Philosophy of The Big Society

David Cameron gets to be God!

Monday, 14 September 2009

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 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'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.


  1. Fascinatingly flexible CPA's are.

    Subject to wonking about quite a bit .

    I tried to get a certain person of staffhenge to communicate after a staff member left the ancient trusty monument and when I nailed them they promptly had two weeks off "sick"...

    I mean come on ... I was only using tinky winky drawing pins at the time not full 10 inch nails..

    CPA's are bullshit and just go off walking and wandering the wards by themselves . They actually become disembodied and probably need treatment for dissociation ...

    They come back to you sometimes claiming they don't know who the fuck you are ...

    I hate that . My identity crisis is worse than ever now ..

    Mine said :

    "I do not care if your name is on me - I want to be independent and live with staff and drink tea a lot ... "


  2. Ha! ha!

    Love the fact that I am told that the CPA 5 absolutely, had to be, totally essentially, done (for the good of the bureaucracy) and obviously it doesn't.

    It seems the bureaucracy can bungle along perfectly well without it. Or perhaps is more essential that there is a piece of paper lying aside it's buddies (in various states of non completion) evidence that CPA's do exist (rather than just being a figment of the imagination).

  3. Its mad to be mad and madder to be in a mad system that's mad ..

    Obsessive Compulsive CPA disorder hits the services once in a while and then they get tough with the patient

    One way or another they will "include" us ...

    The wagging finger of "You will be included" shakes at you .. Your CPA even develops a hand and does it ..

    Its no good complaining you are seeing wagging fingers either - they will not believe you...

    I have observed the CPA wagging finger syndrome on many occasions and finally it collapses into a cup of staff tea which it starts stirring ..

    Moral of the tale :

    CPA's go soggy and will get dipped in staff tea - or will have sick periods where CPA's vomit here and there

    I think CPA's are probably anorexic .. Yes, they starve themselves and go so thin - you barely think they exist ...


  4. Somehow I get the feeling that I exist to be eaten ..I may become part of the Free-cake movement..

  5. It's really a case of how long is justifiable to keep cake in captivity.

    Anything more than half hour is me!!!!