[yellowted]

I am just about to explode, break down or worse, i am so tired of fighting everything, i don't know what to do, i try my best to help people, be good, kind and be positive, but i can't do it anymore. the reason being i am being kicked from every angle. the primary care trust will not fund the only treatment available for my condition, ths architect will not re do the plans to my spec for my house to be adapted at my expense with a grant for part of it, the grant people will not tell me the amount they will put towards it so i have no idea of my budget, the builder will not give me a quote without the final plans, the bus company i have used for years has now decided my mobility scooter is too big for the bus even though they let heavier wheelchairs and larger kiddy buggies on and the taxi card system set up to help disabled people access cabs left me stranded two and a half hours in the cold dark rain having rerouted my cab to someone else, this means i now am limited to the range of my scooter cos i can't rely on any public transport anymore. I am not eligible for an electric wheelchair because i can side transfer myself (at a push! I can't however mobilise a manual chair outside, but that doesn't seem to matter!) my GP was supposed to fax a prescripton to my pharmacist today and three hours later it still had not arrived, the girl who helps me got dressed is on holiday, i can't get an agency to cover her because the front door lokc is broken due to me having no choice but to ramraid it open to get in until the adaptions are done, which means i had to scooter 20 minutes in a temperature of about 10 degrees max in my PJs and wet pad to pick it up and take it to the pharmacy! i live alone with no family or close friends to support me
and all this is happening now!
how the hxxl am i supposed to keep myself together ?
sorry but i really needed to vent this x

[Leed]

Now wait a minute. You're on social security disability, aren't you? You can get an ELECTRIC wheelchair/scooter FREE or just about free thru THEM. I'm sure your doc would give you a script for one. All you have to do is call "The Scooter Store" or one of the others they advertise on TV. The Scooter Store has been around for years from what I understand, and is probably the most reliable. From what they say on TV, all you have to do is CALL them. I know that doesn't solve ALL your problems, but it would help it you got an electric wheelchair/scooter, right?

I'm so sorry things are all crashing down around you. I don't know why things happen like this. Seems like the rotten people on earth should get the crud -- not good people like you.

Please take care of yourself -- I know you're trying. And keep posting here, will you? We ALL care about you, ya know. God bless. Hugs, Lee

[yellowted]

yes i am on social security, but they don't give electric wheelchairs out to everyone, the doctor referrs you to the wheelchair assessment centre and you get assessed, i was assessed as not requiring one because i could transfer myself! the scooter store must be in America not England where i am as i have not heard of it. I could use my disability allowance to buy one through the motability scheme, but if i do that they will take it all, i will have to still put about £2000 towards it and i will then not have enough money coming in to pay my mortgage or my other disability related expenses like buying incontinence products without spending the money i have saved for the adaptions. ( i have been living 4 years pulling myself upstairs on my bum backwards to get to a loo, bed or bath and can't keep doing this cos my arms are giving out. the local council already take half of my disability allowance to pay towards my care! it is so unfair how through the assessment people more able than me get one free but for me i have to pay in full. i guess it is because i am classed under mental health not physical health but they won't actually say that! my doctor couldn't even fax a script for my meds to my local pharmacy today even after telling the pharmacist over the phone that he was going to.I ended up going to the surgery in my pjs to pick it up tonight (in pjs because i have no carer this week, can't get a replacement one and was too exhausted after getting very cold yesterday scootering to another appointment 4 miles away). ok i know i am better off than most on here, but in relation to others over here i always get the rough deal.

thanks for your kind words Lee i really appreciate them, they are the first i have heard in a while x

[Leed]

Oh dear yellowted, I'm so sorry. I was thinking you were in the U.S. It's my fault -- I'm sorry. Darn it -- They need to make things easier for the disabled in the UK!!! Don't they realize that the manual wheelchairs are HARD to use??? I'd like to see one of them use one for a day -- boy they'd change the rules in a heartbeat! This makes me so MAD.

How can you go about getting "re-assessed" under physical health instead of mental health? Can that be done? They can obviously SEE that you are physically disabled!!! Why wouldn't they changed your "rating?" I don't understand this. I wouldn't think that it would be that hard to change, but I don't know the rules, etc., about that either. Red tape is horrible if it's anything like over here. Dealing with government people is impossible. Do you have an advocate that you can talk to about changing this assessment rating?

I'm just so concerned about you. You need more help than you're getting, but at NO MORE COST!!! The government should eat that cost. I thought health care was FREE there. If you NEED a care-giver, why do you have to PAY for one.? This isn't right.

Just know you're in my prayers my friend. I wish *I* was your advocate cause now that I'm older, BOY can I get mad -- and I would if I couldn't get any action on your part!!! Paperwork would FLY in their offices!!

Please take care - stay WARM. God bless. HUGS, Lee

[yellowted]

no probs Lee, it is a simple mistake that often happpens.

I strongly believe every child in their last year should be made to experience one day in a wheelchair, one blindfolded and one with ear plugs in! they should also be made to escort a mobility impared or blind person on a trip around the ares using three forms of transport... bus, train and own power (legs or wheelchair) they should spend the final day in the week with a brain injured or learning delayed person. just one week and their views will be changed for a lifetime!

Because they are saying my physical difficulties are all caused by Dissociative motor disorder which is a mentah health dx they will not reassess me as a physically impared person only as a mentally impared one! ludicrus I know, but that is the problem I have had from the start and one they will no budge on, believe me i have tried everything to get my dx changed to a physical one with no avail. over here if you are dxd with a mental condition first then everything is put down to your mental health and treated by the mental health team, if you have a physical condition first then stuff like depression are put down to your physical condition and treated by the physical health team and the two teams never do meet!
Health care has never been free to all, that is a myth set about by infultrators who come here with nothing having paid no taxes or national insurance, as they are the ones who get free healthcare, the working people who have paid in still have to pay for most things. due to the recession the government has reduced the amount of money they pass down to the local councils, the councils have billions in reserves for such times but prefer to make us pay as much as possible towards our care and keep the reserves for their pensions! unfair yes illegal no! free healthcare is not available to all, free gp visits and emergency hospital care are, medication is only free to children and adults on certain means-tested benefits or adults with certain conditions like epilepsy though not for asthmatics. same goes for dental care. carer support is means tested, some have to pay it all, some get council/ss help but all have to contribute most of their Disability allowance the only ones who do not have to contribute are those in work who are allowed to keep all their disability allowance for some bazzare reason!

there are no advocates in the borough dealing with physically disabled people and the mental health advocates have no clue how to help me as they are all about getting people to advocate for themselves on things like meetings with their m/h doctors and council housing issues not on the stuff i need help with.

hugs Ted x

[Leed]

It's the same UNFAIR government crap there as it is here. The people in government get all the benefits, while the "little people" that they are SUPPOSED to be serving, get NOTHING. I get so MAD when I think about it. Over here, the senators & representatives get their WAGES & PENSIONS FOR A LIFETIME plus FREE health care!!! Where on earth do you get a job like that, other than in government?? And how FAIR is it, since the taxpayers have to PAY for all that?? Can you imagine the BILL for that?? And of course the President gets the same benefit. So however many senators we've had in the lifetime of our system, that are still alive are getting their wages, pensions & healthcare paid. ARRGGGHHH.

Maybe I should run for office, huh? Yeah, right. Boy would I raise the roof.

[yellowted]

lol x you run for office over there and i will over here...just think of what we could achieve!!!! first thing i would do is set a tax rate of 99% on anything earned over 75k per year! and kick out any buisness that trades here but pays their taxes abroad... give the under dog a chance ... oh boy i could go on for ever! but in all reality if more disabled people were in government or running the transport systems things would surely be run differently, more fairly... oh well we can always hope! x

[-jimi-]

Sounds about how they do it over here. If you have something physical plus something mental, they don't know what to do with you. Mental teams will sigh and say they don't deal with xx physical illness, and if you manage to get help for the physical thing, it will have no adaptation to yy mental thing.

I know for a fact, because I can get help from my autism team here, but they only help fully physically healthy people and making the same demands on me as they do a healthy person (I also have lupus).

It's very frustrating, because it creates envy towards those fitting well into the system, they seem to get anything they ask for. Yet I know I should host no ill feelings towards the, not their fault, they never asked for another person to end up without help. I mean, I know someone solely physically disabled from birth, and her disability has basically made her family wealthy because it pays a family member about double what I get in disability, to help the disabled person, and then the disabled person also gets benefits. They are able to drive a nice car while I can't even pay the bus fair.

Still, it's not their fault, it's the system.

Is the taxi system always unreliable, if it was a one time event maybe you can try it again? I know how frustrating that service is here, they don't get as much from the disabled as they do from the other customers, so they always make the disabled the last choice. Waiting for a cab here is 40-60 minutes. Once they dumped someone who needed guidance into their apartment just outside the car and drove off and the person froze to death in the snow. And you guessed right, no one was fired, not even warned.

Yea, everything here in Europe is free. We can just go collect whatever bennies we like. Or not. Where I am, healthcare has never been free, you always copaid everything, meaning the poorest sometimes couldn't even manage the copay. But what they say about us must be true. Indeed we live in paradise...

[yellowted]

i would like to see those in high places to live in our 'paradise' for a year, their attitudes and laws soon would be changed.

cabs are reliably unreliable, it is even in their literature that they can't guarantee cabs will arrive.
the cab company state they are reaching far more than their expected quota of 95% of people within 30 minutes... yeah right I must be the other few percent myself the amount of times they have left me hours waiting and on one occasion a few years ago told me they were not going to keep trying to find one after two hours so left me stranded outside my doctors in the rain and dark in my manual chair which i can't even mobilise outside in on my own!(doc had just dxd a chest infection)

I too get the resentment feeling, though like you do feel guilty for feeling it. i just don't see why everyone with the same physical needs don't get the same physical support and aids, it's just not fair!!!

[ffgal82]

I am also disabled n in a manual wheelchair. I cant use one side of my body, so i would qualify.....but cant afford chair copay with my tiny disability check. Hope you figure out a loop hole soon!! Hopefully if u explain it to your dr n give them examples that may help. Worth a try....try to make sure they really see things through your eyes. Good luck!! Know how frustrating all this can be.....not even counting dealing with the disease itself!!

[MudCrab]

Hope the kicking stops and the support begins.