My daughter who is 56 had massive right hand stroke end of august. On acute ward for 6 weeks with very little physio etc. been on rehab ward 8 weeks with physio 2 week
They tried to get her moved to specialisedneuro rehab hospital but unfortunately they declined the application. There now saying can’t do anything else as not making enough progress. She’s still getting moved with a hoist. .
But discharge her. Home isn’t option so care home. I just feel that they are washing there hands of her. We are having a meeting to discuss things. But feel so down at moment
@Ceilidh Hi & welcome to the community. Sorry to hear of your daughters stroke & the difficult situation you find yourselves in.
I would ask the hospital whether they can refer to a different neuro rehab place if tye one has declined her. Do you know why she was declined? Could you appeal their decision?
Once patients stop being medically treated the hospitals need to move them on to make room for others who need medical treatment. This isn’t helpful when it is your relative that it affects. They can’t discharge her without appropriate care packages in place nor without adaptations being made to the house. You need to be firm with this.
You could try talking to PALS to see if they an assist. Also is there an occupational therapist at the hospital ? Speak to them too. Also try talking to adult social services at your local council for advice.
Hope you manage to get things sorted satisfactorily.
Best wishes
Ann
No appeals just yes or no. See what they say when have our meeting. I feel like I have no fight in me. Her son isn’t coping with all this he’s 19 and at uni but lives at home there’s always just been him and his mam. He sleeps at mine and has his tea here. But he’s just been diagnosed with autism
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Hi @Ceilidh
Welcome to the community, I’m sorry to hear about your daughters stroke.
I’m sure there will be others along to offer some advice on this but in the meantime you could use the magnifying glass in the top right corner to search ‘discharge’ there has been a few people talking about this recently. By using the search function this will bring up different conversations about it. You also might find it helpful to call our Stroke Support Helpline:0303 3033 100, they have a wealth of knowledge and they may be able to help you with advice on this situation.
If you need anything whilst you’re using the Online Community please don’t hesitate to tag me using my username and the @ symbol.
Anna
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After my first stroke I was kicked out of the hospital after 24hrs couldn’t speak so i feel for you and your daughter
My daughter had mild one in July she was discharged same day
Had numbness in left arm a leg. When community of came out she said it wasn’t stroke related ? Could be her diabetes She was waiting for referral back to neurologist when she had another stroke
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Letter waiting from neuro rehab hospital who declined my daughter saying because of significant global cognitive impairment and fatigueand has made little progress so far it is unlikely that she would be able to engage or benefit in intensive level 1 rehab or that it would make a difference to her long term care needs
They would recommend a placement where she will have appropriate ongoing support for her neurological needs
What does all this mean please
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From my inexperienced position it sounds to me like they are saying that ahe wouldn’t benefit from any rehab as it wouldn’t make a significant difference but they are recommending that she is placed somewhere that she can get the ongoing care she needs. I would say in an appropriate care home rather than being discharged home however i am no expert & you must check this with her medical team.
Best wishes
Ann
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That’s what I thought. Seems like there writing her off at 56
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You could try & do some gentle exercises with her to see if they help her. What that looks like will depend on her current capability. Just keeping talking to her could make a big difference but be mindful that she may tire very easily. Little bits at a time.
You could always ask for a 2nd opinion. You are entitled to one.
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Sorry to hear about what has happened to your daughter and that her chances of rehabilitation and recovery are being minimised. If the hospital will not agree to referring her to a specialist NHS neuro-rehabilitation service, there may be other care facilities where she or you live which may offer more in the way of rehabilitation. There may also be a community stroke rehabilitation team locally which can complement what the care facility can offer. I am a stroke survivor and social worker, have a lot of experience pushing for stroke survivors to have more rehabilitation opportunities and have been involved in stroke rehabilitation nationally . If I can help further, please let me know. Take care - David Hearnden
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We try doing that at visiting we go in every day, she can converse with us ok gets bit confused at times, but holds conversation with us Just scared that they say care home.
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Thankyou for that. Dreading going for needs assessment as she lives in council property
With her 19yr old son who goes to uni so he can’t afford rent nor can she when all other household bills are done don’t think at this stage she can go back to that house then it’s worry of what to do with furniture as most brand new. It’s just more stress
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Good morning. Clearly, your daughter had a large stroke and four months on because of the physical and cognitive damage it has done it will take some time for her to start to recover. That is why she will need time and rehabilitative care and support to come back from it.
If you can, ask for her to be discharged somewhere which will work with her in a rehabilitative and reabling way. Also, ask the hospital to refer her to a community stroke rehabilitation or therapy service as part of this.
It’s likely she will be discharged on the Discharge to Assess Pathway, usually 6 weeks NHS-funded care. During that time, she will be referred for a Continuing Health Care assessment to determine the NHS’s responsibility for funding her ongoing support needs. Full CHC funding is very difficult to get; the NHS may agree to pay some of the cost of her care, in particular her therapy needs. If she does not get full funding, she will be referred to the local authority for care and financial assessments. The threshold for local authority support is a person having savings less than £23250.
Your daughter will also be eligible for a Personal Independence Payment based on her care and mobility needs.
If you think I can help beyond giving advice, please let me know, Kind regards - David Hearnden
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Thank you for sharing that @DavidHearnden that information will be really useful for many.
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