Impossible Advocacy Service

I have been trying to access the new Advocacy Service since January. They are impossible to communicate with in where I’m having to re-explain things and end up going round and round and round in circles whoever I talk with.

I put in an official Complaint a few weeks ago, that was refused being ‘upheld’, basically they all stick together. I was invited to go to the next level, they seem to set stringent criteria in needing evidence; so I mentioned not only that I am on long-term sickness with Stress, Anxiety, Panic and Depression (which all concerned are well aware about), but that I shouldn’t have to have to feel my life isn’t worth living with encountering more stress with barriers when they claim to be ‘fully supportive’ and are focused on ‘building a strong working relationship’.

I have spent considerable time explaining to the people involved that I hoped they would be prepared in meeting me where I’m at, and not for me to have comply with their unhelpful systems and attitudes No matter how I have tried communicating with them, it falls on deaf ears. Even when they stipulate they are waiting for my ‘instructions’; take for example the other day I agreed via email to a time/day to resolve issues with who I discovered my Advocate was the Manager. By agreeing to discuss things, that I hoped was indication I wanted to progress with things. On the phone I stipulated that I needed to keep the phone call brief. But this Advocate drew me into discussing things I wanted to leave for another time, as I repeated I only wanted to focus the phone conversation in discussing what I needed to be resolved. But they just hear what they want.

How are Advocacy Services supposed to operate? As I am flummoxed as to how this is the 2nd one I am finding impossible to engage with, like they are all the same narrow-minded jobsworths. The previous one led me into a false sense of security, where over a very long time they caused massive problems.

I have sent an email for the next stage of the official Complaint, but don’t hold out any hope. The only way this is going to end is when my Mum’s gone, and so will I. I shouldn’t have to deal with such a hostile, never ending, uncompromising existence; totally soul-destroying.

I had the same issues with advocacy, I referred my friend to advocacy to get better and proper care for him, his care package was abysmal, carers who just didn’t understand his illness.
His last carer could be at 4pm leaving him on his own for 15 hours, no emergency care , no night care, no family to help.

I rang and rang , we were attending meetings needed to meet up with the advocate, my friends rights, unpaid carers rights etc.
The Care Act, the Human rights act etc.
We needed to be fully prepared for this meeting, I rang and rang the advocacy service I spoke to the manager she couldn’t provide an advocate for this meeting, that’s the idea of being an advocacy provider to provide advocacy, well that’s very helpful.
An advocacy service that can’t provide advocacy.

We attended the meeting not having a clue on rights , we both stuck our ground but we may as well not bothered.
I asked for advocacy myself but was refused as the local carers centre had the contract for helping unpaid carers in my area yes but they refused to help saying I needed advocacy.

About a year later I received a phone call, hello I am your friends advocate, anything could have happened, my friend could have ended up in hospital, in care or dead.
I explained the case fully to the advocate but was then banned from contact , I emailed the manager that I had originally talked to, she had left but another manager had taken over.
I again explained the whole situation, gave her both barrels but again was banned from talking to her.
I put in a complaint and the lady that dealt with complaints was the lady I had talked to, so in effect she would have to investigate and discipline herself.

I was then put onto another manager, how many managers do they have in this place?
And explained about safeguarding issues, my friend was vulnerable and living on his own, I was told I would have to contact safeguarding, but surely that’s the advocacy agencys job when concerns are fed to them.

I was exhausted by then I had been providing night care for months, sleeping in the day time.

Looking in the terms and conditions, going through the complaints, they can allocate an advocate to help with the complaint, so one of these managers was going to find me an advocate.
I waited and waited and waited but they couldn’t find an advocate, they have about 6 managers there and they can’t find an advocate?
The advocate attended my friend, but I was banned/refused the meetings, but surely I had a right to be involved?
The Data Protection Act, yes but I know everything anyway, I do everything, I am his unpaid carer, next of kin and emergency contact.

My friend told me what happened anyway.

The advocacy was ended, nothing was done although I have learned so many things that the advocate should have done, could have done.
My friend died shortly after, never having received any more care, not one second of extra care.
I see all these websites, success storys, case studys, that these places that help the vulnerable and mentally ill.
These places claim they are sticking up for vulnerable people, giving people back control, but I don’t think they are.

The advocate should have fought like a tiger for my friend, I honestly reckon she spent less than 10 hours and there were so many other issues to sort out.
The advocates are again supposed to refer to places that can help, my friend had alsorts of issues not just social care.
And should I have been involved, my friend was very ill, and couldn’t communicate very well , he needed me there at these meetings.

I looked at the paperwork, what a load of rubbish, full of inaccuracys.
And it was clear that my friend should have been on CHC, the advocate should have complained/appealed about the previous application and stuck with my friend till the end.

Us unpaid carers just have to do so much and we don’t get paid a penny, all these people at the meetings all getting paid, the social worker, the other social worker, the advocate, all 9-5 jobs getting good salarys.
They failed both me and my deceased friend and they are getting on with their jobs without a care in the world, good salary, good job benefits, you should see the list, good pension etc.
So what now, complain again, go back to this place and ask for advocacy, I still need advocacy to help with my unpaid carer issues?

What I’m puzzled about is, if these Advocacy Services are commissioned to provide the services; and claim to help and support unpaid Carers, that’s what they should do and they should appreciate how we struggle - no if, or buts. They should be doing the job they get paid for.

Very complicated, the advocacy services helps 4 countys, but does not have the contract to help unpaid carers in all the countys but on the front page, they say they help unpaid carers.

So depends who has the contract to help unpaid carers in your area, but my local carers centre doesn’t do advocacy.

So who does?

The advocacy service provide help for disabled and mentally ill people having problems with social care. I am disabled and I have mental health issues so that means I am entitled to help NO because I am an unpaid carer.
But can they help with a needs assessment YES, but I don’t need care as such.
It appears again you cannot be disabled and mentally ill AND be an unpaid carer, but I am.

The carers centre has signposted me to the advocacy service but they won’t help and have signposted me straight back.

The staff simply don’t know what they are doing and I just have little confidence with either.

I want help and support but need advocacy with the carers assessment but not with the 2 places above, been let down too many times.
So what happens in this situation? don’t know.

I’ve been thinking for some time, this one size fits all systems doesn’t work. They claim person centred approach, yeh centred around what suits themselves. Is there are Carers Co-ordinator in your area you can discuss this with?

I just have no idea what to do, who to contact.
As one of my carees says they like putting you in boxes but everyone has different needs etc.

I keep getting directed to the carers centre but they say they can’t help.

I think there was a carers champion who told me about carers allowance, but I am on sickness benefit can’t get carers allowance.

A needs assessment seems to cover only social care needs but not mental illness.
Or issues like Hospital/GP problems, NHS wheelchair problems, finances, debt.
And a lot of other issues I am dealing with.

I don’t know what to do where to go, exhausted all options, I just get told the same places to contact but they just signpost me elsewhere or back to the original refer.

No one seems to want to take responsabilily, just pass the buck, let someone else deal with it.

The council always arranges an advocate for my so whenever I say something isn’t right. He refused to work wit the first two, the third couldn’t understand what M said, or the implications of his LD. M could only see him at his flat on Fridays as he had day services Monday to Thursday, the advocate never worked Fridays! M wants me to advocate for him.