Epilepsy Cnt

So now son has a social worker. He also has the Community Health Team behind him. We (me and son) were told at the assessment what help we would be getting. Son is released from pyschiatric unit as his behaviour is back to normal.

Takes a week for social worker to come out, she does yet another assessment, even though they work in the same office as the Learning Disabilty Team, their computer systems are not compatible. I ask if they have ever heard of hard copies!!!! (They are meant to work together). Told son would be getting help off a scheme desgined to help people like him, for 6 hours a week. Met the manager of scheme he said the same thing. Also offered a direct payment scheme for another 8 hours a week. I accepted.

Forward to a month later...we have in place NOTHING!!!

Son is now going backwards again. I phone up his social worker to be told she in on sick leave, when I asked about his statement was told the same thing she is on sick leave...I retorted " What so no one takes over her cases?! No wonder we have children dying who are under care orders!".

Once again I emailed local councillor Lyndon, the next day I had three phone calls all for appointments the next day. Social Worker phoned as well (seems she was back)...asking if I would like her to speak to son, ERRR No...he thinks you are nothing but a liar, you promised him a lot and he got nothing! You will just make things worse.

So what happens, well son gets his eight hours with the private firm (they charge £13.90 per hour...or £55.60 for four hours). He gets another six with a community living scheme which is going ot teach him money management, how to catch buses etc etc... they start off at an hour the next Monday ' Start slow and work your way up', I agreed with this knowing that the best way with this is to ease son into it. the private firm come on the Thursday and off he goes for four hours.

The following Monday his hours were up to two.. and the next and the next and the next etc....I phones his social worker to ask where the other hours are..in the the two hours he gets all he is doing is, going to Asda or Morrisons for a cooked breakfast (and by car) then have a wander about. Social worker tells me that the community living scheme do not have the capacity to do the six hours but they are trying to fit son in with another two...as the social worker tells me they just haven't got the capacity ..., my answer was...you know what I really don't care, this is in his care plan and you haven't met his needs... of course I lose it at this point and end up putting the phone down on his social worker. Once again my local Councillor comes to my aid...the next day I get a phone call Mencap are going to step in and take over. Which they have done.

At the moment we are at the place where son goes out for fourteen hours a week, and another is going to be added in a few weeks (so he can learn to cook)


Now all we need to do is get his Meds right ( which can take years) the Community Health Team in my area have been absolutely fantastic on this. it may even be that sons seizures are never really controlled just better managed...