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A summing up of my experience as a carer - Carers UK Forum

A summing up of my experience as a carer

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To: nhshighland.feedback@nhs.net
Subject: End of being a carer's survey
Date: Wed, 29 Jan 2014 22:01:40 +0000

Dear Sirs,

I was, until 1/12/2013 a carer for my partner who was on home dialysis. My partner passed away on this date.

I have asked the renal unit at Raigmore Hospital to provide me with an after-care survey for my completion but I was told that no such survey exists and I have had no contact with them since making this request.

Due to the lack of provision of such a survey I feel it important that I pass my comments to yourselves.

I would first of all like to say that I was colluded into slavery by Not Here to Support (NHS) and Diddies With Pennies (DWP). During my time as a carer I was given less than £60 per week Carer's Allowance. I was forced to work part-time and could earn no more than £100 per week. During the time my partner was a home dialysis patient our electricity bills increased by 150% per month. Not Here to Support provided us with £40 per quarter towards our electricity bill. Both my partner and I where left in a very difficult financial position for almost 4 years due to Not Here to Support & Diddies With Pennies' collusion.

During the time I was my partner's carer I expressed concern on many occasions that we were getting no proper support. Nothing was ever done to provide any support. This is no surprise since the NHS are Not Here to Support.

When my partner passed away my Carer's Allowance stopped 1 week later. Due to Christmas Holidays and the need to organise her funeral I received no money from Diddies With Pennies between 9/12/13 and 20/1/14. The payment I received on 20/1/14 was due to the fact I am now on Employment Support Allowance. I am on Employment Support Allowance due to depression caused by the combined stresses of my partner dying and Diddies With Pennies vulturous tendencies. In between times I have received letters from Diddies With Pennies advising me that I now owe them over £3900.

So between having been driven into slavery, lack of support, facing massive debts and probably becoming homeless in the next few weeks I would suggest that noone should be a home dialysis-patient carer and that in general anyone who needs care should be placed in a care home.

In my opinion it would have been better if Diddies With Pennies had sent me a map providing me with a route to the River Ness since that would have been a much quicker way of reaching the same end as they seem determined to drive me slowly towards.

I hope that these concerns will be taken into account before any more people are offered home dialysis or any other people are asked to care for them.

regards
How in god's name did the Diddies with Pennies work out you owed them nearly 4 grand?
Weemart,

So sorry to hear all you've been through. You sound thoroughly worn down by the years of stress and worry.

Your post is alarming on so many levels, but brilliantly written and with a certain black humour that makes a strong impression. The tone of your words reminds me of the old saying: "Don't get mad, get even". I would love to see your post printed on the front page of a national newspaper - what food for thought that would give the powers that be!

It will be interesting to hear what sort of a response you get from Not Here to Support.
Hi Weemart

I am so sorry to hear of your loss. It is hard to think straight after a death.

I really must congratulate you on such an amazing post. I was laughing along with it and acting like a little noddy dog on a back shelf. It is so true especially the bit "colluded into slavery"

I dont really have any problem with the "Diddies With Pennies" but oh my word the "Not Here to Support" mop they were totally useless. I had a discharge with my father who was my caree with MRSA and Lower Respiritory Tract Infection. He was sent home for my to provide care to when I have eczema and asthma. That was a sneaky move and a threat to my welfare.

I too had the less than £60 per week to provide care for 168 hours per week. No minimum wage law turn into account, 168 hours per week is not acceptable within the European Working Hours Directive but the Government dont care about that any more than the minimum wage question. They just abuse the carer knowing that the carer is there out of love.

It is slightly different with partners but when the caree is a parent no sooner do they die but the "helicopter" (relative who does nothing useful, moans a lot and thinks they are entitled to something) turns up and creates havoc and next thing you know you have lawyers coming wide demanding money with menaces and they dont even explain why it legal that the helicopter can demand money without having done anything. They totally ignore the fact that it is only because the carer was there that there is any money to be demanded. It would have cost £1000 plus per week to keep my father in a Nursing Home but they got me to do the job for less than £60 per week.

When is the abuse of carers ever going to end. If I pay up the money will I get peace or will there be more and more demands. I can not even get sight of the Will or the Power of Attorney where my father's wishes were set out. I have made several requests to see them but I am totally ignored. Now I am classed as disabled and not that I would want them to my children are not over keen to become carers! I wonder why????

Duncaring
I do have a kind of dark humour at times. Helps me through the stress.

I was told by the NHS staff who trained me on how to use the dialysis machine to claim Carer's Allowance and that I could earn up to £5000 per year by working Part-Time. I wasn't told that it is actually £100 per week. So since I went over £100 one week in September 2012 DWP immediately assume that I must've gone over £100 per week every week since. So they now assume I owe them 15 months of Carer's Allowance.

It's a pathetic welfare system. It's designed to get people off of benefits by driving them insane or killing them. My Carer's Allowance didn't even pay our monthly electricity.

And when we want money from them we have to send all sorts of documents proving we are in need of it and eligible to it. When they want money from us they just need to send a threatening letter.
Hi Weemart


It is slightly different with partners but when the caree is a parent no sooner do they die but the "helicopter" (relative who does nothing useful, moans a lot and thinks they are entitled to something) turns up and creates havoc and next thing you know you have lawyers coming wide demanding money with menaces and they dont even explain why it legal that the helicopter can demand money without having done anything. They totally ignore the fact that it is only because the carer was there that there is any money to be demanded. It would have cost £1000 plus per week to keep my father in a Nursing Home but they got me to do the job for less than £60 per week.
I know exactly what u mean there. Part of the support I was asking for was to ensure I'd be financially stable when my partner died. The same NHS people who advised me to go onto Carer's Allowance advised my partner to make a will less than 2 weeks before she died. Why did they not advise us what would happen with her estate when we became carer/caree? Now I'm left with nothing and her family get everything. They've visited me more times since she died (to check the house is in order) than they visited her in the 7 years I was with her. The whole system is pathetic.
Weemart,

It will be interesting to hear what sort of a response you get from Not Here to Support.
The response I got was "Go talk to Citizen's Advice". That's their f***ing response after 4 years of THEIR neglect!!!
I'm sorry you are going through such a rotten time. As far as the earnings/carer's allowance is concerned - I wouldn't let that drop. I too earned a very small amount of money (about £600) in the course of a year, and I sent in all the supporting documents, showing that this was over one year - and no more than £40 in one week - they got all the payment advices showing the hours worked in a week, but no, no - they decided I'd earned it all in one WEEK. I appealed against it and once they received the appeal everything was put on "hold" so to speak (even though by then they had informed everyone and I got a letter saying I owed a full year Council Tax so had to do battle with the Local Authority). That was in September last year and I still haven't heard a word on the outcome on the appeal, but all my benefits have been reinstated in the meantime. Quite frankly, if I had asked to be paid in cash and never declared it none of this would have happened - kind of tempts you to take the dishonest route doesn't it?

So I would definitely appeal against that decision.
Yes, very good letter, and you absolutely must appeal against the failure to pay CA because of the one week problem. Good luck!