Is everyone who's claiming Incapacity Benefit or Income Support going through the same ordeal as my daughter and I are.

My daughter is 19 years old and had a anuerysmal bone cyst (tumour growing inside her spine) removed in June 07. The hospital had to take a small peice of her spine away with the cyst to get it all out. She was not able to walk as the tumour was crushing her spinal cord making her legs numb and the pain was excrutiating. This has left her spine weak and when she stands for more tham half an hour she is in a lot of pain. The same with sitting down. She had to have a medical from an incapacity benefit GP who said she was fit for work. After an appeal which we lost they have said she is fit for work. The hospital where her consultant is has said she is not fit and so does her own GP but still they stopped her money today. She had to move from home into a disabled flat something she was happy about as this gave her a little independence but now it does'nt look like she can afford to stay there - yet she is still disabled. I know the government have to get people back to work but my daughter is not lying or putting anything on. Most of the workers at the benefits office treat us like scroungers (which we are not - I've worked all my life and had 4 children).
We had to go back to the hospital last week as they think the tumour may have returned, you would think this eould make a difference but no they don't care.
I'm at my wits end filling in appeals forms and tribunal forms in, more than once as they seem to loose things at the benefits office. Anyone else had the same problems - is there light at the end of the tunnel?

we tried to claim carers allowence for my grandma she was bed bound with cancer, we got a letter saying we had turned down as she didnt meet the targets 3 days after she died

You'd probably get some good advice on the Disability and Careers group. (http://www.sheffieldforum.co.uk/forumdisplay.php?f=103&order=desc&page=2)

HappyHippy, one of the group leaders, is a mine of useful information and advice.

It seems my daughter cannot get incapacity benefit because she is too young and has not paid enough national insurance credits. She started college to get more qualifications when diagnosed with the tumour. I'm sorry if I came accross unkind yesterday, I was really angry and upset but I thank you all for your kind words, its not just me who feels victimised (that sounds strong I know but thats how it feels). Should know today whether they are going to pay her at least to keep the roof over her head.

The saga goes on.
She will have to wait for approx 2 weeks for a decision to get some money. She should be pretty thin by then. Was advised she could get a crisis loan for food. What sort of country do we live in? I think by this stage most people give up and just sign on the dole but sod that we're not doing that, she would then be lying saying she is fit for work when she is not. I will buy her food and anything else she needs. Problem is where do we go from here, if the decision maker says no who else can I complain to, has anyone got any suggestions.

I am a bit confused...I don't understand why they didn't take the word of the GP and the consultant at the hospital,

did they write letters for you to send in with the applications?

Also I dont think it does matter about age or contributions previously made, i work with young people with learning difficulties and they tend to get incapacity benefit from leaving school.

Good luck, please keep us informed....

It seems my daughter cannot get incapacity benefit because she is too young and has not paid enough national insurance credits. She started college to get more qualifications when diagnosed with the tumour. I'm sorry if I came accross unkind yesterday, I was really angry and upset but I thank you all for your kind words, its not just me who feels victimised (that sounds strong I know but thats how it feels). Should know today whether they are going to pay her at least to keep the roof over her head.

You came across as somebody who's rapidly reaching the end of your tether with a ridiculous bleddy system that is beyond the comprehension of most reasonable people!!!

Sometimes it helps to just let off a bit of steam, and this is the place to do it. I see HH hasn't turned up yet, but I'm sure that, in the past, he's advised people to contact their local CAB (Citizen's Advice Bureau) as they can help with filling in the forms. Unfair as it seems, you need to know what to put down in order to get what you need/are entitled to. CAB can probably also advise on what to do about appealing against an unfavourable decision.

I'd say definitely get to an advice centre if poss. there's obviously been a lot of history to this and, whilst it might well be a bad tribunal decision, it might also be something where there is still an avenue to go down. in case you need to appeal the tribunal decision, make sure you write to ask for a full set of reasons for their decision.

Thanks for your comments. We went to see Jeff Levick at Heely advice centre who helped us fill in all the appeal forms. He faxed and posted these forms for us (second lot of forms at that) and when we had not heard anything he rang them up for us and they told him they had not received any forms. "Thats funny, he said I faxed them and posted them". The guy on the phone from income support made his excuses to go and have a look and as if by magic he said he had found them. Even Jeff is getting frustrated with them. Its like, every opportunity they get they try to obstruct our efforts to claim. Jeff is on holiday this week and I for one can't wait for him to get back. He is an ex solicitor and worth his weight in gold.
In answer to some questions - My daughter definately cannot get incapacity benefit so was passed onto income support. I never know which department I have to send sick notes too but get letters from both departments.
The doctor gives my daughter a sick note every 8 weeks and fully backs her not going back to work. Yet the benefits GP who I can only presume does not know a thing about my daughters condition states she is fit for work. If someone in their family suffered the way my daughter does I'm sure they would feel differently.
One thing that has stuck in my mind is The secretary at the Royal othorpeadic hospital in Birmingham where my daughter has to go told me that even patients with cancer that are terminally ill have to justify getting their benefits - how bad is that. I thank god that at least for now my daughters tumours are benign.

Bet you're all sick of me now but for anyone interested, look up her condition on the internet at
Aneurysmal bone cyst - wikipedia, the free encyclopedia
her tumour was in the bottom of her spine growing in the bone.
Last xmas she could not walk at all and for nearly 6 months we thought she might die. It took that long to diagnose that it was not cancerous (This is why I'm very protective of her now)

Bet you're all sick of me now but for anyone interested, look up her condition on the internet at
Aneurysmal bone cyst - wikipedia, the free encyclopedia
her tumour was in the bottom of her spine growing in the bone.
Last xmas she could not walk at all and for nearly 6 months we thought she might die. It took that long to diagnose that it was not cancerous (This is why I'm very protective of her now)

We'll not get sick of you, chuck, because this Forum is "A welcoming place for all people with disabilities and those who spend time caring for others to talk about caring, benefits and support."

A lot of us on here have come across the apparent inability of "them" (whichever "them" it is) to act in a sensible manner when it comes to getting the benefits or support that people with disabilities are entitled to and which they need to survive.

The Government's crackdown on "scroungers" has affected genuine claimants as well, something they managed to overlook in their desire to pander to the hysterical demands of some people to cut down on the level of benefit payments.

We'll not get sick of you, chuck, because this Forum is "A welcoming place for all people with disabilities and those who spend time caring for others to talk about caring, benefits and support."

A lot of us on here have come across the apparent inability of "them" (whichever "them" it is) to act in a sensible manner when it comes to getting the benefits or support that people with disabilities are entitled to and which they need to survive.

The Government's crackdown on "scroungers" has affected genuine claimants as well, something they managed to overlook in their desire to pander to the hysterical demands of some people to cut down on the level of benefit payments.

Thank you, I've never been on this part of the forum before, but it does make me feel better getting things off my chest so to speak.

Dozy is 100% right.

You are very welcome here - it's your forum as well as anyone elses!

I'm so glad you're seeing Jeff Levick, he's known as a brilliant advice worker.

Feel free to come on here to update, get things off your chest, or whatever! We all need to do that now and again. Disability is hard, whether the disabled person or their carer, friends or family.

Take care.

Ok time for weirdness here.... (I hope it makes a bit of sense)

incapacity benefit is the underlying benefit. So, The reason why you would be getting income support is because you should be entitled to incapacity on the grounds of ill health, but can't get it because you havent got NI credits, so the money comes from the means tested income support.

So, when dealing with the DWP, all matters relating to sick notes, medicals etc. come from incapacity benefit, and all matters relating to money are dealt with by income support.

So if you need to ring someone up about a sick note, it would be incapacity benefit you would need to speak to, but if you had say not got your money for this week it would be income support.

(tis a bit nutty but itsthe way it works)

..dull..

I sympathise I've watched my niece spend several years trying to get the benefits she was entitled to. She has arthritis, is blind in one eye and losing sight in the second,has severe asthma and is partially paralysed down one side and yet it was only when she got a new GP that things really changed. He wrote letters got her a new social worker got letters from the specialist and just kept on the case till she got the benefits and also the suitable housing she was supposed to have as the housing she was in was designated dangerous as she had had several falls. I think sometimes the benefit people make things so awkward in the hope that we will just give up. Many years ago I had similar problems and it was my GP who fixed things then. Your MP can be a great help too. I really don't think its what colour or nationality. I know asylum seekers who are ill from the torture they received in the country they escaped from who are existing purely on handouts from charities. Provison is patchy and seems to be based on luck rather than need.

Ok time for weirdness here.... (I hope it makes a bit of sense)

incapacity benefit is the underlying benefit. So, The reason why you would be getting income support is because you should be entitled to incapacity on the grounds of ill health, but can't get it because you havent got NI credits, so the money comes from the means tested income support.

So, when dealing with the DWP, all matters relating to sick notes, medicals etc. come from incapacity benefit, and all matters relating to money are dealt with by income support.

So if you need to ring someone up about a sick note, it would be incapacity benefit you would need to speak to, but if you had say not got your money for this week it would be income support.

(tis a bit nutty but itsthe way it works)

..dull..

This is exactly right - thank you

theres another site barton and humber advice service, worth a look. Has all sorts of forms and guides.

My benefits quite complicated (ok, its really way out there) so much so that no one in the jobcentre knows all the information regarding my claim. (Im a disabled student claiming income support DLA and now housing too) I have made it my business to research throughly all aspects of my entitlements so that I at least have a clear understanding of how it works. It helps when I ring up and I can tell them what they need to do...

gives me a bit of authority (ok so they like to double check what I tell them, but at least they know WHAT info they are double checking in the first place.

:-) good luck. My recommendation is to become an expert in your own benefit if you can. Source info from everywhere and piece it all together to get a clear understanding...

well it helped me anyway!

..dull..

theres another site barton and humber advice service, worth a look. Has all sorts of forms and guides.

My benefits quite complicated (ok, its really way out there) so much so that no one in the jobcentre knows all the information regarding my claim. (Im a disabled student claiming income support DLA and now housing too) I have made it my business to research throughly all aspects of my entitlements so that I at least have a clear understanding of how it works. It helps when I ring up and I can tell them what they need to do...

gives me a bit of authority (ok so they like to double check what I tell them, but at least they know WHAT info they are double checking in the first place.

:-) good luck. My recommendation is to become an expert in your own benefit if you can. Source info from everywhere and piece it all together to get a clear understanding...

well it helped me anyway!

..dull..

I think you're fantastic. I'll take a look at that site tonight. Marie

Hi
Just an update. My daughters housing benefit has just been stopped so now another huge form to fill in. Why can't they just leave it alone until its sorted out. They waste more of their time, paper, postage and not to mention my time. Well I'm not filling it in until I get a decision from them about her income support, don't even know if she will be entitled as they say she can work and myself and her doctors say she can't. :confused: Marie

It seems my daughter cannot get incapacity benefit because she is too young and has not paid enough national insurance credits. She started college to get more qualifications when diagnosed with the tumour. I'm sorry if I came accross unkind yesterday, I was really angry and upset but I thank you all for your kind words, its not just me who feels victimised (that sounds strong I know but thats how it feels). Should know today whether they are going to pay her at least to keep the roof over her head.

Hi all!

I've been offline for ages so have only just picked up on this thread, so forgive me if there are a load of seemingly unconnected answers, and/or it looks a total mess when I try and merge the responses later (never done that before, so this thread's my 'guinea pig', so to speak).

Firstly, reading through this, the actual reason why she would be getting money from Income Support (IS) is that she has an appeal going through, and would be claiming IS at a reduced rate in the interim, or she has been signed off again by her GP, but with a different condition. In every other case, she'd have to claim Income Based Jobseeker's Allowance ((IB)JSA).

You also mention that you had an appeal turned down. Was that a tribunal decision, or what is known as a 'reconsideration', which is effectively when a different decision maker looks at the original file, plus any extra information which may have arisen?

The saga goes on.
She will have to wait for approx 2 weeks for a decision to get some money. She should be pretty thin by then. Was advised she could get a crisis loan for food. What sort of country do we live in? I think by this stage most people give up and just sign on the dole but sod that we're not doing that, she would then be lying saying she is fit for work when she is not. I will buy her food and anything else she needs. Problem is where do we go from here, if the decision maker says no who else can I complain to, has anyone got any suggestions.

You can't complain to anyone. Well, you could, but that would depend on whether you like peeing in the wind. Put simply, the chain goes:

Claim
Decision not to award benefit
Reconsideration (used to be known as a review)
Decision not to award benefit
Appeal (this bit is a tribunal hearing)
Decision not to award benefit
Hearing of the Commissioners.

Obviously, I've taken the extremely negative way to show the way it ends up working. The very last bit can only come into play if it is believed that the tribunal made an error in law when making it's decision. That is to say that the tribunal misinterpreted part of the claim with direct regard to the legislation regarding that benefit. It's not a sort of 'extra appeal' if the other bits don't work.

My advice would have been to go and see a CAB, as ever, but you've already done that!

Hi all!

I've been offline for ages so have only just picked up on this thread, so forgive me if there are a load of seemingly unconnected answers, and/or it looks a total mess when I try and merge the responses later (never done that before, so this thread's my 'guinea pig', so to speak).

Firstly, reading through this, the actual reason why she would be getting money from Income Support (IS) is that she has an appeal going through, and would be claiming IS at a reduced rate in the interim, or she has been signed off again by her GP, but with a different condition. In every other case, she'd have to claim Income Based Jobseeker's Allowance ((IB)JSA).

You also mention that you had an appeal turned down. Was that a tribunal decision, or what is known as a 'reconsideration', which is effectively when a different decision maker looks at the original file, plus any extra information which may have arisen?

Hi
Read reply from verydull who seems to know exactly why she gets income support. She does not qualify for incapacity benefit because she has not paid enough contributions. She was receiving a reduced rate because we appealled against their decision to kick her off income support saying she was fit for work. They said she should claim JSA but then she would be lying saying she was fit for work, because unless there is a job where she can lay down for 8 hours a day (because thats the only time she is not in pain) then she should claim JSA. Our doctor and consultant state she is not fit for any kind of work at the moment. This went to a tribunal even though we asked for an oral hearing they went ahead with a paper hearing and the decision to stop her money was upheld. We are now fighting that dicision with whats called a set aside and I don't know if they can legally stop her money but they have done. So now she gets nothing until a decision is made to have an oral hearing as originally requested. To be honest I bet you are no wiser because I hardly understand it all myself but good luck with it. Thanks for asking though

I am a bit confused...I don't understand why they didn't take the word of the GP and the consultant at the hospital,

did they write letters for you to send in with the applications?

It's because everybody who claims Incapacity Benefit/IB in Youth/Income Support (on the grounds of ill health) has to have a second decision made by DWP (except in very special circumstances). This is called a Personal Capability Assessment, and usually involves a medical.

The thing is that being ill or disabled doesn't automatically mean that someone is unfit for work. Granted, in this case, I'm somewhat stunned that the poor girl was turned down, but the decision making process is different when it gets to the point where the PCA takes place.

Hi
Read reply from verydull who seems to know exactly why she gets income support. She does not qualify for incapacity benefit because she has not paid enough contributions. She was receiving a reduced rate because we appealled against their decision to kick her off income support saying she was fit for work.

Yeah, I get that, but any IS claim now will still only be at a reduced rate as the appeal is effectively still live, if it's set aside, as I'll explain in a moment.

They said she should claim JSA but then she would be lying saying she was fit for work, because unless there is a job where she can lay down for 8 hours a day (because thats the only time she is not in pain) then she should claim JSA.

All of that is right.

Our doctor and consultant state she is not fit for any kind of work at the moment. This went to a tribunal even though we asked for an oral hearing they went ahead with a paper hearing and the decision to stop her money was upheld. We are now fighting that dicision with whats called a set aside and I don't know if they can legally stop her money but they have done. So now she gets nothing until a decision is made to have an oral hearing as originally requested. To be honest I bet you are no wiser because I hardly understand it all myself but good luck with it. Thanks for asking though

I do understand it, so I'll try to explain it a bit more clearly. A 'set aside' means that the original hearing wasn't done correctly (slightly different from an error in law), and in this case it's that the wrong type of tribunal was heard, i.e., a paper hearing instead of an oral one, or that there was extra medical evidence which was in existence, that wasn't available at the original hearing.

Basically, the original decision made by the tribunal is wiped clean, and we all pretend it never happened, and the process starts again at the appeal stage. That means that she should still be able to claim IS at the reduced rate, if the decision is set aside.

I'd say definitely get to an advice centre if poss. there's obviously been a lot of history to this and, whilst it might well be a bad tribunal decision, it might also be something where there is still an avenue to go down. in case you need to appeal the tribunal decision, make sure you write to ask for a full set of reasons for their decision.

You can't appeal against a tribunal decision.

You can ask for a set aside (as has happened here), or a Hearing of the Commissioners, but that must related to legislation and not simply that you disagree with the decision of the tribunal.

The doctor gives my daughter a sick note every 8 weeks and fully backs her not going back to work. Yet the benefits GP who I can only presume does not know a thing about my daughters condition states she is fit for work.

The thing is that the GP who gathers the evidence for DWP to make the decision isn't looking at your daughter's condition in the same way as your GP, or consultant. I agree with you that the decision stinks, but s/he had to score your daughter according to what she has said, and not his/her opinion of her general fitness for work. S/he may have felt that she shouldn't be working, but by the time it gets to a medical, opinions count for a lot less.

If someone in their family suffered the way my daughter does I'm sure they would feel differently.
One thing that has stuck in my mind is The secretary at the Royal othorpeadic hospital in Birmingham where my daughter has to go told me that even patients with cancer that are terminally ill have to justify getting their benefits - how bad is that.

I'm not disputing he said it, but if he did, he's very, very wrong. Terminally ill patients would receive higher rate care component of Disability Living Allowance/higher rate Attendance Allowance, and their claim fast tracked by using a DS1500 form, which is issued by the patient's GP/consultant, and a similar procedure happens with IB/IS. What he may have meant (and worded badly) is that written proof is required before the benefits can be fast tracked.

I thank god that at least for now my daughters tumours are benign.

That is wonderful news!

Hi
Just an update. My daughters housing benefit has just been stopped so now another huge form to fill in. Why can't they just leave it alone until its sorted out. They waste more of their time, paper, postage and not to mention my time. Well I'm not filling it in until I get a decision from them about her income support, don't even know if she will be entitled as they say she can work and myself and her doctors say she can't. :confused: Marie

Well, it's because Housing Benefit would only know that a DWP benefit is not in payment, but they have no information about what income is coming in (even though in this case it's currently £0). She could still claim Housing Benefit/Council Tax Benefit on the grounds of low income, but she'd need to provide proof that she has nowt coming in.

HB/CTB are sorted out by the Council, and not DWP. Don't delay in getting the forms in to the Council, but please do it through your advice worker.

And finally, belatedly, welcome in! Get as much off your chest in here as you want; nobody will judge, and if they do, they've got me to answer to ;)

Good luck :thumbsup:

Well, it's because Housing Benefit would only know that a DWP benefit is not in payment, but they have no information about what income is coming in (even though in this case it's currently £0). She could still claim Housing Benefit/Council Tax Benefit on the grounds of low income, but she'd need to provide proof that she has nowt coming in.

HB/CTB are sorted out by the Council, and not DWP. Don't delay in getting the forms in to the Council, but please do it through your advice worker.

And finally, belatedly, welcome in! Get as much off your chest in here as you want; nobody will judge, and if they do, they've got me to answer to ;)

Good luck :thumbsup:

Thank you and you have actually made me smile, to be honest this is becoming quite addictive, I've found myself checking to see if anyone has replied even when I'm at work like now. Thanks for all the feedback and I must say you sound like a knowledgable and very nice person. (Thanks to everyone else as well). Seeing the advice worker at 1.45 today so will know more later

Marie

hi Guys

Well we got a decision today. Incapacity Benefit are going to grant her new claim and will back date her claim to 9th April. This at least has restored a bit of faith in the shambolic system. We are so pleased. Still going to fight the other appeal though. Got fantastic medical evidence from her consultant and GP to go to the next appeal hearing so watch this space. (Can't believe I'm this happy that the doctors say how bad my daughter is but they did'nt believe us - as if we'd lie about something like this) I'm a big believer in fate, if you're good then good things happen back, if you tell the truth then everything is alright. Was beginning to doubt a little but hey presto things looking up.
Speak to you all soon

great news!

good luck on the next hurdle!

..dull..

hi Guys

Well we got a decision today. Incapacity Benefit are going to grant her new claim and will back date her claim to 9th April. This at least has restored a bit of faith in the shambolic system. We are so pleased. Still going to fight the other appeal though. Got fantastic medical evidence from her consultant and GP to go to the next appeal hearing so watch this space. (Can't believe I'm this happy that the doctors say how bad my daughter is but they did'nt believe us - as if we'd lie about something like this) I'm a big believer in fate, if you're good then good things happen back, if you tell the truth then everything is alright. Was beginning to doubt a little but hey presto things looking up.
Speak to you all soon

I'm delighted for you and your daughter, it's just such a bloody shame that you've had to go through so much to get what she's entitled to.

Great news, sadly things are going to get a lot worse when the new Work Capability Assessment comes in from October, it is even harsher and BAMS hired doctors will be under pressure to kick off even more disabled claimants off the new benefit: Employment Support Allowance(ESA)

Well everyone, we went to the appeal and it was granted. This certainly is one in the eye for the income support and incapacity benefits office, who it seems did not beleive her. I dont know if I mentioned it before but I was told once by a guy who worked in the income support office that they had targets to meet of how many people they could throw off the benefits system, he only told me this as he was leaving their employment as he could not stand it anymore. He was one of the nice guys there and there was not many. Problem is they try throwing the genuine people off as well as the non genuine. Its is so unfair but I would advise the genuine people out their to appeal if they get their money stopped.
My daughter will now get her money back dated from January to August and she will continue to get full incapacity benefit.
Thanks for everyones support, it really helped us get through all this. T H A N K Y O U A L L XXXXXXXXX

Glad we could be of service!

That's really good news, even if it has taken an age for it to be sorted out!