CHC Appeal Resolution Mtg today.

[leedsfan]

Hello everyone,

Having a resolution meeting this morning with the local CCG. This after over twelve months of utter rubbish.

Have been ignored, misinformed and lied to. Several meetings have been postponed at the last minute. I have been messed around so much.

I have everything written down, kept a diary etc.

I am now playing them at their own game. Only going to this meeting as a path to Independant Review Panel where I feel if nothing else I will have my 'day in court', and can highlight the total shambles they have made of the whole process.

Will it get me anywhere? Who knows. I just can't seem to give in to them, as exhausted as I am.

I'll let you know the outcome. Keep fighting folks if you can.

Jane

 

[sistermillicent]

Good luck, it's shambolic, still waiting since january to hear result of mums review, but as it's a review and the funding is still in place we are keeping quiet. We'll probably be hit with a huge bill, but like you have details of all the meetings they forgot about and can show them up well and truly.
Will check back here later to see how you get on so please post.

 

[jeany123]

Hello everyone,

Having a resolution meeting this morning with the local CCG. This after over twelve months of utter rubbish.

Have been ignored, misinformed and lied to. Several meetings have been postponed at the last minute. I have been messed around so much.

I have everything written down, kept a diary etc.

I am now playing them at their own game. Only going to this meeting as a path to Independant Review Panel where I feel if nothing else I will have my 'day in court', and can highlight the total shambles they have made of the whole process.

Will it get me anywhere? Who knows. I just can't seem to give in to them, as exhausted as I am.

I'll let you know the outcome. Keep fighting folks if you can.

Jane

Good luck, I hope it goes well x

 

[Cornishman]

Good luck Jane

Try to keep your script with evidence.

We were "wrong footed" by being told in advance explicitly that "no one previously involved in your mother's case will attend", only to walk in to find the nurse assessor (who had written so much untrue about mum in order to get her CHC taken away) sitting in the room. The nurse assessor then proceeded to undermine everything we said to the approving nods of the other panel members, including the Chair (her immediate boss!), even though it was compelling evidence based on CH and GP records.

On the really important points like their terrible lack of process (taking a year from assessment to decision - the framework says 28 days), they just "moved on", as they wanted to get into the minutiae of the DST where they could use management speak and where we challenged the DST narrative we were told, in effect, we didn't know what we were talking about as they were healthcare professionals, and we weren't.

So for example, the nurse assessor said she "chatted" with mum, but mum hadn't had the cognitive ability to understand for over 5 years and hadn't said a coherent sentence for longer than that. When we challenged that, the other panel members all rounded on us, saying they all knew it meant that the assessor had just talked at mum, with no tangible response. But of course, that's not what the DST described, in order to mislead the panel. The DST was never changed - the minutes were a better work of fiction than the DST itself and possibly Shakespeare.

I'm sure you can give a good account of the situation, but as you rightly say, it might just be a stepping stone on the way to IRP.

Keep calm and very good luck.

Best wishes

PS - we were later criticised by the IRP by not going to a resolution panel, because we thought it would be a total waste of time, given the CCG's previous bullying and arrogance. It was the only criticism the IRP made of anyone, including the CCG who had made such a shambles of the assessment process and despite the CCG ignoring much of the evidence to suit the outcome (no CHC) they wanted. So you're doing the right thing by going, even if you think it's a formality.

 

[lin1]

Sock it to them. Good luck and hope it goes well.

 

[geum123]

Good luck Jane.

Of course it shouldn't be down to luck...............

 

[leedsfan]

Hi everyone,

Thanks for your good wishes.

This meeting has been postponed twice now. The first reason being a lack of staff to attend, the next there was no one to take the minutes!

Arrived with my husband in toe for support to be told that they'd had to change one of the people attending as someone has rung in sick. So two CCG staff, but still no body to take the minutes. But, we decided to plow on.

The lead nurse was very polite. I have never met her, this is the first time she has been involved with Dads case. The other member of staff was an admin manager!

The meeting lasted one hour. I remained calm and in control throughout. We did not go through every domain. I stuck to my guns and said I still disagreed with 5 of the 12 domains. I told them straight from the start I would be going to IRP and further if need be.

I was then asked if it was ok with me could they have another look at the DST report in an urgent panel meeting, which they assured me would take place within a week.

Now I don't know about you, but after all the muck the CCG have thrown in my direction, I really am not sure what all of this about. The cynic in me says they are just playing for time thinking I'll get fed up, plus they really don't want me telling the IRP about the mess they have made. But, I try to see good in people and they seemed like they really were going to re-examine. Like Cornishman says I have played their game and gone along with this meeting, but only because I didn't want the IRP to think I hadn't given them a chance to sort things out.

I believe that the original nurse assessor, way back in December 2013, made an error of judgement, based on flimsy CH reports.Having said that she was totally unprofessional, aggressive and bullying. I am a fair person, but by God I will stand up and scream from the rooftops if anyone tries to pull the wool over my eyes again. I have had enough. Watch this space folks.

Jane

 

[Cornishman]

Well done Jane.

Sounds like you've done the best you could today.

Keep marching forward to the next step.

 

[sistermillicent]

not able to get on here yesterday pm, am watching this space, Jane. I think you could be right that they don't want to be embarrassed but also maybe they really do feel you are right...I am amazed they can get the panel to sit so close to Christmas.

 

[leedsfan]

not able to get on here yesterday pm, am watching this space, Jane. I think you could be right that they don't want to be embarrassed but also maybe they really do feel you are right...I am amazed they can get the panel to sit so close to Christmas.

Hello Sister Millicent,

I have a feeling from what they were saying that the panel usually sit every week, but they can convene very quickly if needs be.

One of my main complaints was that they have constantly left me out of any important correspondence, hence all of the delays and confusion. I have POA for Dad, I have been involved as much as possible, and if I haven't got my Dads best interest at heart I don't know who has, but still they insist on sending Dad all the correspondence and the Nursing Home have either simply filed things away, assuming I have had my own copy, and things have gone missing. Quite often I have gleaned information from a throw away comment made by a care assistant or one of the nurses, even the admin staff have now started to show me things and ask if I have had my own copy.

Just last week I was expecting a letter from them regarding confirmation of Dads recent CHC DST result. It didn't arrive, I left it a couple of days, Christmas post and all that, still nothing. I rang them, they said it's been sent out. Next day I had to phone them again as no post. They promised me it had definately been sent to me.

As I was due to actually go their offices for the resolution meeting just the day after I left it and thought I'd bring it up there. They said they would look into it after I'd left. Sure enough, knock on the door from postman yesterday. A 'special delivery' letter to be signed for.

In it was a letter thanking me for attending the resolution meeting, and at last a copy of the letter I had been waiting for. This was not addressed to me , but my Dad at the nursing home and had been sent out to him 9 days earlier. There had obviously never been a letter for me!

The cost of sending this long awaited information, consisting of two peices of A4 paper.
£6.15 and they say the NHS is in financial meltdown.

I would love to think that someone from the government has a sneeky peek on here, I would imagine the CCG's have a look, to see that somebody really does have to get a grip. I have been careful to never name names on here, don't want to risk a slap on the wrist from the Mods., but also I have worried that I could be identified. But you know what in the words of Rhett Butler "frankly my dear I don't give a damn"!

Will let you know IF i hear anything from their extraordinary panel.

Jane

 

[sistermillicent]

How simple it would be if they just took notice of what you had told them. I thought from our experience that panels sat every six months or so. I am amazed that it is as often as you say.
I don't know what's the matter with the care system.
Glad you got the letter though.

 

[fr0d0]

Well done Jane! Keep on truckin!

 

[leedsfan]

Thank you everyone once again for your support and kind comments.

As I have said previously it is a bittersweet victory as my Dad is so poorly. It still seems incredible to me that there was any argument in the first place.

I will keep posting whenever I hear anything. Should be this week sometime, but I'm not holding my breathe after all the setbacks and delays, some I feel were a deliberate tactic to try and get me to give in. I started the whole process believing that I would be fairly treated, and that dad would surely get the funding he so deserved. Well, now I'm afraid it's no more Mrs Niceguy! I go into meetings in a calm but determined way and I always have my 'evidence' at the ready. I have spent hours and hours pouring over anything I could get my hands on, especially other peoples account of their own experience here on on TP.

I am lucky I have the time to do this, I have great support from my husband. He has been by my side throughout, but I know he worries about the toll it has taken on my own health.

I often think about all the people who are having the same battle, sometimes lasting years. I am just coming up to one year (18/12). I never could have imagined how long and difficult it has been. I don't want to put anyone off though, it CAN be done, and I will not give up, and I will keep truckin' FrOdO.

Jane

 

[Brogues]

Just in case anyone fromt he powers that be does look in

Our experience has been IDENTICAL

meeting pulled last minute

nurse assesor saying she didnt have a document which they now accept they do have but only after we had to make a FREEDOM of INFORMATION request as we were being ignored

that freedome of information request was the first time we saw mums DST done un july 2013 and only came to us end of OCt 2014

We have been lied to my details have been used to be STALKED online my linkd in emailed me with a CHC assesor looking me up at the time he wrote to tell me the pannel had turned mum down

we were told mum would go before a pannel several times

then the HEAD of comissioning has written to confrim mums case NEVER has!!!!!!

shocking stressful and has made me very ill

i hope someone steps in and does something about this travesty

 

[leedsfan]

Hello Brogues,

That is the trouble with the whole process. You may win but at what cost to your own health? I am sorry your have been made to go to such extraordinary lengths to get the truth, and that it has made you ill. I can totally understand your frustration.

Coming on here to check in to see how other people are going on is one of the things that has kept me sane. But look at the time? I am unable to sleep again been awake since 3.30am. Although I go to see my Dad everyday, I haven't seen him awake for days now. Going to phone before I go today and make sure he's up, it's only a ten minute drive so hopefully I'll catch him. But even then if he's awake quite often he is upset or agitated or drugged up to the eyeballs (Risperidone). Poor love, it is knotting me up watching him very slowly decline.

The panel are conveneing some time this week. Maybe I'll get some good news and a big dollop of justice. You never know!

Take care.
Jane

 

[Brogues]

I hope so Jane

Mum is on Respiridone too so I understand the sleepyness

 

[Saffie]

A full DST assessment for my husband was cancelled by the CHC team at the last moment at the beginning of May and there had been no mention of a replacement date before my husband died in June.

After waiting months with no contact from the CHC, I rang them to ask if they were aware he had passed away and what happened in the circumstances.
I was told that I should have received a letter of condolence from them -I didn't, no surprise - and that the application would shortly go before a panel and I would be told of the outcome. I wasn't hopeful as I wouldn't be able to be there to fight my husband's corner with all the evidence I had.

Needless to say, I have heard nothing since and, although unsure of the exact date I rang, know it was some months ago.
(I mentioned it on TP so will have to search for the date.)
Would they even have considerd it if I hadn't phoned? I doubt it.
I certainly had no hopes of it being passed despite my husband's precarious state of health.

The application was made in September 2012, Checklist passed in September 2013 and, as I've mentioned above Full DST assessment to be held in May but when I rang to tell them out of courtesy that my daughter would be attending with me, I was informed it had been cancelled. The nursing home wasn't even informed of this either.

I'm sure they hope that such applications and their applicants will just disappear.
I have done so as other matters have occupied my over the past 6 months.
However, I will be writing to them once Christmas is over and hope to be able to carry things through, or at least complain about their sheer lack of courtesy, professionalism and legal duty.

I may fall at a hurdle along the way as it is exhausting battling such an uphill struggle but the system is so very flawed and I hate the thought of just giving in after all the hard work, research and preparation I did for the arranged date in May.
Sadly, I am nowhere near as up to speed now.

Good luck to all who are going through this process now and are finding themselves beaten back on all fronts.

 

[leedsfan]

Hello Saffie,

It really is rotten that you have been treated so badly. I have written on here about my own experience with my local CCG and their total lack of courtesy and professionalism. In the end I was so fed up I contacted my MP. Within two days a senior nurse from the CCG telephoned me to apologise for leaving me out of any correspondence and ignoring my letter which I had written to them months earlier and that they had scanned onto their system but not done anything about it. It was a letter of complaint and appeal against a refusal for funding in Dec 2013.

I have since managed to get funding for my Dad through long hours spent pouring over my old laptop, devouring the National Framework and collating all the evidence from my own daily diary, and being calm but bloody-minded at the DST. This funding is from Nov 2014. I am still fighting for the refusal from Dec 2013. They tell me they are having an urgent panel meeting this week, after I attended a resolution meeting last week and told them I would be going all the way with my appeal to IRP, SHA Ombudsman and beyond. This will give me the opportunity to highlight the flawed and unjust system that is denying elderly, vunerable, sick people what they are entitled to. Obviously it will also highlight the total mess the local CCG have made and this I feel is the reason for their urgent meeting, that or, they are dangling me like a puppet again!

Can't wait for the letter. Husband says IF I hear from them this week it will be the usual Saturday 'bad news' post. They do this so you can't get back at 'em until Monday, we are becoming such cynics is this house. Ha ha.

Let you know when I hear anything.

Jane

 

[Brogues]

Yes they like to dump the bad news on Saturday xx

I'm going to pm you Leeds fan hope thats ok xx