End of Life CHC funding

Anne19

Registered User
Apr 5, 2023
20
0
Hi all I have never asked a question on here before but have spent many months getting lots of support from all your informative posts and they have helped me enormously along this horrible journey.
My mum is 84 and has Alzheimer’s which was formal diagnosed in March 2023. In July 2023 she went into permanent residential care after she started to leave her house in the early hours of the morning and was not safe to be living alone anymore.
she settled reasonably well and the care home is very good and has lots of activities going on. Mum has never been a big eater but in February she started to not want to eat and has rapidly gone down hill since then. She was referred to a dietitian but everything tried has not helped. She now weighs 6st 6lbs - has lost over a stone in weight. Her food and Fluid intake is minimal now and she has also become doubly incontinent and had to have a catheter fitted due to urine retention. She has heart failure and was on medication for this and her kidneys are not functioning well. I have been told a few weeks ago, by the practice nurse at the doctors surgery that mum is end of life but that it doesn’t mean she will die this week or next but they would assume within the next 12 months.
Yesterday she pulled out her catheter and the district nurse was unable to refit this due to mums agitation. An out of hours doctor came out last night and managed to insert the catheter and rang me after. This doctor also advised that my mum is now End of Life and that he has stopped her heart medication as this is making her dehydrated and also her high blood pressure medication as her blood pressure is low. He has also left End of Life medication at the care home.

I feel my mum has totally given up with life - she is no longer able to walk any distance, does not join in any of the activities and has no interest in anything really. I just don’t want my mum to continue living this horrible life and feel awfully guilty about this but also am terrified about the day when she is no longer here. She has been my best friend and rock my whole life but this is just a cruel way to have to live.

What I wanted to ask is whether anyone had any experience of getting Continuing Healthcare funding when some one is End of Life? Would this be Fast Tracked and who would we need to contact in the first instance about this. The care home seemed a bit vague about it all when I asked them.

Sorry for the long winded post and thank you all so much for being part of this Forum which helps so much xx
 

nitram

Registered User
Apr 6, 2011
30,825
0
Bury
What I wanted to ask is whether anyone had any experience of getting Continuing Healthcare funding when some one is End of Life? Would this be Fast Tracked and who would we need to contact in the first instance about this
Along with several other members I have had experience of fast track.
In your case I would ask the GP if they would sign a fast track CHC application.
 

Kevinl

Registered User
Aug 24, 2013
7,342
0
Salford
My understanding is that to get CHC it has to be a nursing home rather than a care home, I might be wrong please check. K
 

nitram

Registered User
Apr 6, 2011
30,825
0
Bury
My understanding is that to get CHC it has to be a nursing home rather than a care home, I might be wrong please check. K
CHC unlike FNC can apply to any setting including care home, nursing home, and 'at home'.
Nursing home is only mandated if care plan requires 24/7 nursing presence.
 

Kevinl

Registered User
Aug 24, 2013
7,342
0
Salford
Sorry, nitram is right it was FNC that had to be a nursing home for my wife, CHC when she was home with me.
So many sets of initial letter or acronyms to remember on here.
Funded Nursing Care just in case anyone doesn't know what FNC means. Apologies. K
 

Dave63

Registered User
Apr 13, 2022
510
0
What I wanted to ask is whether anyone had any experience of getting Continuing Healthcare funding when some one is End of Life? Would this be Fast Tracked and who would we need to contact in the first instance about this. The care home seemed a bit vague about it all when I asked them.
A fast track application can be submitted by an appropriate clinician (registered nurse, GP, hospital doctor/consultant). The beauty of fast track is that unlike regular CHC there is no MDT assessment by the ICB and the recommendation for fast track by the appropriate clinician should be accepted and funding put in place asap. Give the GP a call and ask if it's appropriate for a fast track application to be submitted or even the district nurse if they are involved with your mums care.


Sorry, nitram is right it was FNC that had to be a nursing home for my wife, CHC when she was home with me.
So many sets of initial letter or acronyms to remember on here.
I've never understood why the lower level of funding requires 24/7 nursing and is restrictive in location whilst the higher level has no restrictions.
 

Dave63

Registered User
Apr 13, 2022
510
0
The care home seemed a bit vague about it all when I asked them.
When viewing care homes for my mum I found there was a lot of mumbling and vagueness when the subject of CHC was raised. Some care homes may not be well informed about CHC but I suspect a lot of the time it's because of the possibility of getting less in fees than from a self-funder. They much prefer FNC which tends to get paid in addition to what the resident is already paying unless it's specifically in the contract that fees will be reduced if FNC is paid.
 

nitram

Registered User
Apr 6, 2011
30,825
0
Bury
I've never understood why the lower level of funding requires 24/7 nursing and is restrictive in location whilst the higher level has no restrictions.
Not all CHC care plans require 24/7 nursing.
People without a primary health need but requiring 24/7 nursing get FNC paid direct to a nursing home.
 

Tilly13

Registered User
Jul 27, 2020
204
0
Thank you @Anne19 for asking this question.

I'm so sorry that your Mum is at this point in her Dementia illness.
My Dad has been very similar in the past few weeks
 

Tilly13

Registered User
Jul 27, 2020
204
0
Can I just ask if and when a submission is made by an appropriate Clinician is there anything that as a relative you have to do?
Are the Care Home notified?
Will they be paid much less than what my parent is currently paying as a self funder?
Thank you
 

Dave63

Registered User
Apr 13, 2022
510
0
Can I just ask if and when a submission is made by an appropriate Clinician is there anything that as a relative you have to do?
Hi @Tilly13, no, nothing. Once the application is submitted the CHC team should contact the care home to sort out the finance side of things. I believe it should be sorted within days but there are others on the forum who have gone through the fast track process and they'd be better placed to give timescales.

Will they be paid much less than what my parent is currently paying as a self funder?
It's probably different region to region but my mums CHC funding is pretty much the same as the self funding amount she was previously paying.
 

nitram

Registered User
Apr 6, 2011
30,825
0
Bury
Can I just ask if and when a submission is made by an appropriate Clinician is there anything that as a relative you have to do?
Making sure good records are kept and available in case there is a future review could be useful.
 

Tilly13

Registered User
Jul 27, 2020
204
0
Sorry to have jumped onto your post @Anne19
Hope that you are successful if you go for fast track

Thinking of you and your Mum
Hugs xx
 

donkeygirl

Registered User
Mar 18, 2024
10
0
Hi all I have never asked a question on here before but have spent many months getting lots of support from all your informative posts and they have helped me enormously along this horrible journey.
My mum is 84 and has Alzheimer’s which was formal diagnosed in March 2023. In July 2023 she went into permanent residential care after she started to leave her house in the early hours of the morning and was not safe to be living alone anymore.
she settled reasonably well and the care home is very good and has lots of activities going on. Mum has never been a big eater but in February she started to not want to eat and has rapidly gone down hill since then. She was referred to a dietitian but everything tried has not helped. She now weighs 6st 6lbs - has lost over a stone in weight. Her food and Fluid intake is minimal now and she has also become doubly incontinent and had to have a catheter fitted due to urine retention. She has heart failure and was on medication for this and her kidneys are not functioning well. I have been told a few weeks ago, by the practice nurse at the doctors surgery that mum is end of life but that it doesn’t mean she will die this week or next but they would assume within the next 12 months.
Yesterday she pulled out her catheter and the district nurse was unable to refit this due to mums agitation. An out of hours doctor came out last night and managed to insert the catheter and rang me after. This doctor also advised that my mum is now End of Life and that he has stopped her heart medication as this is making her dehydrated and also her high blood pressure medication as her blood pressure is low. He has also left End of Life medication at the care home.

I feel my mum has totally given up with life - she is no longer able to walk any distance, does not join in any of the activities and has no interest in anything really. I just don’t want my mum to continue living this horrible life and feel awfully guilty about this but also am terrified about the day when she is no longer here. She has been my best friend and rock my whole life but this is just a cruel way to have to live.

What I wanted to ask is whether anyone had any experience of getting Continuing Healthcare funding when some one is End of Life? Would this be Fast Tracked and who would we need to contact in the first instance about this. The care home seemed a bit vague about it all when I asked them.

Sorry for the long winded post and thank you all so much for being part of this Forum which helps so much xx
Hi to you. Not really aware of the health care you are talking about...when does it apply...how near to end of life does patient have to be?
Like you my mum is not eating/drinking now,today she said she wanted to die. She has just had to change homes as her needs escalated after a bad infection at xmas. Don't think she knew me today but smiled when I talked of escaping to walk on the moor(she lived in Devon) continually asking for help and very sleepy,spitting medication out,will strip her clothes if she gets chance and try to stand,which she cannot really do. Her eyes are bad and she's deaf so doing or interacting is hard.
It really is an awful way to be. And of course I have the guilt for her being their. All you carers are amazing that still have loved ones at home, she's on my mind 24/7 and like a lot of you feel it will be me going b4 her.
You feel very isolated in this position it is good to read other peoples comments. You are all amazing!!!!
 

JackieG1

New member
Sep 19, 2023
9
0
Hi to you. Not really aware of the health care you are talking about...when does it apply...how near to end of life does patient have to be?
Like you my mum is not eating/drinking now,today she said she wanted to die. She has just had to change homes as her needs escalated after a bad infection at xmas. Don't think she knew me today but smiled when I talked of escaping to walk on the moor(she lived in Devon) continually asking for help and very sleepy,spitting medication out,will strip her clothes if she gets chance and try to stand,which she cannot really do. Her eyes are bad and she's deaf so doing or interacting is hard.
It really is an awful way to be. And of course I have the guilt for her being their. All you carers are amazing that still have loved ones at home, she's on my mind 24/7 and like a lot of you feel it will be me going b4 her.
You feel very isolated in this position it is good to read other peoples comments. You are all amazing!!!!
My own mother very recently passed away and I understand completely how you are feeling. Those last few months were tortuous watching her decline. Like so many others, she stopped eating, surviving only on sips of milk. She's stopped speaking, didn't interact, but I knew she'd could hear us. She may not always have been able to process what we were saying but when we sang to her favourite songs her lips would move. Who knows what goes on in the dementia brain!!
Like you, the stress was with my sister and I 24/7. Every phone call was potentially bad news. No chance of ever switching our phones off and the anxiety was constant.
I can only say that it will eventually come to an end and if you are like us, we wanted it to be over. Our lovely mother as we knew her had long slipped out of the door before her body gave up. We sat with her throughout, but like you, like everyone reading this, we loved her and always tried to do the best for her.
Instead of dreading her death, treat yourself with kindness, don't fight back your emotions and be grateful for the life she lived.
Try to remember her as she was before dementia became part of your lives. I'm sure she had many happy years before this awful condition came along.
Thinking of all of you out there walking this path.xx
 

Anne19

Registered User
Apr 5, 2023
20
0
Dear @nitram, @Dave63 and @Kevinl - thank you all so much for taking the time to reply. It is such a minefield trying to do the best thing while going through all the emotions of watching a loved one fade away in front of you. Your comments are really useful and the link you posted @Dave63 gives a lot of answers to my questions.
Thank you all and take care x