CHC Funding for Lewy Body Disease? Anyone got it?

[MissDiane]

Just wondered if anyone has been awarded CHC NHS Funding for a family member with Lewy Bodies Disease?

My mum is in the advanced stages and due to the nature of the disease i feel she scores Severe for communication and Behaviour.

Due to the two being interlinked mums behaviour can vary from hour to hour and day to day, so is unpredictable but frequent and can be severe.

Has anyone any advice of getting funding specifically for Lewy Bodies due to the unpredictable nature of the disease and its complications in fluctuations in cognition and emotion. My mum is often very distressed when she is lucid as she realises what is happening but at other times she just sits with her eyes closed and tries to block out everything around her as its so distressing. She is an EMI home.

 

[AlsoConfused]

No knowledge of LBD but surely that doesn't matter? CHC uses (abuses) a template applicable to all diseases to decide on awarding or withholding CHC.

I'd have thought the unpredictability you mention should help you get the CHC award.

 

[angecmc]

My Mum has Lewy bodies, horrible form of dementia as are all of them, we have not managed to get chc yet for her even though like your Mum she is agitated and angry, her moods can change in minutes, days or hours, she has to be fed now as she can't do it herself and her communication and mobility is very poor, she needs two carers for personal care. In fairness hardly anyone seems to get chc, especially patients with dementia, it is seen as a condition, not an illness xx

Ange

 

[CCGcrusher]

Levy body

Just wondered if anyone has been awarded CHC NHS Funding for a family member with Lewy Bodies Disease?

My mum is in the advanced stages and due to the nature of the disease i feel she scores Severe for communication and Behaviour.

Due to the two being interlinked mums behaviour can vary from hour to hour and day to day, so is unpredictable but frequent and can be severe.

Has anyone any advice of getting funding specifically for Lewy Bodies due to the unpredictable nature of the disease and its complications in fluctuations in cognition and emotion. My mum is often very distressed when she is lucid as she realises what is happening but at other times she just sits with her eyes closed and tries to block out everything around her as its so distressing. She is an EMI home.

My mother has Dementia with Lewy Bodies. Our local CCG denied the diagnosis, saying it could only be proved on autopsy. Basically they were scared stiff that because it causes hallucinations and unpredictable behaviour they would have to fund her care.
I eventually won, but you have to be aggressive and relentless in dealing with your CCG.

 

[Aitchbee]

My Mum has LBD and has been CHC funded for the past 3 years. She initially got it when she was transferred from hospital to a nursing home. They withdrew the funding after 3 months but we applied again a couple of months later and it was reinstated. We had a lot of support from Mum's social worker. We now care for Mum at home and the CHC funding pays for carers to come in. I think it is a bit of a postcode lottery as to whether CHC is awarded. I read accounts on here of people who have seemingly good cases for funding being turned down. The only advice I can offer is to stress the unpredicability of LBD. Be prepared and go through the DST prior to the assessment and identify worst case examples for each section, e.g. agressive behaviour, psychiatric symptoms (depression/anxiety), risk of falling, skin viability, etc. People with LBD require expert care and nursing. It might be as well to go to the assessment with information about LBD as not all health professionals have a lot of knowledge about this disease. All the best!

 

[ckinson]

My Mum has LBD and has been CHC funded for the past 3 years. She initially got it when she was transferred from hospital to a nursing home. They withdrew the funding after 3 months but we applied again a couple of months later and it was reinstated. We had a lot of support from Mum's social worker. We now care for Mum at home and the CHC funding pays for carers to come in. I think it is a bit of a postcode lottery as to whether CHC is awarded. I read accounts on here of people who have seemingly good cases for funding being turned down. The only advice I can offer is to stress the unpredicability of LBD. Be prepared and go through the DST prior to the assessment and identify worst case examples for each section, e.g. agressive behaviour, psychiatric symptoms (depression/anxiety), risk of falling, skin viability, etc. People with LBD require expert care and nursing. It might be as well to go to the assessment with information about LBD as not all health professionals have a lot of knowledge about this disease. All the best!

Aitchbee, sorry to hear about your Mum, I am in a very similar situation. My mum has Dementia + LBD, and we are just moving her into a care home. Very interested in the CHC route, any additional information detail you could provide on the key evidence points used to help valide the need for Health Care vs going down the social care route.

 

[Shedrech]

hello @ckinson
a warm welcome to DTP

this is an old thread and that member hasn't been back here since 2018

maybe start a new thread, adding a little more detail, and members may be able to help