Warning - don't complain

ellie 123

Registered User
May 25, 2006
Hi all

Have not been around for a while as I haven't had the time. Not so much because of mum (although there have been plenty of sleepless nights, etc) but more so beca`use of the endless battling and badgering. Naive me thought that was all over once I got mum home. But it just goes on and on - battling for pads, battling to get a doctor out to see her, etc.

At the moment I am on the verge of tears - of frustration.

The care services got worse and worse until I put in a formal complaint and now I've had my care package cut. The reason I feel so tearful and frustrated is that no one bothered to tell me, the first I knew was when the carers came and said that they supposed I'd heard. Now I can't get hold of anyone to discuss this with, so I've learnt the hard way. It;'s better to put up with whatever service I get because if I say anything I'll lose what little I've got.

I just feel once again, that they've (nhs, ss, etc) got us everyway and we just can't win.

I've listened to all the **** on Radio 4 and I'm sorry but that's all it is. It's never going to change, it's never going to get better. Unless we all take our loved ones and dump them outside Westminster - nothing will happen - and MPs would probably just step over us and call the police to get us arrested.

Apologies for the bitterness - but I could thump someone at the moment.

love ellie

Grannie G

Volunteer Moderator
Apr 3, 2006
Hello Ellie,

Have you been given a reason why your mother`s care package has been cut? I think you are entitled to one. Has anyone said the package has been cut because you made a formal complaint?

I would write and ask why it has been cut, and enclose a stamped addressed envelope so there is no excuse for not replying.

ellie 123

Registered User
May 25, 2006
No Sylvia, no one has said anything and I would not have known anything if the carers had not told me. Today they asked me again, did I know the package had been cut, so I asked them if they knew why but they only said they'd only been told it had been cut and hadn't been given a reason - I don't suppose it's necessary for them to know why. But the fact that no-one will talk to me now or return my calls is what's killing me.

I know I can write but it's so tough Sylvia - on top of everything else and just to keep phoning people to chase them up is so time consuming without having to constantly be writing letters to everyone concerned, about every little issue, it's just so exhausting. I have ME and so it's particularly tiring. I struggle on a daily basis with everything and since mum came home, many days go by when I don't get dressed or washed because when she is asleep and I can slip off for a bit, I just don't have the energy. Sorry It's not a moan, just telling you really so that you know where I'm coming from.

love ellie


Registered User
Mar 7, 2004
Dear ellie, you sound so down, and with good reason.

No words of advice or wisdom, as I have had a bit of a rough week too.

Just sending you a special hug - feel you are in need.


Hope it helps, we do all care.

Grannie G

Volunteer Moderator
Apr 3, 2006
Dear Ellie,

All I can suggest is you see your GP and explain the situation. It`s bad enough having your mother`s care package cut without an explanation, but if you have ME as well, it`s a disgrace.

I know you are not moaning, and understand where you are coming from. I just wish I could do something constructive to help.



Registered User
Jan 5, 2007
Please keep complaining.

Find out if there is ‘Support for vulnerable adults’ in your area.
The internet is helpful in finding phone numbers and addresses.

What Care service do you have? Are you getting a NHS package, Have you been in-touch with SS. First you have to have a SS who has a name. Contact who ever is overseeing your Mum.

The Dr. Who has seen your Mum has a name, and as Secretary, speak to the same people by name, this helps. Ask for their help, and keep in touch with one Dr. If your Mum gets another Dr. Try and keep contact with Him. Letter’s help.

Written complaints both formal and informal has helped my Mum tremendously with the Care my Mum was not receiving. Writing to NHS and ‘Support for vulnerable adults’ has brought results, not quickly, but results came with big improvements. But... I have a Sister, being alone is very tough to keep ones head above water.

Try and write to who gave your Mum the Care Package, then send copies to your Mums Dr. Asking if there is anything He/She can do for your Mum, as you are coping alone.
Keep your chin up, please keep complaining.

Tender Face

Account Closed
Mar 14, 2006
NW England
Hi Ellie - go thump!!! (But use a cushion! :))

Caring is hard enough on anyone - let alone when you have problems of your own. I guess that as you are part of TP for support for mum that you will also have accessed suppport for yourself through the ME association? (http://www.meassociation.org.uk/ )

Perhaps you could find some support through that for yourself - if it's just for someone to act as advocate and take the strain off the letter-writing and enquiries ........ but hopefully much more? Even a 'general' local carers' group may be able to help ....?

You obviously need some TLC yourself .... my hat goes off to you...

Love, Karen, x


Registered User
Aug 29, 2006
SW Scotland
Dear Ellie, you sound so low, and I'm not surprised. It's hard enough caring for someone with AD, without having to battle with the system all the time.

You do need someone on your side. You would find your local branch of Princess Royal Trust for Carers very supportive, and they will take over sorting out your care package for you. This is their website, you can find your local branch.


You could also try the advocacy service. If you google advocacy and your local area, you'll find the nearest service to you.

Please try one or both of these, you can't go on like this, you'll be ill. Please let us know how you get on.

Love and hugs,

ellie 123

Registered User
May 25, 2006
Thanks all. A great response as usual. Am sitting next to mum at the moment waiting for the doctor to call me because she' s complaining of the itching in her bottom is keeping her awake. And I'm useless because I never know whether it's her dementia - because a lot of the time it is fact. The doctors always make me feel I'm making a fuss over nothing but sometimes I just need the reassurance. Is anyone else such a dipstick as me!

You've given me some great advice - it's just so hard asking for help and it must be my attitude or something because I usually get very unhelpful people, so I really dread doing it. I much prefer to be self sufficient. Stupid, I know.

Thanks for the hug Connie, sorry to hear about your week. Don't know how to do hugs yet, otherwise, I'd send you one back.

I'll get back and let you all know how I get on - once again a million thanks for rallying around for me yet again.

Love ellie

ellie 123

Registered User
May 25, 2006
Just wanted to add - to Maggie.

These are the people that will not speak to me now and I think I've mentioned before (but maybe not!) the situ is complicated because I always have to approach Notts first then they hand over to Kent who immediately tell me it's nothing to do with them and go back to Notts. It's an absolute nightmare for weeeks and weeks I'll get batted bewteen the two and I really think it's like some sort of game - who will give in first, them or me.

A funny thing happened earlier this week - I had been trying to get a local doctor out to meet mum and review her medication. But even with the help of the community matron, was getting negative responsses continually. They just said they couldn't hel[p mum as they didn't know her. Anyway, my GP finally comes out and isn't really interested, just going on and on about the fact they can't do much and it could go on for years. Anyway, he turns to me and says - you're going to need respite, so I'd start fighting for it now. It will take you about six months but everytime you get turned down, re-apply. But get this, he wants me to apply for 2weeks respite every three months - I think I'll have more chance of going to the moon!

Love you all ellie


Registered User
Jul 31, 2007
Dear Ellie,
I am so sorry to read your post. We do have enough to do with dealing with A.D. without incompetent people passing the buck.
You sound as if you are at the end of your tether.
As the Doctor is saying you need respite, perhaps he will put pressure on the what I term the useless powers that be.
I wish you sincere best wishes.

Margaret W

Registered User
Apr 28, 2007
North Derbyshire
Dear Ellie

What an awful situation you are in, worn out, and still trying to fight. Well, sorry love, but you have to fight. You don't have to do it today, tomorrow will do, but I suggest your GP is the person to get on board. Tell him or her how it is. Really.

Ring the social services and tell them you have had enough. Threaten to leave your mum unattended cos you can't cope any more without support. Tell them you are going to book into a local hotel, or go to stay with a friend, and see how fast they move then.

I do hope you get the package reinstated. We are most of us wanting packages to be extended, not withdrawn.

Poor love, I would send you one of those cuddle icons, but I don't know how to do them, so just accept a cuddle from me, if it is of any use.

Best of luck



Registered User
Sep 10, 2005
Dear Ellie

So sorry to hear about your situation. Margaret W is right, I think you have to call SS and tell them that 'enough is enough'. It is they who have the responsibility to help your mum - not you. When you feel able, go and 'kick some ass!' :)

Will be thinking about you. You sound like you've had a battle royal with it all.

Take care

ellie 123

Registered User
May 25, 2006
I'm too scared to complain to ss because they wanted mum to go into a home and because of my illnesses I'm afraid the decision will be taken out of my hands. And after tonight's experience I now know that if I complain I can end up being worse off. So I don't feel I have a choice at the moment.

Also I'm not with a particularly good surgery - had to fight them for 2 years and only with the support of my local health authority did they accept that ME existed. They went so far as to change my medical records in order to back up their claims, thankfully I had the evidence to prove them wrong, but it's not left a particularly good relationship between us. My GP is very nice actually but even he doesn't like to upset the apple cart and bows to the general consensus of the partners.

love ellie


Registered User
Jul 19, 2005
I know how you feel. I had nothing but a long battle with SS. I even got told to stop complaining your getting enough 10hrs a week. If you don't accept me you won't have a SW I gave one SW ( at the hospital) a 7 page information sheet i done with 30 pointers. Here are some of it. I hope it helps you. The SW i gave it to i think opened his eyes. Use it ether copy it or print it.Its all what is happening. I wasn't allowed to see to my own health. I have now to go to hospital.

Carers providing a high level of care are twice as likely to be permanently sick or disabled

316,000 people in the UK who provide over 50hrs a week caring will be permanently sick or disabiled

Carers experience health inequalities

Few carers receive appropriate levels of support they need from Social Services

The impact of caring can be detrimental to the health of carers

Most carers get by with little or no services and as consequences have less time to address their own health care needs, deal with benefit problems, take up training or leisure oppertunities. Thus Carers Rights and Human Rights are being disregarded

There is extremely significant economic consequences for the NHS and Social Care system if even a small number of people have to give up caring due to ill health or lack of support. The person cared for has to go into care, the carer has hospital appointments, GP appointments, specilist appointments and now can't work

Every carer is saving the National Economy £15,260 a year

Guidelines are not being followed needs should always come first. This puts more pressure on carers, thus they get ill, the person doesn't get the needs they require

Poor carer help is particularly associated with suppoting people with cognitive impairment. Younger spouses are at a higher risk as needs are not being met.

How many Social Workers have cared for 24hrs a Day 7 days a week?

Care is supposed to be person centered - not limited -

Would you like to be part of this system? There is a possibility one day you might, statistics prove this. How would it affect you?

I so hope these 12 pointers help you. Its part of the 30 i sent in



Registered User
Jul 19, 2005
Forgot to add. As getting carers in is expensive. This is why care in the home is failing.They say people should be encouraged to stay in there own homes. But the truth is people are being put in homes due to it being cheaper than putting carers into a house. Care home 24hrs a week care 7 days a week against 27hrs care a week in there own home. There is something wrong with the system


Registered User
Sep 26, 2007
Hi Ellie

You and your Mum are being treated terribly. What I cannot understand is why people, who can obviously see the amount of pressure that you are under, would treat you so badly?

It does worry me greatly that if you are going to take care from those who complain, what message is that sending to those who are not providing the appropriate care in the first place? If people are too scared to complain or raise concerns for fear of having care pulled then this leaves this system open to serious abuse.

From personal experience my family also experienced difficulties in getting new care from SS for my granny when we dared to raise concerns about a care provider the SS had organised. It sent us the message that if you raise concerns - the person you care for is the one who will suffer.

This mind-set must be coming from the top otherwise they wouldn't be able to behave like this.

What kind of people punish families and people who are evidently suffering enough? Words are beyond me on that one.

Take care Ellie - I do hope your situation improves.

EmJ :)

ellie 123

Registered User
May 25, 2006
Hi chip

that's the problem you see they WANT me to put mum in care because it will be less hassle for them. They won't have me chasing them up all the time and they won't have to worry about care agencies because mum has assets she would be self-funding.

So you see it's to their advantage to prove I can't cope and ship her off to a home. Then they can wash their hands of both of us.

Exactly EmJ - I have been warned several times that if I compl;ain I can be dropped like a hot brick. This was before mum moved into my house but even now the carers are warning me to be careful in my complain ts of the agency. I find this attitude extremely difficult to accept and ho;w can we ever get a better level of service.

I have made my point on the Radio 4 thingy for what it's worth.

love ellie

ellie 123

Registered User
May 25, 2006
Update on my battle of the carers

Hi everyone

Just thought I'd let you know the latest.

Had a meeting (at my place) yesterday with the manager of the care agency - basically she refuses to take responsibility for anything. Either 'it was an isolated case', or it's the carer in the wrong, or it is my responsibility to deal with the carers as it is "impossible" for her to contact all the carers, as my mother has so many carers.

She once again emphasised that I should be grateful because they pulled out all the stops to get my mum down before Christmas and I should understand that Christmas and New Year is a very busy time and I be happy with what I did receive. I told her she shouldn't have accepted my mum then as she was safe in hospital.

An 'isolated case' was the no uniform issue and I had to point out to her that I wasn't even aware of their uniform but that the community matron had picked up on it and had to speak to the carers as if they are not wearing a uniform, they should have an apron.

She denied that carers are not allowed travelling time between jobs - so is it that every single carer is lying about this? I just don't know anymore.

She totally denied that what I had heard about a carer coming at the end of the hour because the office told her she must come to get a signature on her timesheet as it is supposed to be a double hander call. She said that she had deducted that carer's time and only allowed her to put down half an hour, but she was only in my house one minute - so how come they can claim half an hour?

She refuted my comment that their training of carers who have come from something like shop work, for exampl;e , was inadequate. In fact this morning (as mum is particularly bad at the moment) the carers didn't seem to know what to do with mum except from shouting at her 'turn over Edith, turn over' over and over again. I found this quite distressing and begged them to stop. I then gave them a quick lesson in how to care for an immobile patient!

So basically - either it's the carer in the wrong or my responsibility.

I don't know, maybe I just expect too much.

I've spoken to mum's care manager but have just been fobbed off again - she really doesn't want to know and has been unable to give me any reason for my care package being cut. However during the meeting, the manager did tell me (and this is from someone who has never met my mother) that I didn't need the amount of time allocated and she had told them this. She wasn't particularly happy when I disagreed and told her that the ones who were getting through quickly were the ones who were not abiding by the care plan that the agency themselves had worked out. My care manager had told me to leave this plan some where the carers could see it - this I did - but they just put it away everytime and according to their manager "they don't have time to read the care plan"! So what's the point of it then.

love ellie


Registered User
Jul 7, 2007
Hi Ellie

I've come in a bit late to this thread but my main point is that whether you are paying or not (sorry not sure) YOU ARE A CUSTOMER
and should be treated as such. No-one is doing you a favour and the meeting and the managers responses are disgraceful.

Is there no other agency you could use ? Not sure how far you want to push this but some concrete evidence and mentions of fraud might stir things up !

It really makes my blood boil when this kind of thing happens. I'm sitting here saying things like "write to your MP" etc but I know it won't make things better in the short term.

Did you try the local Alzheimers Society or the Princess Trust ?

Very best wishes


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