Your CHC Appeals support thread
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@luggy
Glad it helped; CHC assessors often do that - going through a list of needs item by item finding a reason to say each one does not in itself quite meet the threshold of one of the NICU headings and leaving it at that. I wish you well.
Yes that is true , however once CHC is granted there are some really good specialist nursing homes out there that will except CHC funded patients. What they are paid I really don’t know but there will be greater financial flexibility based on each individual case than there will be for example in the Social care system.
My Mum’s Nursing home is a case in fact. I don’t profess to understand the total funding side of things but I think CHC has a duty of care to ensure that the nursing needs & health of a patient is attended to. Social Services who help to fund people who are considered “well enough “ but have significant social needs such as washing, feeding & dressing are more likely to place the patient in what might be considered a 3 star home as opposed to a 5 star home due to financial constraints and budgets. . Duty of care to the CHC recipient must be met otherwise the system has failed, the CHC and the Nursing home provided should meet the patients requirements irrespective of cost. My Mum’s needs under CHC have been met, she is in an extremely good complex Nursing Home, better than I could ever dared to imagine prior to CHC being granted.
Please can I ask a question to anyone who may be able to help? My Dad has been in hospital and was discharged to a D2A Nursing Home where he has just been for 4 weeks. Everyone is in agreement that he needs EMI Nursing care and infact the residential home (that said dementia specialist) he was in for respite when he went to hospital refused to have him back. He has a DoLS and again, all agree that he cannot go back home whee he had been previously cared for by Mum with some help from me. The NH manager has instigated the checklist screening for CHC funding and we have the DST next week. The Nurse Assessor from NHS has been out to see him and had a long interview with my Mum, plus has sought my views. Both she and the NH manager said "There shoudn't be any issues getting it" He currebtly has 24hr 1:1 and 2:1 for personal care. (I just typed all this and have now forgotten my original question...!!) Hang on ..... ah ok, what I wanted to ask - what constitutes an alternative state of consciousness (ASC) ??
I'm not quite sure. Dad spend hours and hours with his eyes closed mumbling to someone (he has no discernible speech) and sometimes doesn't seem to know what is 'person' and what is object. Example if I hold his hand, he will put it in his mouth to bite or bend my fingers back...but with his eyes closed still mumbling. He walks ( a little with 2 carers) with his head down and will point to things on the floor and get agitated when nothing is there.
Are these examples of ASC? He's just not 'with it' at all, it's like he is 90% of the time in a parallel universe and in permanent fight or flight mode.
I'd like to know in my own mind before the meeting. Also, what counts as emotional, social, psychological need?
I'm not quite sure. Dad spend hours and hours with his eyes closed mumbling to someone (he has no discernible speech) and sometimes doesn't seem to know what is 'person' and what is object. Example if I hold his hand, he will put it in his mouth to bite or bend my fingers back...but with his eyes closed still mumbling. He walks ( a little with 2 carers) with his head down and will point to things on the floor and get agitated when nothing is there.
Are these examples of ASC? He's just not 'with it' at all, it's like he is 90% of the time in a parallel universe and in permanent fight or flight mode.
I'd like to know in my own mind before the meeting. Also, what counts as emotional, social, psychological need?
Hi Sonya,
Not too sure myself as our mother was 'no needs' for that domain so I didn't research it.
There are some tips in this article regarding ASC which may help?
Decision Support Tool - TIPS on assessing 'Altered State of consiousness
There are 12 Care Domains that are measured on the Decision Support Tool. One of these Domains is Altered States of Consciousness (ASC).
caretobedifferent.co.uk
There is also a thread with a similar question here on the forum. Although it's ten years old and things may have changed.
Nhs continuing care appeal - advice on "altered state of consciousness
Hi All, I am looking for a bit of advice regarding an appeal on NHS continuing care that is due on Thursday. I am struggling with the "altered states of consciousness" section. My MIL is Stage 6 alzheimers. She is in a nursing home. She has days when the staff struggle to keep her awake...
forum.alzheimers.org.uk
Good luck with your dads DST.
Dave
Hello Sonya1. I'm not an expert, but have been through 3 DST's in the last 18 months - 2 for my mum and 1 for my dad. Like yourself, I was confused about ASC's - my mum is permanently hallucinating and I thought that this would qualify as an ASC, but it doesn't. In order to get a level of need in the ASC domain, the examples which may be considered are TIA's, Epileptic Fits, Seizures. I don't think that the examples you have given of your dad are ASC - they are possibly due to lack of cognition. In my mum's first DST, she had 'No Needs' in the ASC domain. A couple of weeks before her 2nd DST, mum had a couple of suspected seizures and became unconscious and unresponsive - this episode has resulted in her scoring 'Moderate' for this domain. Other's may have different experiences and knowledge to share, but this was my experience.
Psychological & Emotional Needs - my experience with this is that MDT's try and marginalise the needs in this domain for those who suffer from dementia. As I previously mentioned, my mum is permanently hallucinating which causes her to be very agitated and distressed - the effect that this has is that she screams, shouts and is combative/non-compliant with all aspects of her personal care, hitting out and being verbally abusive. She is unable to process reassurance so cannot respond to it. She is prescribed Lorazepam which is regularly administered. Despite all of this, at her first DST, mum scored 'Low Needs' in this domain. At her 2nd DST I had to push hard to get the level of need raised - luckily the Social Worker backed me up and the need was raised to 'High'. Again, this is just my experience and, hopefully, others may be able to offer you some more tips.
All the best!
@Sonya1
Altered States of Consciousness - caters for such conditions as epilepsy, faints, transient ischaemic attacks. The general state you describe affecting your father seems to be part of his advanced dementia. The DST has some helpful wording at the start of each domain for example:
Decision Support Tool for NHS Continuing Healthcare Section 2 – Care Domains
Please refer to the user notes
11. Altered States of Consciousness (ASC): ASCs can be caused by a range of clinical conditions, including Transient Ischemic Attacks (TIAs), Epilepsy and Vasovagal Syncope. General drowsiness would not normally constitute an ASC for the purposes of this domain.
I hope this helps you.
Regarding Psychological and Emotional Needs, the usual problems might be anxiety, agitation, troubling hallucinations and depression. Much of this is best interpreted by persons who know the person well and feel they can interpret how a person feels from their demeanour or facial expression. These aspects cannot usually be gleaned from a discussion with a person with severe dementia and impaired or non-existent verbal communication. Clues for depression might include aversion of gaze to avoid eye contact, and keeping the mouth clamped shut when food is offered coupled with turning the head away, which if sustained will jeopardise physical health.
The wording above this domain is:
7. Psychological and Emotional Needs: There should be evidence of considering psychological needs and their impact on the individual’s health and well-being, irrespective of their underlying condition. Use this domain to record the individual’s psychological and emotional needs and how they contribute to the overall care needs, noting the underlying causes. Where the individual is unable to express their psychological/emotional needs (even with appropriate support) due to the nature of their overall needs (which may include cognitive impairment), this should be recorded and a professional judgement made based on the overall evidence and knowledge of the individual. It could be argued that everyone has psychological and emotional needs, but this domain is focused on whether and how such needs are having an impact on the individual's health and well-being, and the degree of support required. If an individual has a severe level of need in the cognition domain they may not be able to consciously withdraw from any attempts to engage them in care planning, but careful consideration will need to be given to any evidence of psychological or emotional needs that are having an impact on their health and well-being.
Kind regards,
TonyL
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Thankyou, that helps a lot! Dad often clamps his mouth against food and drink and spits it out regularly, also throws drinks up in the air and so on, always agitated and very very physically resistant to any personal care or even just getting out of bed! So these would come under 7 I think.
Thankyou Luggy, I really appreciate your reply - my Dad sounds similar to your Mum in so many ways. Hugs to you
Thanks Dave, I really appreciate your reply. Definitely scrutinising the NF very closely before the meeting!Hi Sonya,
Not too sure myself as our mother was 'no needs' for that domain so I didn't research it.
There are some tips in this article regarding ASC which may help?
Decision Support Tool - TIPS on assessing 'Altered State of consiousness
There are 12 Care Domains that are measured on the Decision Support Tool. One of these Domains is Altered States of Consciousness (ASC).
There is also a thread with a similar question here on the forum. Although it's ten years old and things may have changed.
Nhs continuing care appeal - advice on "altered state of consciousness
Hi All, I am looking for a bit of advice regarding an appeal on NHS continuing care that is due on Thursday. I am struggling with the "altered states of consciousness" section. My MIL is Stage 6 alzheimers. She is in a nursing home. She has days when the staff struggle to keep her awake...
Good luck with your dads DST.
Dave
@Sonya1
Thanks for this extra information. Some care is needed here because in CHC we tend not to double count. The resistance could very legitimately be considered under Behaviour - because he resists a range of care - it's not just confined to taking food and fluids so considering this under Behaviour is appropriate. The actual agitation merits inclusion under Psychological and Emotional Needs - the more so if it persists after the intervention is completed. I do not think we can infer that the refusal of food and fluid indicates a wish to slip the mortal coil - because the resistance is not confined to nutrition alone, but rather that any intervention provokes resistance. You may have noticed non-verbal signs suggesting misery or distressing awareness of his plight, if so this would be noted under the domain of Psychological and Emotional needs. As one of my Independent Review Panel chairmen used to say "because I cannot think and talk does not mean I cannot feel".
TonyL
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Hi, I have managed to move mum's CHC meeting to the Monday coming. I hadn't heard from Social Services so I called them today.
They have just called back to say they won't be attending as they don't have to anymore as they don't have the staff.
I was a surprised as I thought Social Services had to be involved, but this is apparently not true. She said the care home nurse should support my mums cause.
So can someone please clarify to me that social services doesn't actually need to be involved although they could be. Not looking forward to this one as no one yet has still actually visited mum to asses her, and it now looks like I am on my own.
Many thanks
Ruth
They have just called back to say they won't be attending as they don't have to anymore as they don't have the staff.
I was a surprised as I thought Social Services had to be involved, but this is apparently not true. She said the care home nurse should support my mums cause.
So can someone please clarify to me that social services doesn't actually need to be involved although they could be. Not looking forward to this one as no one yet has still actually visited mum to asses her, and it now looks like I am on my own.
Many thanks
Ruth
All I can do, Ruth, is share our recent experience, as I'm pretty sure the guidelines as to how CHC DST meetings are undertaken is a national thing. Dad was assessed by a complex discharge nurse (he is in an assessment bed in a nursing home currently) who is part of the CHC team, she took into account mine and my Mum's input, plus information from the home and her own observations and completed the screening checklist. She and the home manager then invited the social worker and Mum and I to attend the actual Decision Support Tool/Multidisciplinary meeting the following week. (which was a couple of days ago) As I understand it, the social worker is there to make sure they have all the social information and needs correctly recorded, and so that should CHC come back for more evidence or refuse to grant CHC funding, she can step in and confirm that in her opinion, Dad's needs cannot be met by th Local Authority as they are greater than the LA can be expected to provide.... if it is still a NO from CHC, then she would need to pass on to another Social Worker to proceed with finding a placement and sorting out any funding arrangements.
I *hope* my thoughts are correct, there's been a lot to take in recently! I personally don't see that the CHC meeting is being done correctly without all of the representatives present. Hopefully someone else may be able to give you more specific guidance. It's such a worrying time for you and not right that you feel unsupported and alone x
@Ruth32
I draw your attention to page 15 of the National Framework paras 29-31 inclusive:
29 A local authority must, when requested to do so by the ICB, co-operate with the ICB in arranging for a person or persons to participate in a multidisciplinary team. Local authorities should:
- respond within a reasonable timeframe when consulted by an ICB prior to an eligibility decision being made (refer to paragraph 22)
- respond within a reasonable timeframe to requests for information when the ICB has received a referral for NHS Continuing Healthcare.
30 It is also good practice for local authorities to work jointly with ICBs in the planning and commissioning of care or support for individuals found eligible for NHS Continuing Healthcare wherever appropriate, sharing expertise and local knowledge (whilst recognising that ICBs retain formal commissioning and care planning responsibility for those eligible for NHS Continuing Healthcare).
31 Regulations state that local authorities must nominate individuals to be appointed as local authority members of independent review panels where requested to do so by NHS England. This duty includes both nominating such individuals as soon as is reasonably practicable and ensuring that they are, so far as is reasonably practicable, available to participate in independent review panels.
TonyL
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Thanks so much for this. I thought it might be the case after reading the woolly language. I know the assessor actually hasn't seen my mum yet, so I am hoping she will do on Monday morning, as I really don't think you can get a feel for someone and their needs without witnessing them. I have asked the manager of the care home to attend too, so fingers crossed. Otherwise, I will be going down the route of an appeal. Many thanks again.
Yes, that is my experience to but apparently they now don't have to be. As mentioned in the message above. The language is woolly at the best.
@Sonya1 Thanks so much for the reply, it seems after much investigation, they don't have to attend. They need to be invited but don't have to go. I am wondering that as, if CHC was taken away, my mum would be self funding, then they think they don't need to get involved. We will see what the outcome is on Monday anyway. I might be on here having a rant later on that night. Saying that, it is a 7hr round trip with a stressful 2hr meeting in between, I might just be going straight to bed !
@Ruth32
Not quite, it looks as though the ICB and SSD have come to an agreement, that the ICB will not formally request a social worker's attendance. The National Framework makes clear that if an ICB actually requests a social worker then the SSD must provide one. It's that way round. I suspect that the SSD is short of staff, the SSD could for instance have said that if a SW is requested then fewer social service assessments of inpatients awaiting discharge will be done, and given the well publicised problems of delays to hospital discharge you can see how such a situation could arise.
TonyL
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