Hi - my mother is currently in hospital following a deterioration of her vascuar dementia ( caused by brain haemorhage 3 years ago). She has lived at home with carers and lots if family support. 6 weeks ago she started acting bizarrely and trying to constantly leave the house saying it wasn't her house. She was constantly packing and even tried to set fire to bits of paper. She is going through the hospital assessments now and has failed capacity and so they have said it is unsafe for her to go home. The social worker requested a psychiatric assessment and the result was the psychiatrist feels she needs nursing care and not residential. She is unpredictable and very confused at times, she has also displayed episodes of aggression. There is a DST meeting next week which I have to attend. I know nothing about this but realise it could mean her care would be funded and the would get the level of care she requires. I have seen the care to be different website and notice they sell a book on CHC etc but it only applies to England. I live in wales - has anyone been in this situation and what prep do I need to do for the meeting. I'm not in great health myself ( perforated bowel ) but I don't want to let her down and will attend but feel I should do some preparation. Thank you all - any advice gratefully received xxx
Continuing healthcare advice please
- Thread starter Worrywart 2
- Start date
Hi Worrywart2
See the links below (particularly the first)
http://www.wales.nhs.uk/continuingnhshealthcare
http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1321
5. Devolution
The National Framework applies to people in England only.
Wales
Although the National Framework does not apply to Wales, there is some evidence that it is being used in some parts of Wales. Wales issued its own guidance in 2004. The Welsh Assembly is developing its own National Framework but it is not yet available. If someone in Wales feels they may be eligible for NHS continuing healthcare they can contact their Local Health Board, refer to the guidance and then ask for the decision tools/criteria which are going to be used in any assessment.
Good luck
See the links below (particularly the first)
http://www.wales.nhs.uk/continuingnhshealthcare
http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1321
5. Devolution
The National Framework applies to people in England only.
Wales
Although the National Framework does not apply to Wales, there is some evidence that it is being used in some parts of Wales. Wales issued its own guidance in 2004. The Welsh Assembly is developing its own National Framework but it is not yet available. If someone in Wales feels they may be eligible for NHS continuing healthcare they can contact their Local Health Board, refer to the guidance and then ask for the decision tools/criteria which are going to be used in any assessment.
Good luck
I have been through the chc process with my Dad, successfully so far.
If you can find out whether your local CCG/ WElsh equivalent uses the same process, I'll be able to give you some tips on getting through the meeting and making sure you put forward the best possible case.
I used CaretobeDifferent's website a lot for preparation and its founder Angela was kind enough to answer a few queries I had via email (I paid nothing for this). If you emailed her via the website she might know about the Welsh assessment process and how it is different from the English one in practice, if at all.
If you can find out whether your local CCG/ WElsh equivalent uses the same process, I'll be able to give you some tips on getting through the meeting and making sure you put forward the best possible case.
I used CaretobeDifferent's website a lot for preparation and its founder Angela was kind enough to answer a few queries I had via email (I paid nothing for this). If you emailed her via the website she might know about the Welsh assessment process and how it is different from the English one in practice, if at all.
Thank you Miss Marple that's very kind of you. I did email Angela sharman as I was about to download the book but could see it makes reference to England - she unfortunately hasn't replied as yet. I have looked at all the domains but I'm not sure if my mother will qualify or not as I don't know how 'bad ' they have to be. The psychiatrist has mentioned an EMI residential would not be suitable as she would need a care home. As it happens now this week she seems less agitated and more settled. I would be grateful for any advice miss Marple, thank you so much x
Well, assuming the process will be the same/ similar as in England:
Get hold of the DST document with all the domains and do your own scoring, picking out absolutely all areas where your mother has difficulties. In my Dad's case it was mostly the domains of cognition, behaviour and medication, the 3 being inter related, he has no great needs in other areas.
Points to remember:
She needs to score at least 1 priority or 2 severes in different domains to qualify
A met need is still a need- ie, just because she is not at risk in her present environment does not mean she would not be if she didn't have the present level of care. I am n ot sure from your post whether she is in hospital or at home, but clearly she is requiring a lot of input to stay safe, not wander, and to manage the aggression.
Sad to say but the more difficult her behaviour, the greater her aggression, the higher her chances of qualifying for CHC. Many people with dementia qualify for CHC because of "challenging behaviour" and in the absence of severe physical needs this is the most likely route to getting it
Therefore make sure you have bombproof documentation to pick out all the instances of difficult behaviour, which required intervention form carers/ nurses at the hospital/ family etc to manage and prevent her putting herself or others at risk. Keep a diary, or construct one retrospectively and produce these examples of challenging behaviour during the meeting . Also bring along your own copy of the DST with the scores you have entered. If it's like my Dad's assessment, the CCG nurses will try and put their assessment forward, and the chances are they will try and assess your mother at lower scores, so be prepared to argue your point. Essentially you need to be your own/ your mother's own lawyer for the day.
GOOD LUCK!
Finally, a DST meeting can be a long one (Dad's lasted 4 hours without a break) so make sure you have a good breakfast, access to water etc.
Get hold of the DST document with all the domains and do your own scoring, picking out absolutely all areas where your mother has difficulties. In my Dad's case it was mostly the domains of cognition, behaviour and medication, the 3 being inter related, he has no great needs in other areas.
Points to remember:
She needs to score at least 1 priority or 2 severes in different domains to qualify
A met need is still a need- ie, just because she is not at risk in her present environment does not mean she would not be if she didn't have the present level of care. I am n ot sure from your post whether she is in hospital or at home, but clearly she is requiring a lot of input to stay safe, not wander, and to manage the aggression.
Sad to say but the more difficult her behaviour, the greater her aggression, the higher her chances of qualifying for CHC. Many people with dementia qualify for CHC because of "challenging behaviour" and in the absence of severe physical needs this is the most likely route to getting it
Therefore make sure you have bombproof documentation to pick out all the instances of difficult behaviour, which required intervention form carers/ nurses at the hospital/ family etc to manage and prevent her putting herself or others at risk. Keep a diary, or construct one retrospectively and produce these examples of challenging behaviour during the meeting . Also bring along your own copy of the DST with the scores you have entered. If it's like my Dad's assessment, the CCG nurses will try and put their assessment forward, and the chances are they will try and assess your mother at lower scores, so be prepared to argue your point. Essentially you need to be your own/ your mother's own lawyer for the day.
GOOD LUCK!
Finally, a DST meeting can be a long one (Dad's lasted 4 hours without a break) so make sure you have a good breakfast, access to water etc.
Thank you Miss Marple. - I think the difficulty with my mother is shortly after the brain haemorrhage she was very aggressive and confused, she stayed in hospital for 9 months until she stabilised. She then came home in 2013 and lived on her own with carers . It wasn't easy but we managed ok although our life was very much governed by her needs as in someone had to be around at all times. This year as I you know I became ill and it all started to unravel. She has been in hospital now and is very similar to how she was just after the brain haemorrhage. The psychiatrist came out last week and said amongst other things am EMI residential would.not be suitable. He would strongly recommend an EMI care home. How much weight does that carry in the decision for CHC. Surely the fact she requires a care home ( of which there are none that local to where we live ) as opposed to a residential one ( nice one in our town ) help her case for CHC.
Sorry if I'm babbling, this is head work at a time when my head isn't working
I did not know you had been ill worrywart, sorry to hear that.
If a psychiatrist has said your mother needs an EMI care home then I would think that would carry a lot of weight in the behaviour domain of the DST. As her cognitive problems are likely to also be severe, then she should probably qualify. I don't know how hard though you will need to argue this, but I think you have a good case for applying for CHC. It is usually a fight, but to be blunt if you consider the 10's of 10 000 s of pounbds involved it is worth the fight. Good luck.
If a psychiatrist has said your mother needs an EMI care home then I would think that would carry a lot of weight in the behaviour domain of the DST. As her cognitive problems are likely to also be severe, then she should probably qualify. I don't know how hard though you will need to argue this, but I think you have a good case for applying for CHC. It is usually a fight, but to be blunt if you consider the 10's of 10 000 s of pounbds involved it is worth the fight. Good luck.
Hi miss Marple,
Just an update . We had the DST and she didn't get any severes and only a fee highs. The psychiatrist despite what he told me on on the phone produced a very limp letter . The upshot of the meeting was she would probably get the nursing bit as opposed to chc. I've gone past caring about that now and accept we will sell her house. What is really concerning is because she hasn't had the full psychiatric assessment( long story) she needs a further 6 week assessment in a care home setting before permanent decisions are made. She is on memantine and seems to be more settled . Problem is we went to two EMI care homes over the weekend and they were horrific - lots of very very old people sat about looking extremely sad. I left in tears. The sister on the ward felt she has changed this weekend even since the DST meeting and now questions the need for a care home - she thinks residential maybe but they can't do the assessments in a residential home, it's a shambles.
Yes I have bowel disease and I recently needed a hysterectomy for long standing gynae problem, my bowel perforated and I was in hospital for 3 months. It's been a nightmare year miss Marple jot sure how much more I can take. My mother doesn't seem half as bad as the people we saw in the homes, she would hate it and it would destroy me having to leave her there. Such a horrible time. Myhusband of 35 years is not being helpful as he can see the effect it's having on me. He says she has to go into a home it I feel asshehas improved n the memantine she could maybe comeback home again with carers but ami deluding myself?
Hello worrywart 2, I wonder if it is worth you starting another thread about ' Looking for a care home in *******.' Members can then reply by personal message with any care homes they have experience of in the area you are looking in. It's very difficult for you until it has been decided what type of care your mum needs.
Hello worrywart- it sounds very difficult and there are lots of things to be taken into consideration. My first thought is that if your husband is saying quite clearly he couldn't cope with your mum at home, you need to take notice. I suspect you need outside help, in the form of professionals to take some of the pressure of you- and frankly you can hide behind them a bit. Your mother 's needs have to be assessed and the best place for discharge determined, by the professionals. If being with you means your marriage is wrecked, then surely that's too much of a price (this is of course my opinion).
In the meantime as Turbo says it's a good idea to post on the carer's forum and ask for help in finding the right place for her to go to. I haven't really been in that very difficult situation yet. We had one failed attempt to admit Dad to a care home when he was at his most agitated, he went into meltdown and so went back to his own home, but my brother (who never left home due to mental illness) lives there and we got a package of care in. I was strongly advised by the dementia team at the time NOT to bring him to my home as he would have consistently tried to abscond/ demand to go back to his own home, and basically driven me, my husband and my children mad.
In the meantime as Turbo says it's a good idea to post on the carer's forum and ask for help in finding the right place for her to go to. I haven't really been in that very difficult situation yet. We had one failed attempt to admit Dad to a care home when he was at his most agitated, he went into meltdown and so went back to his own home, but my brother (who never left home due to mental illness) lives there and we got a package of care in. I was strongly advised by the dementia team at the time NOT to bring him to my home as he would have consistently tried to abscond/ demand to go back to his own home, and basically driven me, my husband and my children mad.
