Totally stressed and bewildered and perplexed

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

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.

Problem is BB … just how many " Fighting Funds " are needed … when the only solution is for legal action to be taken …
either enforcing those so called " Rights " enshrined in law or … to challenge unjust restrictions … such as eligibilty
to claim CA in the first place ?

( Probably more than a dozen on our own Lord Kitch which can only be rectified by either a change in Government policy or a successful challenge in a Court of Law … some more than 40 years old !!! )

There again , CUK is a charity … I would summise that taking on or supporting legal action ( Beyond unpublisised encouragement
… shades of 2009 and CarerWatch ) would put them on a collision course with the Charity Commissioners ( Who may , in turn ,
be influenced by whatever the Government had to say … either publically or " Off the record " ).

At times , being a charity has it’s … advantages ?
( Chasms DG … what carers need and what CUK can delivery … bullets / sticking plaster analogy. )


Our thoughts are with our fellow carer , Jacqueline … and her struggle against the unyielding System !

Thankyou to all of you for your advise.

Just to update- Dad is still in hospital, but after a tremdous argument, and heaps of pressure. A micricle has occured. Not only is dad to be let out back home. But…

After I was put through a rushed DST CHC meeting at the hospital, which he was scored a few highs and moderates and told the recommendation was 24 hour care. Which they added as we are self funded the DST tool was scored negatively. But of course a number of highs or moderate would indicate a primary healthcare need, that’s according to their own rules. The NHS would have to pay for some care, whether at home or in a home.

But they stated it is because he is self funded he would have to pay for all his care. Anyway- Funny The day after the declare my father doesn’t have parkinsons anymore after being treated for 20 years and stop his medication - very nearly killing him in the process! Not only that they now say the breathlessness is totally due to his pacemaker which is failing and that they will replace sometime, but according to my father they cancelled it as it was going to happen while he was in the hospital! It is No longer the pulmonary fibrosis which he has been acutely ill with, and of course still has! Yet only a few weeks ago I was told was terminal. But the doctor is now playing it down, saying scarring is old. So what was the morphine all about then? Also they are now suggesting because dad isn’t eatting much they will be able to stop his insulin, thus his diabetes is cured! therefore he doesn’t have any health needs. So the district nurse may or may not be calling on him!. Yay go NHS! Because he said they are trying to kill him off and he will take his chances at home. They now say he is depressed?

So now he comes home, after six months in the riduculas hospital system, that has bounced him around to avoid paying for any care or doing a CHC checklist. They have done nothing to help. In fact i feel have made things worst. I am a nervous reck and dad well, he has lost so much weight jus skin and bone now, it is so obvious he is really ill. They have had to admit they can’t stop an ambulance from taking him back. So what was all that about. I was in the meeting when it was stated and at the bedside when the doctor stated as well. But really. Words don’t explain how I feel. Totally abandoned, betrayed and unwell.

He lives alone, He is beddridden, he is very ill and what’s more they have made me ill with the stress. No carers, No mediacation. Not even a hospital bed or a frame to prop him up in bed. Just a letter given to him apparently giving him 2-5 days to get out. Don’t know how he can’t walk or stand up! So here I am frantically making equipment purchases, so I can make him as comfortable as I can at home, until he dies a horrible death.

God bless them all! I don’t think I ever want to get old, disabled or go to hospital or the doctors ever.

Better news Jacqueline !


After I was put through a rushed DST CHC meeting at the hospital, which he was scored a few highs and moderates and told the recommendation was 24 hour care. Which they added as we are self funded the DST tool was scored negatively. But of course a number of highs or moderate would indicate a primary healthcare need, that’s according to their own rules. The NHS would have to pay for some care, whether at home or in a home.

On the CHC front , NO TOP UP FEES !

( I assume CHC and NOT NHS Nursing funded Care ??? )

Main thread … follow the colour :


Asked to pay " Top up " fees when receiving CHC or NHS Continuing Healthcare ?

In a word , DON’T !!!

Should You Be Asked To Pay an NHS Continuing Healthcare “Top-Up” ?
With a loved one living in a residential or nursing home will probably be familiar with the concept of top-up fees. These are third-party payments which bridge the gap between the cost of care home fees and the amount the local authority is willing to pay. They are so common that the charity Independent Age calls them a “secret subsidy” propping up the residential care system. So you may not be surprised if a social or healthcare professional asks you for an NHS Continuing Healthcare “top-up” to help meet the costs of care. But here are some things you should know before you agree.

There is no such thing as an NHS Continuing Healthcare “top-up”
While the legislation governing local authority social care expressly provides for “topping up” care fees (though only in specific circumstances), the NHS are not permitted to ask for an NHS Continuing Healthcare “top-up” for assessed needs. The only way you can “top up” an NHS Continuing Healthcare package is if you choose to pay for additional private services. These are over and above services to meet your full needs as set out in your care plan. They should be provided by different staff and preferably in a different setting, though there should be liaison where necessary to ensure continuity of care.

What do the rules on NHS Continuing Healthcare say about covering the cost of care ?

The National Framework says the funding package should be sufficient to meet all needs in the care plan. The CCG should base this on its knowledge of the local costs of services for those needs. It is also important that the models of support and the provider used are appropriate to the individual’s needs. And they should have the confidence of the person receiving the services.

So why is one in five recipients paying an NHS Continuing Healthcare top-up ?
Yes that’s right – one in five. According to Continuing to Care?, a major report released before Christmas by the Continuing Healthcare Alliance, almost 20% of those awarded NHS Continuing Healthcare said the funding did not cover the full costs of their care, resulting in them having to pay “top-up” fees. This fits in with what we are hearing from clients here at Just Caring Legal.

Could social workers be blurring the lines between local authority and NHS Continuing Healthcare “top-ups” ?
We are hearing of an increasing number of cases in which social workers are taking the main role in dealing with NHS Continuing Healthcare cases. Could this be blurring the lines between NHS and local authority funding? It can be difficult for those applying for NHS Continuing Healthcare to understand the different rules that apply to each, around areas such as top-up fees. It is right that social workers play a vital role in NHS Continuing Healthcare cases as part of a multi-disciplinary team of professionals assessing care needs. But once eligibility is established for NHS Continuing Healthcare, like all NHS care it is designed to be free at the point of use.

This is one of the founding principles of our NHS and its constitution: that it should provide a comprehensive service, available to all based on clinical need – not on the ability to pay.

CHC at Home ?


Main thread again.

Extremely quiet on this forum … given time , others will be along to express their views / opinions / guidance.

I think I am going mad now.

Got the letter which clearly tells us dad is being discharged 23 feb. It also states we have to make arrangements but if we need longer they will put in temporary . It also states dst review will take place in the community.
Now told a hospital bed is going to be delivered friday to my dads house. So all set for his return. Which when I saw h yesterday he was excited about being able to go home.

Today my daughter asked about this dst review as we had already inform we would appeal a decision of no eligibility. Which we had been told was the case verbally. We received a call from discharge nurse telling us they dont have the paperwork from the dst meeting I attended 31 jan. In fact he was partly funded. But because he wants to go home. We dont get. But they are holding a big meeting next wednesday on the ward as they believe his discharge home would fail. We say he will not be there you have told us to get out. Apparently is isnt discharge even though thats what it says and he isnt being discharged.
Dad is going to be so disappointed and angry

They have also said if they say he needs to go to a care home against his wishes. That is what is going to happen.and I think we have to pay because they state he is only partly eligible.

I just despare. He is going to die. They dont want him in hospital, yet they change there mind about him going home as he will be sent back. That will happen even from care home. Its stupid. They have got themselves into a right pickle.

How can they give 87 year old seriously ill person notice in writing they are being kicked out, then change their minds. Its emotional abuse.

Contact the PALS service at the hospital. They should be able to help you make sense of what is going on. They should also tell you the complaints procedure, should you need it.

This muddled information is not helping you or Dad, explain that to Pals and ask for their support.


So the storey has come to an end today. My dad passed away in the hospital earlier this evening. He went peacefully an d i was lucky to be there for him until the end. I have found the discharge team to be absolutely ridulas. Even when it was obvious he was dying, they served miinute of their stupid meeting telling me he was medical fit for discharge and the discharge nurse was emailing us demanding we employed carers. Do these people have no bounds. she was say at the desk directly opposite where he was.

Are they just plain stupid. I will never forget or forgiven for the amount of stress they have put us under. As for chc funding. Oh my god. My dad had the last laugh. He said my money is safe, The nh s were forced to fund his care for the past six months as he Has been in hospital, because the way there stupid system works. Is they wanted him out but in the other hand they didn’t cause it was unsafe discharge. If only they had fast tracked him when I asked. The only regret is I know my father wanted to come home to die, in the peace and quite of his home. Not behind a curtain on a busy and nosey ward. They didn’t even find a side room for any privacy.

God bless them all.

Hello Jacqueline,

I’m sorry to hear that dad has died, he is at peace now. I know what a battle the last few months have been, and all the formalities that are to come. For the next few days, just concentrate on what MUST be done that day - I had a lever arch file with things in order of importance, and aimed to deal with just one thing a day. It was all I could cope with.

Lots of us here have walked the road you are walking. Feel free to ask us ANYTHING you want to know.

After the funeral, you can decide about the CHC refusal etc. Keep all the paperwork, but for now, put it to one side. Today is a day to pause and be kind to yourself.

I’m really sorry to hear of your dad’s passing Jacqueline. Wishing you all the best during this difficult time

So sorry to read your news Jacqueline.
I have only recently lost my father in the past few days so know what a difficult time it can be.I hope you have support from your family.

Oh Jacqueline :cry:
So sorry to hear that. Dad may not have passed away at home, but he went knowing he had one of the finest daughters a man could wish for.

You may wish to pick up the battle for justice again, but only when you are ready. Bereavement plays havoc with emotions so expect a bit of a roller coaster and above all, be kind to yourself

We will be here for you, always