Thank v Much for the reply ….Hi @BigBill and welcome to Talking Point.
The problem with dementia is that most of the problems associated with the disease are classified as social needs, not medical ones. Incontinence, loss of mobility, needing to be fed, loss of speech - all of these things are considered social care and as such are not eligible for CHC.
TBH, I agree with the SW, it does sound like your mum would be fine in a care home, so long as it is a specialist dementia home. My mum was in a dedicated dementia care home (often called an EMI home) and was fine right up to the end. They would deal with incontinence, resistance to personal care and even a bit of aggression. They would feed people by hand and even had hoists for those who had lost mobility. These sort of homes are also generally much cheaper than nursing homes.
I understand your annoyance with having to sell your mums home, but Im afraid that is usually what happens.
Yes , all done@BigBill
If you have to sell your Mum's house does anybody have LPA (lasting power of attorney)?
Hi Bill,various assessments. Always done without family, despite a specific request for a family member to be present.
Thankyou so much Dave for going to the trouble with the reply . We shrug our shoulders at the not being invited to attend, no point in starting a war . In the process of house selling & will keep a close eye on any changes which allow mum to be part of the system. I find it a bit of a shock that most of these things are just disallowed and are considered as social care .Hi Bill,
I'm by no means an expert but we faced similar issues when our mother was unable to remain at home due to Parkinson's and dementia. It's important that you don't give up based on what you are told by social workers or others on what they view as your mothers likelihood of getting funding. There is a process which should be followed and it's set out in what's called the 'National Framework'. You can download a copy from the NHS website.
Before a social worker even begins talking about means tested funding they should firstly be carrying out a CHC funding checklist. This can be done by the social worker, GP or anyone medically involved with your mothers care. It simply scores your mum on several aspects of your mothers medical/physical needs. If the scoring is high enough it should then be forwarded to your local NHS trust for a full CHC assessment by a multi disciplinary team (MDT). That's when the real fun starts and you'll probably get the run around for months on end.
If the family wish to be a part of ANY assessment then they have to be, no if's, no buts. They are required to do this as per the guidance in the National Framework which I mentioned earlier. Do not take no for an answer.
If your mum is not entitled to full CHC then her entitlement to Funded Nursing Care should then be assessed. This is usually done as part of the CHC assessment.
The social care system is on it's knees and because of this you'll find social workers are struggling with the shear volume of cases they're expected to deal with, so it's pot luck on how involved the social worker wants to be with your mothers case. It's not necessarily their fault, but it's not your mothers fault either, so don't be afraid of standing your ground. Knowledge is power and I really recommend you thoroughly read the funding section of the National Framework.
Good luck
Dave
Hi.
my mum has vascular dementia, most likely brought on by type one diabetes. Her short term memory has been affected, but she is still really chatty and can do most things herself ( until her insulin wasn’t given in a timely manner and she fell and broke her hip) .
long story short…. She was forgetting her injections and went into diabetic DKA which lead to a lengthy hospital stay where they tried to get her onto 2 doses of insulin a day. The district nurses will only visit twice a day so that’s what was needed. She only lasted 10 days at home again with carers and district nurses coming in before she fell in the night, went into DKA again and broke her hip.
she is now in a nursing home and back on her regular routine of insulin as and when needed.
would she be a good candidate for CHC as it’s purely down to the diabetes that she’s there , without it her dementia would be manageable at home for some time.
is it worth applying?
myself and my brother are LPOA for financial only. She is a self funder.
thanks for any info, words of wisdom!
Thanks Dave. It looks like they can move the goalposts at any time!
This is a really helpful post, as I'm preparing for health assessment for mum who has been referred for DST. Thank youMy late Husband received CHC and I have to say that the input from his CH and their exemplary records helped no end-so I advise everyone to regularly read the notes in your loved one's file, especially if you have been advised of an 'incident'-make sure that it is written up fully.
CHC Funding is written about, and questions asked, on a frequent basis on this Forum; people often list the problems their LO is experiencing and as heartbreaking as it is to know someone with Dementia if the symptom is classed as 'low needs' or 'Social Care' then CHC will not kick in. Your LO will need 2 'severes' to advance to an assessment. For example if a person is incontinent that would be classed as 'social care'. If a person's incontinence causes skin problems that requires cream to be administered twice a day-that would probably be classed as 'low needs' if the condition is controlled. Even that is open to interpretation as the NHS mantra is 'a managed need is still a need' but quite often that is ignored and a score is given as 'no needs'. If the skin was broken or bed sores developed then perhaps the decision would be medium needs. If the bed sores were frequent, or infected, or continuous and were difficult to treat then the decision could possibly be 'severe'. However, a 'severe' score could be given in the 'behaviour' domain if the PWD was aggressive when treatment was given whatever level the skin problem/bed sore.
In another example I know of one person on this Forum whose late Husband had a leg amputated; on his CHC checklist his mobility did not receive a severe score even though his mobility was zero and he had to be hoisted from bed to chair etc. Puzzled? Yes, me too! The crux of the matter was that he was not violent/or aggressive when being transferred. My Husband was scored much higher -even though he had two legs to walk on! Why? Because he fell a few times and was very shaky when walking. The falls were not serious enough for Hospitalisation but he needed a Carer with him at all times-not just only for the walking but because he was a danger to other residents. There was concern that his aggression was out of control at times and, if left on his own, it was possible he could inflict harm on others. So, the walking problem had a knock on effect to other domains i.e. cognition (no understanding that he needed help to walk) and behaviour. Pete scored 'severe' in behaviour and cognition and 'high' for mobility.
The thing is when being awarded CHC funding it appears to be all about intensity/complexity and unpredictability. To use my late Husband as an example again-he could start the day full of smiles (although that was quite rare) then as soon as personal care started he was punching, pinching, trying to bite and screaming. The point being that sometimes he was ok-sometimes not. However, no-one managed to discover what the trigger was. Again this illustrated complexity/ unpredictability and intensity-adding to the 'severe' score in 'behaviour'
Now in case anyone thinks that I am voicing my own opinions on why CHC Funding should be/should not be awarded-I'm not. I think the standards are open to interpretation; not just variances between each CCG but also the way individuals 'read' the domains. It's a scandal -I have no ideas how it can be resolved but I hope this probably over simplified explanation may just help a bit.
Keep fighting everyone.
Great links. My mum had to be moved for dementia nursing care as her needs were not being met in residential. I had to insist they consider CHC, and now they are trying to exclude us from the DST assessment, so need to learn fast. Thanks for sharingCouple of links to get you started:
What is the difference between a healthcare need and a social care need?
The basis of most disputes in NHS Continuing Healthcare is the difference between a healthcare need and a social care need. But what is the difference?caretobedifferent.co.uk
Well Managed Need - What does this term mean and how to assess it?
Well Managed Needs is a term used in Continuing Healthcare assessments. It is often misunderstood. This article explains what it means.caretobedifferent.co.uk
The most important document is NHS National Framework which details how the process is supposed to work:
National framework for NHS continuing healthcare and NHS-funded nursing care
This guidance sets out the principles and processes of the national framework for NHS continuing healthcare and NHS-funded nursing care.www.gov.uk
Dave
CHC Review process timeline - any ideas ? Mum had her 3 month assessment on the 11th January, which was followed up by a full assessment on the 6th February. The CHC assessor wouldn't give me any idea of what she was going to put forward to the ICB and when I asked if she was going to let the social worker know the outcome. She said they don't do that anymore, she told me to wait 1-2 weeks to get the answer.
It is now 2 weeks later and have not received any communication from the CHC. I am slightly concerned as they had told me previously they had posted the outcome of mums original review to my address and that has never been received 4 weeks later !
So if anyone has been through the 3 month review and then another full MDT, can you let me know how long it took for CHC to inform you of their decision. I am finding it a bit stressful waiting for the outcome.
Many thanks.
@Dave63 The assessor also said that her report had to go through quality control first ?