Hospitals V EMI Nursing Homes

[jannstan]

Hi to you all
I am new to this site,in as much that I have beem a member for a year but have only ever read the threads.
my sister and myself have been caring for my mother since she was diagnosed in nov 06. it has been a struggle to get all the care that she needed. We arranged Home care via the Social Worker, that never was adequate and a poor service to boot. I also found the CPN inadequate as well and wouldn't listen to our concerns. Mum was put on Galantamine, that didn't work and neither did Memantine. Evevtually we had to have her admitted to hospital because she had chronic cellilitis and oaedema( not sure how it is spelt)The worst decision that we have ever made and will always regret it. She was there for eight weeks and my God did she deteriorate. She was put on aripiprazole, zopiclone, Haliperidol and Larazepam. She was in such a mess that it was cruel to see. The nurses did not have a clue how to look after and she was neglected. She fell the second night that she was there bruised her face, but they did not know how! she lost her teeth, broke her glasses and to top it all, she was assaulted by a male patient on new years eve. They had the security guards to her twice( three of them) because she was agressive She was placed in an assessment unit and after one day she was a different person. They were able to Bath her, get her to take her medicine and to eat properly, none of which she was doing in the hospital. After two weeks they had finished their assessment for continuing care and we were told that she should go to an EMI nursing home but would not receive continuing care funds. she will be self funding. We looked at two homes so far, one was like a cattle market the other much better and smaller. At the assesment mum was assessed as she was then, still on aripiprazole and zopiclone and larazepam when needed. Today I found out that they are now giving her Larazepam every evening and sometimes late at night. I found out because the last week of visiting she has changed to how she was in Hospital. This concerns me because I have heard that these drugs are given in Nursing homes to keep them quiet. She is with a specialist team at the moment and is manageable, How will care staff at a nursing home manage her aggressive behaviour without having to increase her medication. We are very frustrated at the moment and are struggling to deal with it all. Can anyone out there advise us on what to do? Also let us know about Emi Nursing Homes

 

[JPG1]

Hello jannstan,

Firstly, don't be too concerned about the medication issue: care home staff cannot legally just "increase medication". The only people who can prescribe and reduce or increase medication are doctors, GPs, consultants, seriously medically trained professionals. So ask who has prescribed these medications and why. I'm not saying it doesn't happen - because it does, but only in care homes operating 'strangely illegally' in that respect.

And ask to see your mother's care plan, so that you know exactly what is what.

If your mother was assessed for continuing care, then do you know who carried out that assessment? Has he/she told you why it was refused? You have the right to appeal that decision, and to ask the PCT (Primary Care Trust) to consider your appeal.

The only way anyone can decide that your mother should be self-funding is after a financial assessment has been carried out.

You say that you have a social worker involved, so go back to social worker and ask questions. Or have you already completed the financial assessment?

If the rules in Wales are different, then sorry I know nothing about that.

 

[sue38]

Hi Janstan,

Your experience of care in a general hospital sounds pretty similar to our experience with my dad. This is my thread, although you may already have seen it.
http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=13132

My dad is now in a dementia (EMI) care home (not nursing) and although not all the staff are as highly trained as the staff in the assessment unit, they are streets ahead of the staff at the hospital when it comes to dealing with dementia.

My dad had a bad experience with Lorazepam, but this may well have been down to his type of dementia (semantic).

We are just starting on the appeal process for Continuing Care, and if I can give help with any (basic) pointers, let me know.

On the medication front, make sure you keep up to date with the drugs she is being prescribed by asking to see her care plan. If you're not sure why a drug is being prescribed, don't be afraid to ask.

 

[Marianne]

Hi Jannstan
I am so sorry to read what you are going through.I went through very much the same with my dad.

I cannot understand why your mum has been refused CHC, I don't know if the rules are slightly different in Wales. Has the hospital or anyone suggested your mum requires EMI care or is it that you don't feel satisfied with the care at present.

You say she currently has a specialist team managing her, is this team at the care home or back in hospital. I am sorry to ask but I have never heard of this happening in a care home.

My dad suffered Vascular Dementia and was quite aggressive with very challenging behaviour so I know how upsetting it is for the family. I think I would be asking the PCT to carry out another assessment of her health needs.
Is the home able to cope with your mum or are they suggesting you move her. If this is the case then the home should be bringing in the PCT and Social Services. I have sent you a private message

Good Luck and Best wishes
Marianne

 

[jannstan]

Hello jannstan,

Firstly, don't be too concerned about the medication issue: care home staff cannot legally just "increase medication". The only people who can prescribe and reduce or increase medication are doctors, GPs, consultants, seriously medically trained professionals. So ask who has prescribed these medications and why. I'm not saying it doesn't happen - because it does, but only in care homes operating 'strangely illegally' in that respect.

And ask to see your mother's care plan, so that you know exactly what is what.

If your mother was assessed for continuing care, then do you know who carried out that assessment? Has he/she told you why it was refused? You have the right to appeal that decision, and to ask the PCT (Primary Care Trust) to consider your appeal.

The only way anyone can decide that your mother should be self-funding is after a financial assessment has been carried out.

You say that you have a social worker involved, so go back to social worker and ask questions. Or have you already completed the financial assessment?

If the rules in Wales are different, then sorry I know nothing about that.

Hi JPG1
Thanks for the reply. Both my sister and I was present when they did the assessment, the consultant, social worker, manager and RMN were also present. We thought that the health assessment would take six weeks, because that was what I was told, but they did it after two weeks. They said that she does not meet the criteria for funding. Since that assessment they have increased her medication and did not tell us, that assessment was carried out on the level that she was on then, so has herneeds changed? I have also been in contact with the social worker, she said that it is all out of her control and that it is in the hands of the nhs.
As for funding, mum has her savings and I know that she will have to pay herself unless she gets continuing care.

 

[jannstan]

Hi Janstan,

Your experience of care in a general hospital sounds pretty similar to our experience with my dad. This is my thread, although you may already have seen it.
http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=13132

My dad is now in a dementia (EMI) care home (not nursing) and although not all the staff are as highly trained as the staff in the assessment unit, they are streets ahead of the staff at the hospital when it comes to dealing with dementia.

My dad had a bad experience with Lorazepam, but this may well have been down to his type of dementia (semantic).

We are just starting on the appeal process for Continuing Care, and if I can give help with any (basic) pointers, let me know.

On the medication front, make sure you keep up to date with the drugs she is being prescribed by asking to see her care plan. If you're not sure why a drug is being prescribed, don't be afraid to ask.

Hi Sue38
Thanks for your reply.
Mum was never told that she had dementia. this was down to the advice of the consultant, so as a result we do not know what type of dementia she has. she went downhill after getting the cellilitis last feb 08, we were told that infections cause confusion. There is only one emi nursing home in her county and may have to look outside of her county. Nursing homes are quite a lot more expensive than emi residential and the only one in her county was not one that we would choose. we are trying to arrange a meeting with the consultant to discuss her medication and we are also thinking of appealing the decision, so any advice would be greatly received
Thanks

 

[Margaret W]

Dear Jannstan

AS everyone has said, you need to know what care plan your mum has, and why she has not been granted continuing care. But the most important thing is to find a good care home for her. It sounds to me as if, in a good care home, she would not feel the need to be agressive - but your consultant should advise on that. There are lots of care homes that can cope with a bit of aggression now and again, and they learn to manage it. Don't assume your mum needs a specialist unit just cos of a few outbursts when she wasn't being properly looked after.

You should have a social worker assigned to you who knows your mum's needs and can direct you to an appropriate care home, or a selection, as they are not allowed to recommend.

The care home we chose for my mum would appear to have not been on the recommended list but we were delighted with it (after many hiccups). Care homes that did appear to be recommended did not appeal to us at all.

Eeh, it is a tortuous process, I wish you ever success and much love.

Margaret

 

[jannstan]

Hi Jannstan
I am so sorry to read what you are going through.I went through very much the same with my dad.

I cannot understand why your mum has been refused CHC, I don't know if the rules are slightly different in Wales. Has the hospital or anyone suggested your mum requires EMI care or is it that you don't feel satisfied with the care at present.

You say she currently has a specialist team managing her, is this team at the care home or back in hospital. I am sorry to ask but I have never heard of this happening in a care home.

My dad suffered Vascular Dementia and was quite aggressive with very challenging behaviour so I know how upsetting it is for the family. I think I would be asking the PCT to carry out another assessment of her health needs.
Is the home able to cope with your mum or are they suggesting you move her. If this is the case then the home should be bringing in the PCT and Social Services. I have sent you a private message

Good Luck and Best wishes
Marianne

Thanks marianne for the private message, I will be looking into that site tomorrow.
Mam is in a psychiatric assessment unit after coming out of a general hospital. She has to go to an Emi nursing home because of her challenging behaviour. We were told that they would not cope with her in an Emi Residential home. They are able to cope with her in the assessment unit, whilst using all the drugs that they are giving her, plus they are trained to deal with this behaviour. My concern is that when she moves to a Nursing home , will the care staff be able to cope with her there. I have always suspected that she may have Vascular Dementia because the dementia has been very quick, diagnosed in nov06 and very difficult to manage since feb 08, more aggressive and more challenging behaviour.

many thanks
Jannstan

 

[jannstan]

Dear Jannstan

AS everyone has said, you need to know what care plan your mum has, and why she has not been granted continuing care. But the most important thing is to find a good care home for her. It sounds to me as if, in a good care home, she would not feel the need to be agressive - but your consultant should advise on that. There are lots of care homes that can cope with a bit of aggression now and again, and they learn to manage it. Don't assume your mum needs a specialist unit just cos of a few outbursts when she wasn't being properly looked after.

You should have a social worker assigned to you who knows your mum's needs and can direct you to an appropriate care home, or a selection, as they are not allowed to recommend.

The care home we chose for my mum would appear to have not been on the recommended list but we were delighted with it (after many hiccups). Care homes that did appear to be recommended did not appeal to us at all.

Eeh, it is a tortuous process, I wish you ever success and much love.

Margaret

Hi Margaret
Thanks for your reply.
I was aware that mum should have a care plan when she was living at home but not when she is in a care home or the assessment unit. Who is responsible for this? Mum has a social worker, but she says that the nhs is now looking after her care and has no control over it.

Mum is very strong willed and can be very challenging, but with the medication that she is on she is compliant until it wears off.
I was never aware of the problems that carers face until this happened to me and feel for everyone that has gone through it or is going through it now.

Unfortunately there are not many Emi Nursing homes around, (plenty of Emi residential) only an average of two in each county around me. the list that I was given included some that were between 40- 60 miles away only one in her county with 41 beds and we will not be placing her there.
Many thanks
Jannstan

 

[Marianne]

My concern is that when she moves to a Nursing home , will the care staff be able to cope with her there. I have always suspected that she may have Vascular Dementia because the dementia has been very quick,
many thanks

Hi Jannstan
Your question "will the care staff cope with your mum" this is a difficult question to answer. While your mum is being managed at present I wouldn't be rushing into looking for a home.

If you do choose a home in the future then the Nursing Manager will have to go and assess your mum's suitability for the home and whether they can manage her. Any home you view make sure you ask how they will cope with your mum's challenging behaviour.

My dad was self funding but I fought for CHC and was refunded the fees. Between Jan'05 and July '07 he went into 3 homes, the first an EMI Home, the second a Residential Home and finally an EMI Home. They all insisted they could manage him but when his challenging behaviour surfaced they just couldn't cope.

The last thing I want to do is frighten you with my experiences. There are good homes as people on here will tell you, but, I didn't find one for my dad.

Good Luck
Marianne

 

[JPG1]

Hi Jannstan

Just to add to what everyone else has already said:

You need to tap into your SW (social worker). I don’t understand what SW means when she says that “the NHS is now looking after her care and she has no control over it”.

Ask her to explain that one to you.

She may mean that as your Mum is still in the assessment ward, then she (SW) is out of it. But that’s not always the case. If the SW is part of the Mental Health Care of Older People team (or whatever it’s called where you are) and if the SW was involved in your Mum’s admission to the assessment unit, then she should still be involved. You say that SW was present when they did the assessment, so it sounds to me as though she is still involved.

Who was the “Manager” you mentioned at the assessment? It can’t have been a care home manager, so perhaps it maybe was the assessment ward manager. Sounds to me as though this was more a “ward round meeting” than a formal assessment for CHC. But I could be wrong there. I only say that because it's fairly unusual for someone to go straight into the 'formal assessment for Continuing HC', in my experience anyway.

If it was assessment for CHC, then they must tell you reasons why they say she did not meet the criteria for funding. And they must also give you details of how to appeal that initial decision. In writing, please nicely!!

Everyone in a care home must have a care plan, and you must ask to see it when it comes to that point. Your Mum would have had a care plan before going into the assessment unit, if a SW was involved in arranging home care etc., so have you ever seen that one? And before your Mum moves into any care home, the care home Manager would have to carry out a full pre-admission assessment of your Mum, to make sure that the home is suitable for her, and that they can take care of her properly. That’s the theory, anyway. And it is a legal requirement for that pre-admission assessment to be carried out.

You need to ask the people involved in your Mum’s care anything you don’t understand, and that includes the drugs.

Finally, and again I don’t know much about Wales, but a care home in England registered via CSCI needs to ensure that it takes ‘service users’ which fit into its registration category. So, a home which is not registered for dementia can take a person with dementia but only if they can meet the needs of that person with dementia. But to do this they would need to apply for ‘a variation’ of their registration with CSCI, in order to take that service user with dementia. In other words, they should be able to cope with the demands of dementia if they accept a resident with dementia.

Good luck, and keep asking questions.

Sorry for long reply, but you sound as though you need help!

 

[jannstan]

My concern is that when she moves to a Nursing home , will the care staff be able to cope with her there. I have always suspected that she may have Vascular Dementia because the dementia has been very quick,
many thanks

Hi Jannstan
Your question "will the care staff cope with your mum" this is a difficult question to answer. While your mum is being managed at present I wouldn't be rushing into looking for a home.

If you do choose a home in the future then the Nursing Manager will have to go and assess your mum's suitability for the home and whether they can manage her. Any home you view make sure you ask how they will cope with your mum's challenging behaviour.

My dad was self funding but I fought for CHC and was refunded the fees. Between Jan'05 and July '07 he went into 3 homes, the first an EMI Home, the second a Residential Home and finally an EMI Home. They all insisted they could manage him but when his challenging behaviour surfaced they just couldn't cope.

The last thing I want to do is frighten you with my experiences. There are good homes as people on here will tell you, but, I didn't find one for my dad.

Good Luck
Marianne

Hi Marianne

Again thanks for your reply
I have today received a call from my mums consultant asking if I have found a home for mum. I have told them that I had already explained to them that I was on holidays in the lake district last week and that my sister is going next week and this week it has been impossible to do anything because of the weather. They are saying that if they need the bed they will move her to any home that has a vacancy even if it is 40-60 miles away.
Surely if my mum is paying it should be a home of the families choice and not the NHS. She had to wait 8 negligent weeks in a general hospital to get into the assessment ward and after two weeks they are trying to get her moved. I have also found out that they are having to give her Lorazepam more often now to when they did the chc assessment. This alarms me I was told by the nurses that they sometimes have to give it twice in the night because of the aggression and restlessness. she doesn't settle until 2-3 am and that's taking all the drug including zopiclone. I don't think that she has had enough time to be considered stable! and they are moving her too soon, which I think may cause a breakdown where ever she goes.
How do I go about getting a second opinion on her level of medication ?
The assessment for CHC is different in Wales to England. we have a system which have 26 criteria questions whereas in England they have eleven. Looking st the English version I think that mum would have qualified for CHC!
Many thanks
Jannstan

 

[sue38]

Hi Jannstan,

You are clearly being bullied to move your mum before you are ready.

I thought the idea of an assessment unit was to stabilise the patient and find the right combination of drugs. It seems that if they are continually having to increase the Lorazepam, your mum is anything but stable. The last thing you want to happen is for your mum to go to a care home, they cannot manage her, and she has to back to an assessment unit.

Stick to your guns.

 

[JPG1]

Hi Jannstan,

As Sue said, an assessment unit/ward is meant to assess the patient, to assess his/her needs, and then to stabilise the patient via whatever means are appropriate, and that does not always mean medication. It may mean a different form of therapy.

You received a phone call from the Consultant? Well, that must be a first … and many of us would give our eye-teeth for a phone call from the Consultant. Even though your Consultant was asking about whether you had found a suitable care home for your Mum. That Consultant of yours is seriously odd! Because it is nothing to do with the Consultant.

Nobody can be forced to move into any care home which goes against their own wishes, or the wishes of their own ‘personal representatives’, normally called next-of-kin, or carers. It is nothing to do with the NHS.

Unless the Lorazepam has been prescribed by a GP, or the Consultant (ask the Consultant!!) for use ’twice in the night’, or ‘as required’ (which would be unacceptable in any case!!) then the nurses are acting against their NMC registration. And you need to question that one.

The first thing you need to find out is: who has prescribed all the mediations? Then talk to him or her. Ask why, ask whether it should be increased, and under what circumstances.

Until you have done that you cannot ask for a second opinion.

You are being bullied. And your Mum will, as Sue said, end up back in the assessment ward, unless you ask all these questions now.