Dad is now dying and can’t access CHC

[Leeds]

I am losing the will to live. Dad has late stage VD. 2 weeks ago he was in a care home, mobile, eating drinking and going to the toilet. Yes, he slept 20 hours a day but he was safe.
He is now in hospital after suffering a fall 10 days ago. He is bed bound hasn’t put a foot on the floor since admission. Double incontinent, having to have his bladder emptied every day. Only had a couple of spoonfuls of food since admission and is struggling to swallow food. He was diagnosed with pneumonia. We have been told he has between a month and 6 months to live by the consultant. We have given notice to his previous care home as hospital has told us he needs nursing care. Now the battle begins, he was self funding. We are been given conflicting information every day from the hospital. Pathway 3 assessment bed but not referred, CHC checklist done but actually not by discharge team. Doc states not eligible for fast track as he will live longer than a month. At the moment dad is homeless with nowhere to go if discharged. Surely this can’t be right xx

 

[Mydarlingdaughter]

The hospital social work team are the ones to sort this out. Sometimes better to phone them. They are easier to contact on the phone.

 

[Mydarlingdaughter]

Hospitals assign people new social workers for the time they are in.

 

[Leeds]

The hospital social work team are the ones to sort this out. Sometimes better to phone them. They are easier to contact on the phone.

Thank you , no one has mentioned any social workers and they are preparing for discharge c

 

[nitram]

The hospital will have a formal discharge policy which should include an ongoing care plan which you can give to any nursing home of your choice, the hospital social worker should be able to offer suggestions.
https://www.nhs.uk/using-the-nhs/nhs-services/hospitals/being-discharged-from-hospital/

 

[Shedrech]

hi @Leeds
Admiral Nurses may be able to help ... even if there isn't a local one, they have a helpline
https://www.dementiauk.org/get-support/find-an-admiral-nurse/

and there's the dementia helpline, the advisors have a lot of knowledge
https://www.alzheimers.org.uk/get-support/national-dementia-helpline

both will give you a chance to talk with someone who has access to information in real time

 

[Leeds]

The hospital will have a formal discharge policy which should include an ongoing care plan which you can give to any nursing home of your choice, the hospital social worker should be able to offer suggestions.
https://www.nhs.uk/using-the-nhs/nhs-services/hospitals/being-discharged-from-hospital/

Thank you, I have requested the discharge policy from the ward and PALs, no joy. My issue is the ward staff and discharge staff are giving conflicting information. It’s like wading through treacle x

 

[Quizbunny]

They can’t discharge unless there is somewhere to discharge him to. Hospital social worker is definitely your best bet. Sorry you are in such a mess x

 

[Leeds]

They can’t discharge unless there is somewhere to discharge him to. Hospital social worker is definitely your best bet. Sorry you are in such a mess x

Thank you so much for the guidance x

 

[nitram]

...We have been told he has between a month and 6 months to live by the consultant...
...Doc states not eligible for fast track as he will live longer than a month...

The criterion is not a set length of time, it is

He or she has a rapidly deteriorating condition and the condition may be entering a terminal phase. For the purposes of Fast Track eligibility this constitutes a primary health need. No other test is required.

https://www.gov.uk/government/publications/nhs-continuing-healthcare-fast-track-pathway-tool

You don't say what Doc, in my wife's case, on discharge from an AKI, I asked the registrar about fast track and he said he would apply, he gave a prognosis of 6 months max.

After some time, with nothing happening and with the CCG being evasive, I got the GP to apply by telex, result was fast track granted the same day.

I then went into overdrive and got fast track back dated, there was no witness to the registrar's statement about application for fast track but there were witnesses to the consultant saying 'I'm sorry, your wife has not got much life left'

This approach may seem uncaring, however I was sitting with a laptop at my wife's bedside in a nursing home and have since realised that the CCG bore the full force of my anger at the situation.

My wife lasted 3 months meaning I was not subjected to the inevitable review and probable removal of CHC.

If your Dad is in a terminal stage do not give up on fast track.

 

[Splashing About]

My mother was given about 8 weeks and was fast tracked onto CHC.

I do wonder if the fast tracking was because it was the only way to get her out of hospital. We did actually find a home but the home refused to have her because her needs were too great. The complex discharge team sorted the finances.

 

[Leeds]

The criterion is not a set length of time, it is

He or she has a rapidly deteriorating condition and the condition may be entering a terminal phase. For the purposes of Fast Track eligibility this constitutes a primary health need. No other test is required.

https://www.gov.uk/government/publications/nhs-continuing-healthcare-fast-track-pathway-tool

You don't say what Doc, in my wife's case, on discharge from an AKI, I asked the registrar about fast track and he said he would apply, he gave a prognosis of 6 months max.

After some time, with nothing happening and with the CCG being evasive, I got the GP to apply by telex, result was fast track granted the same day.

I then went into overdrive and got fast track back dated, there was no witness to the registrar's statement about application for fast track but there were witnesses to the consultant saying 'I'm sorry, your wife has not got much life left'

This approach may seem uncaring, however I was sitting with a laptop at my wife's bedside in a nursing home and have since realised that the CCG bore the full force of my anger at the situation.

My wife lasted 3 months meaning I was not subjected to the inevitable review and probable removal of CHC.

If your Dad is in a terminal stage do not give up on fast track.

Thank you so much, apparently the doctor is looking after dad in hospital. She said this is the trust rules and all trusts have different criteria. I also think this is not correct. I will continue to fight for dad’s rights but it is so hard at this difficult time.xx

 

[Leeds]

hi @Leeds
Admiral Nurses may be able to help ... even if there isn't a local one, they have a helpline
https://www.dementiauk.org/get-support/find-an-admiral-nurse/

and there's the dementia helpline, the advisors have a lot of knowledge
https://www.alzheimers.org.uk/get-support/national-dementia-helpline

both will give you a chance to talk with someone who has access to information in real time

Thank you so much, I’ll be on the phone Monday morning mxx

 

[Leeds]

My mother was given about 8 weeks and was fast tracked onto CHC.

I do wonder if the fast tracking was because it was the only way to get her out of hospital. We did actually find a home but the home refused to have her because her needs were too great. The complex discharge team sorted the finances.

Thank you for responding, I suspect dad may be in the same situation xx

 

[Splashing About]

Thank you for responding, I suspect dad may be in the same situation xx

We were told she was moderate to severe Alzheimer’s one day (when I was convinced she was EOL). We were sent off to find homes and given a list to look at. We duly trotted off and wandered through homes disbelieving that they were suitable based on our knowledge of her and very depressed because we couldn’t see how our assessment was so wrong and the homes would not be able to provide enough care but she was too ill to return to living with Dad ....even though they repeatedly told us that was the best place for her and patients do much better once they are home.

Selected one home who assessed her and on visiting the ward they immediately refused to accept her because they wouldn’t be able to cope....

Game changer and the complex discharge team suddenly switched and we were then told she was end of life after all. I did point out that their comments about her improving when we got her home made my family feel responsible for her demise when there was no way we could cope if a flipping home with trained staff on shifts (I.e. not up all night doing 24hr care). I feel really angry about that whole experience but also glad I said my bit.

Investigate and don’t be bullied by them

 

[Kikki21]

If they are pushing to discharge your dad without anywhere to live then that is not a safe discharge at all! I also experienced this with my mum as the closer it got to Xmas then the staff were trying to get everyone out that they could.
I’m still angry that my mum was unsafely discharged having suffered a chest infection, was sent home & within 5 minutes of being at home, thankfully with a carer in place, suffered a huge seizure which sent her back into the hospital again. It was truly a horrific time for all. I know the wards do not like getting PALS involved at all & like someone else said, you need to speak to the hospital social worker x

 

[Mydarlingdaughter]

IMO PALS was set up to try to prevent patients sueing.
Leeds you havent updated the thread, I hope you are ok. Did you manage to get to speak to the hospital social worker assigned to your Dad. If they didnt assign him one they are negligent.

 

[Leeds]

IMO PALS was set up to try to prevent patients sueing.
Leeds you havent updated the thread, I hope you are ok. Did you manage to get to speak to the hospital social worker assigned to your Dad. If they didnt assign him one they are negligent.

IMO PALS was set up to try to prevent patients sueing.
Leeds you havent updated the thread, I hope you are ok. Did you manage to get to speak to the hospital social worker assigned to your Dad. If they didnt assign him one they are negligent.

Hi, thank you your support, dad still in hospital, not eating or drinking, bedbound and delirious most of the time. I have complained to PALs but everything on hold over the Christmas period. They have assessed dad for a pathway 3 bed for further assessments for CHC, I assume. The whole situation is agony, none of the staff speak to us when we visit. X

 

[Leeds]

The criterion is not a set length of time, it is

He or she has a rapidly deteriorating condition and the condition may be entering a terminal phase. For the purposes of Fast Track eligibility this constitutes a primary health need. No other test is required.

https://www.gov.uk/government/publications/nhs-continuing-healthcare-fast-track-pathway-tool

You don't say what Doc, in my wife's case, on discharge from an AKI, I asked the registrar about fast track and he said he would apply, he gave a prognosis of 6 months max.

After some time, with nothing happening and with the CCG being evasive, I got the GP to apply by telex, result was fast track granted the same day.

I then went into overdrive and got fast track back dated, there was no witness to the registrar's statement about application for fast track but there were witnesses to the consultant saying 'I'm sorry, your wife has not got much life left'

This approach may seem uncaring, however I was sitting with a laptop at my wife's bedside in a nursing home and have since realised that the CCG bore the full force of my anger at the situation.

My wife lasted 3 months meaning I was not subjected to the inevitable review and probable removal of CHC.

If your Dad is in a terminal stage do not give up on fast track.

Thank you for your support, I spoke to the CHC funding team and she has said, dad is not eligible with more than a month to live. Apparently “rapidly declining” means death is days. She said with fast track they reassess after a month if still alive. I can’t believe they treat the dying in this way. X

 

[Leeds]

We were told she was moderate to severe Alzheimer’s one day (when I was convinced she was EOL). We were sent off to find homes and given a list to look at. We duly trotted off and wandered through homes disbelieving that they were suitable based on our knowledge of her and very depressed because we couldn’t see how our assessment was so wrong and the homes would not be able to provide enough care but she was too ill to return to living with Dad ....even though they repeatedly told us that was the best place for her and patients do much better once they are home.

Selected one home who assessed her and on visiting the ward they immediately refused to accept her because they wouldn’t be able to cope....

Game changer and the complex discharge team suddenly switched and we were then told she was end of life after all. I did point out that their comments about her improving when we got her home made my family feel responsible for her demise when there was no way we could cope if a flipping home with trained staff on shifts (I.e. not up all night doing 24hr care). I feel really angry about that whole experience but also glad I said my bit.

Investigate and don’t be bullied by them

Thank you, it is an absolute nightmare. Dad is completely oblivious of where he is and has been calm for the last few days. Following our complaint to Pals they have assessed him for a pathway 3 bed. Everything has been on hold over Christmas. No one is speaking to us when we visit. X