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so worried - any advice appreciated


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Well my Mum won't being going to the west kent neuro rehab unit until she is more independant, so is currently on their waiting list. So they say.

Shes at the local hospital having physio 3 times a week at the moment and they have just instructed the nurses and care staff to put her in a wheelchair for one hour a day. Although she gets left in it alot longer and ends up sloping to the right after that (I know this thanks to the nice lady in the bed opposite my mum who tells me everything thats happened that day :thumbsup:)

The physio lady who assessed my Mum said they will refer her to the Sapphire wing in gravesend for rehab as they have nursing staff. Anyone heard of this?

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Hi Bessie,

I'm sorry you (and your Mum) are having such a terrible time with Kings'.

It seems nearly half the people on this forum have had serious issues/struggles with the care they have received at one time or another following their SAH. But, it is well worth sticking to your guns and asking questions when you are confused/unhappy. Don't be put off.

I haven't heard of the Sapphire Wing but it might be worth asking the consultant if they could refer her to the Wolfson Neuro Rehabilitation Centre in Wimbledon. It is part of St. Georges' Hospital. The wait might be shorter - if they accept patients from Kings. It only has about 32 inpatients.

Best Wishes,

Leo x

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  • 2 weeks later...

All these neuro rehab places seem to need the patients to be more independant so none will take her - she gets referred and then refused.

Anyway, the stroke units occupational therapist has arranged a meeting with us the doctors and physio as they want to send her home.

The physios said she has not shown much improvement after 4 weeks with them so she may as well go home? She cannot walk, has very poor balance and is still using a urine catheter.

We won't know what they expect us as a family to do for her at home?

Briefly the OT was saying we would have to have a hospital bed in my dads house, with hoist and everything else. It seems very odd to me that they want to send her home, she is clearly not fit for discharge just yet??

It may turn out that she will still have physio at home but I won't know until this meeting.

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That is awful.

Your Mother's case obviously demonstrates a gap in the system. It seems you have tried (& to some extent the hospital have tried if they keep referring her and her admission is refused) just about all I can think of trying.

I guess until you have the meeting there is nothing you can do but wait and try and keep yourself together as much as possible.

If she does come home before you all feel happy with the decision, I do hope there is enough support available in your area so that your Father isn't suddenly left to cope alone (during working hours when you cannot be there).

Best Wishes,

Leo

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bessie

im shocked the idea of rehab is to get mum mobile thats a fact use that directive i gave you links to just because mum hasn't improved to much is due to the injury suffered good days bad days point that out to them i could be also because they haven't supported or pushed mum to get more mobile people like lin and your mum need so much stimulation to become more active thats paramount the more mum is stimulated the more progress is made thats why rehab is needed

 

to send her home is a cop out i wanted lin home and i do hope to sometime having a hospital bed is ok if there is room it would have to be on the ground floor along with a commode and a hoist very nice but proberley impracticable they are passing the buck to district nurse and carers and in the hope of the phyiso popping in now and again for twenty mins not funny

 

please just say they are failing to comply to the directive for long term neurological injuries please and ask why grrrrrrrrrrrrrr!! thease people make me fume bessie just take care of yourself and mum and dad just wish i could help further refuse to allow her home untill she's has some time in rehab hug and cuddles sweetheart

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  • 3 weeks later...

Sorry I haven't responded to any replies but things are just going from bad to worse.

We had agreed to bring her home rather than put her in another hospital. The nursing was in place, the rehab and then on Saturday we were told 6 patients (including my Mum) have MRSA on their skin.

The whole stoke unit is isolated and the area my Mum's in, is being barriered nursed.

The patients are being treated but whats worrying is the open pressure sore on my mums heel. If this infection gets into her bloodstream, then we are back to how she was with the brain infection and the sepsis she had.

Its so upsetting. She was due to go home Wednesday (tomorrow) but now she has to have another swab done on Thursday and I just pray that it will be clear.

She was just starting to show improvements with her rehab and now this.

All the major problems my Mum's had is down to poor hygiene in these hospitals.

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Hi Bessie, sorry to hear your news, Can't really help you a lot, i can tell you that when merrill was swabbed once she showed up with MRSA and they cleared it in 5 days, and i was told that 1 in 3 people carry MRSA with no ill effect, so maybe this is a precaution,which if you think about it is good for her and everybody else i think some of the horror stories we read about MRSA are the exception rather than the norm, so fingers crossed and hoprfully everything will work out fine, by the way when they said MRSA i panicked as well Good luck Rod

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hi bessie

so sorry to hear that mum has mrsa i just hoe they clear it up quickly so mum can come home for Christmas and i really hope they get everything in place before mum does come home

as rod said most people do carry mrsa on their skin with no complications i know when the blue bag comes out into lins room i go up in the air so your not alone Bessie its obvious the nurses do not follow hygiene rules but most of all is that mum comes home soon take care

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  • 4 weeks later...

Hello,

Haven't written anything for ages as mum has been at home for nearly 2 weeks now.

She has carers 4 times a day and community rehab will start on tuesday. although we have been told it will be 2 to 3 times a week for 6 weeks. after that who knows.

Bye for now.

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Hi Bessie,Glad to hear your mum is getting on well, I think you will find they play it by ear so to speak, the fact that your mum has a carer 4 times a day would say that she has problems, so how they can say that they will sort them in six weeks i don't know.

 

Merrill doctor at the rehab clinic told her right at the very start that this could take 2 years i don't promise to make you better but i do promise i will teach you how to live with it and if after the 2 years you still need our help we will still be here, and i think they put it that way as they just don't know how an individual will progress as every case is different.

 

I think it's more likely that after six weeks they will reasses her and see what her needs are then, so i don't think you need to worry about what happens at the end of six weeks i don't think they would leave you high and dry and if at the end of 6 weeks you don't know where to go from there your gp is probably the best place to start again. Best wishes Rod

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  • 1 year later...

Hi everyone who helped my daughter while I was out of it....... ....she let me read the posts she sent and your replies to her....nice to know she was in good hands......I was so glad to see my daughter and hubby again....

Many thanks once more to all of you as she has been so scared...she said you all helped her.....

Regards

WinB xx..thanks for prayers xx

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I am fine Jen..apart from not being able to walk...but How I was.....well it was pretty bad or so am told....when I was in dream world..I kept seeing my parents and family who had died...it was like a big party,

apart from my Mum never talking to me ....I know this sounds silly but it was so real.......glad to be with My Family again...I'm glad the Doctors said the shunt would benefit me...if anyone is in doubt about having a shunt fitted...talk to Doctors as for me it was the right thing

Take care Jen

Regards

Win x

Edited by Winb143
spelling mistake
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  • 2 years later...

Hi Win , For some reason I don't know why I did not make the connection between you and your Daughter Bessie....Have just re read your Daughters thread here....wow you have come along way ! Been through so much.

So glad you made it through !!

Your warmth and support to others here and yes your singing ;) is a credit to you xx

Love Tina xx

Edited by Tina
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Hi Tina,

My daughter was so scared when I was in cuckooland, all on BTG who helped her deserve my thanks and Love xx

She was so afraid I'd die she used to sit and count the drips going in me and when they slowed up off she'd march and tell a nurse.

 

My Sisters say without her and hubby watching out for me, well !! the mind boggles :crazy:

Keep well Tina xx

Love

Win xx xx xx

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