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Totally stressed and bewildered and perplexed - Carers UK Forum

Totally stressed and bewildered and perplexed

Tell us a bit about yourself here.
Still fighting the good fight.

Elderly father with pulmonary fibrosis severe, Parkinson's end stage, chronic heart failure with pacemaker and insulin dependant, has been mostly in hospital since Sept last year. After 6 admissions to hospital from rehab hospital and home care. also has several failed discharges. I am now being pressured into putting him into a home, I don't have poa for care and welfare. he has mental capacity and has stated he wants to go home. It would appear in both cases the discharge team are stipulating that he will no longer be able to call an ambulance, they are trying to get this into a care plan agreement. Nor will a nursing home, should he be out in one. I have never heard of this before.

They refused to commit to end of life but have indicated he might not have long as another infection would be enough to kill him. Also his pacemaker is due to expirer. I understand they have refer to palliative care. The social worker has told my father if he discharges himself home he will send the police to arrest him. Because he would be at risk . Surely they can't put a stop to him calling an ambulance if he needs oxygen or help whether he is in a nursing home or not? doesn t that put him at higher risk? If he is going home to die, then how can they stop that risk?. they also appear to want him out of hospital. I am very perplexed. by it all and am suffering a bit of Carers stress.

I did manage after six months of trying to get someone to do a chc checklist which I was told was positive and the hospital did a dst meeting yesterday. this was after I blew up at the doctor and a social worker and pulled out of my bag a printed copy of fast track forms. The resulted of yesterday's meeting was a few highs and moderates. I wasn't told of any recommendation other than they said he should be in a nursing home again with stipulation of no ambulance allowed. So off they want to try and get dad to agree. Don't know whether he has yet.

Today I receive a call from unknown person telling me they are wanting to know exactly how much money and property is worth so they can calculate how long my father can fund a nursing home and what he could pay. So they could arrange. I didn't think they need to know that detail of information. only if you had more than 23000. I refused to tell a complete stranger and added i hadn't had a decision about chc funding yet. She said the checklist was negative. I argued then she said she would check. She also said the day meeting was only to determine needs not funding?

I just don't know what to do anymore. I think they are stressing me out more than poor old dad who just wants to go home.

Anyone else experienced any of this. Can they stop ambulance being called to i
Sick person?
Should they be asking me about how much in total my dad has to calculate what he can afford and how long he could maintain it?
Hi Jacqueline ... sorry to learn of the escalating problems you and your caree are facing.

Having read your latest posting , my gut reaction is specialist legal advice ... someone who will act for
both your interests ... you're up against more than one arm of the System here , more than most would be
out of their depths.

Someone with clout needs to step in here ... aimed with the legal knowledge to challenge where necessary.

Alternative options ?

None as far as I can see.

Others may have alternative suggestions ... time is definately not on your side.


Hi Jaqueline
No wonder you are feeling a tad stessed by all this. I agree it may be worth getting legal help re the CHC, as your father seems to be "end of life" for some purposes and not for those that matter financially.
If your father is definitely approaching End of Life what do you want for him? Do you want him home with perhaps palliative care team on hand , would he be accepted by a hospice? and if you are looking at months perhaps a care home could be an option although you may still feel it is worth the fight over funding.
Have you discussed allowing a natural death with teh consultants and have they produced an "AND" form . It sounds as though your father has passed the point of further treatment options.
I completely agree that no one has the right to be discussing or asking about your dad's finances beyond whether he has 23K in savings.It is completely none of their business and they have no right to know.
I got to a similar stage with dad where the hospital were bouncing him back home time and time again and the last time he was given a reason of admittance as being "inadequate care" for which I seething over for days if not weeks.
How can they say he is so ill but doesn't qualify for CHC?

Play ignorant about his money. Just say you don't have POA and don't have access to the information.
What you MUST do now is to keep a brief diary, of who is speaking to you, if they don't give you their name to start with, then stop the conversation until they do, and explain that you "need to write it down as you are so stressed it's difficult to remember" or any other excuse. Ask them to email you if possible, rather than phone. I always ask for emails now, as evidence!!

The only control these people have over you is the power you let them have. Don't give it to them.

They are clearly bullying you!
I have never ever heard of anyone not being able to call an ambulance.
It is outrageous.
Denise, I know this may sound very controversial but there may simply be nothing more the hospital or any medical team can do to help. If this is the way they see things then they are fighting to protect their bed spaces for those that can benefit from care.
I think the outrageous bit here is the refusal of CHC as this gentleman sounds as though he has many complex needs all beyond being treatable and clearly seems to need palliative care.
I agree totally with Henrietta. It's up to the hospital and CCCG to sort this out between them.
Hi Jacqueline_1808

I would also suggest copying your post from the beginning of this thread into an email and send it to the Carers UK helpline at advice@carersuk.org

I wish you well with taking this forward

Michael, I have often thought that CUK should have a Fighting Fund to deal with cases like this.