had the dreaded news

[joanne8]

hello everyone hope you all had a good healthy christmas,i got the dreaded letter today from the d.l.a.,they are not changing there decision,so i have gone from middle rate care/high rate mobility to low rate care thats it,how can they justsify this after giving me the higher award for years,so now we are in a right pickle all finances are messed up,this means hubby will have to go back to work,i have a 2yr old just dont know how we are going to cope as we have nobody to help us care for baby,i am worried as i will have to do it on my own but i know now my health is going to suffer big time,just cant believe it how they make these decisions,what a good start to the new year this is going t o be,anyway hope you are all well.love and best wishes joanne8

[RachelSut]

you poor thing:( , i can sympathise, can't you appeal or see a benefits advisor? I've had to do both when i had to cut down at work just to get some income support-otherwise I wouldn't be getting anything-it's not fair we have to fight this as well as our illness

Hugs:hug:
Rachel

[Clare.T]

I'm really sorry to hear this Joanne. The way things are going is simply sick making.

I hope it isn't the end of the line and you can take it further as Rachel suggests. I'll see what I can find.

All the best

Hugs

Clare

[debbieyeates22]

hello everyone hope you all had a good healthy christmas,i got the dreaded letter today from the d.l.a.,they are not changing there decision,so i have gone from middle rate care/high rate mobility to low rate care thats it,how can they justsify this after giving me the higher award for years,so now we are in a right pickle all finances are messed up,this means hubby will have to go back to work,i have a 2yr old just dont know how we are going to cope as we have nobody to help us care for baby,i am worried as i will have to do it on my own but i know now my health is going to suffer big time,just cant believe it how they make these decisions,what a good start to the new year this is going t o be,anyway hope you are all well.love and best wishes joanne8

Hi
I have only just found out that i have lupus,i have worked full time all my life, i to have put a claim in for d.l.a, i'm so worried about it, what will i do if they don't pay me? i can't work at all now, i just don't know what i will do, i will have to go bankrupt, thats the only thing i can think of doing if they dongive it to me. we don't have any money coming in right now, and i'm just living off my overdraft at the bank, but have no way of paying it back, anyone got anything they can add to this? i'm 43yrs old and they have just written me off i feel, what do they expect us to do for money??
tired and worried.
Debbie.

[helloos]

Nothing ever seems to go right, does it? The people that need it don't get it, the people who can work get it.

I hope that you can appeal and obtain legal advice.

[joanne8]

oh debbie, you poor thing,i am so sorry that you are worrying it can make you very ill so try not to worry,im sure you will be fine if you are not satified with the outcome then you need to appeal,as for going bankrupt if it isneeded that you have to its nothing to worry about,its not your fault you are sick,i have been through every situation at some point where income is a concern due to this illness,but i can assure you once it is sorted out you can have a long deserved rest, your outcome from the dla might be ok ireally hope so,ifyou have any concerns or probs with filling forms or any question,let us know we will do all we can do to help.please try not to worry not all the outcome are bad,i really do wish you well love and beast wishes jo8

[debbieyeates22]

oh debbie, you poor thing,i am so sorry that you are worrying it can make you very ill so try not to worry,im sure you will be fine if you are not satified with the outcome then you need to appeal,as for going bankrupt if it isneeded that you have to its nothing to worry about,its not your fault you are sick,i have been through every situation at some point where income is a concern due to this illness,but i can assure you once it is sorted out you can have a long deserved rest, your outcome from the dla might be ok ireally hope so,ifyou have any concerns or probs with filling forms or any question,let us know we will do all we can do to help.please try not to worry not all the outcome are bad,i really do wish you well love and beast wishes jo8

Thank you so much for you reply, you are just so kind!
I do worry right now, as we have nothing coming in at all, and the bills are now mounting......i think i will have to talk to someone real soon (thats when i get the energy!) and try to sort this mess out, the trouble is even though we have this thing the world on the outside never stops does it?
I'm still looking at an 8 wk wait to see if i will get it, and by then i fear that this will be to late for me, how do the rest of you cope?
many thanks for you support.

[joanne8]

Thank you so much for you reply, you are just so kind!
I do worry right now, as we have nothing coming in at all, and the bills are now mounting......i think i will have to talk to someone real soon (thats when i get the energy!) and try to sort this mess out, the trouble is even though we have this thing the world on the outside never stops does it?
I'm still looking at an 8 wk wait to see if i will get it, and by then i fear that this will be to late for me, how do the rest of you cope?
many thanks for you support.

dear debbie,can you do most of your sorting financing by phone,ask people concerned to send you the relevent forms to fill in,if you have to go bankrupt,please dont worry ir really is nothing to worry about,make sure though yourself/hubby do it together (jointly)as it becomes one of payment,also if only one of you do it they chase the other partner to pay back,so in the long run its cheaper and easier to do it together,they are nothing to fear they are actually quite understanding towards your situation as like i said before you cant help being sick,you cant be punished for that,once its all done it will be such a weight lifted of your minds,start fresh with no money worries which will help your health,as for the dla.they dont awrd you money for what illness you have,it is judged on how your illness afects you ie:if you have severe depression this will affect everyday issues where your health is concerned,suffering with severe depression alone entitles people for dla,you need to explain how your illness affects you when you are having your worst day,you need to base all your info on the bad days even if you feel well the day you fill out forms,you mustnt think to yourself that you arnt that bad because their will be those days at some point through the illness(dont get me wrong i hope this isnt the case)but when filling forms to get disabilities you exagerate on those days,anyone with a severe illness will suffer good days along with bad days,when filling the forms some of the question can seem quite far fetch ie:a question might ask you how long does it take for you to walk a few yards,your answer would be based on bad day only,you might get out of breath,severe pain on excertion,dizziness,need to take pain killers,this has always been the advice i have been given,if you get a letter asking for you to attend one of their docs,please dont even if you feel you can,phone them and tell them you will need a home visit,the reason for this the docs seem lovely whilst you are their but at the end off the day its money they will do anything to get people of any benefits,so insist they come out to you,remember you are not a well lady its not your fault,i think you deserve a long rest now in order to get some quality of life back for your selfs.any questions please contact me i will try to help.love and best wishes jo8,this advice i have given you has been based purely on trial/error with myself but if i can help another to a smoother journey then its worth going through what i have.

[debbieyeates22]

dear debbie,can you do most of your sorting financing by phone,ask people concerned to send you the relevent forms to fill in,if you have to go bankrupt,please dont worry ir really is nothing to worry about,make sure though yourself/hubby do it together (jointly)as it becomes one of payment,also if only one of you do it they chase the other partner to pay back,so in the long run its cheaper and easier to do it together,they are nothing to fear they are actually quite understanding towards your situation as like i said before you cant help being sick,you cant be punished for that,once its all done it will be such a weight lifted of your minds,start fresh with no money worries which will help your health,as for the dla.they dont awrd you money for what illness you have,it is judged on how your illness afects you ie:if you have severe depression this will affect everyday issues where your health is concerned,suffering with severe depression alone entitles people for dla,you need to explain how your illness affects you when you are having your worst day,you need to base all your info on the bad days even if you feel well the day you fill out forms,you mustnt think to yourself that you arnt that bad because their will be those days at some point through the illness(dont get me wrong i hope this isnt the case)but when filling forms to get disabilities you exagerate on those days,anyone with a severe illness will suffer good days along with bad days,when filling the forms some of the question can seem quite far fetch ie:a question might ask you how long does it take for you to walk a few yards,your answer would be based on bad day only,you might get out of breath,severe pain on excertion,dizziness,need to take pain killers,this has always been the advice i have been given,if you get a letter asking for you to attend one of their docs,please dont even if you feel you can,phone them and tell them you will need a home visit,the reason for this the docs seem lovely whilst you are their but at the end off the day its money they will do anything to get people of any benefits,so insist they come out to you,remember you are not a well lady its not your fault,i think you deserve a long rest now in order to get some quality of life back for your selfs.any questions please contact me i will try to help.love and best wishes jo8,this advice i have given you has been based purely on trial/error with myself but if i can help another to a smoother journey then its worth going through what i have.

Dear Jo8
Thank you so much for your thoughts you are so very kind thank you.
I have taken on board you thoughts and am not going to worry so much now, whats the point?
They will only do what they want to do (dla) at the end of the day and there is nothing i can do but wait.
I'm having a better couple of days........maybe the lupus is fiving me a break????..... we will see.
I would love to talk with you online if you are ever on if thats ok with you, it would be nice.
hus and thanks
debbs xoxo:)

[Tracey16]

hi the only way you can get d l a is keep applying i have had lupus for 7 years and i got refuse dla 4 times just keep perservering with the forms and eventually you will get rewarded it tracey16

[Ann2]

Dear Debbie

I am sorry to hear of your money problems. You say you have been working a long time so that should entitle you to Incapacity Benefit. In the meantime whilst you are waiting on DLA you may be entitled to claim Income support if your savings are below a certain level - not sure but think £16,000 rings a bell,

Best of luck

Annxxxxx

[debbieyeates22]

Thanx for your reply.
I have sent for the forms for the benifit you are telling me about, it's just that they take so much time thats all.
DLA are writting to my Consultant so we will see what comes of this, although i do know some one who is getting both benifits and has £2000 per month coming in as well, surly this is not right?? she tells me that she has told them about it, and they have still given it to her.
Talk again soon when i know something.
Hugs
Debbie. xoxo;)

[Misty4U]

Thanx for your reply.
I have sent for the forms for the benifit you are telling me about, it's just that they take so much time thats all.
DLA are writting to my Consultant so we will see what comes of this, although i do know some one who is getting both benifits and has £2000 per month coming in as well, surly this is not right?? she tells me that she has told them about it, and they have still given it to her.
Talk again soon when i know something.
Hugs
Debbie. xoxo;)

Hi Debbie

apparantly dla is NOT a means tested benefit..some people even though fit to work are entitled to the benefit, depending on their disability and how it affects their "daily routine, and quality of life". Therefore, the fact that someone you know has £2000 per month coming in would not affect their entitlement to dla.

Misty

[balla]

HI i have known quite alot of people been let down with DLA including my daughter probably due to her working although she does this with lots pain and thought you could get help when working, and also my father who had a severe stroke and couldn't walk or use the right side of his body for 10 years before we lost him to a brainstem stroke he had to fight every year to keep it.But the best thing to do is have someone behind you filling in the forms for you citizans advice come out to your home to help you do the forms and also back you up my sister-in-law had them come out and although it naffs me off she got it for 3 years and only has bad back...but she still manages to travel round country and go on lots holidays i have even known her to go camping,Yet there is people like you who as a life time illness and as to fight for what there entitled to...Sorry this is winding me up. They want to get the scroungers off benefits and help the people who are truely ill like yourself.
I had help from nuerologist and social workers as hubby still works but i have social work help and alarms as i'm in wheel chair.

Well hope you who are fighting get sorted soon and maybe the stress won't add to your illness.

bye for now sue xx

[joanne8]

hi sue,thanks for your useful information.

this is my second appeal,i am now only getting low care rate,no mobility,before i had the middle care rate,high mobility,i am still waiting for the outcome.

i have got aggesively worse,that i am now accepting i will need a wheelchair,i havnt used one as i never go out and when i do my hubby is with me,i have always used him as a holding frame,but as of late when we have gone out i can not walk at all without feeling so ill.

i have an first appointment with the rhumy next week 14th so i will sound stuff out with him.

if they dont put my d.l.a. back to how it has been then i will get the citizen advice involved an a local m.p. as i think to the extent ofb my illness i should be getting more than low care rate,as my hubby is home with me full-time to care for me.there no way we can get any other income,if my hubby could go back to work we would be rich with his trade he can earn loads,cant they see id rather 2,ooo coming in a month instead of a potsy few quid they can give me.

still have to wait and see what they are going to do,if no joy then i just have to keep fighting,but i will be honest all this worry has made me very ill,when we are very ill we dont need this added stress on top,they can be so cruel.

hope you are well sue,love and best wishes jo8

[balla]

Hi jo, You should really have some support from social workers etc if only to help it make it easy on your husband, I do stuggle with this illness and have recently been in and out of hospital and the imuran is not doing so well on my tummy,But i have a carer that does housework and shopping etc so hubby can work it gives him a break going to work from the kids, well not so young kids 19, 14 but i'm sure he would go nuts if he was at home 24/7 and so would i seeing him all the time..we need the break.
Hope all goes well hun and you don't have to fight so long...I know it can be hard on finances as my mother struggled when my father had to finish work and go and ask for help..He also lost over 15 thousand on redundancy due to him not being able to get into work even for the week to apply for it..It was a no win case he couldn't get signed on for work by the work doctors yet he couldn't get redundancy unless he went into work for at least a week so lost 25 years work redundancy pay,so it doesn't pay to have this illness and stay at work better off putting in for redundancy before it gets to aggressive, it is now thought that the illness was related to what me and my two daughters have but yet never ever got confirmed blood tests where always negative.

WISH YOU LUCK HUN LOVE SUE X

[joanne8]

hi sue,how awful for your father,its just not fair,life can be so cruel when we are treated this way,no wonder our illness takes severe nose dives when we are dealing with this crap all the time.

i will see what the outcome this time is and ill take it from their,how can their docs whom you see tell how ill you are within 20minuites,it really is the pits,when your own doc cant tell you whats wrong whom i have been seeing for nearly20yrs with the same sx,like your father my bloodwork doesnt really show much,elevated red blood cells,thats about it,in the past i have had lots of things show up like low oxygen levels etc,which i was kept in hospital for in itu,they just dont join it all together it seems to be treated as isolated incidences,yet it all happens in the time zone we first complained about feeling unwell.

its not to you get seriously ill they take notice,whydo we have to get to that stage where you are terrified.

anyway lovely to hear from you sue,hope you are well and your family,love and best wishes jo8

[sarahvbrunelle]

you poor things, i dont live in england but i know how much i have had to fight with the social security here in ireland...and it has been ****, but all i can say is persevere....appeal
appeal
appeal!
have faith.it will work out for you all eventually,
and try deep breathing
oh and seriously,do not dress smart, scruffy, dont wash or your hair,no makeup...
for years everybody told me i would have to play the part...i wouldnt as i felt like i was making it up, and dam it i was entitled.
but last year i really felt terrible going in....and its the furthest ive ever got.
they need to see you at your very worst.
good luck
sarah
x

[mad-eyes]

Hi Debbie

So sorry to hear your position i get DLA and incapacity but not for lupus i have another disability my advice would be to contact your local welfare rights office and they will come out to see you and fill in forms for benefits they think your entitled to.

My hubby works fulltime and i have a 1 1/2 yr old and social services are a big help to me to, i really hope you get your DLA and incapacity sorted out and soon.

keep us posted

with luv

Emma xxx