our whole county. They are trying to look into getting her county to pay for a space in another county but the people at the hospital say that the admin people at her county just aren’t responding to them about it. Other patients seem to come and go constantly, being sent to rehab in the county the hospital is in after only a few days.
We (me and my brothers) are in the hospital every day asking about it and while all the admin staff, physiotherapists etc are sympathetic it just seems like there’s nothing they can do. Today the discharge officer said we should raise a complaint to PALS so we have done that. I already spoke to them once after my mum waited 7 hours in pain and it turned out her catheter was blocked, but just raised it as a concern not a complaint, and they didn’t do anything so I’m not very optimistic they will help.
We asked if we could take her home in the meantime and care for her there and they said if we do that then they won’t take her back for rehab. It’s also apparently too late now for early supported discharge so she wouldn’t get any help. (She is right side paralysed so she needs lots of care at the moment)
Is there any one else we can be speaking to? Is a wait like this normal? Any suggestions at all are appreciated.
As you know there is intense pressure on the NHS and your problem is partly due to her gp being in another health area. Mum needs rehab before she comes home and is now occupying a bed that could be freed up for another major stroke case. That should be part of your argument. Might I suggest you approach your mp.
@triangledictionary welcome to the forum. Very sorry to hear of your mums stroke & even sorrier to read what you are now battling with. I think the NHS is broken & I can’t see any way it can be fixed. That doesn’t help you though. Is your mums GP able to chase up the paperwork? If that’s holding things up I’m surprised the hospital aren’t creating more of a fuss.
She needs to remain where she is until its sorted else she’ll likely get abandoned by the system. Maybe try your MP as @John_Jeff_Maynard said. Are social services involved? If not try getting them involved. If they are i’d put in a complaint to them too.
Really hope you get things sorted soon.
Best wishes.
Yeah we are very aware she is taking up a bed from other acute stroke patients as the hospital has told us that several times and I appreciate it’s an issue. The hospital has been using that fact to try and put pressure on the other county but it doesn’t seem to be helping.
I just had a call from the hospital a few minutes ago to say that my mum has just been moved to another ward because they needed the bed, and I looked it up and the new ward is haematology and oncology… So basically it sounds like they have just stuck her somewhere random.
I have thought about writing to my mp but they are Tory so I doubt they will care.
I will try asking about the site manager, I hadn’t heard of that either. I have spoken to the Stroke Association helpline a couple of times but they just suggested taking mum home to wait which is not an option as they won’t then take her back.
Thanks but I don’t think the 6 week care package applies at the moment because she will be discharged from the hospital to an inpatient rehab unit, not home at the moment. She is on the waiting list for it, its just that they said it would be 1-2 weeks and now it could apparently be three months.
Hello @triangledictionary - I welcome you to this community and wish you all the best. I have read the responses and have nothing I can add that would help you.
Stay strong and stay focused. I am sure between you and your brothers you will be able to get the help you need for your mum. It is tough but you can get through it - remember that we are all different and so will likely have different recovery times etc. Keep plugging away and try not to take “no” for an answer when you ask for help, especially from the GP.
Yeah I think she has already had an assessment of her needs and they’ve said she needs inpatient rehab but the issue is that there isn’t a space for her at a suitable unit in her county.
Last night they moved her to the haematology and oncology ward because they needed the bed on the stroke ward for a new patient, so basically they’ve just stuck her somewhere random to wait.
That’s not ideal. You need to make sure she is still seen by the right drs & gets the level of care she needs. Sadly it’s indicative of the current situation with the NHS.
We’re in a similar position to the original poster (I hope its ok to piggyback on this thread?). Our 87 yo mum was getting a bit confused (couldn’t seitch off the hob etc) so I took her to A&E on 1 April where they said she’d had mini strokes recently. She then spent 14 days in a hospital bed waiting to be transferred to a rehab unit with no one able to give us an idea how long this could take. We contacted social services (at the hospital and the county) and no one could give a timeframe for assessment/ move. As we had heard from someone else that it could be months we took the decision to move her to a nursing home. She has now been in a care home for 2 weeks, which is better than the hospital, but not perfect and not what she wants. She’s physically healthy but a bit confused and ‘vulnerable’ as she seems to have trouble making decisions and concentrating. Speech is fine though. Before we look at taking her home I want to know what support she will need and what therapy would be appropriate so she is safe and makes the best recovery she can. She has finally been referred by her GP for a neural assessment but still no idea of how long this might take. Does anyone have any idea how long this process might take? Also, is it possible to get this assessment done privately so we can at least start planning her future?
Thanks. Yes, they’ve been very helpful. I spoke to them today.
The whole system is so confusing and complicated to navigate it really does need an overhaul to ‘join it up’!
Hello @triangledictionary - I am following up on your post to see how you are getting on. Hopefully things are settled and your Mum is getting the care and support she needs. It can be difficult at times to get the help and support you need, but if you keep plugging away you usually get there.
I say this with over four years’ experience of caring for my Mum. We had many difficulties, but by not accepting things at face value where they felt wrong, we managed to get her through the Covid lockdown etc. and whilst there is a long way to go, she is getting better by the day. When first admitted to hopspital following her stroke, we were told it is a very bad stroke and we should not expect too much. At that stage, Mum was totally bed bound and in need of full support from 2 carers. Today, she is able to sit out in a tilt and recliner and her wheelchair, but still needs 2 carer support. She seems happier and is doing what she can to help herself. I think it’s fair to say, her will power and desire to get well as been a significant factor in her being where she is today.
So please keep doing what you can and keep seeking the help which is out there.
