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Totally Devasting News!!!!!

Hi Everyone,

Where do i start, about 4 months ago i had to stop work the Fatigue was just to much doing a physical job as well ,i was on High Mobilty ,  Low care, i was told that i would have to pay my own Mortgage for the first 13 weeks which i have and that i would be on £67.50p a week  E.S.A money while my claim was acessed,  they have also agreed to pay£15.90p  a week towards my Mortgage interest  costs,  and they have said that i don't have to pay Community tax,  i whent for a Medical  at a Atos Centre and have been waiting for the results of that,  on Monday i received three letters  one saying that i was no longer eligible to claim E.S.A benefits and that all my E.S.A benefits had been stopped my E.S.A BENEFITS £67.50P and my Morgage assistance money £15.90p.

When i looked at my medical results they had scored me 0. points atall i had explained that i could only walk 50 mtrs with out stopping, had trouble with my balance and couldn't sit down for an hour because my legs tended to seize up  also i get leg spasms so i have to get up and walk around to help the situation and had problems in general with getting around i also need a walking  stick to help me,  i also have problems remembering things they have sen't me an appeal form to fill out i couldn't of picked a worst time for this to happen with Christmas just around the corner after having a lengthy conversation  with the Derby Benefits Centre about my predicamant she said their was nothing she could do until my appeal had been  received, i explained  that i had bills to pay at present and would have to talk to my Mortgage lender again to tell them that i wouldn't be able to pay them what i had recently sorted out with them, the quicker i can get my appeal in the better the problem i have their is  nobody i can ring for help because everybody is shuuting up for Christmas so if i send in the form straight away its me doing it with no proffesional help and we all know its not what you put but how you word it.

When i explained to her that they had not  scored me any points on the Medical for my problems with walking more than 50mts she said would you be able to do 50mts in wheelchair i said i'm not in a wheelchair so she said exactly if you were in one you could do more than 50mts with out any problem i couldn't beleive what i was hearing.

So now i'm going to atempt to do the form myself and send it back but if its true what she has told me about having to use a wheelcair i'm starting to wonder is their any point, this has totally ruinned my Christmas  and bomb shelled me i feel numbed  and not a second goes by with me not thinking about it, i'm sorry this has gone on a bit but i felt i had to put people in the picture with all the facts.

Something else i had forgot was they told me to contact Emergency Funds to help out for the short term when i told them i needed help with the Mortgage repayments they told me they can't loan me any money towards housing costs i'm hitting brick walls with everythings hope this has not got to heavy for people to read i really needed to get it off my chest.  thanks.

 

 

Hi Reghan.

Sorry for your troubles,not had to go threw the mill yet but my turn will come.

A post that may help is on the site just now it is called Can You Touch You Toes it will give you a link to a Radio 4 Discussion on the ESA.

Hope it can give you some tips.

Are you sure about filling it in your self,i am going to get all the help i can.

I wish you luck in your appeal.

Take Care Mate.

Chris.

what a terrable thing to happen this time of year.

if i could offer some advice it would be to join the "benefits and work" websight. costs around £20 but  its money well spent.

i wish you luck

http://www.benefitsandwork.co.uk/join-us

 

hello

 

Sorry  your having a tough time of it, take a look on the benefitsandworks website, they will tell you how to appeal,they are very good at getting you ESA awarded,its about £20 to join but its supposed to be very good, i am going to join when i get the dreaded forms.Hope this helps a little, because the situation is a nightmare for you.Try not to stress too much, i am sure you will get it awarde at your appeal,but you do need help with the appeal , so you can get get what you are eniteld to.

 

jaki  xx

 

hello

 

Sorry  your having a tough time of it, take a look on the benefitsandworks website, they will tell you how to appeal,they are very good at getting you ESA awarded,its about £20 to join but its supposed to be very good, i am going to join when i get the dreaded forms.Hope this helps a little, because the situation is a nightmare for you.Try not to stress too much, i am sure you will get it awarde at your appeal,but you do need help with the appeal , so you can get get what you are eniteld to.

 

jaki  xx

Hi Reghan,

 

Another avenue you might try for help.

Try the Jobcentre and when you go in just explain your predicament.  As I understand it with a condition like MS, you are classed as a vulnerable person and therefore come under a certain section in the disability law.

This means that they can not actually leave you without money to support yourself and are BREAKING THE LAW THEMSELVES in doing so.

 

I know this as I was told this a few months back when I had trouble with them.  I also had a full apology too.

 

I would also state that this is causing you tremendous amounts of stress and you could actually loose your home through their actions.

 

I know time is running out and with MS, I know myself that it is difficult to do things spur of the moment without any planning etc.  However, I would urge you to at the very least see the jobcentre and explain how awful you are being treated over this.  Then asap can go and see the citizens advice beareau.  Here and in the jobcentre along with the right support to help you with the forms filling.  You will also be able to get a food voucher which entitles you to a weeks shopping from a local charity that stores food up for emergencies like these.

Its not posh food but it usually has your basics needs there.  Hope this is of help to you?

 

Oh another thing you could do is contact Mental Health Matters and explain the pressure and depression and anxiety that you are going through too.  They can also help with the form filling.

Another thing you might want to try is trying to get an adult social worker?

You would get help with all your needs then or she / he will point you in right direction at the very least hun.

 

Wishing you all the best n God bless

Tc

Anna x

Hi

I am so sorry that you have been forced into this dreadful situation.

Now I may not have this correct but it is my understanding that you can claim income support at a reduced rate whilst you are appealing an ESA decision. DWP are not always (for not always, read never) forthcoming about this so the best place to go is CAB.

The CAB can help you with the whole problem not just the benefits side but will help you to negotiate with your mortgage lender to secure your home while you get everything sorted out. They will also liaise with council tax for you.

Quite a few other people have suggested Benefits and Work to you and I would agree. I remember reading about the wheelchair issue when it first came into the fray. Benefits and Work, for example, suggest a preemptive strike of explaining why self-propelling in a wheelchair might not work for you. Self-propelling with fatigue is a problem for all MSers but you need to actually say so even if you never use a wheelchair. Crazy but there it is.

 

Good Luck and try to keep your chin up.

 

Jane

Hi,

It’s me again.

I just read through your post again more carefully this time. I jumped on the money as being the most pertinent problem but it’s not – it’s getting the GL24 (appeal form) done without help because it’s Christmas.

You can download the form from direct.gov if they didn’t send you one.

Benefits and Work – it’s less than £20.00 and will give you step by step guide of what to put and where to get supporting evidence.

As soon as CAB opens up again after Christmas you can go for help with the other issues.

 

Good Luck

 

Jane

Reghan, where are 'your' neurologist/ MS nurse in all this? You do not seem to have the 'back up' of other family members, mentally or financially?

I do recognise your story as I 'have' SPMS too, I was more or less forced out of my last job (a job in care believe it or not..) as I suffered enormously from fatigue/ weak legs/ memory loss etc. I was treated like an idiot by people who should know much better!  

What about the local MS centre? What about other people living in/ near Derby.... maybe it is time to stand up 'en groupe' against a system that was originally set up to help people out who suffer from incurable conditions? (but now makes them suffer first because of the bad economic situation!).

Yes, you are right in thinking that I was PISSED OFF too (...) and I still am!

Take care, keep on informing us, sorry I cannot do more from where I live.

 

(and NO, I am NOT going to wish you a Happy Christmas..)

Reghan,

           This is totally devasting news - and l am so glad that folk on here have come forward with 'practical help' - They always do - lots of knowledge on this forum - as they have all had to fight for everything they are actually entitled to. Do keep in touch with us - we are the only outlet that you know you can have a good moan and get it off your chest - as we do listen and share your worries.

l think more disabled folk should work in 'Benefits' as l have yet to meet a social worker/OT/GP/Consultant etc who have any idea what our lives are like.

l don't know how to end this post - as all my best wishes are not going to pay the bills - but l hope it helps to know that you are never on your own.

sincerely,

Frances.x

Hi Reghan,

I'm pretty sure how far you could, hypothetically, get if you were in a wheelchair is completely irrelevant.

How could you be expected to know, anyway, if you've never tried one?  I would have no idea how far I'd be able to get in a wheelchair.

As I understand it, they are entitled to take into account your usual method of getting about.  So if you did already use a wheelchair, and could get further than 50m with it, that would be relevant.

However, they are not entitled to go further, and make assumptions about how far you "might" or "could" get, if you had a mobility aid you don't, in fact, have.  It's useless asking how far somebody could get in a wheelchair, who doesn't have one.

They have to assess you as you are now, and with the aids you use now.  You cannot be assessed "as if" you used a wheelchair, when you don't.

Tina

Tina is right about the wheelchair - This is another point to show how so little is understood about this condition [ms]. Because of fatigue it is very difficult to self propel oneself in a w/chair. And getting in and out of one. When you see para-athletes wizzing around playing netball etc. lf we could do that then we would - lts our whole body that is effected not just certain limbs. Not that l would want to be an amputee - but if l was l know that l would get more consideration and help from the public.

F.

Hi all, Thank you first of all for all the responses they have helped me in deciding what route to go and to do it when i have somebody  who knows what their talking about in a proffesional capacity, after i have sent this i will reply to those who have sent their solutions.

Just to try and get confirmation of what i was told about the wheelchair in my previous blog i rang the Jobcentre plus to ask about my results from my Atos medical and was it common knowledge within the  benefit system that if you cant walk 50 mts but might be capable of doing it in a wheelchair that you would automatically score no points for that question the person said that he couldn't comment on a Medical  statement and to ring Atos direct which i did , i met with a electronic answering machine which told me to ring another number which would give me the number that i did want , when i rang that number it gave surprise surprise the number for Job centre Plus!! you couldn't write this if you tried thank for listening to my problems again.      Gary.

Hi Chris,

Thanks for your reply i will go on the web site you have suggested to see if it can help my situation, and yes i have decided to wait till after Christmas and use C.A.B. for my appeal i've just come off the phone talking to my M.S nurse she can't beleive it as well and has said if i need any help to back up how i am to call her.

I have put another blog on today about the fun i had yesterday in trying to get somebody else  at Jobcentre plus to confirm that if you can't walk 50 mts but would be able to do it in a wheelchair does that mean you cannot score any points for that question  it is in full on my recent blog.

Thanks again for your concern. Gary

Hi Mick,

Thank you for your reply i am enrolled with Benefits and Work i’ll be honest with you since M.S i struggle with understanding and processing many sentences of imformation to much coming in and it all colapses what i have decided to do now that i have had time for it to sink in is go to C.A.B and just deal with them i will mark up all the letters i have and take them down after the Christmas break and see where i can get.

All the best Gary.

Hi

By appealing, your claim will be re-assessed by someone to see if any extra information can be provided to change the decision / score based on the scorecard.

You said that  "I had explained that i could only walk 50 mtrs with out stopping". This could be interpreted as you can then carry on walking when you may have meant that "I could only walk 50 meteres in total". Make it clear on the appeal form how far you can walk in total. Any extra information is important at this stage. If you have bladder / bowel problems then be honest it may score points. If you cant fill the appeal form in get someone to physically fill it in as well as give advice on appealing. If you need extra paper then use it as it ain't a big appeal form.

Getting the appeal form in will restart your benefit at a lower rate and I heard that there are delays in appeal and tribunal times due to high volumes of people appealng so you may stay on the rate for a while. If you have a representative (CAB, relative etc) they will need to attend any future tribunal hearings.

The question about using a wheelchair I think relates to your ability in you upper body function and therefore whether you could propel a wheelchair.  I do not think they consider how you would acrtually get the chair in / out of a vehicle.

Its difficult as the new system looks at your ability to perform a 'job' and not your trade. That cold mean sat in a chair at a desk typing. When your trade has been physical it ain't looked at.

All the best

s4ar

Hey Reghan

Under the old descriptors, you not being able to walk 50 metres would have got you ESA. Under the new WCA (Work Capability Assessment) descriptors it has been changed that to qualify for the support you cannot propel a manual wheelchair safely, reliably and repeatedly. The "reason" tht they have brought this is in is that all work places SHOULD be wheelchair accessible, although in reality we know that this is ridiculous. 

To qualify for points under the mobility descriptor for propelling a manula wheelchair are: 50 metres - 15 points (Support group criteria), 100 metres 9 popints, 200 metres - 6 points. This means that if you can only walk say 20 metres but can push a wheelchair more tham 200 metres then you ain't gonna qualify. This is so damned unfair, and the support group criteira for mobility is also going to be the criteria to be able to get high rate mobility is also likely to be the same under the new propsed Personal Independence Payment. This is going to affect alot of people who cannot actually work and are entitled to a Motability car now and when PIP comes in, then they may well lose it, myself included.

Andy

Reghan, I've been following this with great interest, shock and disgust at what's happened to you. Nothing to add to all of the advice you have received. What sort of country treats it's disabled citizens in this way? 

Just to say you are in my thoughts. 

Take care,

Pat x

Hi Pat, thank you for your reply ,one of the later replies i had explaining the new points system sadly puts all in to perspective i can now understand what has happened and why i have no points i also receive Higher Mobility which i use to pay my bills etc because i can’t possibly have a new car like a lot of people ,on the same reply i had it said that the Higher Mobility is now going to be assessed in the same way which means i will lose my that maybe which means i will lose my home and everything, i have always been a person who pays his bills on time other than a Morgage i have never had any loans in my life i also kept working to the end my M.S nurse said she has never none anybody to try to go on for so long never been out of work and on the two occasions i was it was because i was made redundant, when my marriage broke down and we divorced i put all my money in to buying a bungalow with a small Mortgage to think i might lose all of that has left me totally numbed sorry you’ve had to hear all of this its just how i feel all the best Gary.