Mental capacity assessment

yorkie46

Registered User
Jan 28, 2014
413
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Southampton
Well the capacity assessment didn't happen on Friday as planned. On Thursday evening I had a call from the care home where he was in respite care to tell me they had called an ambulance for my husband. Apparently he had asked to go to the toilet but couldn't stand from his chair and was complaining of severe backpain. It took 3 carers to get him to the toilet. They then had more difficulty getting him off the toilet. He was given medication for the pain but he still couldn't stand and walk. They consulted with the surgery who advised calling an ambulance. They were told the wait could be two hours. They said they would let me know when the ambulance arrived. Because his room in the care home is upstairs and they only have a stair lift it was impossible for them to get him to his room. I later had a call to say the ambulance had arrived. He had been given more medication for the pain and after 40 minutes had managed to stand with help and walk a few steps. He then sat down and couldn't get up again! They wanted to take him to hospital but he was refusing to go. I was asked to speak to him to persuade him he needed to go. I spoke to him and told him he had to go to be checked over. His response was 'where do you think I am now?' I said you're at the care home but you need to go to hospital. He agreed to go if I thought he should. He couldn't make this decision for himself, he didn't understand why he needed to go to hospital. Does this call into question his mental capacity to make appropriate decisions?
So he is now in hospital and as usual I'm getting very little information. He is being given antibiotics because blood tests indicate an infection somewhere but they don't know where. The diabetes team need to review him as he apparently has a blister on his foot. They say his dementia was reviewed before he reached this ward, they can't tell me what this means or who it was reviewed by. He will be reviewed by the physio but probably not over the weekend because they are prioritising patients for discharge. All this I had to drag out of the nurse in charge yesterday after his first response was 'he's doing well'. I said that tells me absolutely nothing, he has dementia, I need to know what is going on. I've told him under no circumstances is he to be told that he can go home until a proper mental capacity assessment is done because this was planned before he was admitted to establish whether he has the capacity to make decisions about living at home. I told the nurse I can't manage him at home any more and he isn't safe. I'm not sure how much of this he understood. I told him that his social worker will send all her records to the hospital. He actually asked me if I'd heard of care at home for my husband! How patronising!! I informed him we have had care at home but it doesn't work. He has dementia, he won't wait for carers to come to get him up or go to bed so I have to do it and I pay for a service he doesn't receive. I am now completely drained and depressed. I spent the whole of yesterday evening crying. I'd had a phone call from my husband saying he hopes he can come home soon. Last time he was in hospital in July last year I had the same scenario. I've been advised to refuse to have him home which I tried to do last time but they told me he had mental capacity and wanted to come home. I don't believe they did a proper mental capacity assessment, in fact they admitted last time that they didn't but they decided he had to come home. I have no confidence that they will do things properly this time and I dread the battle ahead. The respite has turned into a complete nightmare and I can't see where things will go from here.
 

Sarasa

Volunteer Host
Apr 13, 2018
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Nottinghamshire
@yorkie46 , lm so sorry your husband has ended back in hospital. All the material you sorted out to argue why he should stay in the care home will stand you in good stead when arguing he should return to a care home not home. I think you said the social worker was being supportive about him staying in care . Can you get hold of her tomorrow and ask for her/his help?
I’d also phone the Support Line on 0333 150 3456 and talk things through with them. They are open from 10.00 today.
Stay strong, and just keep repeating g that he cannot return home.
 

MartinWL

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Jun 12, 2020
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London
His response was 'where do you think I am now?' I said you're at the care home but you need to go to hospital. He agreed to go if I thought he should. He couldn't make this decision for himself, he didn't understand why he needed to go to hospital. Does this call into question his mental capacity to make appropriate decisions?
In short yes I think it does. But a few points on mental capacity. Decisions don't have to be "appropriate". A person who has capacity is entitled to make the most idiotic decisions you can imagine. It was his lack of understanding that suggested incapacity. Secondly inability to make a health decision on whether to go to hospital has no bearing on another decision as to where to live. Capacity has to be assessed for each and every decision or class of decisions. So an assessment in the hospital will only relate to his decision as to where he should live. To have capacity to make that decision he must understand information given to him in respect of the decision. That includes the impact on you and your health and wellbeing if he lives at home. So make sure if you can that the assessor knows the home picture and remind him or her to explain that information to him and assess his understanding of it. Remind the assessor that if he doesn't understand that, he does not have capacity under the Mental Capacity Act 2005. Note that he doesn't have to be considerate for your needs, he just has to understand them.
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,258
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High Peak
You can't possibly have him home! I very much doubt that his inability to weight bear was a one off, and several staff at the care home were unable to manage him, so how on earth could you cope? (Unless of course he agrees to confine these incidents to the set times when carers come...)

You tried it before but you'll have to try again: insist that he does not come home. He clearly lacks the capacity to understand his care needs now, or the effect on your health.
 

Banjomansmate

Registered User
Jan 13, 2019
5,392
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Dorset
Suddenly being unable to stand or walk due to unidentified infection was one of The Banjoman’s reasons for a hospital stay. He deteriorated after that occasion so you really cannot have your husband home as he will likely be worse than when he was admitted. With any luck they will discharge him back to the care facility once the infection is under control.
 

yorkie46

Registered User
Jan 28, 2014
413
0
Southampton
@MartinWL thanks for your thoughts and advice. I agree it was his lack of understanding that he couldn't stay at the care home at that point because he couldn't get to his bedroom which showed lack of capacity. From many things I've read my health and well-being don't enter into the equation. If he can demonstrate that he understands the difficulties with living at home in terms of safety etc but still decides that's where he wants to be I just have to suck it up!
I've been looking back over paperwork from when he was in hospital last year. I had a letter from the consultant regarding other matters buy j noticed that she stated 'the mental capacity assessment was vomited during a ward round'. This seems to me to be impossible, what she did could not have been a capacity assessment. I have heard that at the hospital they ask patients their age and date of birth, if they know where they are and who the prime minister is and consider that to be a capacity assessment. I'm planning on insisting that it is done properly, that I am able to hear what questions he is asked send what his responses are.
 

MartinWL

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Jun 12, 2020
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London
@yorkie46 The point about understanding the impact on you is this. To have capacity he must be able to understand information given to him in relation to the decision to be made. That's the law. He has to understand that, and it is relevant to the decision. He does not have to take your needs into account, he might choose to be cruel to you if he wants to, but he must understand the information given to him. He does not have to make a sensible decision. I would argue that the assessment would be wholly flawed if this information were not carefully explained to him along with the other issues and his understanding of it checked.

Of course knowing that Boris is the Prime Minister is no test at all as it is unrelated to the decision to be made.
 

yorkie46

Registered User
Jan 28, 2014
413
0
Southampton
Well things have gone from bad to worse today! I had a call from the 'therapist' at the hospital, she's a physio to me. They seem to hold all the cards when it comes to deciding if someone is fit for discharge!
She wanted to know what equipment he has at home, about the bungalow and about his personal care needs. I told it as it is. She was very nice, but they always are UNTIL they then tell you it's unlikely a care home will be recommended until you've tried carers 4x a day. We have only had them twice a day and that didn't work. Last August I was in exactly the same situation, they wanted to send carers 4x but I said no! I just didn't see the point in lunchtime and teatime or whatever time they would come. What were they going to do? I would be making our meals. Did they expect him to need the toilet at the exact time they turned up?! So here we go again, exactly the same scenario. We have proved that morning and evening carers don't work because they don't come at the times he wants to get up and go to bed, so I end up doing it and paying for the carers to do nothing. He doesn't want anyone else to care for him, he never has and he's not going to change now. I got upset on the phone and said so my health and welfare don't matter as long as he gets what he wants. She said he wants to come home and because he owns his home he's entitled to live there if that's what he decides. This is regardless of whether or not he's assessed as having capacity. She would speak to the medical staff about the assessment but they would have to decide whether they would do it! So hear we are back to square one. I told her I've been doing this for four years and he's got progressively worse and I'm just worn out, I can't do it any more. She said she understood and would go to see him, talk to ward and medical staff and get back to me. I'm in limbo yet again. I have to clear his stuff from the care home where he was in respite because that's been cancelled and would have ended on Wednesday.im then just expected to wait for their decision. My daughter and sister are furious and both planning on phoning tomorrow to express their concerns.
Can anyone throw any light on whether what I've been told is correct? She also asked if I have POA which I have.
 

Arthurgeorge

Registered User
Dec 16, 2020
82
0
Sounds like the ward are doing various assessments and they have asked the occupational therapy department for their input. The therapist has turned up, seen your husband, heard that usually he lives at home, assumed he was going home, and rung you for more information so that she can complete an assessment of his ot needs to see if anything more can be done to help him from the ot point of view.
I suspect she wasn’t aware of all the previous problems you have had with carers or how worn out you are and she now wants to pass that back to the ward staff.
I doubt that she has done a mental capacity assessment.
Hospitals do not work in a joined up way.
Have a rest tonight. Talk to the hospital social worker tomorrow.
Say No if you are not happy.
You are doing the best you can.
 

Sarasa

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Apr 13, 2018
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Nottinghamshire
Phone the support line tomorrow and talk things through with them. Haven't the hospital talked to the care home. Did the physio know the background? She may have thought your husband had come into hospital from home, not from a care home where it was taking two people to care for him at a time. The number of the support line is is 0333 150 3456 or email dementia.connect@alzheimers.org.uk.
Stay strong, and keep on refusing to have him home.
 

MartinWL

Registered User
Jun 12, 2020
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London
Your husband clearly needs to be in a care home for his own good as well as yours. You have described well the limitations of care at home. You are trapped by the disjointed processes involved in making an obvious decision with hospital staff trying to evaluate his abilities separately from the local authority. It is the local authority that has the duty of care once he leaves hospital so I would be inclined to bombard them with letters demanding that they offer him a care home place. I understand that he isn't self-funding. You have ample evidence of his physical condition. It seems unlikely that he has capacity to decide whether to live at home if that is thoroughly assessed according to law. I think you need to stand your ground on this and make it clear to the local authority and the hospital social worker that you refuse to care for him at home. This may even be a case in which you wi need a solicitor to fight your case.
 

yorkie46

Registered User
Jan 28, 2014
413
0
Southampton
Thanks @Arthurgeorge the person who spoke to me just said she was a therapist. I thought physio because she said she was going to see him to see what his mobility was like. I know physio and OT tend to merge into one these days. She did know he'd been admitted from care home and knew care home staff had said his mobility had deteriorated and as she put it he was 'heavy'. I don't think this referred to his weight more that he needed more than one carer. In any case I told her this. I also informed her about the restrictions inside the bungalow and the issues from a safety perspective. I don't think they fully understand without seeing it and seeing him in it. The place was built in the 30's and never designed for someone so disabled.
She told me it was not up to her to do a mental capacity assessment that was for the medical staff and she would speak to them about whether it was necessary. My issue is that firstly I don't believe they would or are able to carry out this test properly and secondly that she said regardless of capacity if he owns his own home he has the right to decide he wants to live there.
I have been told that the hospital social worker will not be involved until he is deemed fit for discharge. She has been sent all the records from his community social worker.
 

yorkie46

Registered User
Jan 28, 2014
413
0
Southampton
Thanks @Sarasa the therapist did know he had come from care home. I may phone the helpline today but I have a lot to deal with. I need to try to collect his belongings from care home including his wheelchair and Zimmer frame so I'm hoping my daughter can help. I have an appointment for my own bladder treatment this afternoon. I'm hoping to hear from the community social worker this morning.
 

Palerider

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Aug 9, 2015
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A conundrum for you @yorkie46, whether there is capacity or not best interests as @nitram outlined is the way forward and mention that to all those involved in the assessment. I personally have found physios and OTs to be brilliant at what they do in terms of their actual role, but unable to take the blinkers off when it comes to other elements of decision making. There will be someone somewhere who is senior enough to make a decision or guide that process based on all of the facts, not just a few specific assessments -have you tried PALS in trying to access who that person or persons are to have a dirtect conversation -difficult I know
 

Sarasa

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Apr 13, 2018
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Nottinghamshire
I hope you can concentrate on your own hospital visit today @yorkie46. You'll do no one, least of all yourself, any good if you become seriously unwell.
I think as @Palerider says contact PALs and try and get some joined up thinking going about what happens next. I hope the community social worker has something useful to say.
I'm pretty sure that the person you spoke to is mistaken in saying the fact that your husband owns his own home (along with you) means he can decide if he want to live there even if he has lost capacity. When my mother was first in care she knew where her home was and wanted to return to it. However once it was found she had lost capacity no suggestion was ever made that she could if she wanted leave the home and go back there.
 

MartinWL

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Jun 12, 2020
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London
My issue is that firstly I don't believe they would or are able to carry out this test properly and secondly that she said regardless of capacity if he owns his own home he has the right to decide he wants to live there.
That is legal nonsense. The ownership of his house has nothing to do with whether he has capacity to decide where he will live, or not. ( Unless he for some reason needs to understand a complication regarding ownership, which seems improbable).
 

yorkie46

Registered User
Jan 28, 2014
413
0
Southampton
Thank you to everyone who has replied to my recent posts. Things have moved on today and I finally have a glimmer of hope. My daughter contacted the therapist who had spoken to me about my husband. She felt that the therapist really understood the situation and how I am feeling. She said the bungalow was clearly unsuitable for him because of his risk of falls and that he has no understanding of how his condition impacts me. She recognised that I am exhausted and unable to cope with him at home. She explained that whilst there is a procedure to follow regarding trying all appropriate avenues before recommending residential care she feels that every case needs to be looked at individually. She has requested a mental capacity assessment and has made as strong a case as she could to all the other professionals involved that he be referred for discharge to assess in a care home or nursing home. I have since spoken to the ward sister who informed me that the referral had been completed and would be picked up by a hospital social worker. I'm not quite what happens after this but I know the wheels have been set in motion. I have had a conversation with the community social worker who has assured me that she can see on the system that the referral has reached the hospital social worker along with all her records of what has been tried. I have also spoken with a specialist dementia nurse who said this is the best way forward, it is difficult to assess dementia patients properly in a hospital setting, she has promised to chase the referral on Thursday and contact me again to update me.
So I am feeling happier though not counting my chickens yet.
I have asked the ward sister not to tell my husband about all this until it is all arranged as he is still saying he hopes he will be home this week. I've told him they need to get him well and he needs to be able to walk otherwise he can't manage at home.
Fingers crossed things will move on quickly from here.
 

Sarasa

Volunteer Host
Apr 13, 2018
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Nottinghamshire
Oh that is good news @yorkie46. Fingers crossed it all goes more smoothly from now on. I hope your hospital appointment went well too.
Glad you've got your daughter supporting you as well.