Carer's Rights

Share information, support and advice on all aspects of caring.
I am not sure if I am posting in the right place, but thoughts about this kept me awake last night and I wanted to see what other people think.

I feel really disturbed that the rights of the carer seem to take such a back seat to those they care for?

I 100% believe that those receiving care need to be safeguarded against abuse and unscrupulous carers. But what about those who care for them? There just seems no safe guards in place for them being in unreasonable or abusive situations. If there person they care for has mental capacity they just seem to have no rights if the person doesn't want extra help and often the only way they can get any respite for themselves is to make themselves homeless.

What of those that out of love have moved in with a loved one (often for many years) and find themselves homeless if that person geos into care? Or just can't going on caring for that person and end up with no home, no money, no job and possibly disinherited. Shouldn't they have some sort of rights over the home they have lived in even if their name isn't on the title deeds? Maybe they do and I am missing something?

I first felt desperate about this 3 years ago when my Mum who was full time carer for my Dad had a suspected mini stroke. Dad was adamant he wouldn't go into respite or have carers in for him and because he had competency he couldn't be forced to. He had massively high level 24/7 needs and I to be honestly I doubt he really had capacity to make these decisions. But a social worker deemed he did and me and my sister were left trying to care for them both and hold down jobs and care for small children.

Later on he wouldn't sign the financial assessment forms for additional help so we were all left to plod on caring for him.

When he was finally admitted to hospital this year I had to move my Mum out of her own home to ensure he wasn't discharged. Despite this being 50% her home too.

It seems to me that fulltime carers are often just as vulnerable as those they care for. My Mum ended up being diagnosed with dementia, I am sure partly caused by caring alone 24/7 for so long. Yet their rights are few and far between. Or are there rights that I am missing and need to be made clearer for people? If it is the former I really want to do something about this. Lobby my MP, start a petition, do something.
Hi Sally.

Short of the " Right " to care for our caree until we are too exhausted , medically unfit or dead , there are very few rights that do NOT need a carer to take measures to enforce ... including legal ones.

Care Act ?

Sure ... there are " Obligations " imposed on the LAs are far as assessments and subsequence support are involved but ... very much hit and miss ... the Luke Davey case in point ... and thereafter , the carer's ability to fund such support if it comes with a price tag.

Carers " Rights " Day ?

In reality , little more than a publicity exercise and ... for far too many carers ... an insult given the so called " Rights " we do NOT have !!!

Even guide dogs and prisoners have more rights in crucial areas !!!

Lobbying ( Lob in bin ? ) / campaigning / petitiions ... all tried and failed ... what have those traditional methods ever achieved ???

Unless carers strike on mass ... systematically take their carees to their LA ... hand over 6-8 hours worth of CA ... EXERCISING THE CHOICE OF THE RIGHT TO CARE IF ONLY FOR A FEW HOURS ... and let the LAs deal with them ... what else would anyone suggest ?

Our Lord Kitch details in plain English what we need as carers in order to survive in the real world , perhaps actually live.

The postponed Government review into social care is now scheduled for the summer.

Even at this early stage , I cannot see any " Carers " having any input into whatever discussions take place ... unless through one's own mp.

2009 ... carers were involved but merely as a " Gesture " before the last betrayal ... separate thread on that one.

Our Lord Kitch ?

A starting point as far as we are concerned.

As for any others involved , nobody will be interested.

In essence , no political party would dare tinker with the " Unpaid " contribution made by family carers.

Asking the taxpayers to make up even 10% of our contributuion is not a ... vote winner.
I agree entirely. In 2004 I presented a motion to CUK's AGM in London, saying that we were like slaves, with no rights whatsoever. I moved that Carers Allowance should be brought in line with the minimum wage, and like employees, we should be entitled to holiday time off, etc. etc. The motion was passed by about 95% of those attending, then "buried" by the trustees who apparently had other priorities. Talk about the tail wagging the dog!!!
We are modern slaves, and when our carees die, can be made homeless and with no income.
I totally agree that carers' rights are completely ignored. Last year I wss attacked by my husband in the early hours of the morning. He had been hearing voices in his head and seeing dead people in his bedroom but the doctor wouldn't do anything about it, saying it was a mental health problem not a medical one. He had a stroke two years prdviously and his logical thinking is nil.

The upshot was that the police had to be called as I was in danger, and ended in me being taken to my daughter's home in the middle of the night and my son having to come from his nightshift at work to stay with my husband until his mental health nurse could be contacted.

He ended up in a mental health unit at our local hospital for three months on drugs to control the confusion in his brain. My family and I wanted him to be taken into a dementure unit (he was 70 at that time) but the consultant and his social worker said he had capacity to decide where he wanted to live and that place was at home with me. We had our local mp on our side and advocates for me but I buckled under the stress of fighting beurocracy and was forced to allow him back home. He agreed to me putting a lock on his bedroom door to ensure my safety at night which was agreed on with his consultant, social worker and our gp athough this has since caused a major outcry by his new social worker and a meeting with 11 professionals and 3 of my family had to be planned to go into the need for this locked door. Thank heavens my hisband's advocate came to speak to him and he told her that he felt the social worker was sticking her nose in where it wasn't needed and that he agreed with the door being locked.


He is now totally bedridden with carers in twice a day and nurses every morning. I have no life outside looking after him. I can't leave him alone for more than an hour at a time in case he tries to get up and falls. He has no understanding of keeping himself safe. He thinks he is capable of doing things that he did before the stroke which ofcourse he can't.

I was feeling unwell some months ago with dizziness and happened to mention it to one of his nurses. She took my bloodpressure and it was 178/101. She immediatley said I had to get to a doctor as "WE NEED YOU TO BE WELL TO LOOK AFTER BRIAN".

Unfortunately we aren't important in the professionals eyes. All they see is a someone who looks after their patient. We come second. That heavens I have a locum doctor who hasn't seen my husband and treats me as the patient and is determined to help get my blood pressure down, as he understands that I am in a very stressful aituation. Nice to have someone on my side for a change.
Chris From The Gulag wrote:
Fri Dec 08, 2017 9:57 am
Hi Sally.

Short of the " Right " to care for our caree until we are too exhausted , medically unfit or dead , there are very few rights that do NOT need a carer to take measures to enforce ... including legal ones.

Care Act ?

Sure ... there are " Obligations " imposed on the LAs are far as assessments and subsequence support are involved but ... very much hit and miss ... the Luke Chambers case in point ... and thereafter , the carer's ability to fund such support if it comes with a price tag.

Carers " Rights " Day ?

In reality , little more than a publicity exercise and ... for far too many carers ... an insult given the so called " Rights " we do NOT have !!!

Even guide dogs and prisoners have more rights in crucial areas !!!

Lobbying ( Lob in bin ? ) / campaigning / petitiions ... all tried and failed ... what have those traditional methods ever achieved ???

Unless carers strike on mass ... systematically take their carees to their LA ... hand over 6-8 hours worth of CA ... EXERCISING THE CHOICE OF THE RIGHT TO CARE IF ONLY FOR A FEW HOURS ... and let the LAs deal with them ... what else would anyone suggest ?

Our Lord Kitch details in plain English what we need as carers in order to survive in the real world , perhaps actually live.

The postponed Government review into social care is now scheduled for the summer.

Even at this early stage , I cannot see any " Carers " having any input into whatever discussions take place ... unless through one's own mp.

2009 ... carers were involved but merely as a " Gesture " before the last betrayal ... separate thread on that one.

Our Lord Kitch ?

A starting point as far as we are concerned.

As for any others involved , nobody will be interested.

In essence , no political party would dare tinker with the " Unpaid " contribution made by family carers.

Asking the taxpayers to make up even 10% of our contributuion is not a ... vote winner.
Really interesting points Chris, I will digest all that properly later as loads of info in there. I think your points about "guide dogs and prisoners" having more rights really hits the nail on the head.

Direct action of going on strike is also a really interesting idea. I guess the issue is that most of us don't feel happy leaving our loved ones to struggle on their own, which is why we end up in these awful situations.

An "obligations" under the Care Act, really isn't the same as proper rights is it?
Feel free to digest whatever.

Some have been around since 2004 when the very first forums sprung into life.

A few tend to haunt many readers ever since.

Only carers themselves have the ability to change things.

That is one basic fact that has never changed !!!

That family card again ?

A concept that drives into the very heart ... and soul ... of caring.

And doesn't the System play on that ... for it's own purposes ?

The festive season ... take away that family concept and ... what's left ... especially for lone carers ... I was one.

Caring is a collective responsibility in a so called civilised society ?

In CarerLand , we really are ... alone.

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Lord Kitch ?

https://www.carersuk.org/forum/news-and ... rd%20kitch

Lord Kitch Recruitment Poster : Our Tombstone : ALL Major Issues Under One Thread.
bowlingbun wrote:
Fri Dec 08, 2017 10:00 am
I agree entirely. In 2004 I presented a motion to CUK's AGM in London, saying that we were like slaves, with no rights whatsoever. I moved that Carers Allowance should be brought in line with the minimum wage, and like employees, we should be entitled to holiday time off, etc. etc. The motion was passed by about 95% of those attending, then "buried" by the trustees who apparently had other priorities. Talk about the tail wagging the dog!!!
We are modern slaves, and when our carees die, can be made homeless and with no income.
That is very depressing.
Yes, there's such a fuss about employers who are paying less than the minimum wage, yet at the same time the government's system means that some carers, like me, a pensioner, get absolutely nothing for the care they provide, even when it can be as much as 168 hours a week!
How much longer will it be before family carers are treated like everyone else? If anyone other than a family carer provides care, then that is classed as work. So why isn't it classed as work when we do it?
How many other situations are there where if you get a second job, you have the income from the first taken away from you? CA is only payable if you earn under £116 a week. Even worse, it's not removed pro rata. So if you earn over the limit you have it all taken away. There a case on the forum, someone worried as she ended up earning £120 a week. It would be fairer if as she was £4 over the limit she lost £4 of CA, not the whole jolly lot!
It would be fairer if as she was £4 over the limit she lost £4 of CA, not the whole jolly lot!
time the government's system means that some carers, like me, a pensioner, get absolutely nothing for the care they provide, even when it can be as much as 168 hours a week!

Issues that have not escaped our Lord Kitch ... even if they have tended to be ignored and / or played down by all those connected to carers.
I wrote a long reply to this but because someone else has posted in the meantime it's disappeared into the ether. No wonder people don't use the site.

Can someone tell me about Luke Chambers please. Can't find anything on this site and google results are all about a footballer not a carer.