Has anyone experienced a continuing health care application?

[whataboutbob]

My Dad has Alzheimers and high care needs due to challenging behaviour. He is at home, lives with my brother who cannot care for him due to his own mental health problems. Dad has all day carers 7 days/ week for his own safety, plus some physical health problems. I asked for him to be considered for CHC and we got through the 1st stage of the application. Next week he will be properly assessed at home by a representative of the CCG. I am wondering how I can prepare for this and best put forward his case for needing chc. Any advice/ observations form those who have gone through this would be most welcome. Thank you.

Hi Bob, I haven't been through this yet, but I've looked into it as mum may qualify. You can access the checklists that they will use here, and you can see how it is scored, which may help in finding concrete examples of why your dad would fit into particular categories.

Look at the criteria closely. You would be best advised to find evidence for more than one area of need; as a few of the areas even if he scores maximum are not enough on their own to make a qualification. I can't remember how the scores for cognitive function are weighted. Good luck.

I agree with looking at the criteria and working out how your DF might fit into the higher categories. My recollection is that they need to score at least HIGH in 3 categories to qualify. It also seems to be open to individual interpretation to a certain extent. My DD was assessed by one person and then for her annual review she was reviewed by a different person. Some of the gradings changed even though DDs condition had not.

Thanks everyone. Hi CMOT! I will read the document in advance of the meeting and try and do my own scoring. I am fully anticipating Dad will not qualify, and will consider appealing but I want to give it my best shot.

Where are you in the process? Is this the initial checklist or a fuller assessment?

Hi crumble it's the full assessment. It's taking place at his home next wednesday.

My understanding is you need to score either one 'priority' or two 'severe ' across the 12 domains for automatic recommendation for eligibility (not all domains have those as options though). You can also get a recommendation based on the overall picture of having lots of highs, if the professionals present agree. You should seek to stress complexity, severity, intensity and unpredictability of health needs, as this is what they should assess on. Also, if you disagree with professionals' assessment in any category, make sure your views are recorded on the assessment documentation, which will help should you want to appeal

Thank you porolli this really is most useful. It gives me impoetus to not just want to come across as a nice person during the meeting (which I might have done, partly out of embarrassement at the whole situation) but to voice my objections if i have any.

whataboutbob I'm not trying to be negative, just honest, but it is really hard to get CHC approved unless the person has significant and complex health problems with a very limited life expectancy. Who is completing the assessment, is it someone who knows your dad well?

Hi Crumble I totally agree it will not be a walk in the park but I feel I owe it to Dad and to myself to at least try, while there is a chance however small. I do not think limited life expectancy is an essential criterion though.
Will post again after the meeting. I am expecting a no, and an appeal.

Agree with crumble. Our DD 9 has a rare syndrome, is tube fed, has a very lively colostomy, requires 2 subcut infusions a week non walking and severe learning difficulties and had her CHC removed we are appealing but who knows. Seems to be a bit like DLA!!

I do think you should go for it absolutely!

In theory, very limited life expectancy is not one of the criteria but in practice, it often is and what's more, if it's much more than 3 months, you're going to have to fight. CHC panels are very, very strict.

Sorry to hear about your daughter losing the CHC 2old. That must be stressful. Good luck with the appeal.

The Alzheimer's Society have some very good resources on CHC, which I refer to every time we are reviewed, even though DH is quadriplegic and doesn't have dementia. It's just a good primer.

My advice is to treat it like a legal case. Do your own scoring beforehand so you are prepared to talk through needs in each domain. If you can, make sure you invite at least one of your HCPs. We generally get our GP and key district nurse to come along - they can be invaluable in challenging inaccurate statements (which are not necessarily bad practice or anything, just that having someone really familiar and properly qualified is generally useful.). You can invite anyone you like to the assessment so get people on your side.

Understand that it's not about how sick someone is. You could be dying and not qualify for CHC. It's a particular set of criteria that you must meet, that is all. The key things to consider are complexity and unpredictability of health needs.

Social needs are not worth arguing on as the decision is about whether the care required is primarily a health or social need, and social needs means council funding. (You might like to read the Health Acts, esp 1948, 1970, and 1990 to get your head round this.) Alzheimer's patients often lose out because of this rather arbitrary distinction.

Remember that well managed needs are still needs and must be considered. If your dad needs complex care and you are providing it outside the CHC system, that cannot be used to show his needs provision inherently falls outside the CHC system. Secondly, his needs being met does not mean his needs are not eligible. Assessors often try to establish this (false) position so it's worth saying calmly that "well managed needs are still needs", which is a direct quote from the National Framework (also worth reading). 1 , 2

Thanks Taconata your advice is invaluable. I have had a go at doing the scoring today. you are right about not assuming the CCG invites the relevant persons- they hadn't contacted the care agency, so I went ahead and made sure a carer would be in attendance. Too late to invite the GP. There will be a social worker there too.
I think it can feel hard to distinguish between health and social needs in dementia. Because of dad's alzheimers, his behaviour is affected and he can pose a risk to himself and potentially to others so I am going to make sure that aspect is taken into consideration. he is only safe because he has skilled carers with him all day, and requires medication to control symptoms.

Hi, I'm a nurse in elderly care so we prep for these a lot!

One of the most helpful things would be to do a 48 hour care diary - every time he needs any help, document what he needs, how much time it took and how many people. This gives a good picture of the intensity of his care needs.

Well Dad just had his assessment and i was told it was borderline and they would get back to me on monday. I strongly suspect they are just preparing their arguments for a refusal. It all hinges on behaviour- they said it was a high need, I believe it was severe. For the sake of Dad's dignity I can't outline all his behaviour here, but there have been numerous incidents, before all day care started and since, where the police was involved, or would have been involved if carers or I hadn't been there to manage the situation. Not to mention physical risk to himself and to to others.If they score him severe on behaviour he will qualify. If it is a no on monday, I am going to appeal. Sad and tiring to be in this position, but i feel strongly he has a primary health need for care and medication due to his dementia and other conditions, and am not prepared yet to give up. Thanks to all for your advice, any more suggestions would be gratefully received at this point.

Faith, the carers keep a care records book which was very useful in the meeting and helped challenge a couple of the dismissive statements the ccg assessors made.

Fingers crossed for you. Maybe go back and read the guidance again - there is a phrase in there that says something like 'a need is still a need if it is being met now but would be worse if care not in place' -which to me seems like the situation you describe with your father's incidents.