Agnes talks about her problems with self-directed support.

Good morning everybody, its Agnes from Coatbridge calling.

Its nearly time to choose the words for the ( ) to make this report. As you all know I work tirelessly on my own behalf to get self directed support. Not sure what its called in England but in Scotland that’s what it is called. And there’s four options when you are awarded self directed support and I chose option two, which was that you had to choose a provider or carer, and em or support, not care, support. And that you were in charge and that it was flexible.

So what a disappointment this whole shebang has been. It started in the 28th of January so all of February I’ve been trying to get a handle on what the processes are. Its like honestly trying to drive a car, nobody teaches, you’ve never seen a car before and nobody shows you what the gear-sticks are and how it moves forward and backward etc. And its trial and error that you’re getting to know the systems and processes that appear to be in place but not written down. And then of course there’s the etiquette and then you don’t, you’re trying not to hurt peoples feelings.

So its been, I don’t know, in one way its been great, I don’t know what I would do, I get 2 girls, mornings if Im lucky, em, every week for 3 hours and I don’t know how I lived without the help, but the frustration, is the admin side of it, of the process side of it, in trying to find out who is coming to me today, em, its very perplexing, bamboozling.
And then you get a shared rota and I will know who is on the rota the week before or in plenty time and again its the second rota in March I believe and I don’t know who is coming in today.

Its very frustrating , Im very emotional about it because on paper it should work, its the people in the administrative and the higher level that seems to have the complication, its not the girls and the support workers who are coming through the door, its managers and above who seem to be complicating matters and communication between managers and myself in that, is non existent at the moment, they’re always in meetings and I’ve just lost the will to live. Im very emotional with it all.

But, my daughter’s just been on and shes saying travel hopefully mum, think of the positives and I am trying so hard but I really just want to put my head down and cry, and lock the door and let nobody in and withdraw into the safety of my own home, So, Im going to do some mindfulness and then ( ) .

But thank you all for listening to this frustration of bureaucracy, admin, administration, whatever you want to call it because its been the bane of my life since February the 28th as far as self directed support and my chosen provider. I laugh at thew word, to think I chose this (laughs), its like choosing the man that you’re in love with and its almost like you find out you’re in love with the idea but when it got down to the nitty gritty its gonna take a while to make this marriage work and its going to take a lot of work but it cant be all from my side, it needs to be a 2 way street and how I can make this a 2 way street, I really don’t know or maybe there’s divorce in the papers, don’t know.

Thanks for letting me offload these issues that Im having, these challenges that Im having today, especially after a very poor night struggling to get a breath, much better this morning. So, mindfulness, travel hopefully, put a smile on your face Agnes.

Bye for now.