Glad the op went well & that you get home today. Your own bed is always much nicer.
Take it easy & hope recovery is swift.
Ann
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@elljay1
Got home safely, thank you. It’s a long drive (5hr round trip). My bed will be very welcome tonight, and the dogs won’t leave my side in case I disappear again.
Xxx
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Thank you Ann. A good cuddle in my own bed with my two dogs looks very inviting.
I had a good view of the M8 motorway from my 11th floor hospital room though. Pity the helipad was located directly above it, and the room was like a furnace (27c), but it was a pleasant enough stay. Xxx
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Hope you enjoyed your cuddle with the dogs. Bet it was great to be home.
I’ve been up & down the M8 a few times on work trips to Scotland. Not my favourite road.
Hope you’re feeling ok today x
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@Mrs5K
Thank you. Not in too much pain fortunately. Just need to get stronger to continue supporting Ken.
You never know what you are going to get with the M8. Horribly busy or clear. Mind you in my work days it was the M6 and M62. Always a joy! Xxx
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Let me know when you feel up to talking and I’ll set something up. Take care.
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@DavidHearnden
Thank you. I really appreciate your help.
I’ve just seen my friend’s carers who know about my husband. They say that there are not enough carers to cover his 4 visits a day.
I’m trying to get through to the hospital that if they can teach him to transfer safely then they won’t need carers to come in 4 times a day!
I seem to be hitting my head against a brick wall.
I’ve got a multidisciplinary meeting on Thursday and I’m taking an advocate with me from our local carers centre as I don’t want to be sidelined.
Can I contact you after the meeting?
Xxx
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Can appreciate how frustrating and disheartening this is for you both. Typically the hospital’s main concern will be emptying the bed. You could point out to them if Ken ends up not being a safe discharge he might end up back there, so it’s in their interests to improve his standing balance, weight bearing and transfer ability and give him the necessary equipment (e.g. a Sara Stedy) to help him do so. Also, ask for occupational therapy involvement to work on safe transfers. Presumably, he will have the three home care calls daily as part of his discharge.
It’s worth before the meeting if you can get the GP on board. She / he will see the sense in making the discharge as safe as possible.
I’m away from Friday until Tuesday. All the best to you both.
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Good afternoon Helen. Did anything positive come out of the meeting you had last Thursday? Regards - David
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It was a nightmare, David. I walk out of the meeting and went to sob on a bench in the hospital grounds. The OT have given Ken a shower/commode but it is only to be used for transport from his bedroom to the living room where he will then be hoisted into a chair provided by the hospital. For his ablutions he has to use a bedpan, despite using a commode in the hospital.
He’s asked repeatedly for a shower. They don’t have the correct harness for the hoist. They have said numerous times that they will order one, but it never turns up.
Last night his catheter bag fell off his leg and got caught in the bed rails. It pulled the catheter out as he moved tearing the lining of his bladder and urethra, but they won’t let him do without because they say because he can’t stand, then he can’t pull down his shorts to use a bottle. So he’s sitting in his hospital chair with a catheter bag full of blood and howling into a pillow every time he has to pass urine. He’s not incontinent.
The only one concession is that they are going to try to get him to stand again on Thursday but he’ll fail as they haven’t been given exercises to work towards it.
And there are no carers available to cover our area so he’s stuck in the hospital for the foreseeable future.
I’m losing it…
Thank you for asking.
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Oh Helen that sounds a complete nightmare for you and awful for Ken too.
Do you think it is time to make a complaint?
My heart goes out to you both.
Take care
Ann x
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Thank you Ann.
By shear coincidence a couple asked to share a park bench with me and a couple of my friends on Sunday, and it turned out that he is the local Independent councillor for our area and was very interested in what I had to say.
In fact his wife had been through something similar with her late mother in the same hospital.
He has offered to help, and also cast his eye over our care package. Before his current post he was a mental health nurse so he could be very useful 
I do worry that if I make a complaint then Ken will suffer for it because he’s trapped there.
Xxx
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Helen - I am so sorry you and Ken are going through this.
I think it is time to take some action and I feel the time has come for you to start formal complaints. I understand you are worried this may lead to repercussions and Ken will suffer, but I wonder can he possibly suffer more than he is already. I would suggest if anything, you taking action will lead to you and Ken being respected and things should improve.
Please make good use of your new contact the local councillor but also look at the formal complaint route for the hospital / NHS. It is totally unacceptable what you are experiencing.
With regards to catheter, I am sorry this is has happened and it must be very painful for Ken. There is a support strap that goes with the catheter to stop the sort of incident you describe from happening. To stop further recurrences, please ask the nurse or whoever is in charge to get you a strap to hold the bag in place - I am surprised they hadn’t already done this.
Try to be positive and don’t think Ken will not be able to stand - he will. Think positive!
Have you thought about contacting your local MP?
You should explore all avenues - I appreciate it is hard having to do this on your own and can only offer you moral support.
Be brave and stay strong.
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Good morning Helen. A catalogue of poor treatment, which seems unlikely to improve. Did you get anywhere with your GP? Is s/he going to do anything? Also, I would suggest contacting your MSP to raise Ken’s case with NHS Scotland. Sometimes works coming top down rather than bottom up. Take care - David
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Thank you, David.
I think the MSP may be the next step. I’ll see what our local councillor comes up with first, if he comes up with anything that is. I wrote to him last night and sent a copy of the care plan, which he said he’d like to see.
The fight is wearing me down, I think perhaps not going in every afternoon may be an idea for a bit. I hate to leave Ken without visitors, but for my sanity he may have to fight his own battles for a bit.
Your advice is always appreciated, thank you.
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The MSP is likely to have more influence on NHS Scotland, the commissioning body for the local health board which oversees the service treating Ken. At the same time, whatever support is forthcoming is helpful.
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At @HelenS as a former Parish Councillor I would say make use of your local councillor. They are in a position to be able to raise concerns & garner some support etc. We didn’t used to take up personal battles but where things coukd affect a lot of the local community we were able to help. This is something they might be able to do for you.
I would also make that complaint. They can’t discriminate because you have complained & if they did that would just bolster your complaint.
I think your suggestion of not visiting every afternoon may be a good one for you right now. You need to look after yourself too & recharge those batteries so you can be there for when Ken needs you most.
Sending you both my best wishes.
Stay strong.
Ann x
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Thanks, David.
I think you may be right about the MSP.
He was told by the charge nurse today that he’d never walk again, and that if he tried to stand and fell breaking his hip he’d be sent back to Glasgow and never come back. What was that was supposed to mean!
It seems that the 23 yr old newly qualified OT has decided he won’t walk again, though apparently no one in the hospital seems to know what type of stroke he’s had and which part of the brain has been affected! Nor are they making any effort to find out.
He stood using a standing machine in Glasgow 2 months ago, but they don’t have the same equipment in the community hospital and don’t appear to want to refer him to the hospital in Oban, which has a dedicated stroke ward that may have the equipment. Tomorrow they are going to try him again using a basic standing aid.
He still hasn’t seen the stroke nurse (she’s in Oban) or a consultant despite asking. And the promised shower has never materialised.
And he still has a catheter bag full of blood I believe.
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Thank you Ann, I’m awaiting a reply from the councillor and depending on the outcome will probably take up David’s suggestion of contacting our MSP.
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