How to dispute mental capacity decision

[Always smile]

We provided a 6 page letter with accompanying photos; testimony from people who know my Dad well and have done for 30+ years (but are not family) and the geriatric consultant on his ward submitted a complaint about the outcome of the capacity assessment. All that happened was that they doubled down and kept repeating the mantra "capacity can fluctuate" without actually doing anything. All they've done is made my life hell; placed carers at risk from his aggression and left him in a vulnerable position. He's lost a considerable amount of weight since he was discharged via this care assessment but he refuses to eat or drink anything that carers give him. But he has capacity, right? But not if it involves any medical care, he doesn't, apparently.

This is appalling. The system is completely broken. I feel for you and your Dad. So much unnecessary suffering to all involved. The unfortunate thing is your Dad is still making his way back home after his wanderings. Apparently they take more notice when he doesn't make it back. To wait for that scenario is just awful. ’Capacity can fluctuate’…..I’ll be ready for that one. In the meantime, we reluctantly watch our loved ones struggle sometimes, just so we can add something else to the list of why they’re not coping at home…

I’ve just observed Mum allowing a stranger in the house….another tick for us! Don’t worry, we were with her on Ring and he was a salesman who quickly realised it wasn’t going to go anywhere…..but it only takes a minute for something awful to happen…….we have video evidence, and it was a short moment. We had to let it happen to get the evidence…it’s just ridiculous and now Mum thinks someone has knocked on her door to buy her house….we’re in for one of those days now…but we’ve got another tick for SS. It’s pathetic.

 

[DaftDad]

This is appalling. The system is completely broken. I feel for you and your Dad. So much unnecessary suffering to all involved. The unfortunate thing is your Dad is still making his way back home after his wanderings. Apparently they take more notice when he doesn't make it back. To wait for that scenario is just awful. ’Capacity can fluctuate’…..I’ll be ready for that one. In the meantime, we reluctantly watch our loved ones struggle sometimes, just so we can add something else to the list of why they’re not coping at home…

I’ve just observed Mum allowing a stranger in the house….another tick for us! Don’t worry, we were with her on Ring and he was a salesman who quickly realised it wasn’t going to go anywhere…..but it only takes a minute for something awful to happen…….we have video evidence, and it was a short moment. We had to let it happen to get the evidence…it’s just ridiculous and now Mum thinks someone has knocked on her door to buy her house….we’re in for one of those days now…but we’ve got another tick for SS. It’s pathetic.

We've had someone in hi-viz with "Gas" on the back, trying his front door handle both on Wednesday and again today! There IS gas main work happening on the street but I phoned the gas company today to report it. If it was one of their workmen, why is he trying the door?! And if not, I'll be in touch with the local authority trading standards and police because it'll obviously be a scammer of some kind. On the first attempt, Dad was home but didn't hear or react. Today, Dad had gone wandering and wasn't home. So many things for us to all worry about 😕

 

[northumbrian_k]

Hi @Always smile I do wonder whether there is an option for you to just disregard what social workers or anyone else says and do what you think is best. Your mum will be self funding so there's no immediate need for social services to be involved. In our case, the fact that my wife could self-fund meant that social services took no interest and had no involvement in her care plan.

My wife never had a capacity assessment by anyone other than me when she was living at home. That did not stop me from making what I thought were the best arrangements to meet her needs. I am Attorney for both finance & property and health & welfare but that's somewhat of an aside as I have rarely needed to reference this in dealing with care agencies.

My wife would say that she did all the normal things that she had always done but this was not the case. Personal care, dress sense, sequencing and hygiene were on a downward trajectory. She was not aware of external issues and no longer capable of rational discussion or decision-making. In short, she had limited capacity.

Knowing this I arranged for her to go into respite care for a short stay. I didn't tell her beforehand and got her befriender to drop her off. The stay was successful as she thought she was in a hotel (and that I was there too). More importantly it exposed her limited capacity to such an extent that for subsequent stays a Deprivation of Liberty Safeguarding authorisation (DOLS) was granted. This involved her being interviewed by a psychiatrist and a best interests assessor. She was deemed to be confused in time, place and person, incapable of processing information of moderate complexity and unable to make a reasoned decision about where she should live. Further periods of respite were agreed as a way of allowing me - her sole carer - to 'recharge my batteries'.

Hence, as my wife had been shown to lack capacity, decisions on her future care fell to me. The respite stays gave me the courage I needed to make the hardest and best decision, which was to arrange for her admission to a care home. A new DOLS was authorised for the care home.

She self-funded for 20 months. When Local Authority funding became necessary, social services suddenly became interested. There was some talk of looking at other options, but the fact that she was already in a home under a DOLS authorisation meant that social services had little choice but to accept this as the best solution.

I am not sure whether some of what I have described might point to a way forward that doesn't involve challenging your mum's capacity assessment. It may be more difficult to do something similar if your mum is aware but perhaps not impossible. I wish you luck in achieving what is best for your mum and for you too.

 

[Always smile]

Hi @Always smile I do wonder whether there is an option for you to just disregard what social workers or anyone else says and do what you think is best. Your mum will be self funding so there's no immediate need for social services to be involved. In our case, the fact that my wife could self-fund meant that social services took no interest and had no involvement in her care plan.

My wife never had a capacity assessment by anyone other than me when she was living at home. That did not stop me from making what I thought were the best arrangements to meet her needs. I am Attorney for both finance & property and health & welfare but that's somewhat of an aside as I have rarely needed to reference this in dealing with care agencies.

My wife would say that she did all the normal things that she had always done but this was not the case. Personal care, dress sense, sequencing and hygiene were on a downward trajectory. She was not aware of external issues and no longer capable of rational discussion or decision-making. In short, she had limited capacity.

Knowing this I arranged for her to go into respite care for a short stay. I didn't tell her beforehand and got her befriender to drop her off. The stay was successful as she thought she was in a hotel (and that I was there too). More importantly it exposed her limited capacity to such an extent that for subsequent stays a Deprivation of Liberty Safeguarding authorisation (DOLS) was granted. This involved her being interviewed by a psychiatrist and a best interests assessor. She was deemed to be confused in time, place and person, incapable of processing information of moderate complexity and unable to make a reasoned decision about where she should live. Further periods of respite were agreed as a way of allowing me - her sole carer - to 'recharge my batteries'.

Hence, as my wife had been shown to lack capacity, decisions on her future care fell to me. The respite stays gave me the courage I needed to make the hardest and best decision, which was to arrange for her admission to a care home. A new DOLS was authorised for the care home.

She self-funded for 20 months. When Local Authority funding became necessary, social services suddenly became interested. There was some talk of looking at other options, but the fact that she was already in a home under a DOLS authorisation meant that social services had little choice but to accept this as the best solution.

I am not sure whether some of what I have described might point to a way forward that doesn't involve challenging your mum's capacity assessment. It may be more difficult to do something similar if your mum is aware but perhaps not impossible. I wish you luck in achieving what is best for your mum and for you too.

Thank you so much for this. Unfortunately Mum already has a Care Plan in place and is still deemed in control of her own care choices. It’s unbelievable really. Therefore, if I were to move her into a Care Home myself, I would be doing something against her will and therefore in the wrong. Even though it’s in her best interests.

Yet again she’s in the same clothes she wore last week. She does not see stains, dropped food etc etc. I have to take her to the hairdresser this week. A challenge in itself. The first one being, getting to her house in time to make sure her clothes are clean enough to go out. ‘They’re alright she says’. I ignore the urge to burst into tears once again. I already know she won’t want to go. I’m also looking to get the Carers to do these things, even though the cost for this event will be very expensive. Funny how we do it all, use our fuel etc, and use all our time, for free. I don’t get carers allowance. Mum recently had a refund of £600 from SS for times the Carers didn’t go. That means I went then, but I won’t see that £600, even though time off work/family is never free. Yes I am getting slightly annoyed by it all now. Perhaps it’s just a down day.

We are definitely going to consider and implement the respite week or two. Great idea. This will be a real eye opener for a care environment. We haven’t had a holiday for 5 years so are trying to sort something later this year now that we can manage it financially and mentally. I’ve not been in a good way myself, but am slowly beginning to look forward. It’s been going on so long, it’s exhausting isn’t it. Thank you again.

 

[Always smile]

Mums incontinence has been confirmed. It’s sporadic at the moment. I suspected this but the Carer wrote in her report that mum had a double incontinence accident when she was present. Really at wits end. It’s one thing after another. Mum should not be at home. End of. Amongst the other risks to her safety and lack of understanding about these things, her toilet is upstairs. That is not going to change.

Advise required please. Thank you in advance. She doesn’t have an UTI and recent annual blood checks all ok.

- Do I call SS and say this just isn’t going to work. It’s yet another thing on my list of reasons why she’s not capable of being at home. She probably won’t want or wear incontinence pads and do not mention a Commode. She definitely won’t use that or even remember it’s there. She’ll walk past a stair lift also.
- Just buy washable incontinence underwear ongoing and get rid of all normal underwear. Sorted?
- Approach the GP. They will say make an appointment. I just can’t do this anymore, especially at present. Emotionally I just can’t do it. I currently have no Carer that I can call on to help with appointments like this. Mum could not use a chaperone service as she wouldn’t understand and would need more support than someone just taking her to the GP
- Call a District Nurse direct for advice and maybe some help with NHS products/underwear. Can you do this direct?

Sorry to be naive about this,

 

[DaftDad]

@Always smile, really sorry to hear what's unfolding for you and your Mum. I would email/write to the GP with all concerns and ask them to make a safeguarding referral. In the email/letter, point out she is house-bound and requires home visits for any GP visit, do NOT suggest you can take her. In addition, report back to SS that you have concerns about your Mum's dementia progressing and her ability to care for herself and that you think a new needs assessment is required. If capacity was assessed last year, it can definitely change. Cynically, suggest they come to the house at a time when you know your Mum is less able to sound plausible. As you know, we have a similar issue with my Dad, who can come across as very plausible (plausible nonsense though) and so we have the same kind of obstacle with the capacity assessments. However, Dad isn't as far along re: incontinence and the rest. I would also try to be there when they make an appointment to come - perhaps wait and see the day/time and then just conveniently be passing by (but DON'T be coming for some useful reason - don't bring shopping, or be calling to provide care!)

In the immediate short term, it might be a good idea to buy some decent incontinence underwear to keep your Mum's skin safe, as having wet underwear will impact her skin rapidly, especially if she is always in her chair. Some of the period underwear makers are making washable incontinence garments, which look like ordinary knickers, not like paper/disposable ones.

 

[Rosettastone57]

Thank you so much for this. Unfortunately Mum already has a Care Plan in place and is still deemed in control of her own care choices. It’s unbelievable really. Therefore, if I were to move her into a Care Home myself, I would be doing something against her will and therefore in the wrong. Even though it’s in her best interests.

Yet again she’s in the same clothes she wore last week. She does not see stains, dropped food etc etc. I have to take her to the hairdresser this week. A challenge in itself. The first one being, getting to her house in time to make sure her clothes are clean enough to go out. ‘They’re alright she says’. I ignore the urge to burst into tears once again. I already know she won’t want to go. I’m also looking to get the Carers to do these things, even though the cost for this event will be very expensive. Funny how we do it all, use our fuel etc, and use all our time, for free. I don’t get carers allowance. Mum recently had a refund of £600 from SS for times the Carers didn’t go. That means I went then, but I won’t see that £600, even though time off work/family is never free. Yes I am getting slightly annoyed by it all now. Perhaps it’s just a down day.

We are definitely going to consider and implement the respite week or two. Great idea. This will be a real eye opener for a care environment. We haven’t had a holiday for 5 years so are trying to sort something later this year now that we can manage it financially and mentally. I’ve not been in a good way myself, but am slowly beginning to look forward. It’s been going on so long, it’s exhausting isn’t it. Thank you again.

If your mum is self funding, I'm actually surprised that the local authority social services are interested. Others will be along soon with better advice, but I wonder whether employing an independent social worker for a capacity assessment and organising a care home might be a better option. This involves fees of course and hopefully a forum member who has used this service may be able to advise.

 

[LadyLouise]

I had a similar experience with a relative who was at severe risk from self neglect. We eventually got SS to agree that if we could persuade her to physically get in the car and take her to a care home, that we could. This was after she had set her flat on fire, and they were still dragging their heels!!! We did get her into the care home (althoughIm afraid we had to tell some white lies to get her cooperation). she thrived as well as she could. ***edited, I see your previous reply so this isn’t an option until you can get her care plan changed****This was a few years ago but I got excellent advice from the Age UK specialist advice line, you can ask to be referred from their standard advice line. The key thing to point out they said is that the disease itself causes a lack of insight into her condition and that she has the right to be protected from harms caused by self neglect. I believe the legal definition about capacity hinges on whether it’s poor decision making, or the incapacity to make decisions. When your mum is engaging in risky behaviour and self neglect, she isn’t making poor decisions. Her disease is taking away her ability to perceive and understand what she needs, or to have any comprehension of consequences to her behaviour such as falls or food poisoning. I really feel for you, I hope you can get the support you need.

 

[SAP]

I can’t see a recommendation for contacting the Admiral Nurses but this may be another option for you.

What is an Admiral Nurse and how can they help?

Dementia UK is a charity that provides Admiral Nurses for families affected by dementia. Call our Dementia Helpline to find out how we can support you.

www.dementiauk.org

 

[Always smile]

@Always smile, really sorry to hear what's unfolding for you and your Mum. I would email/write to the GP with all concerns and ask them to make a safeguarding referral. In the email/letter, point out she is house-bound and requires home visits for any GP visit, do NOT suggest you can take her. In addition, report back to SS that you have concerns about your Mum's dementia progressing and her ability to care for herself and that you think a new needs assessment is required. If capacity was assessed last year, it can definitely change. Cynically, suggest they come to the house at a time when you know your Mum is less able to sound plausible. As you know, we have a similar issue with my Dad, who can come across as very plausible (plausible nonsense though) and so we have the same kind of obstacle with the capacity assessments. However, Dad isn't as far along re: incontinence and the rest. I would also try to be there when they make an appointment to come - perhaps wait and see the day/time and then just conveniently be passing by (but DON'T be coming for some useful reason - don't bring shopping, or be calling to provide care!)

In the immediate short term, it might be a good idea to buy some decent incontinence underwear to keep your Mum's skin safe, as having wet underwear will impact her skin rapidly, especially if she is always in her chair. Some of the period underwear makers are making washable incontinence garments, which look like ordinary knickers, not like paper/disposable ones.

Thank you @DaftDad. We’re already on the waiting list for a new Care Assessment but I’m definitely calling SS next week to add this to our case - just couldn’t face it today. It’s quite a long list again now.

In the meantime I’m getting some washable underwear as suggested, and the main Carers have suggested night time wear also and bed pads etc. I probably should have thought of this before as this stage happens with Alzheimer’s eventually. Sigh.

I was included in most SS meetings last year, except for the mental capacity one as I wasn’t allowed to be there, or know when it was. Mum is very different now. I think they’d struggle to make her understand anything, unless she pulls out the one day in six months where she seems perfectly capable and happy, but not really if they dig deep enough. I will definitely aim to be there every time and will definitely be firmer, now I’m wiser about how it all works and the main triggers for residential care.

Yes, I’m going to be using the term housebound when we next need a GP or nurse, for sure. I’ll contact the surgery anyway so this stage is noted.

 

[StressedDaughter]

Thank you @DaftDad. We’re already on the waiting list for a new Care Assessment but I’m definitely calling SS next week to add this to our case - just couldn’t face it today. It’s quite a long list again now.

In the meantime I’m getting some washable underwear as suggested, and the main Carers have suggested night time wear also and bed pads etc. I probably should have thought of this before as this stage happens with Alzheimer’s eventually. Sigh.

I was included in most SS meetings last year, except for the mental capacity one as I wasn’t allowed to be there, or know when it was. Mum is very different now. I think they’d struggle to make her understand anything, unless she pulls out the one day in six months where she seems perfectly capable and happy, but not really if they dig deep enough. I will definitely aim to be there every time and will definitely be firmer, now I’m wiser about how it all works and the main triggers for residential care.

Yes, I’m going to be using the term housebound when we next need a GP or nurse, for sure. I’ll contact the surgery anyway so this stage is noted.

Once social services knew Mum was self funding, they stepped away and would not do anything ‘to help’. Reading though your posts I am now glad. I organised respite in a care home following a long hospital stay - she went and agreed to stay. I am honestly so sad about relatives who are totally ignored when they put their lives on hold and love and care for their relatives - which must account for a huge majority of us. We only want the best in a sad situation. Hope things work out for you