Equality Rights of family Carers

I have read that family Carers have rights to support their loved ones in the NHS National Framework of CHC and the NHS’s Consitution, but all concerned have denied me supporting my Mum, thus her not able to qualify for CHC.

Are there similar rights within Social Care? As the Social Workers that have been involved have all brushed me aside with the phrase, ‘Your Mother has Mental Capacity’. Surely as close family (ok the only one) I have a right to support my Mum, even under the Human Rights Act; which stipulates Right to Family Involvement?

My Mum has always wanted my involvement, but how officials/‘professionals’ involved, who have discriminated against my involvement, have always asked questions to my Mum for her to end up answering in their favour. It’s disgusting how they get paid to manipulate to suit themselves, when we should be all pulling in the same direction.

My son is now 41, severe learning difficulties. Generally I don’t say much about my struggles with officialdom. For 41 years what they do or don’t do has controlled my life. I used to be very slim, fit, full of beans, ready for anything. By the time he was 16 my health was wrecked. I developed kidney cancer, when I asked the consultant why, he told me 25 years without a holiday didn’t do me any favours. I have been repeatedly bullied and punished for a crime I never committed. They have even cheated me out of thousands I should have been paid for caring. Who cares about us? No one!


This is how I feel.

Officialdom does indeed control our lives. I have had 24 years of it so far…

So unfair we have to fight so hard.

So so sorry BB for what you’ve had to put up with, it’s devastating. I thought there was a Carer’s Zsar out there? Covid-19 has to shake up the system somehow. I’d have thought + hoped CarersUk was fighting out corner.

I have looked after my disabled wife over 20 years now , what help have I had absolutely none, I gave up fighting 6 years ago , just not worth the effort.

I looked after my friend for over 10 years, what help did I get, none.

I arranged an advocate for him and was refused access to meetings, he has a right to privacy you know.

Yes but I was round there everyday, I know everything, I do everything.

Cleaning, cooking, bills, phone calls, out of hospital care, everything.

The advocate didn’t do anything, complaints, letters, no.

The advocacy was ended, not resolving any of my friends social care issues.

And left me doing all the work.

Shouldn’t I have had a carers assessment arranged?

Don’t these workers think, how about the poor unpaid carer?

What is the point of the Care Act if it is totally ignored.

I have tried again this year to get some help, thwarted at the first step.

The we don’t this, we don’t do that Act that all paid workers sign up to.

Or the we have lots of holidays and days off act.

Every day I am fighting.

And I read today about a worker at the council getting paid £80,000 a year.

That’s a staggering amount, plus pension etc.

He’s not going to living on baked beans when is 65 unable to heat his house.

I haven’t had a penny carers allowance, refused carer grants, didn’t even get my free massage session.

It would be more useful to get proper care instead of massage.

Had another bad day today and plenty more to come.

Sorry to hear that London bound

The days are certainly tougher than ever, the longer you care. And especially right now

Its like doing a job which pays 50k before stamp, only to be taxed down to 5k, and then to give a large part of that up as well.
Except worse, because when the work day was finished, admittedly I still had to come home and deal with things like we all do, but you knew the work day itself was done with. I had rights, felt valued by my peers and was not labelled economically inactive and written off as a failure through choices I was never given the opportunity to actually make, and situations beyond mine or anyone else’s control for that matter for which nobody could be at fault.

On the subject of capacity, there should be a balance between objective and subjective thinking but in reality we have reached a point where as much as the MCA is touted, it teeters on the latter to suit the narrative of the party dealing with the individual, you’ll find cases where as quick as they proclaim the presence of capacity because it works for own aims, they will just as quick U-turn and suggest otherwise in the name of forcing a so called “best interest” agenda which has an equally positive outcome for that party,

As for health… you would be forgiven for assuming I am much older but I am in my late 30’s, I really looked after myself when I was younger but some bad luck with a sprinkle of funny family genetics mean I am facing being in a very dire situation in years to come (not great as is, hard to imagine it being worse) I worry frequently how those I care most about will manage because I know in at least 2 cases they will not, and the system has already demonstrated it will make minimal effort to protect them.

Hampshire’s Head of Learning Difficulties earns £118,000 per year!

I had fun with a Social Worker she insisted my brother with LD had mental capacity to answer questions himself, I said carry on and walked into another room lol!!! within five minutes she came for help as she couldn’t make him understand :slight_smile:

Lindi, why do they think they immediately know better than a family member, it drives me nuts!!
However, if there is a problem, they expect the carer to drop everything at a moments notice.
Talk about double standards

Hello Butterfly68,
Sorry to hear about this, I have passed your questions onto our helpline advice team and should have a response in a few days. Alternatively our adviceline is now open Monday-Friday 9am-6pm: 0808 808 7777 if you would like to discuss with one of our advisors who will be able to give for some more specific information.
Hope this helps and let us know if we can do anything else to support

Could you maybe look into getting power of attorney for you mum and that way it keeps everyone right.