ME - aids and adaptations?

LittleMsMandy

I find it very disturbing that social services have treated you in such a manner ,i.e. dictating how you should or shouldn,t live your life and for them to tell you to just live off takeaways and that you don,t need to go out ,etc is appauling : take this matter up with your MP as i,m sure he/she will also be shocked and outraged that social services have behaved in such a manner! Why not try advertising in your local shop or newspaper for a part-time carer / home help if social services won,t help out as i,m sure there are lots of people with experience in the care sector who are looking for work . Good luck :0)

Paparika

I agree with littlemsmandy, ss have treated you appallingly and i would be complaining and asking for another social worker that hasn't been trained via a text book but is old enough to experiance real life

Ames

I can't even get to the point of having a social worker to complain about, I just phone the call centre for an assessment then someone rings back with the excuses. The GP I saw today was new and obviously not prepared to support me, so I can't do anything till I see another one who will. I'm not sure I've got it in me to fight for that as well as fighting the ex at the mo though.

I will take it up again when other things are sorted though, my mental health outreach team said they might be able to help, and I'm seeing my NHS health trainer tomorrow, I think I need to get support from as many areas as I can if I want anything to happen.

But again, if they don't provide or pay for the help I need as policy, there's nothing anyone can do, even my MP.

Paparika

i got through to the ss with home adaptation services my local council provide, only when i ring the number do they tell you they are ss.

can you check on your local council's website for this will this help?

vikki_louise

Hello, mine was rubbish, I was bedbound and the only thing they gave me was a toilet frame. They also were going to help with various things and would be in touch "next week", I didn't hear any more until FIVE YEARS later! The OT had left and the replacement had found my file and wondered if i had made a full recovery (but still didnt give any help), some people how ever get lots of help, it seems very hit and miss

Ames

Thanks everyone, I'm going to phone the ss call centre on monday and try and get past the bulldogs to get an assessment. This time I'll be making a note of names and dates, and if I don't get anywhere I'll complain until I do.

Thinking things over I've been getting annoyed with the GP I saw, he was young and clearly didn't know my history, but instead of just dismissing me with 'ss wont help you' I think he could have asked me more about the situation. Needless to say I'll be putting down my usual, more helpful, GP on any forms.

bitsandpieces

Ames wrote: »

Thanks everyone, I'm going to phone the ss call centre on monday and try and get past the bulldogs to get an assessment. This time I'll be making a note of names and dates, and if I don't get anywhere I'll complain until I do.

Good luck! - you might find that if you ask the name of who you're speaking to, and then ask to speak to a supervisor, they become more helpful anyway...

They don't offer help with cooking, cleaning, washing or dressing, so there's no need for an assessment as they can't help with my needs anyway.

:eek: I don't think I know an authority in the country that doesn't do this for some people (even if it's outsourced to an agency or similar). I'd wonder what they *do* think they offer in terms of care, if none of these are provided.

Mrs_Boo_Boo

I'm an OT so thanx for the lovely feedback we do our best but unfortunately we have to work within limited criteria. I work for the NHS but we still have to take into account Social services Fair Access to care criteria which is either substantial or critical in my area. Anyone falling outside of this does not qualify but may be directed to private services. You may get more action if your GP can refer you to a mental health services adults team or community rehabilitation. There are usually OTs within these teams and in my experience you may get a quicker response than social services who are always very busy.Social services in my area do not pay for housework or shopping anyway but have you thought about direct payments which may fill the gap? Obviously its hassle because you employ a PA and have to deal with all the wages etc but they can help you to manage this. Also as a previous post charities are very helpful so say you were assessed for some equipment but social services could not provide it you may get funding for this. the OT may have to write a letter of confirmation. If you or a relative was/is in the forces SAFFA are very good for this. Worth exploring.
Good luck I know its not easy when you are ill.

Ames

I am in touch with a mental health community outreach team, they said they might be able to help with social services.

Interestingly, shopping is the only thing I have been offered help with. I used to have someone come every week but had to cancel it. They didn't turn up half the time, and when they did they made comments about how they had to get to someone who really needed the service. One even bought me hand washing powder instead of the washing machine tablets I'd asked for. If I could wash all my clothes by hand I'd be able to do my own shopping! Also, I never knew when they'd be coming, it could be monday one week and friday the next, so I never knew how much food to get in. All in all it was more hassle than it was worth, especially when there's online shopping and delivery. Then three years ago when the last lot of trouble started with trying to get ss involved they asked me if I could get to the local shop, so obviously were asking in relation to providing shopping help.

I was set up for direct payments before after being assessed as needing 10 hours pw care. But I had to drop out of uni and so it was withdrawn, as I had no reason to leave the house I was told I didn't need to get washed or dressed and therefore didn't need the help. That was 3 years ago though.

The other problem I have with the idea of DP is if my mental health would be up to interviewing people and then keeping up with the paperwork, paying taxes etc. I was told there'd be help once it was set up, but I have problems with anxiety when it comes to using the phone and things, so I couldn't even manage to get the ad in the paper! I'm less embarrassed about asking for help now though, and so I wouldn't mind explaining to people that I need help with that in order to get it sorted.

I live in a council flat, and the council have disability teams and OT's, do you think it would be worth me getting in touch with them?

I'll see what happens when I ring the call centre on monday.

KxMx

I got in touch with Social Services who sent out an OT to assess me (I also have ME). Through her I got a shower, bath board and grab rail which have been such a lifesaver1