Dad is now dying and can’t access CHC

nitram

Registered User
Apr 6, 2011
30,075
0
Bury
I have previously posted that
He or she has a rapidly deteriorating condition and the condition may be entering a terminal phase.
does not include a time scale, this is left to the certifying clinician.

Then finance may come into the decision.
Is a hospital doctor more impacted by the cost to the CCG than a GP?
I don't know the answer, maybe others can comment.

Recapping on my experience.
A&E registrar said he would apply for fast track and gave a prognosis of 6 months max.
Consultant, in front of registrar, nurse, myself, and my two daughters said she was sorry but my wife had 'not much life left'.
Wife was discharged to nursing home.
CCG were ambivalent about the progress of fast track.
I went into overdrive, now realise I was venting my anger, obtained copies of hospital documents and asked GP to consider fast track.
GP sent fast track application by fax, accepted the same day.
Then I attacked CCG with a statement of the consultant's comments signed by myself and my two daughters, they backtracked CHC to the date of A&E admission.
CHC was to be reviewed after 3 months, my wife died 3 days short of this.

Motto is after discharge try again.
 

Leeds

Registered User
Sep 20, 2015
165
0
I have previously posted that
He or she has a rapidly deteriorating condition and the condition may be entering a terminal phase.
does not include a time scale, this is left to the certifying clinician.

Then finance may come into the decision.
Is a hospital doctor more impacted by the cost to the CCG than a GP?
I don't know the answer, maybe others can comment.

Recapping on my experience.
A&E registrar said he would apply for fast track and gave a prognosis of 6 months max.
Consultant, in front of registrar, nurse, myself, and my two daughters said she was sorry but my wife had 'not much life left'.
Wife was discharged to nursing home.
CCG were ambivalent about the progress of fast track.
I went into overdrive, now realise I was venting my anger, obtained copies of hospital documents and asked GP to consider fast track.
GP sent fast track application by fax, accepted the same day.
Then I attacked CCG with a statement of the consultant's comments signed by myself and my two daughters, they backtracked CHC to the date of A&E admission.
CHC was to be reviewed after 3 months, my wife died 3 days short of this.

Motto is after discharge try again.
Thank you for your advice, it is all a minefield. It’s about time we all joined forces and challenge the system collectively. There is non compliance to the framework by trusts, there is bullying by Hospital staff if you complain to Pals. In the midst of this, our loved ones suffer and die undignified deaths. It would be enlightening to find out how many fast tracks are granted for non dementia patients v dementia patients, how many dementia patients have free access to hospice facilities etc. The whole system discriminates against dementia. Xx
 

Kikki21

Registered User
Feb 27, 2016
2,270
0
East Midlands
Thank you for your advice, it is all a minefield. It’s about time we all joined forces and challenge the system collectively. There is non compliance to the framework by trusts, there is bullying by Hospital staff if you complain to Pals. In the midst of this, our loved ones suffer and die undignified deaths. It would be enlightening to find out how many fast tracks are granted for non dementia patients v dementia patients, how many dementia patients have free access to hospice facilities etc. The whole system discriminates against dementia. Xx

It was clear that the hospital where my mum
was at least originally on the wards & although they were classed as elderly people wards, the knowledge of dementia was very lacking. Although when she was very poorly this year, the C wards were much better informed & trained & the nurses there were all fantastic. It was awful fighting the system & I tried to fight the NHS afterwards as I do believe my mum was wrongly assessed when it came to CHC assessment but you come up against so many stupid road blocks that I came to the conclusion that it wasn’t worth it! Keep trying & pushing @Leeds x
 

Leeds

Registered User
Sep 20, 2015
165
0
It was clear that the hospital where my mum
was at least originally on the wards & although they were classed as elderly people wards, the knowledge of dementia was very lacking. Although when she was very poorly this year, the C wards were much better informed & trained & the nurses there were all fantastic. It was awful fighting the system & I tried to fight the NHS afterwards as I do believe my mum was wrongly assessed when it came to CHC assessment but you come up against so many stupid road blocks that I came to the conclusion that it wasn’t worth it! Keep trying & pushing @Leeds x
I really appreciate your support especially as you know the local patch. I visit dad every day to make sure he is being cared for. I am always there at meal time because they give him standard meals even though he has been assessed by the SALT team as needing soft food. He was choking yesterday on the meat and guess what he was given today,large piece of beef!! It beggars believe. They also keep putting the buzzer close to him, as the chap next door has the curtains round and nurse station can’t see dad. He hasn’t a clue what to do or what it is!! Xx
 

Moggymad

Registered User
May 12, 2017
1,314
0
We got the nurse to write on the whiteboard above mums bed what her dietary needs were & that she needed feeding & watering. She was reassessed by SALT as well for thickener in her drink which we also asked to be written on the board as drinks were supplied by non nursing staff. Whilst you are there at lunch time could you fill in the food choices for the following day?
Even when mum had stopped eating & drinking, food was still being supplied despite me telling them it wasn't needed. Such a waste.
 

Leeds

Registered User
Sep 20, 2015
165
0
We got the nurse to write on the whiteboard above mums bed what her dietary needs were & that she needed feeding & watering. She was reassessed by SALT as well for thickener in her drink which we also asked to be written on the board as drinks were supplied by non nursing staff. Whilst you are there at lunch time could you fill in the food choices for the following day?
Even when mum had stopped eating & drinking, food was still being supplied despite me telling them it wasn't needed. Such a waste.
That’s a great idea, there is the SALT diagram and prompt to drink notice but they don’t seem to take any notice. Thanks for your suggestion. X
 

Lemondrizzle

Registered User
Aug 26, 2018
246
0
We got the nurse to write on the whiteboard above mums bed what her dietary needs were & that she needed feeding & watering. She was reassessed by SALT as well for thickener in her drink which we also asked to be written on the board as drinks were supplied by non nursing staff. Whilst you are there at lunch time could you fill in the food choices for the following day?
Even when mum had stopped eating & drinking, food was still being supplied despite me telling them it wasn't needed. Such a waste.

Same here. Even when MIL was at the very last hours of life, had not eaten for days and was not capable of doing so, the housekeeper bowled up with a pureed beef dinner and ice cream pudding. When I queried it and pointed out the waste she said that MIL's records did not state nil by mouth so they had to provide food!!!
 

Spamar

Registered User
Oct 5, 2013
7,723
0
Suffolk
Those notice boards over a hospital bed are a complete waste of time and space. During a recent hospital stay I was in three different wards. The staff on two wards could read. The third ward was useless. The name I use is a shortened form of my first Christian name which I dislike intensely. After a few days when every single nurse has used my long name, and I pointed it out to a few, I eventually lost it and told one nurse what I thought. She must have told everybody else, cos most of them got it right after that! But if they can’t be bothered to read that, what else did they get wrong. I know I had a few ‘discussions’ on the drugs I was taking........
Don’t think I was the most popular person on that ward! But nurses on the other two wards coped.
 

Leeds

Registered User
Sep 20, 2015
165
0
Those notice boards over a hospital bed are a complete waste of time and space. During a recent hospital stay I was in three different wards. The staff on two wards could read. The third ward was useless. The name I use is a shortened form of my first Christian name which I dislike intensely. After a few days when every single nurse has used my long name, and I pointed it out to a few, I eventually lost it and told one nurse what I thought. She must have told everybody else, cos most of them got it right after that! But if they can’t be bothered to read that, what else did they get wrong. I know I had a few ‘discussions’ on the drugs I was taking........
Don’t think I was the most popular person on that ward! But nurses on the other two wards coped.
Good for you, they don’t seem to take any notice of what is on there at the moment x
 

Leeds

Registered User
Sep 20, 2015
165
0
Same here. Even when MIL was at the very last hours of life, had not eaten for days and was not capable of doing so, the housekeeper bowled up with a pureed beef dinner and ice cream pudding. When I queried it and pointed out the waste she said that MIL's records did not state nil by mouth so they had to provide food!!!
I know, unbelievable, dad had “goodie” bags over Christmas with mince pie, xmas cake, crisps and cheese and crackers. I dread to think what would have happened if he tried to eat them xx
 

Quizbunny

Registered User
Nov 20, 2011
156
0
The last time mum was in hospital, the ward ‘hostess’ would pour her tea and put the beaker in front of her. I pointed out that her drinks should be thickened and was told that only nursing staff could add thickener. For one thing the liquid should be added to the thickener not the other way round, and in any event if a nurse bothered to come and do it the tea had always gone cold.
Mum ended up dehydrated and with a UTI.
By the way she was in hospital for aspirating and not for the first time.
 

Louise7

Volunteer Host
Mar 25, 2016
4,683
0
Mum spent 3 months in hospital (long story...) and was given either fish pie or shepherds pie every day, sometimes the same pie for lunch and evening meal. The family of the woman in the bed opposite put a big poster up saying 'no fish pie or shepherds pie' but I don't think the staff took any notice. When I asked if Mum could have something different they said it was up to family to choose something from the menu. I suggested that as Mum had a normal diet could they not just give her a variety of food rather than expect family to go to the hospital everyday (prior to lunch) and choose from the menu but apparently this wasn't possible. I'm surprised that Mum didn't come out looking like a pie :(
 

Leeds

Registered User
Sep 20, 2015
165
0
The last time mum was in hospital, the ward ‘hostess’ would pour her tea and put the beaker in front of her. I pointed out that her drinks should be thickened and was told that only nursing staff could add thickener. For one thing the liquid should be added to the thickener not the other way round, and in any event if a nurse bothered to come and do it the tea had always gone cold.
Mum ended up dehydrated and with a UTI.
By the way she was in hospital for aspirating and not for the first time.
Hi, dad’s been in hospital 3 weeks now and just started to have small amounts, he needs soft food but no one takes any notice of the SALT notice. He hardly drinks and he is dehydrated, staff don’t monitor liquid or food intake. Dementia patients get a raw deal in hospital , the whole situation is totally unacceptable. X
 

Leeds

Registered User
Sep 20, 2015
165
0
Mum spent 3 months in hospital (long story...) and was given either fish pie or shepherds pie every day, sometimes the same pie for lunch and evening meal. The family of the woman in the bed opposite put a big poster up saying 'no fish pie or shepherds pie' but I don't think the staff took any notice. When I asked if Mum could have something different they said it was up to family to choose something from the menu. I suggested that as Mum had a normal diet could they not just give her a variety of food rather than expect family to go to the hospital everyday (prior to lunch) and choose from the menu but apparently this wasn't possible. I'm surprised that Mum didn't come out looking like a pie :(
It is absolutely shocking the way dementia patients are treated in hospital. I am convinced that even the nursing staff don’t have a clue. X
 

Kikki21

Registered User
Feb 27, 2016
2,270
0
East Midlands
It’s so sad @Leeds that you feel that you have to monitor the situation. I also had SALT issues with my mum. At one point, it seemed she couldn’t swallow but then it seemed to right itself & she was ok but it was no wonder with all the seizures she had had. I hope you get a breakthrough somehow x
 

RJCB

Registered User
Dec 31, 2019
20
0
This is dreadful. My Father left Hospital 2 weeks ago and is now in a Care Home. He is self funding. I found the Care Home. Nobody seemed to know what the plan was at the Hospital. I am an RN in the NHS and , luckily, I know some of the systems. Be strong. Insist that your Dad remains in the Hospital and isn’t dumped somewhere that you and your family are not happy with. Focus on your Dad, your family and yourself. I am sorry that you have to deal with all of this while your Dad lies in a hospital bed.
 

Leeds

Registered User
Sep 20, 2015
165
0
This is dreadful. My Father left Hospital 2 weeks ago and is now in a Care Home. He is self funding. I found the Care Home. Nobody seemed to know what the plan was at the Hospital. I am an RN in the NHS and , luckily, I know some of the systems. Be strong. Insist that your Dad remains in the Hospital and isn’t dumped somewhere that you and your family are not happy with. Focus on your Dad, your family and yourself. I am sorry that you have to deal with all of this while your Dad lies in a hospital bed.
Thank you for your support, it’s strange but dad seems calm in hospital, I think it is easier for him to understand and remember the hospital environment x
 

Leeds

Registered User
Sep 20, 2015
165
0
This is dreadful. My Father left Hospital 2 weeks ago and is now in a Care Home. He is self funding. I found the Care Home. Nobody seemed to know what the plan was at the Hospital. I am an RN in the NHS and , luckily, I know some of the systems. Be strong. Insist that your Dad remains in the Hospital and isn’t dumped somewhere that you and your family are not happy with. Focus on your Dad, your family and yourself. I am sorry that you have to deal with all of this while your Dad lies in a hospital bed.
Hope your dad is ok and content. It must be a relief for you to know he is safe x
 

Leeds

Registered User
Sep 20, 2015
165
0
It’s so sad @Leeds that you feel that you have to monitor the situation. I also had SALT issues with my mum. At one point, it seemed she couldn’t swallow but then it seemed to right itself & she was ok but it was no wonder with all the seizures she had had. I hope you get a breakthrough somehow x
Thank you, it is very worrying when they can’t swallow properly. Another thing I have noticed with dad, he has lost his cough reflex. This also puts him at risk of further bouts of aspirational pneumonia. X
 

Kikki21

Registered User
Feb 27, 2016
2,270
0
East Midlands
Thank you, it is very worrying when they can’t swallow properly. Another thing I have noticed with dad, he has lost his cough reflex. This also puts him at risk of further bouts of aspirational pneumonia. X

Things should get better as normal staff return on the 2nd Jan! Ask to speak to a dr, ask this of PALS & hopefully things will move quicker for your dad. X