General Chat

Bellblair,

Thanks for your reply. I am just so thankful to have support from the kind people on this site. I have my immediate friends of course but I can't burden them with everything, so sharing on here means an awful lot to me.

Sue xx

Sue,
i do feel for you & your daughter,
the system in this country stinks!
i have graves disease[thyroid] and am currently having radioactive iodine treatment[RAI] i have had 3 up to now and i'm have'ng 4th next month, i know it's different to what your daughter has, but i have'nt worked for 4yrs.

i was on IB, 2yrs ago i was called in for a medical and they said i was fit for work and stopped my money, and said 'would see significant improvement in 6mths!! "and the Dr there, well, i could of smacked him in the face! he just smirked at me the whole time!!!!!
i'm still waiting for that improvement to start!
i had to sign on the dole, and they were disgusted to think that DWP said i was fit for work, so they put me down for restricted hours cos they new i would'nt of got a job on the hours they gave me,it was just untill i got myself sorted, well, then i started with the treatment, the dole told me i was on the wrong benefit [ which i knew of course!]
so they suggested i got a sick note from my Dr, which i did, but i could'nt get IB back as i had'nt worked for so long, so now i get IS.

on top of all that, i now have thyroid eye disease and am have'ng treatment for that also! so this is the improvement they predicted?HUH!!!

go and have a word with her Dr, i'm sure he will be able to help,if you get the forms for DLA,your Dr has to fill in part of it, if she is turned down appeal against it, and keep on appealing, she deserves to get something, there are a few on DLA were i live and they've only got a "bad back"! i don't know how they do it!

I really hope it goes well for you & your daughter, so big(((((((((((((((hugs ))))))))))))))))))to you both.

Chris.

the whole system makes me angry, when they make you feel bad about being ill and soemthing you cant control

I've been reading the messages on here, and I am so angry!!

And Sue, and everyone else in the same boat..... you MUST ALWAYS APPEAL.

That was told to me by my very good friend (dead now bless her) who worked in the system.... so please appeal.

And good luck all of you.

Deanna X

Sue have PM'd you
Appeal straightaway
Sharon x

the whole benefit system in this country stinks.
I have just applied for a grant for my mum who is 80. We managed to get her moved into a bungalow nearer to us but she has had no financialhelp apart from her pension. The moving took all of her savings so she is left with just her weekly income and she really needs some things to improve her security and peace of mind. She really needs new doors fitted which is what I have applied for the grant for. She is one of those that refuses to use her heating unless really necessary as she is afraid of highbills etc.
She also needs a gate installed to stop people fromwalking round to the back garden. I intendcontacting age concern about that one tomorrow.
Getting back to the grant though. I did speak to a vrey nice gentleman from sheffieldabout the grant. He said that he does not know how much moneyis available for grants as a lot of the flood victims have applied for grants. Yes I do have sympathy for those affected by the floods but when it is from people who live incouncil houses who have not done a days work in years then surely my mum should take priority over those.
Any way good luck and I hope you have some success.

SueM,
Have you appealed at the DLAs refusal? ? If not, you must!

When it comes to DLA you need to appeal, appeal and appeal again!

'Some good days' is not good enough.

Get onto Welfare Benefits and Money Advice (if you have one in your area) and ask them to represent you in your daughters appeal.

A huge percentage of appeals are won.

Good luck.

Tiger-Lily

hi Sue, my aunt has MS she has been in a wheelchair for 22 years now, and for years the same thing was happening to her, all she got was a pittance in income support, they told her she wasn't entitled to DLA or Mobility allowance (even though she's in a wheelchair) she got herself a social worker with the help of her GP, and the MS society also helped, she now gets housing benefit, mobility and her income support, my cousin also gets carers allowance for her, tell your daughter not to give up, your daughter may also be entitled to a council house beside you through medical points. hope everything works out ok for you both xx


P.S forgot to add that the local council offered my aunt an adapted house with sliding doors, and everything low down, your daughter may not be in a wheelchair, but she may be entitled to a council house thats adapted for her needs. or she should be.. good luck

Thank you for those replies.

When hubby gets home later I'll print the thread off and the pms. So we can go through them together and put in place all suggestions you have made.

I don't know how to thank you all.

Please don't stop adding to this if you want to. I need all the advice I can get.

A truly big thank you from my heart...

Sue xx

Sue,

I agree with Tracy. Get the MS Society, Doctors, social workers etc to help with forms.

Perhaps The MS society representative will be able to visit. There are also other societies your daughters disability will cover.They will have dealt with the authorities numerous times and know how difficult it is for the lay person to put in writing the enormity of any problem, without lying. Even professionals with a disability or disabled child have this problem...as they are not classed as having the knowledge or ability needed to support their claim. ( I've met many who have been just as frustrated as yourself )

Don't give up and get as many 'experts' as you can to write a letter supporting your claim. This usually works.

Keep copies of everything as you will need them when they send out yet another form when the period of the claim ends.

Don't forget that some on the other end of the phone are just clerks and do not have much knowledge of the full details and will just be quoting the usual off putting details they have been given to quote, just to answer the phone to the next person in line.

Going to the MP should be the last resort. There is a chain of command and if this is not followed to the letter the DLA will cover their backs with.....'we didn't know'.....'they didn't tell us that',

Above all ...put everything in writing, Phone conversations can be denied..... Watch out for the.....'we didn't receive it'/they are on holiday/at a meeting/ excuses......if you haven't heard from them after 2 weeks at the most.....chase it up. If phoning make sure you note the time/date and the person you speak to/a summary of the conversation.

Once they realise you are not going to give up or just accept the situation, things should start rolling in your favour.

Once things are sorted and your daughter has all the benefits required, she will then be able to move away from home with the help she needs. Until then it seems she needs your support.


Hope this helps

Good luck
Susan

Hello Susan,

Thanks for taking the time to post that reply.

I take your point about the process of complaint and not 'jumping ahead'.

I mentioned earlier that I have organise my thoughts and plan of action over the next couple of days as I am so emotional today I know I may 'open mouth and put foot straight in'.

I spoke with Caroline a short while ago and she is willing to accept help at last. That is a big step for her to make.

Sue xx

Hiya Sue,
Firstly....top marks to Carolines landlord!!1
Cant offer any advice yet as I've only just got here after an afternoon of football, but will add that we are thinking of you all.
Also knowing what a tough old (but young really!!) bird you are....you will come out with a good result!!
Lots of love and positive thoughts to you all, Jane and Ged xx

Isn't MS life threatening? If it is then she is entitled to the highest rate DLA - now i don't know if this is true or not but EVERYONE I know that has applied for DLA (and I'm talking 100's of people) have been declined on their first application, so it maybe worth appealling and getting her doctor to write a letter supporting the claim!

Good luck sweetie as you're right the system STINKS!

xx

Jane,

I'll give you tough old bird!...lol

Posting today has really helped, I've gone through the upset stage today after fighting it for months and thanks to everyone on here I feel I am ready to make a positive move now. Really strange how I can enter the fray for other people easily but because this is so close to home it doesn't seem as easy. I know that sounds daft!

XX

Pink,

MS is such an insidious illness nobody really knows how it can develop in each individual. We had a friend who died within 2 years of diagnosis and that thankfully is an exception. It's like fighting through cotton wool with the 'benefit system'

Sue xx

Sue, try and get your local MP involved if he/she will, I used to work at a benefits agency a while back and the managers used to run around with like they had a bomb up their bums if there was an MP involved.
I have a relative who finally got DLA mobility on appeal, he can barely walk. He had help from a local welfare rights group. Get as many people roped in as you can and appeal, appeal, appeal.
Best of luck and best wishes to you and your daughter.

Sue,

Sorry I cannot help but am with you in spirit...

Go for it!!!!

Good luck!

Lindy xx

Sue I work with a woman with MS. She has a senior position and is strong and kind and fights it tooth and nail. She takes complimentary medication and it works for her.

This isn’t anything new she has battled MS for from what I understand over 20 years and recently the NHS is stopped paying for this and said she had to pay for her own.

She appealed went to a Tribunal had letters from her doc supporting the fact that the homeopathic or however you spell it did improve her condition and she won and now gets it on the NHS.

She is an inspiration.

Thanks Helen, Lindy and Maddie Moo.

Requesting forms today, Caroline also signing authority paperwork so I can talk to agencies on her behalf.

Sue xx

Sue I'm new on here - and across the pond - but may i say your fury is shared.
My daughter has epilepsy, and the disability assistance was refused for exactly the same reason - good days exist when she took her medication faithfully. I argued did I have to withdraw her meds so she would be "out of control" - in order for them to consider she had a disability. It becomes the 'chicken and the egg' - does the disability exist before or after treatment is given? All we wanted was financial assistance with drugs which were prohibitive because of their high costs. Had she received disability status she would also have had all kinds of perks to go along with drug costs, such as assistance with transportation for medical appointments. We did NOT win, she received her meds because we ate a frugal diet and I went into debt. Mercifully eventually I had health insurance coverage which paid for the drugs, now they have changed that coverage so that if the condition is pre-existing they won't cover it. Now as an adult she has managed to obtain coverage. I wonder how many families have members whose varied conditions are not optimised -for similar reasons.
My cousin in north Wales also has MS, I completely empathise with your daughter's struggle.
Please give your daughter a 'group' hug.
Mary

well I phoned age concern this afternoon and they couldnt help her!!! 80 years old and age concern cant help. Perhaps she has to be a centenarian to get help
They gave me another mumber to ring and then they gave me a 3rd number to ring. So now somebody will go and assess her needs but it may take 6 to 8 weeks. In the meantime if she has difficulty she can go ahead and buy the necessary things required.