ScienceGeek Report post Posted January 7, 2011 In 2009 I started having support as I was really struggling to cope, this was provided by 2 support workers from different places. 1 support worker was from a mental health organisation and they didn't tell me that after 6 months they cut their support in half, I was only told this at the last minute. The relationship with my support worker deteriorated and eventually stopped, effectively cutting my overall support of 6hrs in half to 3. This support was never replaced. I've been told by my social worker I need more support but yet my support has been halved in the last year. My second support worker is from the NAS. I've had them since late 2009, and in the duration of 2010 I've had my support worker changed 4 times. This has been very stressful as a couple of them were very last minute changes. Everytime I just start to trust them, for whatever reason they leave. I have to spend the energy explaining how autism impacts on my life, build up a rapport with the support worker etc and that takes time. It doesn't help with all these changes. The NAS support is the only support that I get now. I haven't had any support for the last 2 weeks (1 I couldn't do because I was on holiday, but I was here this week). They knew that my most recent support worker was leaving, but only now are trying to sort it out. I was told that they have sorted a new support worker but it can't be implemented in the rota for another 2 weeks, this means that I've been without any support for a whole month! I need this support to keep on top of things, I can cope with a week, 2 tops, but a whole month. I just feel really let down right now. Quote Share this post Link to post Share on other sites
smiley1590 Report post Posted January 7, 2011 i know how you feel can personally sympathise and empathise as i have NAS support worker they more ill then they are there for you half time they don't know what's going on so disorganised services which annoying and frustrating when you have live with A.S everyday is hard work and effort as is! services are unprepared but you expected a autistic based service not to mess you around let you down my support worker was off sick on my session on tuesday the only reason i knew she was through a client who i text who she has she told me she hadn't seen her in ages cause she off sick but no-one from the NAS has told me anything no text phone call my expections are lowered as we go along my care manager doesn't keep in touch unless i ring her with prob don't feel there reliable or there for you like they should be! my hopes with services have been dashed get used to it! feel like you put in effort they don't! i close to quitting the service as feel no point carrying on! i could do better job myself running the service no one seems to nothing lack of communication on all levels within the service .... when support worker goes on maternity which soon in march i don't know who getting step in while she out for months they should told me introduced me but had nothing so far! my review i only got told a few days or week before grr.... i feel last to anything to do with me! and also only one support workers was told about review the other didn't even know wasn't told my support worker gets annoyed if i cancel due to work hours clashing with session times which alot lately but feel that hypocrite really considering annual leave and time they have off sick! Quote Share this post Link to post Share on other sites
smiley1590 Report post Posted January 7, 2011 no one has rang up or checked on me to see if i was o.k this week as had no support worker due to being sick! and other couldn't have due to work hours makes me wish i didn't need the support as getting really fed up ... wearing me down makes more MH probs there and should help and support relieve it but have opposite effect on you and your life even in crisis don't think they'd go out of their way or care! i was positive excited at beginning of starting NAS process of outreach support now feeling anx nervous about how outreach team going to be wehn live on my own in supported living! Quote Share this post Link to post Share on other sites
trekster Report post Posted January 7, 2011 I'm sorry mate I wish you could have my support team. Although they dont know much about autism they were willing to be educated. I also have problems explaining my needs or knowing when and how to explain them. I'm here for you mate and I'm happy to come over and help you with stuff in the meantime. I would put in an official complaint to the NAS explaining that their treatment of you is not on. After all you got an apology for being messed around then they start messing you around again. Quote Share this post Link to post Share on other sites
ScienceGeek Report post Posted January 25, 2011 Still no support and it's been nearly 5 weeks. No news about when it will restart/what time my next session is. I've just sent a strongly worded email to the person who runs the service. This is not on. Quote Share this post Link to post Share on other sites