Mum has been put on One on One at terrific cost and no treatment

[Fearnodarkness]

I wonder if anyone can give us any insight from experience.

Mum who has a tendency to challenging behaviour (hitting other residents who she doesn't like) has after 6 months in the Home now been put on One on One after hitting the same other person twice within a few weeks.

For 12 hours a day the cost is over £5,000 for her 4-week billing period, making her care costs £10,000 per 4 weeks. We thought her money would last her lifetime, and also we are stunned at the amount. I've heard of people legitimately having to pay £2,000 a week for care, in this situation. But what I can't quite get my head round is, this has to be a mental health issue, but she is not being treated in any way. Just accompanied all the time.

The Care Manager has hinted that the application for NHS funding which had already been made, would now be "put on emergency", as she is "a danger to herself and others", and not to worry too much. But I know the Home cannot guarantee this, even though they handle a lot of Local Authority residents and should know how to make a qualifying application.

Also Mum is a self-funder and I have heard that self funders hardly ever get NHS financing, and many people are losing it.

I understand that the Psychiatrist (who we dont' know) doens't want to "sedate" her, but people with mental health problems can get treatment (eventually) which doesn'st "knock them out". But I hardly know anything about this.

Can anyone help?

 

[Louise7]

I know that one to one care is expensive but that cost sounds excessive. Has the home tried any other solutions first, such as keeping your Mum away from the individual she is hitting (if possible)?

The Care Manager has hinted that the application for NHS funding which had already been made, would now be "put on emergency", as she is "a danger to herself and others", and not to worry too much. But I know the Home cannot guarantee this, even though they handle a lot of Local Authority residents and should know how to make a qualifying application.

When was the application made? A CHC decision is usually made pretty quickly, within a few weeks. There's a 'fast track' system for those seriously ill but I've never heard of one "being put on emergency". If I were you I'd be asking a few more questions about when the application was submitted, rather than rely on a 'hint' from the manager. CHC funding is based on need, not whether someone is self-funding or not, although you are right that it can be difficult to qualify for full CHC funding.

You mention a 'psychiatrist' but has your Mum been seen by the elderly mental health team? As you say, there is various medication available to help with challenging behaviour which doesn't involve excessive sedation. My Mum was treated by them and it can take a bit of time to find the right medication as it can be a case of trial and error to start with. I think I would be asking some more questions about who this psychiatrist is and contacting them myself as the home don't seem to be really doing anything proactive to find an alternative solution to one to one care.

 

[nitram]

Fast track only applies if the person has a prognosis of limited life.

However from what you say you should push for a normal checklist and DST to be completed ASAP.
Aim for a 'priority' in the behaviour domain.

 

[Fearnodarkness]

Thank you to both. (I thought I had done a reply but it's not here, so I must have not posted.)

The Care Manager said the application was done on or around 6th June, and he said it should take 6-8 weeks but that the relevant CCG was re-organising so it might take longer. (8 weeks would be about now.) When the 1 on 1 struck, he said they would have it put on "urgent", whatever that means. We saw him at the weekend, and he said she "should" get this because of the "danger", but we all know that nothing is sure.

I'm not sure who the "elderly mental health" team would be, but she has apparently been seen by the Community Psychiatric Nurse for her area, under the aegis of the psychiatrist. I do have names now but I must think before I approach the CPN - the last one was very nice, but I came to realise that minimising (their) complications was a priority.

I asked about medication, and the Care Manager said kindly that nobody wanted to sedate her so that she was out of it and drooling. I wondered how it is that those of us who are taking medication for anxiety etc. take our medication and can still get on with our daily lives, yet for her the only option seems to be something they would consider over-sedating her. I think you are right Louise7 and I must try and find the person to ask more specific questions from.

Thanks again!

 

[Shedrech]

hi @Fearnodarkness
I am amazed at all this - your mum's behaviour (from what you describe) is not unusual and in my dad's home is dealt with by staff being vigilant and careful management of who is where
my dad has had some challenging times but I only know of one resident who had any extended 1to1 supervision and that was only for a specific amount of time
personally, I would be asking lots of questions and even considering whether the home really is set up to support residents with dementia
most of us are happy to have our parent's fees self-funded from their hard earned savings, but I would certainly baulk at the amount you are being billed

 

[margherita]

Hope someone here can advise you.
I am not in the UK, but in Italy, where paid carers cost much less.

 

[love.dad.but..]

I have no experience of this...Dad had challenges and was in a dementia NH. However..a couple of very challenging physically aggressive residents where medication seemed not to make any difference and the risk to themselves other residents and staff was considered very high were given 28 days notice which forced the issue with SS to find them CHC funded long term placements in a secure dementia units attached to a NHS hospital with a very high staff ratio. The problem it seems to me is that the home is not able to meet the change in your mum's needs even though an EMI and throwing any amount of short term cash at 121 care in any case is not an adequate solution. Dad was always a self funder so I don't have any first hand knowledge of other funding but surely if your mum is viewed as being such a risk to others even as a self funder it is the responsibility of SS to ensure through duty of care to a vulnerable adult that she is placed in a suitable home who can handle her and where 121 is not necessary. If her funds are being depleted quickly and in other areas she is reasonable healthy then she will eventually require LA funding which if she is still having 121 ..... which the LA may not be willing to accept such an amount a different home may be needed then anyway

 

[SoAlone]

My OH presents much as your Mum, with challenging and aggressive behaviour. The nearest specialist Unit to us is in another county and we were advised that cost would be £2000 per week. Because the waiting list was so long and we needed to move him from the General Hospital, we found a Nursing Home locally and he has been there for 4 weeks now. Not without incident, obviously but nothing unusual.
Anyway the reason for my reply is that we have CHC funding and because of the constantly moving goal posts and the fact that there is no set criteria, I contacted Age Concern who were really great. They gave me details of a company called Beacon who give 45 minutes free advice (that is funded by NHS) regarding CHC funding and if needed can help you fight the decision (the fight comes with costs obviously) I also spoke directly with the local CCG who approve CHC funding and they too were helpful. The paperwork required for CHC funding is I think called a DST (Decision Support Tool) and in my OH case was about 70 pages and you should be asked to read and agree it before submission, as I understand it.
To sum up, it is a minefield and even if granted isn't forever, as it is constantly reviewed, but there is some help out there. Good luck

 

[Elle3]

I wonder if anyone can give us any insight from experience.

Mum who has a tendency to challenging behaviour (hitting other residents who she doesn't like) has after 6 months in the Home now been put on One on One after hitting the same other person twice within a few weeks.

For 12 hours a day the cost is over £5,000 for her 4-week billing period, making her care costs £10,000 per 4 weeks. We thought her money would last her lifetime, and also we are stunned at the amount. I've heard of people legitimately having to pay £2,000 a week for care, in this situation. But what I can't quite get my head round is, this has to be a mental health issue, but she is not being treated in any way. Just accompanied all the time.

The Care Manager has hinted that the application for NHS funding which had already been made, would now be "put on emergency", as she is "a danger to herself and others", and not to worry too much. But I know the Home cannot guarantee this, even though they handle a lot of Local Authority residents and should know how to make a qualifying application.

Also Mum is a self-funder and I have heard that self funders hardly ever get NHS financing, and many people are losing it.

I understand that the Psychiatrist (who we dont' know) doens't want to "sedate" her, but people with mental health problems can get treatment (eventually) which doesn'st "knock them out". But I hardly know anything about this.

Can anyone help?

Hi there, I have been in a similar situation with my dad. I will try to keep it brief. My dad was admitted into an EMI care home but after just one week they said he was too challenging and asked for him to be removed. Dad had a Social worker who organised a crisis meeting between herself, me and the Care home manager to discuss what could be done going forward. It was agreed that the mental health team should do an urgent assessment and until we could find a new care home willing to take dad, dad would have 121 care for 10 hours a day provided by an agency nurse, this was at a cost of £14 per hour and all she did was accompany dad and as dad was self funding the SW asked that they provide me with a log of what the nurse was doing to justify the cost, I also paid the agency direct, not through the Care home. This was on top of the Care home fees. Dad was also prescribed Lorazepam and Trazodone to calm him by the Mental Health team when they assessed him.

Three weeks later I found dad a new care home, which has what they call a Dementia + unit which deals with challenging behaviour. The weekly cost was £500 more (£1,100 per week) but still worked out cheaper than the cost of the 121 + the other Care home fee. After dad had settled there for 4 weeks (this care home is brilliant and is more than capable of handling challenging behaviour and look for triggers etc to stop it and the residents to staff ratio is much smaller) the SW did an initial CHC Assessment, which ticked all the boxes for dad to be referred for the full assessment by the CHC team. She explained this had to be done within 28 days from when she submits her paperwork.

The CHC Assessment team came out just over 2 weeks later, I was present, the nurse at the care home and my dad, unfortunately the SW couldn’t attend but had already met with the team a couple of days earlier to provide her feedback and evidence. Evidence is key for the assessment, the Care home must have a log of all the challenging behaviour, triggers, unpredictability, safe guarding issues etc. The CHC team go through each of the criteria’s and ask for feedback/evidence then they score it and ask if we all agree. At the end they give their assessment and my dad was found to be eligible for funding and it was referred to panel for their agreement, which they gave.

Now the difficult bit, it turns out CHC funding has a limit and the Care home cost was more than that limit, but as dad was now settled in his new care home and they thought it wouldn’t be good to move him, his case was referred to the Assistant Director of the CQC who agreed to meet the full cost of funding for that home. This was back in June and the Care home still haven’t got the paperwork through, it’s in the system, but I’ve been told it can take a good while. So currently we are still paying dad’s care home fees, but have been assured that all this will be refunded from the date the assessment took place back in June.

Sorry, not as brief as I would have liked, but I hope it gave you some insight of the process we have been through, but I have to say I couldn’t have done it without the SW. I hope you can get some support too.

Elle x

 

[Wendy53]

I wonder if anyone can give us any insight from experience.

Mum who has a tendency to challenging behaviour (hitting other residents who she doesn't like) has after 6 months in the Home now been put on One on One after hitting the same other person twice within a few weeks.

For 12 hours a day the cost is over £5,000 for her 4-week billing period, making her care costs £10,000 per 4 weeks. We thought her money would last her lifetime, and also we are stunned at the amount. I've heard of people legitimately having to pay £2,000 a week for care, in this situation. But what I can't quite get my head round is, this has to be a mental health issue, but she is not being treated in any way. Just accompanied all the time.

The Care Manager has hinted that the application for NHS funding which had already been made, would now be "put on emergency", as she is "a danger to herself and others", and not to worry too much. But I know the Home cannot guarantee this, even though they handle a lot of Local Authority residents and should know how to make a qualifying application.

Also Mum is a self-funder and I have heard that self funders hardly ever get NHS financing, and many people are losing it.

I understand that the Psychiatrist (who we dont' know) doens't want to "sedate" her, but people with mental health problems can get treatment (eventually) which doesn'st "knock them out". But I hardly know anything about this.

Can anyone help?

Hello, my husbands gran had Alzhiemers, she has recently gone in a home, she owns her own bungalow & has savings, dont know if you have tried this, i went online and looked at continuing healthcare, if all the assesments meet the requirement, you can possibly get this, i found a company by chance and my mother & father in law had to pay nearly £3000 up front, they took care of everything, legal stuff , paperwork, chasing doctors notes etc, my husbands gran has been granted £750 per week towards her care. At the mo hers is approx £800 a week , so it nearly covers it, why should these homes take all there savings, im so glad I found this company for them, it`s took a lot of stress off them.Hope this helps

 

[Fearnodarkness]

Thank you to everyone who replied since my post was posted on this Forum on Thursday. It was in another Forum area before (by accident) and I had some great replies, but now I have some more replies from folk who have been dealing with this in all kinds of ways and it has filled in so much information I didn't have before.

Mum doesn't have a social worker, never has, as she was looking after herself with our support so we never turned to them for an assessment, and after her accident she was being overseen by the Mental Health Team, but of course that is not the same thing. The Home have put in a CHC application, but we don't know what is in it, and haven't been asked or advised to take part, or read it, or anything by anyone.

@Shedrech I am beginning to learn that "dementia" and "EMI" does not necessarily mean that they have all the facilities needed to handle someone with difficult behaviour, particularly towards other residents. She's been moved twice already, in effect because nobody told us she needed a " dementia unit ", not just a home that said they could take people with dementia. (To be fair, she didn't start displaying genuinely violent behaviour until she came out of hospital - I think she never felt "in competition" witih the other patients while in hospital, whereas as soon as she got into a communal atmosphere, she started asserting herself.)

@love.dad.but I was hoping that she would not have to move again as in many ways she is more settled here now and seems content with the environment, but I can see this could result is having to look for another home for her. I am at my wits end with this and may if that comes about simply have to say to the Social Services, Please you must find her a suitable place this time, as we are not succeeding, and it's causing problems. I don't know how this would turn out.

@SoAlone, thank you for that information. When I asked a very reputable Helpline in 2014, if there was anyone out there would could help us find a home for Mum when it was needed, we were told that there weren't such people, you had to sort it out yourself. Things appear to have changed, there now are some advisors and companies that specialise in this direction. I also didn't know we could speak directly to the CCG about this.

@Elle3 I am glad you were not more brief as you have given enough detail for us to get an idea of how these things work - we already had a feeling that goalposts are moving fast everywhere (as everyone tries to contain costs). We weren't sure if CHC funding was limited or overall, but we believed that she would have to pay all her Personal Care costs in any case - it was when it doubled due to the One to One costs that we were alarmed at where it would leave her (and us).

It sounds as if we should be asking for her to have a social worker - the only person who has ever hinted this would be a good idea was the manager of her last home, just before she was moved again, and things seemed to be gonig OK (and she changed Local Authority area) so we didn't pursue this. It sounds as if we should have done. I'm told I can talk to the Community Psychiatric Nurse, who is the one "this is being done through" (ie the mental health assessment) but I wonder if I have trusted too much in the Mental Health Team and in the end it's not their decision, or their job to fight people's corner in this situation.

@Wendy 53, thank you, would you be able to tell me the name of the company they used? There are some out there, but we don't have any personal experience of this. If we get stuck I know we will need to find someone to represent us.

@margherita, hi, yes, I don't know what has happened to the "care sector" in the last 10 years but it seems to have got more and more difficult to find good homes, and affordable ones, and even personal care at home is expensive, and of course carers are cautious about taking on someone with challenging behaviour.

Thank you! Now I must his Post and hope this is OK ...

 

[Wendy53]

Thank you to everyone who replied since my post was posted on this Forum on Thursday. It was in another Forum area before (by accident) and I had some great replies, but now I have some more replies from folk who have been dealing with this in all kinds of ways and it has filled in so much information I didn't have before.

Mum doesn't have a social worker, never has, as she was looking after herself with our support so we never turned to them for an assessment, and after her accident she was being overseen by the Mental Health Team, but of course that is not the same thing. The Home have put in a CHC application, but we don't know what is in it, and haven't been asked or advised to take part, or read it, or anything by anyone.

@Shedrech I am beginning to learn that "dementia" and "EMI" does not necessarily mean that they have all the facilities needed to handle someone with difficult behaviour, particularly towards other residents. She's been moved twice already, in effect because nobody told us she needed a " dementia unit ", not just a home that said they could take people with dementia. (To be fair, she didn't start displaying genuinely violent behaviour until she came out of hospital - I think she never felt "in competition" witih the other patients while in hospital, whereas as soon as she got into a communal atmosphere, she started asserting herself.)

@love.dad.but I was hoping that she would not have to move again as in many ways she is more settled here now and seems content with the environment, but I can see this could result is having to look for another home for her. I am at my wits end with this and may if that comes about simply have to say to the Social Services, Please you must find her a suitable place this time, as we are not succeeding, and it's causing problems. I don't know how this would turn out.

@SoAlone, thank you for that information. When I asked a very reputable Helpline in 2014, if there was anyone out there would could help us find a home for Mum when it was needed, we were told that there weren't such people, you had to sort it out yourself. Things appear to have changed, there now are some advisors and companies that specialise in this direction. I also didn't know we could speak directly to the CCG about this.

@Elle3 I am glad you were not more brief as you have given enough detail for us to get an idea of how these things work - we already had a feeling that goalposts are moving fast everywhere (as everyone tries to contain costs). We weren't sure if CHC funding was limited or overall, but we believed that she would have to pay all her Personal Care costs in any case - it was when it doubled due to the One to One costs that we were alarmed at where it would leave her (and us).

It sounds as if we should be asking for her to have a social worker - the only person who has ever hinted this would be a good idea was the manager of her last home, just before she was moved again, and things seemed to be gonig OK (and she changed Local Authority area) so we didn't pursue this. It sounds as if we should have done. I'm told I can talk to the Community Psychiatric Nurse, who is the one "this is being done through" (ie the mental health assessment) but I wonder if I have trusted too much in the Mental Health Team and in the end it's not their decision, or their job to fight people's corner in this situation.

@Wendy 53, thank you, would you be able to tell me the name of the company they used? There are some out there, but we don't have any personal experience of this. If we get stuck I know we will need to find someone to represent us.

@margherita, hi, yes, I don't know what has happened to the "care sector" in the last 10 years but it seems to have got more and more difficult to find good homes, and affordable ones, and even personal care at home is expensive, and of course carers are cautious about taking on someone with challenging behaviour.

Thank you! Now I must his Post and hope this is OK ...

If im not allowed to say the name, maybe if i give you a clue to the name, its something you use if you go walking to direct you in the right direction, sorry im not allowed to type the name

 

[Wendy53]

If im not allowed to say the name, maybe if i give you a clue to the name, its something you use if you go walking to direct you in the right direction, sorry im not allowed to type the name

North south east west

 

[Platinum]

Thank you to everyone who replied since my post was posted on this Forum on Thursday. It was in another Forum area before (by accident) and I had some great replies, but now I have some more replies from folk who have been dealing with this in all kinds of ways and it has filled in so much information I didn't have before.

Mum doesn't have a social worker, never has, as she was looking after herself with our support so we never turned to them for an assessment, and after her accident she was being overseen by the Mental Health Team, but of course that is not the same thing. The Home have put in a CHC application, but we don't know what is in it, and haven't been asked or advised to take part, or read it, or anything by anyone.

@Shedrech I am beginning to learn that "dementia" and "EMI" does not necessarily mean that they have all the facilities needed to handle someone with difficult behaviour, particularly towards other residents. She's been moved twice already, in effect because nobody told us she needed a " dementia unit ", not just a home that said they could take people with dementia. (To be fair, she didn't start displaying genuinely violent behaviour until she came out of hospital - I think she never felt "in competition" witih the other patients while in hospital, whereas as soon as she got into a communal atmosphere, she started asserting herself.)

@love.dad.but I was hoping that she would not have to move again as in many ways she is more settled here now and seems content with the environment, but I can see this could result is having to look for another home for her. I am at my wits end with this and may if that comes about simply have to say to the Social Services, Please you must find her a suitable place this time, as we are not succeeding, and it's causing problems. I don't know how this would turn out.

@SoAlone, thank you for that information. When I asked a very reputable Helpline in 2014, if there was anyone out there would could help us find a home for Mum when it was needed, we were told that there weren't such people, you had to sort it out yourself. Things appear to have changed, there now are some advisors and companies that specialise in this direction. I also didn't know we could speak directly to the CCG about this.

@Elle3 I am glad you were not more brief as you have given enough detail for us to get an idea of how these things work - we already had a feeling that goalposts are moving fast everywhere (as everyone tries to contain costs). We weren't sure if CHC funding was limited or overall, but we believed that she would have to pay all her Personal Care costs in any case - it was when it doubled due to the One to One costs that we were alarmed at where it would leave her (and us).

It sounds as if we should be asking for her to have a social worker - the only person who has ever hinted this would be a good idea was the manager of her last home, just before she was moved again, and things seemed to be gonig OK (and she changed Local Authority area) so we didn't pursue this. It sounds as if we should have done. I'm told I can talk to the Community Psychiatric Nurse, who is the one "this is being done through" (ie the mental health assessment) but I wonder if I have trusted too much in the Mental Health Team and in the end it's not their decision, or their job to fight people's corner in this situation.

@Wendy 53, thank you, would you be able to tell me the name of the company they used? There are some out there, but we don't have any personal experience of this. If we get stuck I know we will need to find someone to represent us.

@margherita, hi, yes, I don't know what has happened to the "care sector" in the last 10 years but it seems to have got more and more difficult to find good homes, and affordable ones, and even personal care at home is expensive, and of course carers are cautious about taking on someone with challenging behaviour.

Thank you! Now I must his Post and hope this is OK ...

 

[Platinum]

I’m late to this but having searched I find your position with your Mum the same as mine with OH. I am having to move OH for the second time and am hard pressed to find somewhere that will accept challenging behaviour. I do not have the support of a social worker currently as we are self funding. I’m particularly frustrated with the current home because they will not get a GP to assess a probable UTI and review of medication despite saying this would happen on admission. He is in a secure dementia unit. May I ask how you got on with your mum? All advice from any quarter is very welcome.