My first post - scared about forthcoming CHC meeting

[Orangeley]

Hi, Just wanted some advice. My mum is an advanced complex (multiple) dementia sufferer in her 80s. She has severe cognition and communication problems (but can speak), she can't mobilise without injury and needs hoisting by 2 carers with specialist equipment. She had hip replacement in July and cant walk, so mobilises by dragging herself on bottom. She is doubly incontinent with stomach pain. She has poor skin integrity , her weight has dropped to BMI 17. She has mental health problems - is paranoid, suffers from hallucinations and delirium. She doesn't sleep, and she is non compliant with care, can be verbally abusive and hits carers sometimes. She also says she wants to die. I think she was like this in January but she was CHC assessed as having no intensity of care need, so went into a normal nursing home with EMI but fell 5 times in a month and was punched by another resident as she is challenging. She also dragged herself around until she had no skin on her bottom or feet. We were so worried we took her home with two live in EMI qualified carers but that was not enough for her needs. A district nurse had visited her at home and said she could be fast tracked but then that came to nothing, although is in her notes. She's currently in an EMI home and is their most severe patient and they have her segregated and doped up on diazepam to help her sleep (otherwise is awake 23 hours), with constant 1:1 care (one hour shifts as she is so hard to be with) but has still fallen twice. It costs £3000 a week. I have logged a formal complaint about underassessment of care needs resulting in her injury, and am awaiting feedback. They have agreed begrudgingly to do a new assessment but I'm worried it will not be OK, as I don't think her needs have changed since Jan. Does anyone have any advice on what to do to persuade there is intensity of care need? Is lack of awareness of risk a factor under behaviour as well as cognition?

Sorry, bit of a stressed ramble.

 

[jan.s]

Hi Orangely and welcome to TP. You will find a lot of support and advice on here!

It sounds as if your mum's needs have not been met and I question whether they are being met now.

This is the link for the Decision Support Tool that is used to identify whether someone has a primary health need and therefore qualifies for Continuing Healthcare Funding.

https://www.gov.uk/government/uploa...upport-Tool-for-NHS-Continuing-Healthcare.pdf

It is worth reading through and preparing your own information relating to Mum's needs. It doesn't make pleasant reading, but sadly, you need to be thinking of how mum is on a bad day (the worst!)

I hope this information is helpful.

 

[Karjo]

welcome to TP and hopefully you will get some good advice here soon. It beggars belief that your Mum should be paying £3000 per week for her care and it is classed as social rather than medical needs. Surely the very fact that this is necessary means she should get CHC, but I really don't know enough, but your post is so very upsetting that this could be happening in our country. My thoughts are truly with you and your Mum.

 

[Orangeley]

Thanks - I'll have a read. She had one assessment in Jan but only came out as severe in cognition, just high in other areas and with no intensity or complexity of needs. I cannot understand it which is why I have complained. Also they don't seem to count her mobilising when unsafe as behavioural at all, which I thought it would be. Also as she is only slight it doesn't hurt when she hits people.. The home she is in at the moment are fantastic, but she is very difficult to handle. I think I was naïve first time round in assuming they were assessing her real needs rather than to save money. I am worried that I have read a lot of things now that I need to be aware of but that I will not remember them all in the moment.

 

[Orangeley]

Thanks Karjo, it is good to know others think it is high.

 

[jan.s]

Hi there, it would be worth looking at the previous assessment, and seeing where mum came out on each domain. That will give you something to use when challenging. All judgements need to be backed up by evidence.

Part of her aggression could be caused though fear when she has hallucinations (I know it was for my husband) (only my thought).

I am glad that her current care is good, that is such a relief for you.

What I have done is marked up my own version of the domain scoring, and highlighted where I think Roger is at the moment. I have also got a copy of where he was when he was assessed. On the Decision Support Tool (DST), there is plenty of space to write your own notes, and to record relevant information.

It works for me! I hope this helps just a little. I know it's like walking through treacle!

 

[MerryWive]

How can they say that is not complex and intense when there is need for carers to swop on a hourly basis as she is so hard to be with??

She sounds extremely challenging. I don't know what you can do apart from insist as far as possible that these are her needs and they must be met. Perhaps the fact that she damaged her skin so badly since the last assessment will go in your favour? Also emphasise her stomach problems, every little thing that can be classed as medical. And unpredictability is a thing for them - if they ask if there is a pattern to her behaviour I think it is best to be vague and say it's random rather than try and see patterns for them to pin down.

Sorry I can't be of more help!

 

[missmarple]

She does sound very challenging. I am no expert but managed to get chc for my Dad for now, mostly on the basis of challenging behaviour. He is aggressive at times, absconds etc. He scored severe on cognition and on behaviour and that was enough to get CHC awarded. I got very good information from the Care to be Different website, and Angela Sherman, the founder, also kindly answered a few questions via email.
Read the government documents on the Checklist and the Decision Making Tool, gather as much info re your mum's condition as you can, and how you think she scores in the different domains. Ask for an assessment meeting where the checklist will be completed it definitely sounds like she scores enough to trigger a full assessment. Be sure to be there at all meetings to do with chc and shamelessly put your viewpoint forward. The ccg will try and downplay her medical problems and needs, it is your job to repeatedly point them out.
A bit surprised to hear her care is costing £3000 a week. Is that correct- seems awfully high.
Good luck, in any case.

 

[missmarple]

"She had one assessment in Jan but only came out as severe in cognition". According to Angela Sherman downgrading dementia patients' behaviour score as the disease progresses and cognition gets worse, is a typical CCG tactic to ensure they do not qualify for CHC. You need to strongly argue the degree of her behavioural problems.

 

[SandraBetty]

Hi, Just wanted some advice. My mum is an advanced complex (multiple) dementia sufferer in her 80s. She has severe cognition and communication problems (but can speak), she can't mobilise without injury and needs hoisting by 2 carers with specialist equipment. She had hip replacement in July and cant walk, so mobilises by dragging herself on bottom. She is doubly incontinent with stomach pain. She has poor skin integrity , her weight has dropped to BMI 17. She has mental health problems - is paranoid, suffers from hallucinations and delirium. She doesn't sleep, and she is non compliant with care, can be verbally abusive and hits carers sometimes. She also says she wants to die. I think she was like this in January but she was CHC assessed as having no intensity of care need, so went into a normal nursing home with EMI but fell 5 times in a month and was punched by another resident as she is challenging. She also dragged herself around until she had no skin on her bottom or feet. We were so worried we took her home with two live in EMI qualified carers but that was not enough for her needs. A district nurse had visited her at home and said she could be fast tracked but then that came to nothing, although is in her notes. She's currently in an EMI home and is their most severe patient and they have her segregated and doped up on diazepam to help her sleep (otherwise is awake 23 hours), with constant 1:1 care (one hour shifts as she is so hard to be with) but has still fallen twice. It costs £3000 a week. I have logged a formal complaint about underassessment of care needs resulting in her injury, and am awaiting feedback. They have agreed begrudgingly to do a new assessment but I'm worried it will not be OK, as I don't think her needs have changed since Jan. Does anyone have any advice on what to do to persuade there is intensity of care need? Is lack of awareness of risk a factor under behaviour as well as cognition?

Sorry, bit of a stressed ramble.

Have you asked the home staff for their input? Is your mum in an EMI nursing environment. It would be helpful if you knew what kind of supporting documentation is being provided by the staff! If any. They should be demonstrating how specific, intensive and beneficial/not their interventions are.

 

[Orangeley]

CHC Awarded - and finally a psych visit

Well we had the CHC meeting last Tuesday - awarded for 3 months. It was awarded in the room. Care home nurse said it was the first time she had seen one awarded without going to panel, but mum scored 9 high or above out of 12. When I was told it was like being hit by a truck. I think I had imagined there would be some kind of relief but I had spent so long fighting the immediacy of how we were going to pay for all her care, that all I was left with was just how awfully ill and tormented she is, and how little action there had been to help her. Afterwards I felt so angry that we had waited nearly 5 months for a psych referral and 5 weeks without a GP visiting that I sent a fairly volatile email to the chair of the CCG, copied to any relevant MP (including the man in charge!!) saying if she had not had someone sort out her psych and pain relief by the next day I would be contacting the papers. Bizarrely it worked. (although may have anyway as CHC case worker appointed on award of funding seems on top of things). GP has sorted out pain relief, psych doctor has been today and sorted meds, and there are safeguarding reviews happening..

 

[Orangeley]

Thanks to all of you for supporting me

Also just wanted to say thanks for all the advice in this thread, it was helpful in helping me put my mums case together.

 

[katek]

What a relief for you although I know what you mean by the fact that this 'victory' just confirms how ill your mum really is. Looking back through the thread, I completely agree with Karjo in post #3 in that it beggars belief that she was assessed as only needing social care and was having to pay £3000 a week for her care. Well done for alerting MPs to this situation, which should not be allowed to happen in Britain in the 21st century.

 

[missmarple]

Well done! It is of course a very muted victory, no one would wish to see their parent endure such an illness.
The more I learn about CHC the more I believe no one gets it without a big fight being put up by a dedicated, well informed (and probably super stressed) relative- unless maybe they are in the short prognosis, fast track bracket.
My 3 Dad's month review is coming up soon. Ding ding, second round.

 

[Egeon]

For information, when it comes to a reassessment, if they say they are going to stop CHC, put in an appeal immediately via email to the relevant person. That way whilst the appeal process is going on the funding that was in place at the time of the appeal i.e., CHC has to continue until the stage just before the ombudsman