I am cross, no more than cross , I am furious ,incandescent with rage , boiling mad spitting feathers - today I contacted the CCG with regard to our assessment - it allegedly went before the panel over 4weeks ago and we have heard nothing . I e-mailed the nurse who did the assessment last week and she sent an urgent e-mail to the CCG requesting information and got no response so I phoned today . The first person I spoke to asked for a reference number for the assessment and I said we hadn't got one as they have not sent us any communication since we had the assessment done at the start of September . Anyway she looked up on the computer and said she would put me through to the person dealing with V's case . She came back to me and said that this person was on the phone but would call me back . Did she - hell no she didn't . So after lunch I telephoned again and asked to be put through to one Angela Rickard who is titled Officer to the Panel . This is the panel which is supposed to say yes or no . She informed me she didn't get involved in assessments . That's the point my patience ran out and I told her what a half baked total waste of space their organisation was . That they didn't keep people informed , didn't stick to their own guidelines with regard to time schedules , didn't have the courtesy to return phone calls that the whole system was totally ludicrous because by the time anyone came to a decision then it would be already six months out of date which was about as useful as a slap in the face with a wet kipper . She then said they were very busy - cue for hitting the roof - what did she think I was , my wife is half blind doubly incontinent , has dementia can't swallow without choking and has to be fed every meal with a teaspoon and has to be hoisted round the room on a sling from the ceiling - if she thought she was busy what did she think I was , I pointed out that I had been caring for my wife for nearly three years 24/7 365 days a year with no real break , would she care to swap ? She then said she believed V's assessment was with the qualitative control nurse and she would get her to phone me . NO I ,said give me her name and I will phone her > No ,I was told she couldn't do that but assured me she would get her to phone . I then informed her that I have already written to Dr Sarah Wolleston the MP for Totnes who is also Chair of the Common's Select Committee on health `asking her and her committee to investigate the nonsense that is CHC funding. And that if I didn't get a call back I would be getting my MP involved and also firing off a letter to Jeremy Hunt the minister for health quoting chapter and verse about their incompetence , procrastination and what appears to be a deliberate policy to discourage people claiming CHC funding . Also that it would appear to be the case that if someone is in hospital then things can happen very fast as that stops bed blocking but woe betide you if you are just about coping at home then you are bottom of the list . When I phoned off in a strop ,I thought well that's not like me but perhaps it will give them the proverbial kick up the backside . Did it ? No it didn't - no return phone call - zilch . They are just unbelievable . By the way I have nearly calmed down now but will develop a full frontal attack tomorrow whilst V is at the hospice day centre .
Georgepa the Intrepid
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Georgepa
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Tomorrow I would be contacting Pals, Google Pals for your area and write them one hell of a shitty email about these monkeys! Whilst your at it, contact the CCQ - quality care commission for your area and copy them in!!
It makes me truly sick and beyond angry that you are having to deal with all of this on top of trying to look after yourself and V!!
If you need any help whatsoever please message me and I will go absolutely mental at them! I recently did with the DN's and bingo, I win! The people that work at your CCG need a jolly good slap, written warnings of the highest nature and a severe rocket rammed up their backsides!!
Is there an office one can walk in and talk face to face? ,,,,cuz I don';t want my words stuck in a pile of emails for a week before they are noticed....NOTICE ME NOW!
Bless you George, I do hope you get some response tomorrow and that it's good news. This whole thing is a complete nightmare in every way, don't stop fighting for your and V's rights, that's what they want at the end of the day, if anyone deserves help it's the both of you, good luck, I'm thinking of you both...,
Oh George why oh why do they do this? V deserves CHC it is a disgrace they should be ashamed of themselves, everything crossed for tommorow, go for it George the Intrepid, wish I could be there in person to witness it. Good luck George xxxx
Go for it George, vent until you are red in the face and they are completely lost for words and excuses, it is totally unbelievable that they didn't phone back and should be reprimanded for not fulfilling their promise. I feel angry for you so you must be bursting, totally unacceptable. Try the local newspaper as I'm sure they would hate adverse publicity but need to be exposed. Good luck with your mission and I'm sure you'll get justice in the end.
oh George, My empathy is genuine Des has a granddaughter who is a lawyer and putting our case together for an appeal, not for poor Des obviously but for all his fellow PSP sufferers If we can make the word Progressive mean something to these XXXXXX panels that will be a start. I hoped to have calmed down by now but I still fume.Hang in there Love Px
Don't forget the good olde Daily Mail. They would love this story, "frail" old man, wife, blind and doubly incontenant, with the perfect PSP mask, it would certainly make the front page.
George, I feel your anger from here, I would be exactly the same. But, please, pretty please, take a deep breath, try and calm down. This morning, go in extremely calm, to the point of icy cold, as soon as excuses start, stop them, you want to know what going to happen today, not yesterday. Ask for the name of the next person up the pecking order, or higher.
Go for it George a really good fight with jobsworths actually can lift the spirits. Give 'me hell and more. Virtual support to your right arm. Best wishes for some good news. Tim
Oh poor George ! I have had a similar "fight" to get CHC for P - it was like ploughing through treacle. It is so important for you, yet it seems so casual for them (whoever `they` are ).
I spent over a year of my life, waiting daily for a phone call or chasing `the panel`, gathering evidence etc, etc. Finally it was granted but I will never forget the total stress of chasing them for so long.
I do wonder how these people ended up in a caring profession !
Don't stop, make sure you contact your MP, go all the way to the top. In politics, when you call them out in public whether it be o n TV, print or radio people listen and when people get mad enough something happens, a unity of people just like you that have had enough.
Hopefullt your full frontal attack will work, keep us posted
Dear Dear Mr. Intrepid.....why is this happening to you ....I cannot say anything more than WHY!....
Let's see what would I do .....I would call my doctor and insist that they call said names to see "how it's going" I would beckon the assistance of someone who is not just a "Phone call away...." Someone tangible as it were....Get them over to your house to witness what you go through. (not the assessors ...they already have been ...and blah blah blah with them) Get someone who has some sort of authority, respect, success, get the damn newspaper to write up a story "Day in the Life of PsP and it's Carer" and let them see what the high hell goes on 24/7 and that, begging your pardon Georgepa, V does not have alot of time to wait around! Let them see your insanity....
Now I am sure I am not giving you the support you need in these words....So please forgive me I'm just thinking what I would do...I am damn serious about the newspaper and tell them your story....maybe that will kick someone in the keester and get things moving...
I am sorry Georgepa you don't deserve this surely you don't!
Hi AVB, you ask a MP is - member of parliament, you know, the person we vote into office to take of our needs. The same one, that sprouts off how bad, corrupt and damned right useless the previous mob are, until you put your X against his/her name, then it's, where the gravy train? there is a seat with my name on it!!!
Can you imagine any one believing our story if it was written? The professionals certainly don't. Had the district nurse in this morning, to give S his regular enema. I am positive they think I only want this, to avoid having to change a nappy/diaper, they didn't stay long enough to witness S sitting on the commode for two hours, not having a clue what to do. Having a panic attack every time he felt the urge to go. His brain just can't compute the sensation. So he clenches every muscle tight, not the right thing for bowel movement. When I try to explain this to anyone that will listen, you can see the scales close across their eyes. They don't believe me. Sometimes, I wish they would just bring "the injection" along, they might not be actually killing S and I, but they sure are taking away our will to live.
Oh poor Heady.....I don't know if your remember me telling ya'll how Bruce sitting there for ever looked up at me and told me that he forgot how to go.....and that is why he has a catheter today! (I bitched fast and hard for that thing too) Luckily his bowels are still something he can empty on his own...I won't be terribly surprised when that shuts down though.
Member of Parliament! voted in; going to do right by their constituents; and then power, greed; and in our case narcissism , ignorance and a taste for "other political ideals" ruins the whole agenda.....politics sucks....
But thanks for the info , Heady....By the time idiot face Trump gets out of office we may be having a parliament (we should be so lucky) Most likely it will become a frickin federation happily (?) connected to the regime in the north! I better shut up before the feds come and get me....or I lose friends here... ;(
O George . It's much the same story as ours . Don't give you though please .
I do know how awful, frustrating tired and angry you are feeling.
They all pass from pillar to post . And bounce of us .
The same old story someone on holiday or sick .
DO we get a holiday or even a lay in . NO ? Can we go on the sick NO.
It took us two years and the second attempt .. We have got it now though for which I a, more than grateful because you get quicker and better access to the people you need in general . Having said that three months agao we had out three monthly reassessment !!!!!!!! DId they really think he was going to get better !!! I wish .
I brought up about losing a sitter to feel while I was out and pain and drool relief . Botox etc . No news back . Hugs to you , xx
Oh, George! My heart rate went way up just reading your post. That's beyond maddening, and utterly unconscionable! I often wonder where the decent people are, that so many are willing to shift responsibility and dodge their clear duty to help a person in need. Forget about what their jobs may be, how can anyone hear your story without wanting to try to take up your cause? Have they all sold their souls?
I'm glad for your signature. I'm glad you are still able to fight. Go, George, go! Wishing you strength in your righteous battle and a quick victory. Love, ec
Just a thought Georgepa I reckon LBC radio would be very interested in this! Might be worth a call?! Do let us know how today went, I do hope you are both ok?! X
OK George it's all been said and then some? They are all b#######!
To all of us in UK have you ever heard of 35degrees? They seem to get a lot oif success lobbying government. How about we ask them to lobby on our behalf? What do you think? It would highlight PSP and also what we all go through to get what we are entitled to for our loved ones!
George if we all contacted them that might be a good idea? Just a sample of the postings on here would break anyone's heart? It would be a steep learning curve for them but worth a shot? We could also contact our MP's on given day? Then they would also get an email talking about PSP? I feel all the information is here we just need to use it?
Sadly I think all the various levels of obstruction you have met are merely individuals implementing the policies of their seniors, and the higher up the tree you go the more eloquent the rubbish you will be subjected to. I suspect that if you eventually get through to the minister you will receive a lengthy reply from an assistant secretary that will advance your cause not one jot. Why anyone would want to work in system that performs so poorly defeats me, except that doing as they are told ensures a secure job and an assured pension.
I had a relation who explained to me that, unlike those working in private industry, the civil service is in the ‘pursuit of excellence’. I thought he was joking but he was serious!! I replied to the effect that ‘in pursuit’ they may have been but they had never been in sight of their quarry, far less getting close to catching it.
You can at least take comfort from the fact that whilst you try to secure CHC funding, there are many retired civil servants surviving on an assistant secretary’s pension. Such is life!
Best of luck in your efforts and if you manage to cause at least one of them to reflect on the job they do and to do it differently, your efforts will not have been in vain. Wouldn’t it be refreshing if someone said, sorry we do not have the funds to meet our obligations and suggest you consider taking legal proceedings for our failings, and then outline the laws with which they are not complying. I won’t hold my breath waiting for that to happen.
Sorry I’ve rambled on a bit, good luck and best wishes to you both. I only wish I knew how to help.
Oh Georgepa, I totally sympathise. By the time we were finally given a 'no.....chc has now been withdrawn' it was over 8 weeks after mums second assessment by which time she had deteriorated significantly so not only did I appeal but I also asked for a reassessment. We are currently awaiting the outcome. You have to nag and nag these people to get anywhere.
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I am not mad - I've been Kafkared.
CHC FUNDING - WILL I GET IT?
CHC level of support given
