Continuing Health Care - Preparing to fight PCT's decision

Savvy_Sue

Welcome, Racoulter, and I am so sorry for your loss, and the difficulty you have had over the last year in fighting for your Dad.

You are worn out, so please be kind to yourself. The grieving will come when it comes: let it, and don't let anyone tell you what you should or should not be feeling.

monkeyspanner

Racoulter200752 wrote: »

My father was taken into a rehab hospital on 12th May last year and discharged to a nursing home on 22nd June.. He was admitted twice to hopital, in August and November. He was fast tracked on Dec 12th for full payment of his fees. He died on 27th December. It has taken from last June to this week to persuade the authorities he had a primary health need which was complex and unpredictable. They have now agreed to fund him from last June.

If you are in a similar situation I recommend you have POA and get hold of all your loved one's medical notes and research their conditions on the internet. It has been the most awful time for me. Not only did I watch my father dying but I had friends who suggested that, "this was life" and I should accept the system.

Since December I have not been able to grieve. Even my husband, who is a GP, did not think I should take it so far. I have cried many tears but now someone has listened and I will now receive reimbursement of his fees.

For those of you still struggling - keep at it. However, I just can't feel I can celebrate as I am worn out by the whole situation,

Thanks for posting your experience. The worst aspect of this system is the extent to which the PCT's will try to avoid what is their legal obligation. The struggle for relatives often comes at a time when their efforts would normally be concetrated on supporting their ailing relative but are cruelly diverted to fighting authority. I often wonder how much money is spent by the NHS resisting applications for CHC funding compared with the actual expediture on care. If you feel able pleasedo contribute to the thread to help others in a similar situation.

woolly_wombat

I am very sorry for you loss Racoulter, and also to hear that you have not had the support from your family that you needed at such a difficult time. Well done for obtaining the NHS CHC to which your Dad was entitled.

I lost my Mum just over two weeks ago. In the end she spent only two and a half weeks in a nursing home because it took so long to get CHC. The first time she was sent to the home they had to send her back to hospital because they weren't ready for her - the ward sister had not even had the courtesy to ring before putting her in the ambulance. The discharge coordinator was absolutely furious that such a vulnerable patient had been treated with so little consideration, and made quite sure that the consultant was informed.

The treatment that my Mum received in the nursing home was amazing. They were just so professional and so very kind, in stark contrast to the appalling NHS nursing 'care' that she endured beforehand.

I know that patient confidentiality is now a very big issue in the NHS, but sometimes it seems like a very convenient excuse to exclude members of the family.

My sister and I applied for LPA for Mum but the forms arrived back five days after she passed away.

I don't know what I would have done without the support I have received - from my sister, from the social worker daughter of my friend (who told me to apply for CHC and not to be fobbed off), and from this board.

Thank you all very much, and especially to monkeyspanner for sharing all your hard won experience of obtaining CHC.

Katykat

Hi Racoulter, I know you have posted on the CHC forum but I wanted to say that I too have won funding for my mum who also died a couple of months ago. Like you, I have had a very hard fight and I could have done without it as it took over my life. Even when I visited mum I was always on tenterhooks looking for things that I could use in my fight. ALso like you, some of my family, although supporting me did not have my strength of conviction. My fight lasted almost 4 yrs & I suppose now I'll have to fight for full refund because I know they wont want to reimburse the shortfall I had to take when I sold her house. There are no winners here because like you, I should be jumping for joy, but I cant, I just feel an empty victory.

Savvy_Sue

Moneybox had a bit about care home fees in yesterday's programme, repeated tonight 9 pm.

You may be able to Listen again already.

This is a link to a Have your say page.

Errata

Over the years there has been report after review after report on care of the elderly and they pretty much all say the same thing about its inadequacies.
Student fees increase and we have rioting in the streets. Libraries are threatened with closure and there are demonstrations and protests.
Care of the elderly barely causes a ripple amongst the populaton. Is that because those elderly poeople receiving care have a very small voice which is hardly heard, or is it because those who don't need care believe they will never need it and so whatever inadequacies exist don't and won't affect them so they couldn't care less?
It's often said the country gets the health service it wants; perhaps it also gets the care of the elderly it wants?

monkeyspanner

The Who "My Generation"

People try to put us d-down (Talkin' 'bout my generation)
Just because we get around (Talkin' 'bout my generation)
Things they do look awful c-c-cold (Talkin' 'bout my generation)
I hope I die before I get old (Talkin' 'bout my generation)

This is my generation
This is my generation, baby

Why don't you all f-fade away (Talkin' 'bout my generation)
And don't try to dig what we all s-s-say (Talkin' 'bout my generation)
I'm not trying to cause a big s-s-sensation (Talkin' 'bout my generation)
I'm just talkin' 'bout my g-g-g-generation (Talkin' 'bout my generation)

This is my generation
This is my generation, baby

Why don't you all f-fade away (Talkin' 'bout my generation)
And don't try to d-dig what we all s-s-say (Talkin' 'bout my generation)
I'm not trying to cause a b-big s-s-sensation (Talkin' 'bout my generation)
I'm just talkin' 'bout my g-g-generation (Talkin' 'bout my generation)

This is my generation
This is my generation, baby

People try to put us d-down (Talkin' 'bout my generation)
Just because we g-g-get around (Talkin' 'bout my generation)
Things they do look awful c-c-cold (Talkin' 'bout my generation)
Yeah, I hope I die before I get old (Talkin' 'bout my generation)

This is my generation
This is my generation, baby

So true when I was 18 equally true now I am looking down the barrel of old age.

atoneswitsend

Hi everyone.
Late last year I thought I had solved the problems for my SIL when she was granted CHC funding. She is being cared for at home by 2 live in carers. (90% paralysed, skin integrity problems, doubly incontinent, PEG fed. confused etc after massive stroke). The carers are provided by an agency who are paid by the PCT .
The girls we have are fantastic. That unfortunately cannot now be said about the agency who tell me that I have no say in the matter now that the PCT and paying them.
I find this surprising but have no knowledge of my rights on the part of my SIL. I either want to change agency but am worried what effect this may have on my SILs entitlement or even if I have the right to do this on her behalf.
I would also consider employing the carers directly but again do not know how this would affect her entitlement or how the PCT would view this.
My reasons for any such action is due to the lack of trust with an agency I admit I originally appointed but over time I have found to be less than honest, trustworthy or now interested in my SILs care. This is not the case for the girls who are extremelt caring and attentive.
So my position is rather different in that I was successful in my fight but now want to change the caring agency who are being paid by the PCT.
Can I do this? If so how can I do this?
Is the agency correct in that I have no say in this matter?
This is the ending of my SILs life and I had hoped they would be spent at home surrounded by her family and with the care she needs. I am now engaged in a different battle and need guidance on how to advance. HELP

monkeyspanner

Loads of issues here:
- The first is how you stand regarding authority to manage your SIL care. This will depend on if you have a power of attorney and/or if your SIL has mental capacity.
- I guess that the agency is asserting you have no say because they are assuming their contract is with the PCT who are paying them direct. I think I would contact the PCT and outline your concerns about the agency and see if the issues can be addressed by them. It may be as simple as the PCT instructing the agency to take day to day instructions from you as your SILs legal/family representative. Otherwise you may have to ask the PCT about changing agencies, but this of course would probably mean new carers which I assume you would be reluctant to do. I would have thought that the PCT would prefer not to get involved in day to day issues. I suspect it is convenient for the agency to use this smokescreen as they know the PCT will be hands-off and they can do as they please if they can avoid family intervention.
- The agency presumeably employ the carers on contract and cream off an agency fee. It is likely that embedded in the carers contract is a clause to prevent them being employed direct by clients if they have previously cared for the client via the agency (these clauses are usually time limited). These clauses are notoriously difficult to defend in court because the employee can claim "restraint of trade" (I think that is the term). Essentially this means that the carer would claim that the agency is preventing them from earning a living. But it is unlikely that the carer would wish to do this as they may well need the agency goodwill to obtain any future position. Also you would need to explore if the PCT would be willing to allow you to employ direct. You would also need to consider the legal, tax and insurance requirements of you employing carers and other issues such as relief staff for holidays and sickness.

If it was me the first stop would be the PCT. I hope this helps

atoneswitsend

Thank you Monkeyspanner
Yes I have POA but it only relates to financial matters and I am not sure this will be acceptable in such circumstances. When originally granted there was no thought of my SIL deterioration of health only her ability to oversee her finances.
My first thought was to go straight to the PCT and discuss the matter with them. What has placed me in a dilemma are the comments made by the agency but then would the PCT use this to back track on their decision to fund and make us go through the whole procedure again. This is what concerns me.
There is no doubt a condition within the "employment" contract as you describe. However part of the problem is the manner the agency are treating their "employees" which would be brought to the table in the unlikely event of an action. The girls themselves would I am sure be more than happy to jump ship in the knowledge they would be better treated. I do not know of anyone else doing this whilst being CHC funded. Maybe someone else on this forum knows.
I am referring the question of employment implications to my accountant but he does not know the answer to initial concerns.
So I am in a quandry. I could do nothing and go along with the present siuation but I can see that the girls would leave because of their "employers" lack of care. Also I for a number of reasons no longer trust the agency.
Alternatively I can go to the PCT to change and endanger my SILs care.
As far as I know none of the online documents cover such a situation although I cannot believe it has not happened before. Maybe someone can tell me if this has happened to them.