Who really calls the shots when it comes to care?

Accusations of being demanding (amongst other compliments that have been hurled my way recently) got me to thinking how demanding I actually am.

Par example: I am supposed to (so it was agreed in my CPA meeting in Spring) being having a care support worker, to visit me once a week. They would be taking over the role that the STR worker had in regards to my care plan.

Anyone who has read my blog, over a period of time, will know that the care worker hasn't materialised. I can only assume because of lack of funding..what with Beds and Luton MH Partnerhsip Trust waiting for a take over bid to be completed. Hence, spending on staff (other than management level and above) has been put on hold.

So, the make shift agreement with acting care co-ordinator was that she and STR worker would alternate weeks until such time as.....I don't know.

After my father's suicide attempt, the care co-ordinator felt it necessary to keep a closer eye on me (due to my state at that time). Problem was STR worker went away on leave...care co-ordinator covered for this but since STR worker has come back from leave, they have gone sick. I haven't seen my STR worker for 6 weeks or care co-ordinator for 3 weeks.

I haven't been ringing up anyone demanding to see them. I did have a really bad day and rang the CMHT offices for support. Was advised, by duty social worker, to go for a walk. In the end, I took extra sedation.

The balance here lies not with any demands (pardon me if I refer to them as needs) on my part but with a system that is in some kind of meltdown.

I have to do a daily check of my diary...so's I keep on top of things that have to be done. On checking it today, I have a CPA5 review meeting tomorrow.

The CPA 5 was put in place by my care co-ordinator. I had to 'make progress'. This, it was agreed, would be done by my STR Worker taking me swimming once a week. Granted the first of those appointments were cancelled because there was a problem with father (mix ups about sending him on home leave from the acute unit) and I had tried to ensure that this would not happen...and certainly not so soon after his suicide attempt. The confusions over his 'capacity to cope at home' got me in a frenzy. Call me a drama queen but having had to organise emergency support after his suicide attempt, I didn't think it was safe to send him back on home leave.

Again, anyone who has been reading my blog,longer than a week or so, will know my father has been desperately ill for 2 years and I have been constantly trying to get the right care in place for him during this time.

Back to the CPA 5. The swims were put on hold, for 2 weeks, when my STR worker went on leave. Fine by me. It took 2 weeks (from being back off leave) for them to contact me to organise the next swim and the day before that was scheduled to take place, I got a call from CMHT saying STR worker was on sick leave. So I am to have a review .....based on the Trust's 'recovery model'...on something that, through no fault of my own, has not taken place.

I am not angry with STR worker. She can't help being sick but the care co-ordinator was insistant (I think because of pressure from a higher management level) that I had to do complete this CPA 5 programme.

I wonder if I will be blamed for the CPA 5's lack of completion?

And you know what...if I believed the care component of my DLA would go to a service that could deliver in regards to my care needs, I wouldn't begrudge it. If there was a guarantee that the care would be there as agreed, that would be okay with me. The problem is....the money will not go to support people's care needs. I am not sure where it will go. In that regard, I would rather Anon got his/her tax back because I would rather they had it than it be eaten up by a system that places demands on people with disabilities but then does not uphold it's end of the agreements.

I am just so grateful that I have friends and my daughter and her boyfriend(not without their own issues/demands on their time and lives to be getting on with) who rally round to take me places..or I doubt I would get about at all.

And I am sure I will be shot down again for not being able to get out and about on my own as the norm but that is how it is for me.

I have lorazepam and I use it as necessary (most probably more than I should) but without it, i would be totally fekked.

C'est ma vie.