Warning - don't complain

[ROSEANN]

Dear Ellie
Like Germain I have come into this thread late and am totally shocked at the treatment you have had.
I am going to a workshop next week at one of our universitys and there will be trainee social workers asking us questions about how we rate the help we get from professional people
Would you mind if I quote some of your difficulties as an example of what it`s like as a carer? I would be most grateful.
Also Chip could I use your examples as well as I think they are very good.
All the best Roseann

 

[ellie 123]

Go for it Roseann because the major problem I am coming up against time and time again is - so you're not happy, tough. No-one seems bothered if you say your going to take it higher, it's like as if they know nothing will change.

Today for example,

AM CALL - two novice carers who have no idea how to deal with an immobile body.

LUNCHTIME CALL - Suddenly notice that these carers and the morning carers have usedthe same flannel to wash mum's face and top half and then her bottom half with (bearing in mind mum has thrush and a continuous UTI.

TEATIME CALL - Carers have got mum on the commode and are feeding her there.

Am I being too picky - go on be honest because the isolation can cause me to get things out of proportion.

Germain - there has been fraud as far as I'm concerned and I put this in my letter, copied to the Agency's head office, and SS but no-one seems interested.

I've just been given the name of another local care agency but that is probably going to be another battle to change.

I've had enough now, I feel I just can't keep on fighting. I've even given up my court case against the nhs and SS because I am overwhelmed by the inadequacies of ALL the professionals i have come into contact with and so I've told the solicitor I just don't know where to start as the whole care system is corrupt and especially so if it's any form of dementia.

love ellie

 

[ROSEANN]

Hi Ellie
No you are not being picky I think you are just being a normal human being.
I cannot believe that these people are behaving like this, do they have no respect would they like to be treated like this and how would they like their mother or father treated this way.
As I said in another post one day they too will be old see how they like it then.
Another thought Ellie do you have a CPN who you could get on board to try and help you.
Will let you know how I get on next week and I will try and see if anyone has any ideas that could help you.
Take care Roseann

 

[ellie 123]

Hi Roseann

No i don't have a CPN since moving mum to my home but the one she had in Notts wasn't much good. It's also complicated because mum's not under anyone's umbrella. As I've posted before Kent and Notts bat me back and forth saying it's the other county that's responsible. It's so frustrating. Today for example, I approached mum's care manager (Notts) as my doctor told me I must start organising my respite, but she just said contact Kent when she knows for a fact that Kent will have nothing to do with me or mum as they consider us the responsibility of Notts.

I'm really hanging on by the skin of my teeth - I really don't know how much more of this I can take.

Hope you get some good answers next week.

love ellie

 

[gigi]

Hello Ellie,

I suggest you contact your MP asap..you can e-mail him tonight-just log on to House of Commons..find your MP and click to e-mail. Tell him/her everything you have told us..
These things that you describe are horrendous.

Last year when I had problems with my son's care (another story) I was advised to contact my MP and believe me as soon as "those who cared" knew that he was aware of the situation things changed..suddenly there was support..please don't give up..
you should not have to be in this position and my heart goes out to you,try your MP..and keep us posted..

Lots of love Gigi xx

 

[EmJ]

Hi Ellie,

I had hoped that your circumstances would have improved slightly. I can relate so much to what you have described. My family had a similar experience last year. It seems to me that the system is falling apart in some areas and rather than doing anything everyone is just standing by and watching. You should be so proud of yourself for standing up for what you believe and know is right.

It is exhausting and no one should be having to experience this but the thing that kept my family strong and determined was the fact that many people don't have a family or anyone to raise concerns on their behalf. So you're not just fighting for your Mum's rights your fighting for all those other people who are not fortunate enough to have someone like you to point out what these people should be doing.

I would try contacting your MP and ask your MP to read this forum. You are not an isolated case this is happening to too many people.

Take care,

EmJ

 

[TinaT]

Dear Ellie,

I know how exhausted you must be but I second the suggestion to write to your MP and make a long list of everything that has happened, both as a result of the agency's neglect and the two LAs who are 'batting' you about between them.

If you type in Members of Parliament into the search engine, and then go down the list to your area, you will find the e mail address of your local MP. Also I would suggest that you write to The Secretary of State for Care, Ivan Lewis and send him a copy.

I did just this regarding the terrible time I had had with emergency respite for my husband who was at that time under the age of 65. No care home could be found which was licenced for dementia sufferers under the age of 65. I was in hospital having emergency treatment for a badly broken wrist and going through hell because of all this. I also complained that at that time I was getting only Disability Living allowance of £65 each week to keep my husband, yet I had to pay over £100 per week for the respite care.

It took a while but eventually I got a letter from Social Services apologising and a full refund of the monies I had to pay. I was also informally told by my social worker that the LA had, as a result of my kicking up such a fuss,a thorough revision of emergency respite procedures and my case had resulted in them having to make better provision.

I would also point out to the MPs (especially Ivan Lewis) that in view of recent Government directives to move towards Direct Payments, that your case is a typical example of what can go wrong with using a private agency and what has he in mind to prevent further examples such as you have given!!

xxTinaT

 

[alfjess]

Hi

Has a private care agency no governing body? Like in the the care commission for care/nursing homes?

If there is such a thing, could a complaint about this agency and especially this manager be made, who in my opinion is just trying to bluff you and cover her A--. Sounds like they are running their business as cheaply as possible.

If it were me, I would be livid, but if you are employing this agency, through direct payments, could you not then vote with your feet, sack them and find better carers.

Maybe I have gotten the facts all wrong, or maybe you are too tired to fight it. If so sorry.

Take care
Alfjess

 

[Doreen99]

Dear Ellie

this sort of incompetence/unhelpfulness just makes my blood boil. It's so typical of what carers seem to have to put up with, it's as if the powers that be are doing them some sort of a favour by providing what they are actually entitled to.

I strongly support everybody's suggestion that you contact your local MP and tell him exactly how you have been treated. It's amazing how this can galvanise organisations into action.

I would also ask the idiots you had the meeting with to confirm what they told you in writing. If they refuse, that doesn't look good for them, if they do actually repeat in writing what they said verbally, that gives you some amunition to use against them. And if what they write is nothing like what they said, it should still be useful in that they will probably be telling you what support you should actually be receiving which, again, should be helpful.

I know you must be totally exhausted and fed up with the fighting by now but, hopefully, one more effort will actually achieve some positive results for you.

 

[chip]

Go for it Roseann. I hope they listen and take note. I still haven't heard how much to pay for the NH if i get a big bill from them i will throw it back at them and tell them to pay it as its their fault. I will also say as i didn't here within the time i was told i would i took it nothing was to be paid as the advocacy was told that by the SW.Even when they get put into a NH things don't end there but carers allowance does. I also found another site that says about what is expected when you become a carer in the uk will but the site address on the resources use that as well Roseann

 

[ellie 123]

Hi all

Ok, firstly I have emailed my MP(thanks Tina and gigi), secondly, a very nice guy called Peter came to see me today and among the things he's offered help with is attempting to get mum;s care thingy (sorry bad day - mum has already poured tea over the piano and attempted to eat some baby wipes) transferred down to Kent, a follow up letter to MP re my email and something else but I've forgotten what. Apologies for my vagueness but I think the events of this week are catching up.

Doreen - I was going to write her a letter confirming whhat we had discussed but do you think it's better I ask her to write it?

Have to go now mum is seeing food everywhere and trying to eat objects, thanks to you all.

love ellie

 

[Skye]

Hi Ellie

That sounds more promising! Peter sounds a treasure. Do you know what he is, or where he came from? And did you get his phone number?

I hope you're now going to get some action.

Love,

 

[Natashalou]

ellie,
firstly, my utmost sympathy..you are in an awful situation. But I do doubt the care package was cut because you complained. I work in the public sector, (although not SS any more) and when we all (as in every council worker from carers to caretakers, EHOs to SWs) came back after Christmas we were all faced with horrendous budget cuts.
There is much less funding this year (as in 2008/9) from Central government and EVERYTHING is being cut from services to jobs which is of course a viscous circle.
We were all under instructions to save save save, and its likely that everyones care package was cut, not just yours. Doesnt make it right or better I know but I dont think its you personally.
Whilst I understand your frustrations and the temptation to say you are going on holidays etc, unless you REALLY intend to carry it through..its not likely to work. honestly. And if you ever have a situation where you DO go away it might be harder to get emergency respite etc.
Please dont take this posting the wrong way..im just trying to explain things from the other side of the fence. Until there is enough ongoing and growing funding from Central Government expect more cuts year on year.

 

[ROSEANN]

Hi Ellie
sorry I took so long to get back to you ( got my dates mixed up)
I went to my work shop today and told them about your trouble and all present were shocked at what had happened.
A social worker there said allthough there had been cutbacks if your package was being cut you should have been told certainly by letter or aleast a phone call.
But having listened to some of the replies I got I do not hold out much hope for the next generation of SW we have coming out of university.The main thing I was told was to complain to all and sundry and I told them that this is not as easy as you think when you are a carer who has their hands full just trying to get through the day.
Sorry I am not much help hope you can get things sorted.
All the best Roseann

 

[ellie 123]

Hi everyone

Just to let you know I have had a response from my MP and he has been in touch with my local SS and they are going to be contacting me. So I am hopeful of things improving now. Fingers crossed.

Thanks Roseann - you tried and I'm v. grateful.

But things have taken a shocking turn. Tonight I was informed by a male carer that another carer has been spreading gossip, (in other clients' homes and using our names) that he and I are having an affair. Apart from the fact that he is about 20 years younger than me, he's gay. I'm not a prude and my initial response was to burst out laughing because the whole idea of someone caring 24/7 has time or energy for an affair is ridiculous. but then the more I thought about it, the more angry I became. This woman is spreading this garbage amongst other carers and clients - in my line of work we must sign and maintain client confidentiality unless if concerns abuse of a child or a serious criminal offence of another kind.

I don't know what to do. One part of me says don't make any more fuss, let it all blow over but then another part wants to officially complain and demand this woman puts an apology in writing to me. I've already told the agency I never want her in my home again but I haven't said why.

What do I do? I can't believe that on top of all the stress of looking after mum I have to deal with some ridiculous woman (because she's not some silly young girl) spreading such lies. I didn't reckon on having strangers into my home meant that I would be drawn into their stupid dramas and gossip. Has anyone else experienced anything like this. As I write this now, it seems like some nightmare and I'll wake up and think how stupid was that, but it's reality. Do these stupid stupid people not realise we have far more major things to have to worry and stress about.

A stressed and shocked ellie

 

[jenniferpa]

Stressed and shocked no wonder.

It does sound as if this rumour is directed as much against the male carer as it is against you. Not that that's any consolation. Do you have someone who is prepared to stand up and say "yes she told me this"? If you do I would definitely report it. However, if you don't I think I'd be inclined to let it go - anyone who knows both of you (or in fact either of you) will know she's totally off base.

 

[Margaret W]

Dear Ellie

Let it go. You have enough to manage with your mum. I currently have a serious work-related problem, a potential grievance against a colleague, I have seen my Dean of Faculty, HR and the Union, and they all agree I have a case, but I just can't be "arsed" with the effort with all that is going on about mum.

You are probably quite justified in making a complaint, would probably succeed (but what would you win, more time to spend with mum, more care?). Nope.

Let it go love. Join me in my frustration at knowing I am right, but I just don't have the energy to pursue it.

Love

Margarey

 

[ellie 123]

Yes, you're right girls.

I know the male carer is going to put in a formal complaint on Monday because he's worried it's going to affect his position - he's not been with this company long. He also thinks that he may be taken off mum's calls to protect us both which would be a shame as he's really good with mum. He calls her his 'princess' and on her good days I swear she flirts with him!!

So unless I get dragged into it through his complaint, I;ll let it go but I'm definitely not having her back in my home. In fact mum was scolding her this morning because when she washes her, you'd think she was attacking the kitchen floor and when she feeds her she just shovels the mouthfuls in without space for swallowing, so I guess this is just giving me the excuse to give her the boot.

What a drama though - think I'll start keeping a 'care' diary, could turn into a good soap.

love ellie

 

[117katie]

Dear Ellie

Sorry to hear of your latest problem - not an easy one to handle.

It may well require all your tact and diplomacy to sort out the gossip-spreader, but you've got enough of that in reserve no doubt, so don't worry on that front.

It would be a shame for your Mum to lose the hands-on services of someone she obviously gets on well with, and who may well be of benefit to her in the long term.

So I have a few ideas, but bearing in mind the very sensitive nature of your predicament, I'll perhaps PM my suggestions to you, if I may.

Wishing you well,
Katie

 

[Margarita]

I know the male carer is going to put in a formal complaint on Monday because he's worried it's going to affect his position - he's not been with this company long.

Don't see why it should affect his position of still caring for your mother , They not like doctor who can not have relationship with they patient/clients

I can understand him wanting to complain about this other woman idle gossip , may be she just Jelours of his natural rapour he has with your mother and yourself .