How on earth do you deal with negativity from medical staff?
Ken, my husband, was told there was no reason why he shouldn’t walk again after his stroke in December 2024. He’d have to work at getting stronger though and it wouldtake time. He’s had limited physio so far. We asked could he use a Sara Stedy when he comes home rather than a hoist, and can they work towards that being possible before they discharge him (no date yet as they can’t find carers to fulfil his care package). Surely a sit/stand and safe transfer will work out cheaper than 2 carers 4x a day.
They tried him in the week, and he managed to stand for a few seconds, but they classed that as not being able to stand. No discussion over whether they’ll work towards it over the coming weeks.
Today a nursing auxiliary complained that he had asked to go on the commode too often today. He pointed out it was only his second request. She disagreed and went to check his notes, and it was only the second time, but apparently she thinks it’s because someone didn’t write it up. Ken then said it wouldn’t be a problem when he could walk/stand to which she replied ‘I’ve told you you’ll never walk!’
I’m becoming despondent. He’s trying so, so hard to get stronger.
In the meantime I’m under the mental health crisis team for my meltdowns, I’m dealing with an ailing 14 year old dog who is the centre of my universe, and on Friday I have to go to the same hospital in Glasgow that Ken was in (when in ICU), to have a second parathyroid tumour removed. Since that’s 100 miles away the logistics have been eye-watering.
I want to curl up in a corner and never wake up.
No one can know if your husband will walk again. All you and he can do is maximise his chances.
@HelenS firstly good luck for your operation. I hope it all goes smoothly.
Sorry to hear of the negativity you seem to be getting from some staff in relation to your husband.
No one can say for sure if your husband will walk again but if he is determined to get back to walking then he definitely has a chance. I have come across a few people through my stroke journey who were told they wouldn’t walk and now are. It won’t be easy & will need loads of hard work, plenty of determination & even more patience.
As for his requests to usevthe commode I wpuld hope he could request it as often as he needs to.
Keep pushing re the Sara Steady. When I was in hospital they had one for a lady on my ward that she could be strapped into & with a little seat that she could rest against whilst they took her to the toilet. An option for your husband maybe?
I hope you manage to get things sorted. Keep fighting for what you think is best.
Best wishes
Ann
@Mrs5K thank you for your response.
We tried to have him assessed on the Sara Stedy and after giving him one attempt, they said no. Not even a reason why, and they are being very negative about our comments about sourcing one ourselves, saying it won’t be safe, but not telling us why.
He’s determined to walk again, and we know it won’t be easy and a lot of hard work, but we are just not getting any encouragement. We are really going to have to do this alone so I’m researching everything I can to help him.
@HelenS Sorry to hear of the struggles you are facing and the negativity you receiving regarding your husband’s recovery. Unfortunately no one can predict whether your husband will walk again, his own determination and hard work will play a massive part in his recovery and with your love and support he will see slow and steady improvements as time goes on. Keep fighting on with your request to get a Sara Steady, as you rightly point out, this must be cheaper than providing carers.
I wish you both well and that your operation is successful and that your dog is not suffering too much.
Regards Sue
HelenS,you sound a very determined lady! I,m sure your husband will do very well indeed with you fighting for him! The hospital staff should be ashamed of themselves ,being so negative! He deserves all the encouragement he can get So well done to you ! Keep at it and good luck for your forthcoming op! 
@HelenS I am so sorry to learn of your extremely difficult situation.
It doesn’t sound like you are being treated with the respect you and your husband deserve and I am assuming perhaps you are dealing with all this without family around to support you ?
I wonder if you might feel like approaching PALS at hubby,s hospital and asking them to set up and accompany you to a meeting with the senior nurse/ team leader etc caring for your husband.
Put your thoughts to them, explain that you don’t feel one try with a Sara Steady is enough to make a judgement and ask the rehab team to work again on that.
The patient next to my hubby when in hospital was told he couldn’t have a SS but after a week of practice with the therapy team he was then always wheeled away to the bathroom when needed which is much more dignified than a commode. Luckily he had good strength in his arms which naturally makes a difference but even with one good arm to begin with he managed safely.
PALS should be able to advocate for you, when you are able to talk to them explain your thoughts and ask them to help.
I wish you all the best with your own health issues and your poor fur baby. Our pets are family too.
Take care and good luck
@elljay1 Thank you.
Unfortunately we don’t have PALS in Scotland but a local carer’s centre have offered to advocate for me.
Ken’s left arm is weaker and maybe that’s why he could stay up any longer on the Sara Stedy but that doesn’t give an excuse as why they won’t try again. He’s putting so much effort into getting stronger but we just feel they can no longer be bothered any further, which is so unfair to him. I’ve even taken it dumbells, squashy balls, dexterity games and so on to help him, because they are not.
There are no local physiotherapists to us. If only I could get him to be able to do a safe transfer then I could take him to a specialist in Glasgow, but whenever I suggest anything to the OT team there is shaking of heads and sucking of teeth!
I asked could he be trained to use a sliding board, but no. It wouldn’t be safe. I’ve asked how I’m going to get him into a car, and I’m told I won’t.
When I suggested that we buy our own equipment like a Sara Stedy I was told in no uncertain terms that the carers would not use any equipment not provided by the NHS. I didn’t say I wanted the carers to use it!
I’m thwarted whichever way I go, and it’s very disheartening.
I just want to find a quiet corner and leave all this behind.
@Gorrie Thank you. I’ll try to keep ploddng along.
@Susan_Jane Thank you.
Hi @HelenS,
I’m really sorry things are feeling so hard right now. You’re clearly doing everything you can for Ken, and it’s no wonder you’re feeling worn down. Please don’t feel you have to cope with all of this on your own.
If you ever need a chat, our Stroke Support Helpline isn’t just for information, the team is trained to offer emotional support too, and they really do understand what people go through. You can call them on 0303 3033 100.
Since you’re in Scotland, it might also be worth reaching out to Chest Heart & Stroke Scotland (CHSS). They offer local support services, and you can fill in a referral form on Ken’s behalf to see what help might be available. Their Advice Line is also free to call on 0808 801 0899.
Do let us know how you get on Helen. If you have any further questions, feel free to tag my colleague using the @ symbol followed by her name, like so → @Anna_Moderator
Take care,
Alex
I bend an ear to the kind ones, and it seems to shuffle the deck a bit.
Thank you Alex. I’ll look into Chest Heart and Stoke Scotland.
It seems it’s the postcode lottery again. A friend checked in with friends of hers who are also in Argyll and her friend’s husband, who had had a massive stroke, had far more physio than Ken has had, both as an in-patient and when he got home.
I think his home physio will be falling on me, but I’m determined to do the best I can for him.
@rups. Thank you.
I keep having meltdowns and I think they are worried.
Ken constantly brings the subject up with them.
Hi @HelenS, it shouldn’t come down to a postcode lottery, but it so often does. It sounds like a lot of Ken’s physio has been left to you, which can’t be easy. If you haven’t already, it might be worth giving our Helpline a call too, they may be able to check if there’s anything else nearby that could help. I’ve also found a few more places that may be worth exploring:
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Mid Argyll Community Hospital and Integrated Care Centre (Lochgilphead) scroll down the page and check the section ‘Clinics run by nurses or Allied Professionals’: Mid Argyll Community Hospital and Integrated Care Centre (Lochgilphead) | NHS Highland
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Community Links (We Are With You – Argyll & Bute): this service can help connect you to local support for health, wellbeing, and practical issues. You don’t need a referral; you can contact them directly for advice or help navigating local services: Community Links Scotland | WithYou
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Argyll and Bute Council Occupational Therapy Services: they can assess at home and provide equipment that could ease some of the pressure: https://www.argyll-bute.gov.uk/social-care-and-health/care-and-carers/occupational-therapy-services
I hope this helps!
@HelenS how frustrating for you and Ken 
I’m glad you have someone to advocate for you, I think staff take you more seriously when you take someone else along or at least get some involvement from someone other than yourself because they tend to dismiss us as being a bit overbaring or over emotional which of course is totally natural since we are the ones dealing with the situation. Once discharged the staff can move along to the next acute patient.
It does seem you have a very uphill struggle to deal with so I sincerely hope the carers advocate is able to help.
@Alex_Moderator
Thank you for your suggestions.
He’s actually in Mid Argyll Community Hospital 
and they are doing nothing to help now. They gave him some basic tgerapy to help him wash and dress, and that’s it. They assessed him for standing and though he did it for a short time they have said they don’t class it as standing. But that’s it, no further help to get him to stand.
I’m already involved with the Community Link. The lady who is attached to my case is lovely, but has no jurisdiction on what is happening…or not in this case.
And its the A & B Council Occupational Therapy Services that have said that there is nothing in Ken’s care package for OT once he comes home. They have provided a bed, hoist, unsuitable chair, and he’s getting a wheeled commode so the unsuitable chair can reside in the living room and they’ll push him on the commode to the chair where he can be hoisted into it.
So basically we are on our own to figure it out best we can. I’ve even taken in things to help like dumbells, therapy balls etc because they are not providing them. They just expect him to be hoisted into a chair and sit there for 8 hours until he’s hoisted back into bed again.
It’s very demoralising for both of us.
@elljay1
Thank you. I think they want him out of the place. He’s not taking up a bed because the ward is about 80% empty. It’s now mainly geriatric, dementia and hospice. There is an A & E and a GP practice but what was once a full surgical hospital has now gone.
I can’t help thinking that at 70 he is no longer important, but if he was younger and working he may have had more attention given to him to get him up and walking.
The senior physio has told him to practice standing when he gets home, but not said how to go about it. So I’m researching like mad.
It would be easier if we had private physiotherapists in our area, but we don’t.
@HelenS , so terribly hard for you and no wonder you are sometimes overwhelmed with it all.
I think as wives/carers/loved ones we have to accept that this can be a very difficult journey for us too, not just the stroke survivor.
70 is not old at all these days but sadly is classed as geriatric which can be detrimental for sure.
I don’t think the NHS has heard that ages is just a number!
When my husband needed knee surgery many moons ago he was quickly put on the list and prioritised because he couldn’t work until he had the surgery and rehab. The surgeon himself said that he was lucky to be a " useful part of society " or the wait would be a very long one.
I hope the stroke association helpline have been able to suggest a way forward for you.
Personally I am doing what you are, buying equipment that helps me help my husband, however my husband can stand. I certainly would be trying to get hold of a Sara Steady if not because they are a great piece of equipment. I wonder if a local care company have carers trained to use one ?
It’s a big financial commitment but Ken has a lot of living to do and it might be just what’s needed to get his strength in his legs.
If you have care companies locally maybe try phoning to ask about any that are trained in using SS. They all have to be trained to use hoists so chances are some might have done training with SS.
Here in East Anglia the Physios have the final say before a patient is discharged and many stroke patients are kept in hospital after being clinically fit for discharge if the physio wants more time to work with them.
It is truly disgusting that they are not fighting for Ken to get more rehab and I wish I could help you fight for him and you.
@HelenS - Welcome to the club 
I am sharing this with you to try to cheer you up and maybe give you hope. Crazy as it may seem, that is my intention. I have followed your story and sympathise with you and empathise with you. The horrors you describe, the pain you feel and almost everything else is something I myself and my family have been through as carers for my Mum.
Whatever you’re experiencing and the hurdles you are facing we have had to deal with.
Here is the cheery bit …
As bad as things are, if you keep plugging away you will get through it. It is not going to be easy - there will be hardships, mental, physical and financial.
Mum had her stroke in her late 80s and so imagine how she was treated, or should I say not treated?
She has been in palliative care pretty much all the time with little or no support. We have done all sorts of things but pretty much off our own backs.
She has coped, we have coped. Sometimes it takes longer than we would like but we get there.
The good news for you is Ken is able to help you to help him and this will enable you to keep going and keep fighting. Don’t give up and don’t despair.
May I suggest on thing which if you have not done already is to contact your MP.
One member of this forum, did just that and I believe it helped her to get a better response than she was getting prior to contacting the MP.
I tag her here in case she can offer specifics about how to get your MP to help you - @EMG72
I also tag David Hearnden @DavidHearnden who is an experienced social worker - very knowlegedable and with first hand experience.
I don’t know if they David and EMG72 will be able to help as they may have other things they are dealing with, but I hope sooner or later they may be able to chip in.
Finally, I know it is not easy and you (and Ken) are going through a tough time, but be brave, take heart. Things will work out.
Why do I say this?
We have (kind of) been there - Mum is now in her 90s and she is much further down the recovery path and she continues (even at her age) to fight on and all this with (almost) no help from those who can and why? Because she is of no use to society? Well they are wrong and she is living proof of that.
There you go, I am not sure if that cheered you up, or if it gave you hope but at least I tried, though I do not cry as it is not worth it.
&
Namaste|
