Hoping my daughter will be transferred from hospital after massive stroke in August she is only 56 to a voyage run brain injury slow stream rehab care
Funding is done by integrated care board
Anyone have any experience of this please
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I don’t have any experience of this but I just wanted to say I hope it all goes well.
Best wishes
Ann
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Hi and welcome to our community, so sorry to hear of your daughter’s stroke at such a young age. I have no knowledge of this particular type of rehab but would just like to wish you well.
Regards Sue
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Hello @Ceilidh ,
Sorry to hear about your daughter’s massive stroke.
I am not familiar with the slow stream rehab, but my Mum also had a massive stroke back in March 2019 which left her heavily dependant on others and various other complications. Based on our experiences, I would suggest you ask as many questions as you can think of that may help care for your daughter.
There is likely some team that is dedicated to your daughter’s care in hospital and who should ensure a safe discharge from hospital. By that I mean, they should not try to hurry you into making a decision. In our case, we had to make sure the place where Mum was being discharged to (home) had all the necessary equipment and safety measures in place for ongoing care.
We also had a social worker involved etc.
I hope the hospital team (I think they are called the MDT or something like that) will be able to help you. Also, one of the members from this community may also have experience of a condition similar to your daughters.
Wishing you and your daughter all the very best.
Namaste|
After posting the above yesterday, something was bothering me and then having slept on it, it came to me 
There is a recent post here in this forum that relates to your case - link below.
Having thought about it a bit more, though my Mum did indeed have a massive stroke, she was never (and still hasn’t been) offered the slow stream rehab.
As I recall, the MDT didn’t think my Mum would benefit from any sort of rehab (wasn’t given any physio for a very long time).
It looks like the post-code lottery scenario, where you get what you get depending on which part of the country you live. There are disparities even in neighbouring boroughs.
Anyway I hope this helps.
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Having just seen @ManjiB’s reply (our mothers had similar strokes with similar problems caused by the stroke), I wanted to chip in.
Firstly, I’m sorry to hear about your daughter. You must be devastated and I hope, where possible, you’re looking after yourself throughout all of it. I think it sounds positive that your daughter is going to rehab and it’s great that it’s available to her. In fact, I spoke to Voyage recently.
I’ve had to do extensive research on rehab as my mum - who’s 78 - had a massive stroke last February. She can’t do intensive rehab which is the most common form of NHS rehab.
I actually spoke to Voyage Care recently to find out more about them. They seem very good and I’m hope your daughter will get the attention she needs. The person I spoke on the phone was very compassionate and helpful.
Sadly, Voyage is too far for my mum to go to (we live on the Suffolk coast). So we’re having to continue her rehab at home which is far from ideal. But she responds best to slow, constant, gradual rehab - like so many other people.
My advice for anyone caring for someone after a massive stroke is to trust your instincts. Also, ask as many question as possible so you understand what is happening, why, how and when. Get to know all of the staff involved in your daughter’s rehab if you can. If you’re not able to be there in person, call often to ensure they know you’re ‘on it’. If you need help with calls, perhaps set up a rota with friends and family.
To echo @ManjiB, a hospital social worker can ensure her discharge was appropriate and safe. Also, you’ll have someone to ask questions to, and an ally if you need one. It’s worth calling the hospital’s social work team to enquire. If you’re not sure whether Voyage Care will happen, a social worker may be able to help support this discharge pathway.
Please keep us up to date and ask for support. I wish your daughter and you the very best.
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That’s very kind Thankyou very much
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Your reply and advice was so lovely. Waiting for call from social worker don’t know if it’s for funding or if they will fund it
She was refused nhs rehab centre too as they didn’t thinks he could cope with it
But thankyoun
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Thankyou for that information
Social worker getting in touch with me think that’s for funding. If they give it
Hospital said if voyage care have her might be wait so she might have to go into interim care ie care home as need bed, Coming home is not an option sadly , as even with carers I could not sadly cope
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Hi just had call from hospital social worker to say they couldn’t fund voyage rehab as it’s too much over what they would pay
Feel devastated meeting will probably say care home as coming home isn’t an option as I’m nearly 80
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Oh I’m sorry. It’s so tough. Did social services say what they can fund? Id keep that conversation going and get the socisl worker to give you a clear idea of how your daughter can access rehab. She deserves and needs it.
If she has respiratory issues (e.g. dysphasia) ask for respiratory physio too.
She can continue having physio in a care home. But you may need to fight for NHS physio.
On that note, how is her mental capacity in making decisions? How is her speech? Can she advocate for herself?
If not, I’d encourage finding a few people to advocate for your daughter and to help you too. It’s a battle.
Ive had to get our local MP involved, mainly due to the awful attitude of the stroke ward at our local hospital. And lack of support for my mum at home. Im on the war path.
The Stroke Association helpline is excellent so do call them for additional moral support.
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Probably care home. She’s only 56 just feel like they want her out of hospital as quick as possible
Ringing stroke helpline today. And also don’t know if worth trying for chc she has left side vision problems no weight bearing. Gets Moved with hoist. No use of left arm. And insulin dependent and cognitive problems
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@Ceilidh , please take time to go through what @EMG72 said in her response. She has covered pretty much all the key things to bear in mind.
Can I check, you only mention yourself aged 80 and your daughter aged 56, are there other members of family or friends you can call upon. It is quite remarkable what you are trying to do as an 80 year old (I do not mean to disrepect or demean). It must be particularly difficult as an elderly parent caring for a middle aged child, when normally the roles would be reversed.
@EMG72 and myself have had similar experiences to yourself with regards to caring for a family member who has had a massive stroke.
Just so you know, information isn’t always volunteered and you sometimes stumble upon it, or some dedicated source (such as the Stroke Association) can help out. For us the Stroke Association was so helpful :), though it was quite some time before they came into the picture. By then we were pretty much on our knees.
As @EMG72 mentioned:
- it is likely your daughter may need advocates - this can be you or others
- Your daughter may need a Power of Attorney (POA) or a Deputy (if POA not in place)
- care needs assessment and a dedicated PERSONAL care plan
- Get financial help to meet her care needs
1. Disability Living Allowance
2. Carer’s Allowance (you may qualify if you care for your daughter for more than 30 hours) - Check with Citizens Advice or your Social Worker what benefits might be available.
With regards to Care Home, it is important to make sure the Care Home is able to fully support your Daughter’s Care needs.
In our experience, the hospital wanted to discharge Mum asap (they wanted the bed 
) and put us under a lot of pressure to choose a care home. At the time we were totally ignorant of rights etc. and so we gave in too easily, but we learnt as time went by. So we started to question what was being offered and pushing back if we felt it did not meet Mum’s requirements.
This will be hard, especially if you are on your own and they (the MDT et al) will be as one - I feel they tend to stick together in the main and it might be tricky trying to garner support. But hold your nerve, put your foot down and do not be bullied into a decision that is not right for you and your daughter.
Of course, there is a need to strike a balance, but if you remain calm, you will likely get the best outcome possible for you and your daughter.
We will be here if you need anything else and wish you much strength.
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Regarding CHC…it’s based on medical needs not nursung needs. Often these overlap so it’s not that straightforward.
As you haven’t shared details of your daughter’s condition (which is absolutely your choice), I can’t really give you an idea of what’s ‘medical’. But the insulin dependency requires constant monitoring so this could be the focus. But I’m not an expertby any means.
A social worker will book an assessment for you. We couldn’t do it in hospital so had to wait for discharge. It all takes a while to happen so bear that in mind. My mum’s CHC was refused so we’re looking at appealing via a specialist no win, no fee legal firm.
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Yes Thankyou I’m not 80 till 18 months time 
But yes I have another daughter who is coming with me to any meetings she is quite calm but forthright
Dawn gets pip already
It’s just so sad you have to fight for things
She’s only 56 and needs this chance of rehab. As we think if it has to be care home she will just look around and think this is my life now and give up
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No secret to her condition but she has no function on left side leg and arm. She also can only see half of what’s in front of her so when eating which she can manage herself only eats half of plate She’s also being moved by hoist to sit in a narrow wheelchair
In order to sit up
The sad thing is voyage care did say they could help her
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