We have been getting care support from the Community Care Group on the Fast Track route. It lacks flexibility and increasing care is slow. So back in March I asked to be transferred back onto the Personal Budget Pathway.
The agency commissioned to do the care plan got to us in May and by the end of June they submitted it to the CCG.
For five weeks I have been pressing the CCG nurse to complete the paper work. I even sent her a full assessment Need / Risk / Treatment Care and management so she could cut and paste a bit. She just cannot get to it for the pressure of work. So two days ago I asked her for a date by which she could get it done. I added that I really wanted to avoid putting a complaint in, but we are feeling desperate now.
No response.
Called PALS and they knew nothing about CCG and kept telling me to ring the Social Services! (That's a means tested service) I told her off very politely for getting it so wrong. After ten minutes and she was still getting it wrong I decided she might not be an effective advocate.
So I decided to call the nurses boss and ask them to assist.
The main phone line went to answer machine... three times. That usually means a fire drill or something.
The CCG nurse then emailed me - (on her day off) saying she would increase the care immediately and what did I want. I wrote back adding just a four hour break and said that I had no needed to call her manager.
Then I got a call from someone at the CCG. "I saw you had been trying to call us. Can I help?"
I asked him who he was and he turned out to be the Team Manager - top dog. Stressing that I was not complaining, but just desperate I told him the issue.
He asked me to send my contact log and Needs Assessment to him and he would take it up with the Assistant Director!
Now is this good luck or not? Assistant Director's don't get involved in cases unless there is a service issue or a level two compliant. Well I stressed it wasn't a complaint. What had he seen in the file I wonder - the call was in two halves an hour apart - He would have taken a look.
I guess I should warn the nurse...
Eight hours of phone calls and typing up contact logs today... brain dripping through my ears... God knows how folk manage!
Rant over... Its now safe to return to your seat
Best
Kevin
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Kevin_1
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Egads....I'm not sure which is better, bein left on your own to get things done? or have all that "Help"?...
Well if you need something else to think about, My toilet needs a new line . The 40 year old caste iron one has finally worn completely away . toilet was sitting on a wing and a prayer.....Though those have been eroding as well! But by this time tomorrow B should have a fight on his hands when he falls into the toilet......not so easy to knock it off its ring anymore big boy....at least I should hope!
I must say I do feel positive toward you folks getting your needs met and even our needs met...Sounds like we both have to keep our legs crossed for awhile though! hahahaa
Sadly, your experience appears to be the norm...As if suffering with PSP & caring for someone with PSP isn't bleak enough!! From experience, whilst the Nurse Assessors do care, many 'Care managers'/managers don't seem to care, they just want to 'pass it on', don't like to make a decision & most of the professionals don't have an awareness of the disease process so can't understand the actual needs/risks. Regardless, are the relevant people not allowed to use common sense (assuming they have some..)? ? Why is is that you only get some support when you are so, so desperate...?!
What about those PSP sufferers who don't have anyone to advocate for them....
Serves them right for being flippant when it is obvious that someone is in desperate need, all of this stuff is beyond belief and puts extra stress on the carer as if it's not already enough! Looks like you've cracked it Kevin albeit not the nice peaceful transition one would hope for. Hope you have a more peaceful day and they get their ar-------s into gear. Wish I had your tenacity, doesn't come naturally but your tips will prove invaluable when my turn comes to fight the system.
Good luck Kevin, hope the blood sweat and tears produce the results you want. I think the background to the issue is the personal budget is actual money they have to give over, while CHC is a managed budget which the local NHS can ration reduce provision as they need. Hence management involvement.
Our CHC assessment for M in nursing home is due in next month, and according to the home manager I may have muddied the waters yesterday taking M out to the local PSPA group under the observation of the new NHS Commissioner who started asking questions about M's care and her capabilities. So I have started writing my diary again and getting nursing home to the expand their records.
I think that's the point Kevin, we don't! Most give up at first or second hurdle and struggle on, saving the NHS a fortune. Plus it gives the powers at be, that this department is going a good job, dealing with ALL the claimants. Not realising, all the hundreds of poor sods that just can't get through, that need to be dealt with!!!
I shouldn't worry who toes you tread on, if the boss gets your claim sorted out properly, that's their problem, should have done their job right, in the first place!!!
Yah I wrote to the Social Services here in the US and had meetings and whatever and it was always "sorry" So then my son got on the ball and after two years of fighting and arguing, they accepted B! Not only did they accept him, but they gave him 2 years of "back pay" for denying him that length of time....quite generous....It didn't amt to much but I sure appreciated it~!
Hey K1, I buckled almost immediately . It was my son who did all the convincing and frankly I don't know what the said or to whom....I do know that they deny B his PEG nutrition stuff every month and every month I have to remind them that they are no longer our medical providers .....Oh well keeps me humble....I don't wanna sit around taking money or goods I didn't earn...
AVB
I'm tired....B has been staying up til 1 am ......even if he does go to the gym.....he still feels awake
I guess we are lucky in the U.K. We all pay into the National Insurance fund and then all medical care is free at the point of delivery - excepting dentistry and opticians too some degree... the early roots of privatisation crept in there.
So how do you take care of the teeth and the eyes?
And Yes we are trying our hand at this national insurance...However we are still private though ALL insurance must offer it to all people....Unfortunaltely Obama Care is not turning a profit ....Not his intention to turn a profit...Infact I think he wanted to do it just like your govt...but republicans did not want to let go of the privatization that has made some (I emphasize some) billions...
Anyway we are under Obamacare...praise God as we wouldn't have insurance from employment...which would have cost 800.00 a month anyway! Through ObamaCare , being sick is much more affordable....except eyes and teeth like ya'll!
I agree if they'd have done their job properly in the first place then the directors intervention wouldn't have been required!
It's sooooo bloody wrong that everyone has to fight so hard when we are already in a bloody stressful situation!
I honestly believe that no one and I mean no one apart from the people on this forum 'really get it'
All these people that do these so called jobs do it badly and then go home and switch off! Well lucky ol them!
I really would like to make changes for the better! My every thought is virtually taken up with Psp and all of us on here and I'm sick and tired of everyone being treated like s***!
And yes, what about all the people in their own?! I'll be on my own one day as don't have any children so Ivan only imagine,depressing or what?!
stop apologising!!!!!!!! someone has not been doing their job, i get so frustrated professionals saying thay are busy and workloads, welcome to our world. i always reply not my problem. they are all governed by a professional body and have a responsibility to report if they cannot complete their work.
complaints are dealt with very transparently so stop worrying re offending anyone, have a glass of wine and sod the lot of them!
Well, I am not apologising. I am just trying to get the best outcome. I am managing the relationship to help them do what I need them to do.
When I left the NHS it was because I could no longer manage my patient list on top of caring. My patient list was 300% of the maximum safe limit. I was working up to 50 hours a week. We had 10% cuts in funding 3 years running and 15% cuts in staff with increasing numbers of patients.
So I guess my angle is not to beat the worker to death for not delivering - Though I keep the pressure on. But I aim to be merciless with the system.
We fund the NHS on a par with Portugal and Spain. Something like 2/3 the $ spent by France, Holland and Germany. The cracks are beginning to show.
If we want to keep the NHS we really need to fight for it.
Thank you for all of your support folks. It really helps.
Bleh:
The nurse sent me her completed paper work this afternoon... I only saw it an hour ago.
"Liz should be accompanied if she foes into town"
eh?
and it goes on... I ma surprised she didn't say that Liz should have support when driving fast cars!
She crammed four hours of paper work in this afternoon by submitting a report almost two years out of date.
Well, nasty me has sent it back with highlighted note all over it.
Nice me didn't copy the team manager in.
I know they're totally under staffed...
There is that curious thing about not wanting to loose the report writer as an ally - it is so easy to get monies turned down with the subtle use of this word or that.
There is an appeals process - whoopie!
Thanks for being there wonderful PSP folk!
And, I thank the stars I am not in myu eighties and unable to use a PC.
I just sent a letter to our minister of health and Prime Minister
I am in Canada . Been moths waiting g for a seating clinic. Have had hundreds if phone calls with no replies into various agency's. Why do they have to make it so hard for pdople who ate already struggling just to keep going. We need some Inovation. They should be talking to people caring for loved ones not so called experts who have never lived with someone with a progressive condition be it psp pd ms or cancer. I doubt it will help much but I believe those of us who have a voice must exercise it.Good foryou for doing just that. I have found that one has to make things uncomfortable for some one at the top before things are dealt with. In the end they than decide it is easier to deal with your issue because they know it will keep coming back to them. Keep up the great job you are doing. Rant all you need this group is here for you .
There are a few hyper competent 'Can-do-ans on this site. '
Is that how it's said?
Welcome to that club.
Strength to us all and go for it!
I thought I just had to do caring - I am now studying regulations and schooling carers against the Quality Controls they should be meeting as well as trying to finesse an uncooperative (read underfunded and overworked) system.
And still do caring.
Thanks - But I can rant rather a lot... but so can most of us.
Good luck with your battles.
And thanks for the support... I need that some days.
Good on you Kevin for fighting the fight you shouldn't have to fight.
Your posts are always so informative but a sad window into what is to come for me some time in the future. I know I will be searching through your posts when that time comes.
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