FM - Work - Support I have received and am receiving - hope it helps someone else.

[Sarah-Jane]

I am a teaching assistant, working Monday to Friday, 8.30 - 4 and receive support with transport for the times my husband help. That amounts to six journeys a week. I got that through Access to Work via the Job Centre.

They basically asked me what I needed to get back to work and I told them I could not walk to the bus stop nor from it. I also told them I needed help getting around the school site so they came and assessed my ability to get around in a self propelled wheelchair [my own but I later got a larger one through my GP referring me to the hospital]. Work were surprised that I had been so proactive - I have also got the Union on side ready to back me up as I have been off so much - boy work were not pleased [but tried to hide it].

I now have an electric chair to scoot along the corridors, a portion paid for by work in proportion to the number of people working there. I also have an office chair for inside the classroom, which suits my needs.

Make sure you do join a Union if you are in work and keep up the payments, as they have made work sit up and take me more seriously. I am sure I would have been out a lot faster if I hadn't.

I am also receiving the Mobility section of the DLA at the highest level which allows me to pay [through them] for a mobility scooter on the Mobility Scooter agreement that lets me pay weekly for the scooter, insurance, road tax [yes] and RAC recovery - they will come and get me, my dog and my scooter and take us all home! Peace of mind is worth a lot. You possibly could arrange it all yourself for less but I am happy. [Tied in for 3 years - one more to go but I think I will repeat] I could have chosen a car, but I let my licence lapse years ago [had to keep it updated because of Epilepsy] as I fear the road.

There, I hope this helps you and if not, let me know and I will answer what I can. [I am in the South East of England].

Soft hugs.

[meds I am on: Amitriptyline, Lyrica, Tegretol, Co-dydramol]

[irisjoy]

Hi Sarah-Jane

that is such a lovely positive blog.

thankyou so much for showing us how much help is out there and how to access it

it sounds to me as if you are a great role model to the children you work with

also the school and the staff seem so supportive

take care xx

[munchkin62]

i no longer work as im unable to the last time i put in for dla i had to go to tribunial again i had previously been getting high mobility and low care they changed it to low mobility and middle care that was 2 and half yrs ago so i will be due to renew again this year i was really angry that the mobiliy was put to low as that is my main problem i cant get about and suffer severe pain when walking my gp had written a letter to that affect they said the reson that it had been lowerd was because at the time i could not give them a definate name for what was wrong with me except for the clinical deppression,spondolitis of the spine and my rheumatolagist had put a question mark next to RA i would love to be able to afford a scooter and think it would make a massive change to my life ide be able to go out ! also having to rely on taxis is just eating up the money i do get it cost me £12 to go to drs and back on thurs and thts with a taxi card,im to scared to tell them fibro as i know they can stop your money and the last time i was turned down and had to wait for tribunial 6mths ! i ended up having to go bankrupt i felt so ashamed and my deppression plummeted i took an overdose and ended up in hdu unit ,but im really glad for you its good to hear someone has got some help. xx

[secretldy in reply to munchkin62]

hi munchkin, i went to tribunal as well with both DLA and ESA, DLA is now middle care and high mobility and just before christmas i was told that i have been transfer from work related to support allowance. took me nearkt a year but i got it

[Sarah-Jane]

Oh dear Munchkin, what an awful experience! Please never allow yourself to get so low as to end your life. I thought of it years ago and despite FM, am so glad I didn't. Life changes, there could be something wonderful on your way!

Make sure you have support and back up for everything. You don't have to do it all at once but if you have a printer, print off information about FM from an official recognised site to send with your documents, get help to fill them in, send a letter detailing how things are for you [at your worst] get someone to check your paperwork, get a letter to go with your paperwork too. Sounds a lot doesn't it. As I said, don't panic, just make a list of what you need to do and tick it off as you go. Surely if you have all the information for them they cannot do this to you? I sure others can give you helpful tips too.

Are you in England? See my blog about the support I am getting if you are. Otherwise you will need more local information. Check out Social Services disability support and hopefully they can help too.

Take care.

Soft hugs

[NordicNavajo]

Fab that the system has given a little so good to hear someone has actually accessed some help they need! Ive failed miserably so far but will keep fighting each time I have a situation to battle through. I have bad legs but get no mobility from dwp, am currently after 7 months waiting for tribunal notes asking them to retrial as they cant provide notes for me to take to solicitor. When Im through I want to look at mobility scooters for countryside as I long for the companionship of a dog again but cant walk it at moment. It all pivots on retrial from a 2011 case! Really hope I can get some justice eventually as so far ive lost all including my long term career in local govt as they were able to get rid of me as I cant mobilise (neurological disorder makes me collapse without warning)

So good to hear a happy help tale!

Smiles NN

[Sarah-Jane in reply to NordicNavajo]

Hi NN, keep pushing. They are trying to make you give in. I wrote a real heart tearing letter about how I felt being trapped in my own home, unable to even get to a neighbour at times [left at times out] the need to go to the shops without relying on others, the look of my dog as I again could not take her out, she was only a year old then. The letter did the trick and I was soon out with my dog, we even managed the beach though that was risky. Should have taken someone with me, but we did it. I know its hard to keep pushing, but stay strong. Good luck.

[NordicNavajo in reply to Sarah-Jane]

Good on you, and its an inspiration xxx

[Ozzygirl64]

I love to read when things are going well for someone. i wish you all the luck in the world xxxxx

[Sarah-Jane in reply to Ozzygirl64]

Thank you.

[Ozzygirl64 in reply to Sarah-Jane]

you are most welcome hun xxxxx

[suwie]

Hello I work in a pub every say for two hrs of a lunch time & then on a thurs / sat I go back I have to get the bus so I get a ticket for the week which costs me £14 a week I've asked the council if I'm intitled to a pass but as I only get low care rate I can't but it would help me I keep working as I feel I have to I would love to retire early but have now been told I can't retire till I'm 66,I'm only 58 this year but I'm glad you have sorted yourself out with a scooter my family just laff at me when I say I'm goin to need one & just say mother... Xxx

[Sarah-Jane in reply to suwie]

Interesting Su, have you tried Access to Work via the Job Centre Plus? They may be able to help if you say you are at risk of having to give it up. You will probably only get some of the bus pass, but somethings better than nothing. Who said you cannot retire yet? Have you spoken to Social Services and got yourself assessed? I mean your home and abilities not brain power, ha ha!

Regarding your family, its their embarrassment thats prompting that comment. But it you want one and need one, why not It would give you your independance again and I have seen young people use them too you know! Plus, you never asked them to walk with you! Try the shops scooters and then have a try at a shop. Theirs are heaps better and you can, if you are not as heavy as me, get one that you could pop in a car if getting a lift!

Can I just say, well done for gettting out to work at all!

[suwie]

Thanx Hun I will try again I got the doc on the 21st so I will have a word too if I didn't go out to work I would just stiffen up I lost a stone in weight I dropped two dress sizes so that helpp a bit but I moved off a narrow boat to a flat & its the stairs but I think possative as not to get depressed but thank you for you ands xx