My sons discharge from hospital with no mobility

My 38year old son had a stroke in early March and had a crainiectomy to reduce the swelling in his head,
His stroke was on the right sight so he has no mobility in his left leg or left arm. In early April he was moved to a NHS rehabilitation centre and he is still there at the moment and receives physiotherapy approx 3/4 times a week for approx 1hour. When Richard 1st arrived he was given a discharge date of 6th June, and as things stand as of today Richard has shown very little improvement in any mobility. Richard lives with me and i am a widower with health issues. The NHS centre say they are now going to discharge him back home during June with a care package of 3 carers per day. I am not fit enough to look after him at all but they are not taking mine or Richards needs into account as Richard does not even want to come home yet in his present state. I am being told he would not qualify for NHS continuing healthcare to go short term into a nursing home as his only need is his lack of mobility and that is not enough so he is now expected to come home and some how cope. I am now at my wits end and do not know where to turn next. Complaints have gone no where. Need help and advice

Welcome to the forum. Please feel free to make lots of noise here about your problems.
I suggest you make lots of protests and don’t give up. The stroke Association itself might be one organisation to contact.
You will get lots of sympthy here on this forum and could well come across others who have been in a similar position.
As a carer you should also be eligible for a package to help you cope.
I hope you arrive at a workable place with all these difficulties.

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Hi @kevin23 so sorry to hear about your son’s stroke and the situation you both find yourselves in.

Speak to as many organisations as you can Stroke Association, Different Strokes, citizens Advice as they may be able to offer advice and suggestions. Get a needs assessment for your son and a carers assessment yourself to see if you can organise a care home placement for a few weeks, respite care, try this link here

Wishing you both all the very best.

Wow. Kevin23.
Very similar experience to my brother. Also a Richard but at 67. Total left side immobility but fortunate to have his speech and swallowing resumed.
Anyway, he was in ICU for a week, then Stroke rehab ward for over 3 months. During which time, zero visiting! He has no home/family to return to that can manage his care but eventually the NHS will just discharge. After nearly 4 months we we able to collectively find a Care Home that had an ‘independent living’ aspect to it (meaning that if you are able, you can come and go, but basically it has 24x7 care, which is currently still needed for transfers (bed-chair etc) and toileting assistance.
I think your Richard is going to need the same and you will have to self fund it until you can demonstrate you have no means. In our case, 100k of savings will be gone in 18 months. But hey, what else can you do with that money, except leave it to family, who aren’t in a position to provide that level of care anyway.
Physically, it is taking (and does take) a long time. Mentally, we are just 6 months in and now hitting that emotional trauma. He/we will get through that and regain a new normal. It won’t be the way you wanted it, but its a new normal and no different to sooo many others who have unfortunate circumstances. You have to be grateful for very small things and that you survived at all.
Good luck with Richard. It was a social worker that was eventually assigned and was able to find the right place for us. The NHS were OK at caring by numbers, but they can only do so much and seemingly have a lot of paperwork and non-care overheads.
We are also about to take over self funding the OT sessions (3-4 times a week) because the NHS randomly stops that after time, regardless of if you still need it, which stroke patients do.
In short, the NHS takes care of the critical things, but after that, extended care needs fall to ‘Social Services’ and your own resources. It came as a bit of a surprises to realise that NI/NHS care kicks you out when they can, but the system is not there to absolve you of all responsibility.
Lastly, if your Richard was working, it might be that there is some incapacity insurance to claim on? Maybe if he had private health cover? Most won’t, but thought to mention it.
Regards.

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@kevin23 welcome to the forum. Sorry to hear of your sons stroke & the situation you find yourself in.
As others have said you should get a care needs assessment done & also contact places like Citizens Advice, Stroke Association, Different Strokes. They will be able to offer you some advice on your options.
Good luck & I hope you find a workable solution.

Ann

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Hi, so sorry to hear of your son’s stroke. A useful port of call might be:
Different Strokes. A UK Stroke Charity providing a unique service to younger stroke survivors

Hope you find this useful. Regards Sue

The NHS can go kiss my sweet, caramelised bottom. Of course you can get get further NHS support, it is the National Health Care Service. Dah. Next turn, your local newspaper, next the local MP. Don’t give up, the system is not what it should be.

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Hi, I feel for you and your son as you want the best for him.

I was discharged from hospital as I had ‘over stayed my welcome’. I was there 2 weeks (one of 4 hospitals I have been in). I needed to go back into hospital but there were no beds so they told my parents that I was being discharged that day no matter what. My parents had nothing place for me, asked for a couple of days to sort. The answer was no. I arrived by ambulance transport about 11.30 at night due to the distance to travel and slept in a chair until Rehab at Home could get a bed, zimmer, etc.,

such a wrong thing for them to do1

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Hi and welcome. Would occupational health be able to help?
Hope you get sorted soon❤️

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Hi - we are in exactly the same situation with my Mum. Would be useful to know if you are getting any NHS physio (we have had ~ one session every two months and only when I chase) + where you are at with a CHC (Continuing Healthcare) assessment for NHS funding. Find it baffling that people can recover from strokes with the right help and yet the NHS seems to do absolutely nothing to help. If you are on your own and have no money maybe the system kicks in. I’m just relieved that Mum doesn’t know how much we are paying after all her year’s of paying NI etc and hardly ever calling on the NHS. What can we do?

Do the Care Home staff provide any basic physio for Richard - keeping his right side moving?

Is so useful to know what is happening to other people in the same situation as I feel as if the NHS has just abandoned us to sort things out.

take care.

Sorry. over a week has passed.
Brother Rich is still getting Physio 4-5 times a week. Its like training for them I think. It all helps, but progress is not yet visible. He has mobility exercises and things like an ankle splint to keep that straight.
You are right that the right side needs work too. It gets weaker and weaker being confined to chair/bed all day. Right arm still strong but its really hard to cope with just that. He is a long way away (if ever) from keeping fit in a gym or using a exercise bike. Just standing is a big effort, but he is managing it using a Ross-Return to stand up. But nothing yet in left side really.

It is verty difficult to see progress day-to-day. I would suggest keeping a diary. Over weeks and months when you look back you will see the progress.

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@Janetb suggestion of keeping a diary is a good one as progress can be made albeit slowly but looking back over the entries can show the progress made over weeks that may not be visible on a day to day basis.

The physio will be helping, best wishes to you both

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