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Success with CHC funding for Dementia/Alzheimers?

Palerider

Registered User
Aug 9, 2015
3,135
0
North West
Hi everyone, just wondering how many people here have actually had success in securing CHC funding for someone with advanced Alzheimer's?

If my Mum didn't have 24/7 care and people to essentially do absolutely everything for her, she would die - that seems pretty much a Primary Heathcare Need to me. She has other complications - Osetoporosis and Menieres Disease (constant vertigo), very bad mobility from a fractured hip - but nothing that means she needs an actual nurse looking after her. I have read that CHC is rarely awarded unless someone is on feeding tubes, need a nurse to look after them etc. We did apply at the start of the year and got turned down, but we did get awarded FNC should she move to a care home.

Would be interested to hear your feedback
Hi @feralcole

CHC funding has become a very contentious issue and upon taking two seperate legal advisors view they both felt the CHC have thier own agenda in how they distribute funding regardless of the clear guidance, they seem to either downgrade applications or just simply ignore facts that will include people for CHC. This is after my mum being granted CHC funding for twelve months and then on the new financial year it being very quickly and very questionably removed. I can't comment on my mums case any further as it is currently under appeal and legally challenged.

More recently was a move to seek judicial review which was declined not on the principal of the appeal but purely on the technicalities of application. The overriding review judges remarks are worthy of reading because in it he essentially supported the claim although he could not support the grounds of application for judical review on that particular application.

The Rt. Hon. Lord Justice Bean said this - a staggering statement when stating: "I note that the Public Accounts Committee (PAC) has found that there are systemic failures in the funding of patients with continuing healthcare needs. If they and the Clamant (sic) are right, the remedy is in the political sphere, not the courts".
 

Frank24

Registered User
Feb 13, 2018
345
0
Hi there - I haven't - these are a solicitor firm - is that correct? I would go through the process first, and find out the outcome. You might be surprised. I was.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
12,133
0
Yorkshire
My dad is due for his CHC assessment appointment next week and the more I read the more complicated it seems. Has anyone any experience of using a solicitor to assist them?

i don't have such experience but know that the NHS site mentions Beacon as on this page of their website

AgeUK may be able to help

and maybe call our Support Line as the have a lot of knowledge of these matters

if members do have ideas of solicitors/companies to help, these can't be named on the forums but could be passed on by PM
 

wilko73

Registered User
Feb 8, 2021
185
0
My dad is due for his CHC assessment appointment next week and the more I read the more complicated it seems. Has anyone any experience of using a solicitor to assist them?
i note a solicitors near me has ex nurses and health workers and probably private social workers on their team so they can give their own professional assessments to rival those of the local authorities.sadly we would never be able to afford that
 

Cookie123

Registered User
Dec 6, 2019
22
0
i note a solicitors near me has ex nurses and health workers and probably private social workers on their team so they can give their own professional assessments to rival those of the local authorities.sadly we would never be able to afford that
HI @wilko73 Could you please post details of those solicitors? I need some expertise in tis area. thanks so much. @BlondieH good luck with the assessment. Let us know how it goes. just exploring options for my husband. Thanks!
 

Brizzle

Registered User
Mar 1, 2019
72
0
Can anyone who was granted CHC for their loved one give me a breakdown of the care domain levels and how they were marked on the DST. That is Priority,Severe,High and moderate. I know higher marking is not an absolute prerequisite to getting CHC awarded and there are many other factors involved but it might at least provide a basic guideline to the chance of success.

Thank you
 

Elle3

Registered User
Jun 30, 2016
677
0
My dad was awarded CHC, which seemed quite straight forward, very similar to Andy54's experience. My dad was awarded it for his challenging behaviour, communication and Cognition. I had lots of support from the Social worker and the care home and we all had lots of evidence to support our claim. The 3 month review was almost a formality and the funding was continued. Unfortunately my dad passed away just before we got to the 12 month review.

From what I can gather, it does seem if a person is mobile and more challenging and lacks the ability to understand the impact of their behaviour and cannot communicate well how they feel or to make themselves understood. Then this requires more care than someone who is say immobile and bed bound. My dad was unpredictable in his behaviour, so had to be constantly watched especially around other residents and the staff. Plus he kept trying to escape from the care home. He was on medication to try to control this behaviour and needed other medication when things escalated sometimes.
 

Brizzle

Registered User
Mar 1, 2019
72
0
Thank you Elle3.

Did your dad therefore get given a priority marking in the behaviour domain thus ensuring what is usually regarded as automatic CHC entitlement?

I’m basically trying to get as broad a range of markings where people have
been successful in attaining CHC for their loved ones.

I am very sorry to hear about the loss of your poor dad. My mum is in late stage advanced dementia so given that life expectancy is not much more than 1 to 2 years I am trying to prepare myself for what is ahead although of course you can never fully prepare yourself for such an event.
 
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MarieD

Registered User
Dec 26, 2021
38
0
Hi my mum has received CHC she was classed as having challenging behaviour she was extremely Ill with severe hallucinations and paranoia and causing a lot of distress to other residents.
She was also malnourished and lost around three stone in a short amount of time , she is still
The same almost a year later and unable to gain weight.
She’s unsteady on her feet and had quite a few falls and she’s almost completely deaf and has very poor eyesight ( she refuses to wear glasses or hearing aid)
She can be violent at times and has hit and attacked staff members as well as myself ( this is extremely upsetting as she was a very gentle mannered person )

She was moved to a care home for challenging behaviour and seems so much more settled though she is still extremely ill she still has hallucinations but these are controlled better now with medication .
she can still have violent outbursts ( she almost broke my finger the other week she seems to have incredible strength even though she’s tiny and frail)

You can’t have a normal conversation with her unlike some of the other residents in her home. She scored severely and high on three of the items they look at the main one was cognitive and one was nutrition.

Hope this helps x
 

Brizzle

Registered User
Mar 1, 2019
72
0
Many thanks MarieD for sharing these details. I am pleased you have found your mum the right place for her needs.

May I ask did your mum score 2 severe and one high or 2 high and one severe ?
I am assuming from what you have said that your mum probably received a severe in both challenging behaviour and cognition but of course I could be wrong. On the other hand I might be interpreting what you said incorrectly in that your mum actually scored 3 severes and 3 highs in the various domains ?
 

MarieD

Registered User
Dec 26, 2021
38
0
Many thanks MarieD for sharing these details. I am pleased you have found your mum the right place for her needs.

May I ask did your mum score 2 severe and one high or 2 high and one severe ?
I am assuming from what you have said that your mum probably received a severe in both challenging behaviour and cognition but of course I could be wrong. On the other hand I might be interpreting what you said incorrectly in that your mum actually scored 3 severes and 3 highs in the various domains ?
I think from what I remember I think you just have to score high in one or two of the different items on the list but it was over a year ago that we had the meeting and I can’t remember exactly so don’t quote me on that. I’m sure if you Google it it should tell you online. But I would say after meeting other residents with dementia on my mothers floor my mothers condition is extreme and it still is even with the correct medication and care.
 

MarieD

Registered User
Dec 26, 2021
38
0
Hi I’ve just had a look back at a whats app message I sent my aunt at the time where I’d detailed everything .
I was slightly wrong what I’d written before sorry.

My mother got severe in behaviour and cognition and She got high in psychological , communication and nutrition
I hope this helps x
 

Palerider

Registered User
Aug 9, 2015
3,135
0
North West
I thnk as much as we would like to think we can assess our own loved ones there is an objectivity clause in how we proceed. Last April 2021 I instructed a legal team to appeal the CHC;s decision to withdraw their funding after twelve months of CHC funding with no real account or signed assessment from the said authority. We are now twelves months on and the matter remains unsettled.

I think unless a person has particular prowess and experience at interpreting the DST I would leave it well alone and get other more authoritative people involved. In fairness to us the general public and also to professionals the DST is essentially an arbitary assessment tool widely open to various interpretations of what the DST is asking for. In principal when a CHC panel meets they decide on the same DST, but these decisions are widely open to whom sits on the DST and their own professional judgement which is not necessarily based on any contact with the person they are assessing. The whole process is wrong, highly contentious and entirely subjective in my opinion having experienced the woeful response I have had from the CHC and in turn their deliberate stalling. Age UK have an excellent advocay available at a cost!
 

MarieD

Registered User
Dec 26, 2021
38
0
I thnk as much as we would like to think we can assess our own loved ones there is an objectivity clause in how we proceed. Last April 2021 I instructed a legal team to appeal the CHC;s decision to withdraw their funding after twelve months of CHC funding with no real account or signed assessment from the said authority. We are now twelves months on and the matter remains unsettled.

I think unless a person has particular prowess and experience at interpreting the DST I would leave it well alone and get other more authoritative people involved. In fairness to us the general public and also to professionals the DST is essentially an arbitary assessment tool widely open to various interpretations of what the DST is asking for. In principal when a CHC panel meets they decide on the same DST, but these decisions are widely open to whom sits on the DST and their own professional judgement which is not necessarily based on any contact with the person they are assessing. The whole process is wrong, highly contentious and entirely subjective in my opinion having experienced the woeful response I have had from the CHC and in turn their deliberate stalling. Age UK have an excellent advocay available at a cost!
Hi yes I think your correct I think but with my mother I thought she did stand a good chance of getting CHC as her condition was very very severe her symptoms were by no means normal for her condition. The person assessing did rely on the assessments from my mothers care manager and her social worker as well as my opinion.
As yet we’ve not had the 12 month review but as you say they can withdraw it at any point so personally I wouldn’t rely on the funding forever because you just don’t know what might happen.

Good luck with your case though x
 

Brizzle

Registered User
Mar 1, 2019
72
0
Hi I’ve just had a look back at a whats app message I sent my aunt at the time where I’d detailed everything .
I was slightly wrong what I’d written before sorry.

My mother got severe in behaviour and cognition and She got high in psychological , communication and nutrition
I hope this helps x
Much appreciated, thank you very much for clarifying that MarieD.
 

lynnytb

New member
Jun 13, 2018
3
0
Hi there - I have this week had an online DST meeting for my mum. It was absolutely gruelling (as I'm sure you're all aware) but I felt that I and the care home representative made a really strong case ... only to be called later and told that (surprise, surprise) my mum is not eligible for funding. I am still awaiting the written copy of the decision report, but can only assume she was marked down again in the 'post-meeting meeting' on some of the domains where we had had to fight particularly hard to get the LA and NHS reps to up their scores. I am considering an appeal with specialist legal help, but online reviews of the main firms offering this service are quite mixed – and of course it's an expensive option. I know it is not permitted to post details of such providers in this forum, so if anyone who has personal experience (good or bad) of taking this route could PM me, I would very much appreciate it. Thank you in advance - and sending best wishes to all x
 

Shedrech

Volunteer Moderator
Dec 15, 2012
12,133
0
Yorkshire

lynnytb

New member
Jun 13, 2018
3
0
Hello @lynnytb
a warm welcome to posting on DTP
this may help you
Thank you :) I have read those and will take another look, but I was particularly interested in others' experiences of pursuing the option of specialist legal assistance, as I'm really not sure I have the time or energy to take it all on alone. Will definitely give the volunteer support serious consideration though. Thank you very much once again
 

Elle3

Registered User
Jun 30, 2016
677
0
Thank you Elle3.

Did your dad therefore get given a priority marking in the behaviour domain thus ensuring what is usually regarded as automatic CHC entitlement?

I’m basically trying to get as broad a range of markings where people have
been successful in attaining CHC for their loved ones.

I am very sorry to hear about the loss of your poor dad. My mum is in late stage advanced dementia so given that life expectancy is not much more than 1 to 2 years I am trying to prepare myself for what is ahead although of course you can never fully prepare yourself for such an event.

Hi apologies for delay in responding back to you. My dad scored Severe for Cognition and Behaviour and High for Communication. I was told by the person who did the assessment that as he has Advanced Dementia this is never likely to change and if anything would only get worse, so it would be very unlikely that funding would be taken away. So yes he got automatic CHC entitlement and the report stated this as well. To be honest I think we were very lucky getting the funding without any issues, I just wish everyone else had the same luck and understanding.

Thank you for your condolences, it has been a while now (2019) and in some respect it was a blessing. He died very suddenly of a heart attack in the care home. At least I never had to witness the final deterioration brought on by the disease.

I wish you courage. x