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.
I agree @John_Jeff_Maynard … what an awful situation to be in … and I’ll add get in touch directly with the CEO of the Hospital maybe? And ring your local Council, Adult Social Services … state how urgent this is, speak to the duty Social Worker and say your mum is potentially being put at risk by this situation. Also ask for an extremely urgent ‘Assessment of your mum’s needs’ to be carried out … try both Counties even…just suggestions by the way, I’m not a professional…just been thru similar.
Another thing I discovered whilst in Hospital … a ‘Site Manager’ … The Hospital were literally chucking me out, without discharging me or ensuring I was safe at Home. Brilliantly, a lovely Volunteer came into my room and told me about the Site Manager … I think they’re there on call to sort any issues. You have to ask for the Matron of the ward first. If they don’t listen just ring the Hospital externally, which is what I did and they came out and sorted the situation. I don’t want to get your hopes up, but you never know … again only a suggestion. As a last resort you could ‘suggest’ you’ll go to the Media (to someone at a high level’ if things aren’t sorted … again just my own thoughts.
Maybe p ring the Stroke Association Helpline …. They are brilliant and can signpost you to various options, and offer a safe space for you to just talk. Also maybe the Citizens Advice … bit of a lengthy process sometimes though, and the Carer’s Association… as that is what you’re all doing.
Oh and speak with the Stroke Association about the ‘crucial first 3 months’ … my understanding is that the Brain can indeed improve AFTER this time so it’s never too late. Look up Neuroplasticity online.
Well, hope that helps … this Forum is brilliant and I’m sure others’ will come up with more ideas … but it’s also a place for you to talk with other people who’ve been through similar. Keep us updated and take care, sending healing thoughts to your mum Anne
Hi @triangledictionary … I agree with @Mrs5K totally … stand your ground and don’t let your mum be moved until a proper Care Plan is put in place.
I did that last year … they (Hospital) were trying to Chuck me out at 6.30pm, no discharge procedure, no meds, I told them I had no support at that time at home and my bed was now totally unsuitable for my needs. They hadn’t even resolved the issue I’d gone in with! I’m quite a Warrior where injustice is involved, so I refused to leave my bed! A few red faced officials came in, but I stuck with it (calmly and politely) … and they gave in. I stayed that night thankfully. I’d already been moved around the Hospital at least 5 times in 2 days. So, yes @Mrs5K I agree, in my opinion ‘stay in place’ until someone sensible sorts things out to avoid being abandoned by the NHS which I was last year. Anne
@triangledictionary welcome, sorry to hear about your mum and her wait for appropriate care.
I don’t have any additional suggestions of whom to speak to, to offer as the others who have responded have all given great advice, hopefully one of those avenues will assist.
I hope the situation is resolved quickly, best wishes take care
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.
We haven’t spoken to social services… I’m not sure how to get them involved? Would it help?
@triangledictionary hi welcome. I cannot add anything else as I agree with everyone’s advice.
I wish you lots of luck for your your mum. Kindest wishes loraine
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.
Thank you all for the suggestions and thoughts
@triangledictionary the hospital where your mum is will have a social worker, each hospital has one, you should be able to contact them through the ward your mum is on or via PALS. Usually if ongoing care is required after discharge the hospital social worker organises a 6 week temporary care package which gives the patient time to contact their local authority council to have a full assessment undertaken here’s a guide from Age UK that may help
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.
Best wishes to you, your Mum and your brothers.
Hi @triangledictionary … ok, I’m not being all political here at all and current have no political leanings … but my local MP is Conservative….and he has been brilliant. I expected the same that he wouldn’t care, but thankfully he and his assistants really helped in other challenges I’ve had.
It’s worth a go, as we’re all human beings, and he/she is responsible for all their Constituents. I’ve found ringing all available numbers first is the best way, then if no joy … email, cc’d in eg the local Healthwatch, or other organisations, even the Hospital/GP Practice Manager … all in the same email. And maybe include both County’s relevant MP? It’s just another idea. I feel so sorry for you all and wish you lots of luck. Anne
Worth trying … yes the Hospital should have an accessible Social Worker I agree @Mahoney… but Adult Social Services Duty Social Worker at your local Council should help in an emergency situation. Hopefully you have a Site Manager in your Hospital…fingers crossed Anne
@triangledictionary @Mahoney & @ZX1 beat me to it but they should be able to do an assessment of her needs. Got yo be worth a try.
Best of luck xxx
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.
Hi again @triangledictionary …. It’s up to you of course, but I’d ring the Council Duty Social Worker in Adult Social Services tomorrow and ask for urgent intervention.
The ‘Assessment of Needs’ carried out by the Hospital is separate and different from the Council one, as far as I know. Make sure you’re there when it’s done if possible and research beforehand, just a tip
If there is a Site Manager…that’s what they’d deal with …ie your SIL being moved to her current location with (I assume) no specialist care, and basically the Hospital not fulfilling their ‘Duty of Care’.
Take care Anne