Hello Helen - knowing Argyll I can appreciate what you are saying about distances and the absence of services. It might be worth talking to your GP and Neurophysio Scotland (0141 255 0304 info@neurophysioscotland.co.uk) and see if they know of any NHS or private neuro-physiotherapists more local to you. I couldn’t find a community stroke rehabilitation team in mid Argyll.
Also, Ken will be eligible to claim Attendance Allowance, probably at the higher rate, which he could use to pay for some private physio.
I’m a social worker working in England and a stroke survivor and am happy to give whatever help and advice might be useful to you.
All the best to you both - David
3 Likes
Hi Helen
My experience is that care staff don’t like a Sara Stedy , it’s quite hard work for them and I think it takes a bit of extra time also, but you are entitled to push for the care that helps your husband.
Wishing you luck with your own procedure and a good recovery.
2 Likes
Firstly, I am so sorry that you’re here but thank goodness you’ve found this wonderful community. It is one of the best resources for advice in the entire country as we discuss things that the ‘system’ will not tell you (sadly, that means we are reliant on each other as the system is typically not supportive when it comes to rehab - it’s a known secret and nothing is being done about it).
Thanks @ManjiB for the tag…
My mum’s situation is very similar to @ManjiB’s mum. Although my mum has constant lung infections due to aspiration - her swallow was badly affected by the stroke.
My mum’s 78 and is fighting on. She’s a very strong and independently-minded woman. She was recently moved to palliative care and told by a consultant in hospital recently that they wouldn’t treat her any more. This threw the family through some serious trauma, as it was not expected, and it didn’t quite stack up.
After more conversations with other doctors, a couple of days later a doctor revoked the decision. Palliative means a bit of extra support - and it turned out we were getting that ‘extra support’ anyway - I’ve just stepped it up a bit. This is typical of the misinformation in hospitals.
The reason I mention this is because what you’re often told isn’t necessarily true for your husband or you. Question EVERYTHING - get the medics to work for their money - it doesn’t matter if you anger them - it is their job!
When you’re not sure about a decision, and you’re not getting the response you need, make a formal complaint. Do you have PALS in Scotland? They can speed things up, put people back in their place, etc. If you push back you’ll be taken more seriously. It’s disgusting that you need to do this, but that’s the reality, certainly in England.
You husband in using the sarastedy which is positive. That means he has balance and can weight bear for a little while. That means there’s potential to build on this. The hospital probably don’t want to spend more time on him (they neglected my mum) if they need his bed freed up. If you want to push for more rehab, make that complaint.
In terms of having someone to ‘watch over’ your husband’s care while you’re unavailable, can you set up a roster of family and friends who can sit with him, and ask questions of the staff? You can write them a list of FAQs so they know what to ask and when.
It is a really, really hard process - I mean gruelling. Some people can do it, others can’t manage it. So get as much advice and support around you now as possible.
Ask as many questions here in this forum as you like - there’s usually someone able to help.
My MP has been very supportive of my mum’s case - even went to the CEO of the local NHS Trust because her stroke consultant was appalling. He has a terrible reputation. So you may want to consider this route?
I hope that’s helped a little, and I’m sending you love and support from far (Suffolk)!
3 Likes
@elljay1
Thank you.
They are still not going to try to get him to stand up because they say it takes two people and there is only one available, so it’s not safe.
The physio went in to see him this morning and said she’d be back to give him some more physio…and didn’t turn up!
He’s now been moved to a 3rd mini-ward of 2 beds, no reason why. It’s like musical beds, and there is only 15 in the whole ward complex.
The carers are provided by the local authority and I believe that they are not allowed to use any equipment not provided by the hospital.
A thought though, based on what you have said about private carers, I do actually know of one who goes to a friend’s wife who has dementia that does operate a Sara Stedy as she was telling me it’s worth getting one. She may be able to help.
It’s one long fight. Plus I go into hospital tomorrow for a parathyroidectomy so that just adds to the mess.
2 Likes
@ManjiB
Thank you.
It’s good to hear that you mum is still well and fighting on.
I’m a bit twitchy about reporting all this to the MP incase the staff take it out on Ken.
He was in the QUEH, Glasgow and he (and I) wanted to have him transferred to our local community hospital as I was having to do a 5 hour trip every 4 days to see him in Glasgow. Having tried every route to get through to someone to have him transferred I went through the official channels but made it clear it wasn’t a complaint. It seems it was dealt with as such, and the ward manager where he is now told me it was our own fault getting him transferred to the community hospital and he would have had better physio in Glasgow. That put me in my place!
In fact he didn’t have better physio as he was put onto a vascular ward rather than a stroke ward when he came out of ICU. He saw the physios twice in 3 weeks. Mind you they at least tried to get him standing.
Tomorrow I have the pleasure of an overnight stay in the adjacent ward to which Ken was in in QEUH, Glasgow as I have to go in for a parathyroidectomy.
Thank you for tagging me in to other members. Hopefully when I’m better early next week my mind will be clearer.
2 Likes
@DavidHearnden
Thank you David.
Argyll is a really backwater when it comes to some services. I actually think they are trying to close down our community hospital as it now seems to be geriatric, dementia, hospice with the odd rehabilitation patient like Ken. The ward only has 15 beds and the maximum patients I’ve seen over the 2 months I’ve been going there is 7.
There was talk about him seeing the stroke nurse, but that’s all it was…talk. Nor has he seen a consultant or the like. He doesn’t even know what type of stroke he’s had, because I don’t think they know.
When I come out of hospital myself (I’m going in to Glasgow QUEH for a parathyroidectomy tomorrow), I’ll check with neurophysioscotland. All I know at the moment is that there are no private physios in the area, and as they won’t help Ken to stand again, I can’t get him into a car to take him anywhere.
2 Likes
@Shorn
Thank you.
The care staff won’t use it as I’ve been told that they will only use equipment provided by the NHS. My intention in getting one is to help teach him to stand, and ultimately to walk once he can stand without relianceon the Stedy. It would be difficult to use it for transfers anyway as the house is carpeted and we have timber door thresholds between the rooms.
2 Likes
@EMG72
Thank you.
It is a grueling struggle!
We don’t have PALS in Scotland unfortunately and when I contacted the equivalent body about getting Ken transferred to our local hospital they said they had no jurisdiction over the NHS and told me to go directly to the NHS to sort it out. Which I did, then got accused of making a complaint by the community hospital (which I didn’t), and told it was my own fault for getting him transferred nearer to home and that is why his rehab has suffered.
The OT are against the Sara Stedy, and the physio says she can’t help him use it as it takes two people and she’s on her own! Hence we will have to buy/rent our own.
Ken hasn’t even seen a stroke consultant or stroke nurse. They just can’t be bothered spending the time on him, despite him showing willingness such as using weights, resistance balls, reading stroke recovery manuals etc. (All provided by me)
Unfortunately we don’t have any family so we are going to have to tackle this alone.
2 Likes
@HelenS - You’re welcome.
We are here to help you.
I don’t know about things in Scotland, but I feel you should not be scared to complain.
If you are getting a shoddy service you have a right to complain. As long as you follow the complaints procedure you will be alright.
Do not fear that staff will take it out on Ken - they will not. If anything, they will respect you for standing up for your (Ken’s rights). Most staff understand and sympathise with you. I was once commended by the Ward sister for standing up the consultant and insisting he do what he should be doing for my Mum. I try not to make a habit of doing things in public but this was a ward consultation and the consultant was trying to pull the wool over our eyes.
Be assertive, know your rights. If you cower and give in, they will run rings around you and you will not get what you should in terms of care.
If the only way to get them do their job is to involve your MP then that is what you have to do.
Be clear about about what your rights are and be assertive when asking for them.
Ask rather than demand, but let them know you know your rights.
You are in a difficult place and if you are doing this on your own it can be difficult. Also, if you are the only person they dealing with it can make it “easier” to manage the situation. If you have someone who can support you and attend meetings with you it might help.
Wishing you and Ken all the best.
2 Likes
I hope your procedure goes well/has gone well Helen. You need to concentrate on yourself for the next while.
I am sure everyone on the forum is thinking of you and wishing you a speedy recovery
2 Likes
Oh dear, it sounds so challenging, and I really feel for you.
I’m glad Ken is up for it - that’s huge and will serve him well. Although it doesn’t seem like it right now. Although my mum’s case is different, movement has come into her ‘stroke limbs’ recently - they said it’d never happen. She’s using the hoist - regressed from sara stedy but if she had the strength she’d be back in it. So it could still happen.
Are there any volunteer organisations nearby? I’d suggest calling your local Red Cross, places of worship, Stroke Association, etc, to find out whether there’s any help you can access. If they don’t help themselves, they may be able to signpost you. We have an independent carer helping my mum - she ran her own home care agency for years and is excellent. She focuses on physio with mum. she charges £20/hour. Even one hour a 3 times a week makes a difference.
I’d recommend again contacting your local MP - they might be able to push things into place for you.
Also, please focus on your own health - ease up the pace a little, and know that stroke recovery takes a long time. There is time.
2 Likes
Sadly ageism is extensive in health and social care.
Another site to look at is the Chartered Society of Physiotherapists www.csp.org.uk - the Physio2U search. It lists a few stroke / old age physios around the mid Argyll area. They might do a home visit to assess Ken and possibly initially work with him at home.
As I said, I’m willing to help Ken accessing care and benefits if you want.
Take care.
2 Likes
@HelenS just a quick reply to wish you all the best for your op.
Try to give yourself a few days after that to recoup.
I am finding that sometimes I have to step back rest my brain and then start over again when it comes to my husband’s needs.
2 Likes
@HelenS just wanted to wish you well for your op. Although you’ve probably had it by now. Hope all goes smoothly & I wish you a Speedy recovery. Time to look after yourself for a little while.
Best wishes
Ann x
2 Likes
I am so sorry that you’re going through this. I had similar with nurses in the hospital. I complained and complained and the OH team had my back as they said ‘if you don’t bring it to anyone’s attention they’ll never know!’ Go to the top if you are able - easier said than done I know as you’ve got so much on. I really hope that it all gets better for you and your husband, it’s so disheartening when you already have enough to contend with. Sending love
1 Like
@DavidHearnden
Thank you, David. That’s very kind of you.
I’m currently languishing on the 11th floor of the QUEH, Glasgow after my operation yesterday. And the room is like an oven! Hopefully I’ll go home this afternoon, but it’s a logistical nightmare as I live 2.5hr drive from the hospital so depend on a friend to drive over for me.
As soon as I’m home I’ll get stuck into the info you gave me. I really appreciate your support.
Ken was supposed to have had physio on Thursday and Friday but no one turned up yet again 
2 Likes
@elljay1
Thank you. I’m currently languishing on the 11th floor of the QUEH, Glasgow hoping they will discharged me today. I’ve a 2.5hr drive home so I’m dependent on a friend collecting me, hopefully this afternoon. In the meantime I have a good view of the M8 motorway and the room is like an oven, but I’m feeling fine.
As you suggested I’ll give myself a few days before I jump into the fray once more.
3 Likes
@Mrs5K
Thank you, Ann.
It all went well thank you and I’m just waiting for updated blood results so that I can escape.
It’s boiling hot in here but being on the 11th floor I have a great view of the M8 motoway and south Glasgow!
Staff are brilliant so that helps. Xxx
2 Likes
@Mamagill
Thank you. We’ve made our objections known at local level. The OH weren’t prepared to do more than they have unfortunately. They said he had non-functional legs until he stood up, then they said it wasn’t for long enough to class as being able to stand, but Ken said it wasn’t his legs but his affected arm that isn’t quite strong enough yet.
I’m currently languishing in the QUEH, Glasgow after my operation yesterday, so I’m giving myself a few days until I launch into the fray once more.
I worry how far up the ladder to take it unless they take it out of Ken. I think there are too few of them as it looks very much as if they are running the hospital down towards closure. A lot of the nursing staff and agency, and I think they only have 3 physios who also work out in the community.
Enormous contrast between his community hospital and the one I’m in now (though he was actually in this hospital for 7 weeks following his operation/stroke)
3 Likes
@HelenS , hoping you get home and tonight will be in your own bed 
1 Like