Ok...someone talk me down...turns out that the CHC fast track application was sent to Staffs CHC from Telford hospital on 11th. During the following week we were told (repeatedly) that funding was absolutely guaranteed and not to worry. There was no doubt dad would be approved. Half way through the week I was told the CHC wanted more information and the Discharge team would call me to discuss. No call materialised. Saturday I met with Clinical Site Manager - she looked in his notes and said Fastrack was approved on 11th. All done. Just waiting for care package.
So this morning I called CCG. They'd never heard of my dad. Further investigations from PALS revealed that the application had been sent on 11th in zipped format for security with a note for the CCG to ask for the password. No one asked, and no one chased it. So as of today, it hadn't been even looked at.
After screaming and shouting at the discharge team, they got on the phone to the CCG and went through the paper work, which, I am assured by PALS is very comprehensive with a letter from the Palliative consultant to say no doubt dad should be fast tracked. In his notes it gives him about two months of life left, and confirms he is in end stages of PSP.
Just got a call back from PALS manager - he's been refused. They say his needs are no more than social needs and it's being referred back to social services who will START to look for care package.
I can't tell you how devastated I am. He's going to be stuck in hospital for ages now and possibly won't make it home in time. To top it all, my email isn't working and I can't send the PALS manager the Dept of Health document I'm looking at right now that confirms funding must be granted under fast track. I want to scream and throw something heavy. I will be doing formal complaint at highest level and will be given full support of PALS and complaints manager at hospital , but right now, I just want to get my dad home...
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sasmock
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Write to the CCG making a complaint about their appalling time scales, ask for their decision and the evidence for it in writing urgently given time scales.
Copy it in to your MP and be sure to say in your letter that you have done this.
Write to your MP explaining the situation and ask for them to act on your behalf as a matter of urgency. Be sure to tell the MP that the hospital passed the Fast Track and fully support your case.
Contact Beacon NHS and get their advise. Again stress urgency. You might also decide to throw a few hundred quid at the proble and bet Beacon to advoicate for you. Their rates are low.
Agree with Kevin!! SCREAM!! LOUDLY!! At Beacon, national newspapers, local mp! Give it everything you got!! No holes barred!! Don't stand for anymore shit, enough is enough!! Hugest hugs ❤️ X
Hi Kevin, as always, thank you for being the calm voice of reason. I've just looked at writing a complaint to the CCG and I'm getting an address in West Mids, a B70 postcode. Should I address my letter to the Staffs CCG asking for evidence of their decision, then write a separate letter to their complaints department? Sorry for maybe asking the obvious, my brain is fried right now.
I've also looked up the Dept of Health document "Fast Track Pathway Tool for NHS Continuing Healthcare" and on page 6 it states
12.A CCG upon receipt of a completed Fast Track Pathway Tool, must decide that a person is eligible for NHS Continuing Healthcare. Therefore, where a recommendation is made for an urgent package of care via the fast-track process, this should be accepted and actioned immediately by a CCG.
Yet when I complained to the CCG Manager this afternoon about the Discharge Liaison Officer assuring me we would get funding before the application had even gone in, she said that things have changed in the last two months. It used to be taken as granted that funding would be approved just with a letter from a consultant, and now it's much more difficult to get. Yet I can't find anything in the Govt guide lines to suggest this is the case.
I'll call Beacon in the morning and see what they say.
You are correct in what you say. The CCG seems not to be complying with the law.
Remember the CCG is also the paymaster of the hospital.
Here it is line by line:
Complaint letter to include the following:
Unacceptably slow response and failed to open the zip file. Also that you want the case reviewing and that you will provide further evidence in due course. (Don't try to evidence it right now - you are merely lighting a fire under their wagon here).
That you are referring the case both to your M.P. and to a ,"legal advocate." Again don't go into more detail just yet.
Finally that you 'require' a timely response giving their decision and the evidence on which it is based. This is the language they use and they know full well what you mean by that phrase. Think courts... everything has to be argued and justified and they must do that just the same and they are obliged to explain it all to you.
Contact your. M.P. send a copy of the letter and another letter (best an email) saying that the Hospital gave you their full support and that the CCG seems not to be complying with the law. You don't need to go into it further the M.P, should fire a letter off to them asking for a detailed explanation. Technically the letter is from the Minister of Health... Trust me tyou would love to see the panic as the M.P.'s letter is escalated to the top and internal explanations sought in detail from all staff involved. M.P. enquiries are very powerful.
Next contact Beacon. They give you an hours advice free at the end of it I would commission them to take your case on. Depending what they say.
Come back to me after Beacon if you want. You need these allies right now.
Tell ccg you are going to your MP any way and the Press and local TV it rattles them .Tell them you are also writing to the chair of the Commans Select Health Committee
Shocked speechless. What an appalling way to treat people. I think I might think of publicity. The cost and waste of all this - monetary and morally - is ridiculous.
I know all you want is to spend the time you have left in peace with your dad.
Thinking about you, feeling really sad that these people are so cold hearted, it would be amazing for your dad to come home and spend his final months, in his own home. Big hug stay strong we are all right behind you. Yvonne xxxx
We applied for fast track funding in February, I'm sorry to have to tell you that it wasn't approved until August!!
I complained to the CEO of the health care trust. Ring yours and get the complaint rolling, forget PALS.
In the end I said I would be going to the media (both local and National), and I kid you not, I was asked to wait a couple of hours, and within that time CHC rang back and suddenly we had a package.
Having been told that they did not receive the paperwork until July, I had a letter from the CEO, Who apologised and stated there had been a failing in Management, and that they had received the application in March, and would reimburse me back to March 28th.
I am still waiting for the reimbursement, but will be dealing with that today.
I had August's money mid August but received September's 31 August.
Please don't wait as long a we did. G couldn't understand why I was getting so frustrated and depressed with it all, but then I hadn't told her I'd applied for fast track as it was unlikely that she would live until the end of the year.
I am very cross that CHC has taken so much of my time, which I should have been spending with G.
In the end I also demanded that I receive a personal budget for th CHC, so I can choose exactly who we want to provide care. The CHC team tried to tell me that it was not possible to have that, and if I did then the Carer's would have to be a registered company. This in fact was TOTAL RUBBISH, you can have who you want as long as a) the money is spent carer/Carer's and nothing else, and b) you get invoices and receipts for payment.
I still intend to contact the media, this shouldn't be happening, and I do wonder if they make it difficult to put people off.
DONT GIVE UP!
If you or anyone else here want more info or if I can help in anyway, please just ask.
Thank you so much for taking the time to write all that detail. I just made a note of it all, whilst on the phone to Beacon, who confirmed what Kevin has already said - this is unlawful.
I just called the CCG and asked for their reasons for refusal - they told me to hold on a minute...lots of ruffling of papers....then said that senior management have overturned the refusal and have said that they will change the way they do things from now on!!
This is a bit of a rollercoaster....I had just put the finishing touches to all my letters of complaint....!
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