Taking Control of my Own Care -Direct Payments

 

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Yesterday despite feeling nervous I found myself sitting in an hotel lobby area trying to look relaxed and focused as we interviewed the two candidates selected to attended. I think the hardest thing for me was trying to explain what my needs are, and the reason I need support.

How do you explain in a very brief time frame about Dissociative Identity Disorder without giving prospective support workers too much detail, especially when few have heard of DID. It’s funny but I can give a presentation on my condition to a room full of mental healthcare professionals and it doesn’t daunt me, but in these 1-1 interview situations I find it quite daunting just trying to explain what DID is.

Maybe that is a result of my own fears about stigma, in a room full of people I know that even if someone holds biased beliefs about Mental Health I most probably wouldn’t notice. The sheer volume of people is in a way a protective barrier from the stigma that some people hold, there’s a comfort in knowing I will always find someone in a room full of people with some form of mental health issue themselves, so an ally against any skepticism and stigma.

Yet I find on an individual basis I am more likely to see the stigma if it exists and I find difficult, I guess it makes me feel more vulnerable. It is not easy trying to explain to random strangers who have often no interest in DID, that my mental health is the result of trauma and the reason we have care needs.

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The people we saw yesterday were both really nice, but one of them was more willing and open to finding out more about my diagnosis. They spoke to me and my daughter who acts as the employer in respect of my supports workers; she basically manages the direct payment paperwork,  on equal terms. I didn’t feel like I was being judged, stigmatised or treated as different in fact I felt a sense of equality that is often hard to find even at conferences; where both professionals and experts by experience are present.

The end result of the morning interviews was I thought I had at least 1 potential support worker, but I couldn’t just make the decision. I spent a few hours talking internally ensuring that all of me were happy with the decision we wanted to make, it’s crucial as this person will spend hours in our home. Support workers help us so much and yet they see us when we are both good and bad, they will be around when I’m overwhelmed, sad, upset, tearful and many other emotional states too. They see inside my world and know a lot about me, I need to be able to trust them and also feel safe around them it’s a crucial decision.

In the end we made a decision and have offered them a post, I always dread this offer bit as in truth they can now reject us and yes it has happened and it hurts. Thankfully the lady in question said yes and subject to all the checks that now have to be done, she will start working with us soon. I’m glad we have found a suitable person, and I’m sure we will get on fine and soon settle into working together.

Of course we needed 2 staff and there were other candidates, I can’t as yet decide on the others so have further work to do before making a final decision, it maybe that we have to do further interviews I guess only time will tell.

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The concept of Direct payments is a good one, it gives me and my family the ability to control who cares for me, and put us in the driving seat of these decisions. Prior to direct payments care agencies or specific aftercare companies chose who came into our home, they dictated what happened and when. It felt as if in a way I was still in hospital lots of control, rules and regulations, they’d write copious notes about us and I wasn’t allowed to read them. If I had issues with anyone I would have to go through the various company protocols to raise them and I often felt judged.

I have had some really good support workers, dedicated professionals who not only empower me but treat me with dignity and respect. Some have stayed a while whilst others have been with us for only short periods, I felt proud when one of them left to become a psychologist I knew she’d be great and another went off to university because her time spent with me inspired her to achieve.

But sadly I have had those who have failed miserably too, I had one person who would walk into my home, put on the radio and fling open all the windows even if I was cold. When I complained I was seen as the problem, no one understood this wasn’t a working environment to me but my home.

At one point I had staff 24/7 so night time support was the norm, more than one support worker felt it was ok to sleep and snore loudly on a waking night shift. I was awake because of their snoring and yes I can laugh about it now but at 3am in a morning following an horrific flashback It wasn’t funny.

Care agencies are run for profit, in my opinion they put additional barriers between the client and the support workers. Direct payments have changed the way my care is delivered and it’s working better, the interviews are taxing but they provide us with opportunities too. For now I feel in control of my life and that is simply amazing after years of being controlled.

Copyright DID Dispatches 2014

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