Chiari and the DWP (The facts - my situation)
Fri, 09/25/2009 - 15:48 | 
Chris 
I started to claim ESA (Employment and Support Allowance) in January 2009
I began on the "assessment rate" and was automatically placed into the WRAG group (Work Related Activity Group) as it was a new claim under the new guidelines that came into effect from 27th October 2008.
This meant that I was under an obligation to attend a WFHRA (Work Focused Health Related Assessment) and partake in the "pathways to work scheme" one being a health assessment and the other is an interview and support process to get me back into work.
All new claims (after 27th October 2008) are currently required to go through this process and current claimants (before 27th October 2008) will be required to do the same from April 2010.
In was told that all claimants are now required to "earn their benefit" as opposed to what they were doing before.
The assessments are now focussing on what claimants are "able" to do rather than what they are "unable" to do.
Yes, this sounds very fair indeed and one that I would welcome. However, the information flow has not exactly been forthcoming and that you and I are expected to do our own research to explain the complicated process that we are required to follow. I have never been sat down and offered a clear explanation of the situation that I find myself in.
So - I am in the WRAG group being paid a lower "assessment rate" rather than being in the SG (Support Group - Usually made up of people that would have previously been claiming Incapacity benefit) and receiving a higher rate of benefit. Incidentally if a member of the SG does not attend the WFHRA or WRI appointments then their level of benefit may be reduced to the lower level at the same rate as the WRAG group.
All sounds so confusing doesn't it?
So to summarise - I am in the WRAG group receiving a lower rate of benefit until the result of my tribunal are received. The DWP do not list Chiari or Syringomyelia under their list of conditions on which they base their decisions upon.
The current array of evidence that they have is out-dated, irrelevant and incorrect.
They have been presented with new evidence from myself which points out the short comings.
I am still expected to attend and support the Work Focussed "Pathways to Work" appointments, in which I have already identified that they cannot offer the level of support that I need to over come the "barriers" that I have in order to return to work.
I expect (actually I also hope) that I will be required to attend another WFHRA (Work Focussed Health Related Assessment) hopefully carried out by a doctor who does understand Chiari and Syringomyelia and one who has access to my previous MRI scans and to the results from my next Neurosurgeon's appointment next week.
I do however expect that the tribunal will not have the benefit of such expertise. If so, then I fully expect the wrong decision to be made, which will mean that I will have to take the appeals process to a further stage.
During this time, I am put under an unnecessary level of stress and pressure both mentally and financially.
All very confusing, time consuming and totally unnecessary. I haven't even begun to calculate the expense of all this red tape and paper work (If at all that calculation would be possible)
Hurray for a caring state and the results of being able bodied enough for the majority of my working life to pay all that I have into a system that will not offer me the help that I need when I need it.
At least I will be going down fighting.
The DWP's policies and guidelines can be found by clicking here. The above is a statement of how I currently understand my claim and situation to be at this moment in time. You can obviously understand that because of the rather confusing jargon and lack of clear explanation by the DWP in person that I might be slightly out. However, I hope that it helps a little, but would advise you to do your own research and ask your own advisors what your own situation is.
All I want is to be treated fairly. I want to go back to work, I want to support my family. All I am asking for is help to do just that - but also to be able to claim what I am entitled to. After all, I have paid into the system for a long time on the promise that I would be looked after should the unfortunate occasion arise. That time is now.
Other links that you may find interesting:
My Pathway to Work Interview
Government Petition to help raise awareness!
The letter that I sent to my Local MP - Andy Burnham
NHS Choices News...
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Hi i found your blog after trawling the net and hoping to find some info on how people with chiari are dealing with the dwp.
My husband has chiari and also hydrocephalus. Over the past year my husband has had 3 operations in relation to the hydro as that was the surgeons priority. He still has very large ventricles and they are unsure they will ever go down. All the surgeries seemd to make him worse so he is very unsure about the decompression. The surgeon wants to do it now but with 3 ops close together and my husbands reluctance, the surgeon is willing to wait 6 months to make sure that its really what we want.
Meanwhile back to the dwp my husband had a work focused interview less than a month after the last surgery.I was told by some numpty on the phone at jcp that he has has a shunt put in he is better. He doesnt leave the house and they knew all the details, but still insisted. We went down, he staggered round etc was a debacle. Everone stared in horror! They decided he needed a medical to see if he is entitled to esa!!!
I said he doesnt leave the house, he has alot of problems and car vibrations make him much worse. They said supply a docs note and we will come to your house. We supplied the note, they said we dont care you come to us no home visit for you. Against my better judgement we went. Low and behold he had a fit in the car, the first one he has ever had, an ambulance was called, scans , observations etc etc.
Even after this they made another date and insisted he attended! I said no way im not watching my hubby go through that again. i saw my mp and solicitor and finally they gave in. As of this point he has had the medical and we are currently awaiting the result. Im not holding my breath, they are a bunch of assholes.sorry for the rant but needless to say i/we feel your pain.
Hi all, i had a medical assessment last year pre op, i was refused ESA and scored only 6 points. I believe you need to score a minimum of 15 points to be able to claim. I looked at my Medical and the assessment score sheet and found that one contradicted the other. I contacted my MP and he wrote a letter to the Manager of Job Centre plus. Within two days i recieved a letter stating that my appeal had been looked at and the decision changed and that i would now recieve ESA. I was asked to attend another Medical August this year Post Op. Bearing in mind i attended with a walking stick which i need to keep me steady as i still suffer with terrible vertigo and dizziness as well as weak legs.The Dr like the first one told me she did not know much about the disorders. I recieved a letter agian telling me i was no longer able to recieve ESA as i failed my assessment. I recieved a copy of the medical and there were some things on there that i could not believe, such as the gentleman could walk without the aid of a walking stick, when i turned up with one. The gentleman could read the test chart with no use of correction. I wear glasses all the time. The gentleman had surgery to his neck. I had Brain Surgery, since when is your brain in your neck. I could go on all day with some of the comments made. These Dr's who work for the DWP are absoloute idiots. What qualifies them to assess you on something they know nothing about. I have now sent letters and information to Atos health care who are the main body for Medical Assessments for the DWP, a letter to my MP, a letter to the Manager of Job centre plus, a letter to Number 10 downing street.I ahve been refused ESA. I cannot work at the moment due to the state i am in. I now face repossession of my house as i cant pay my mortgage bue to no income.This absoloutly discusting. What do i do now.
Hi Darren im sorry to hear about the BS you are having to put up with. I said to Chris before that the DWP know nothing at all about chiari so they just come out with complete load of irrelevent fairy stories.
My husband has hydro and chiari, he has had 3 hydro ops but is waiting for the decompression. For all intents and purposes he is house bound and mostly bed bound. It took a solicitor and an Mp for Atos to even agree to a home visit. This was after we tried to go the first time and the taxi journey caused brain trauma and bought on a fit. (He avoids car journeys as vibrations make his symptoms 10 fold)
Luckily the Doctor that came to do the ESA medical seemed abit knowledgeable and she knew that the decompression isnt a fix its a staller etc(if you know what i mean). I can only guess that as a solicitor was already involved pre-medical that she had to be read up on the condition to ensure as fair as possible test. I saw all the legal letters in her file. But i feel very very greatful that our tester seemed human and actually listened.
All i can say is like Chris appeal and get help from anyone and everyone. I know you dont want to hear this as just getting through day to day normal stuff is enough. I do everything for my other half and the last thing i wanted was extra seemingly pointless drama. I felt bad getting solicitors involved as im not that type of person but they pushed me too far. They will try to slime out of anything they can so they dont have to pay you, unless you show them you mean business. (I had a welfare rights solicitor and had free advice)
I dont know wether this helps or not but at least both you and Chris will know that it is possible. We got a letter over the weekend saying he is in the SUPPORT GROUP. I know i should be happy but it took 5 months of heart ache to get here and also it doesnt say how long until the next review.
Anyway good luck and know you are not alone, there is a small group of us going through this along side you.
Hopefully one day Chiari will be widely recognised.
I sent my appeal back in May after i showed them evidence that the Medical contradicted the assessment. I was awarded ESA again and they appologised for the mistake and that i will continue to get ESA. I recieved another appointment for a Medical on the 18th August and i attended with my walking stick as you well know i am still getting major problems with balance,vertigo, weakness in the legs, memory loss, hand tremours, tingling in the hands and so on. I got a letter back last week saying i was no longer entitled to ESA as i failed the medical and scored 0 points. I recieved the letter on the 10th September telling me that the payments had stopped back in August. I asked them for a copy of the assessment and medical report and could not believe what i read. The doctor who by the way told me she knew nothing of the conditions had wrote some things such as " the client could walk without the aid of a walking stick" hello, i attended with a walking stick. " the client could read without the use of glasses" hello i wear glasses all the time and cannot see without them. " the client had full neck movement" i cannot tilt my head back. " the client could bend to touch his toes,and could squat and stand with ease" i told this doctor that i could not do these tasks due to balance and problems with pressure. The list goes on as though i was not there and she had made every thing up. I am so discusted i have sent copies to my MP, Atos medical who deal with the assessments, the district manager of jobcentre plus and i am going to send one to the useless Gordan Brown if i have to. The whole thing is a complete joke mate. i now have no income what so ever and now to top it all my house looks as though it will be reposessed. I have even sent my stories off to the local papers, this morning, itv news and BBC news but they dont seem to be bothered.
Darren, you havent had an appeal hearing tribunal yet. So get an appeal in on their latest decision and do it tomorrow if you cant do it today.
I have only had one medical asessment 8 weeks post op and am waiting for my tribunal date. I will probably have to have a medical before hand tho as i have told them that the results are now well out dated and cannot feasibly be used to assess my current symptoms.
get back in there mate and fight them....... you should also be entitled to housing support in that they pay your mortgage interest. The only reason I didnt qualify was because I have insurance.
get in there fella.
best of luck.
Chris
Great to hear that you have got a result and know that your post will help Darren. Thank you for that.
It has also helped me, because i am going to get the same legal help now....if its free, it can't hurt any can it? In fact it will probably make them look at it clearer and with a little more thought.
Darren
You should lodge an appeal, you might have already done this but you can do it more than once, then they have to pay you at the "assessment rate" until your appeal decision is received. They can also help you with your mortgage interest payments.
I would get in touch with the Citizens Advice Bureau and ask them to act on your behalf. They are really very good when you get through to them.
Dont try and fight it on your own, you have already used your MP so get in contact again! The power of that alone is enormous.
I have the same issues with ATOS - remember tho that they work for the DWP - Not you!
I have told my tribunal that I was not happy with the credentials of my original doctor from ATOS and have asked for a Chiari / Syringomyelia specialist. This is why it is taking a long time for my hearing to be heard. They have a legal obligation to have an accurate assessment carried out by a qualified and experienced professional.
I really am disturbed to hear your predicament Darren, and wish that there was something that I could do to help.
But get that Appeal in mate.
Have a look at this forum:
http://www.benefitsandwork.co.uk/forum?func=view&catid=10&id=11362
Speak soon mate
Chris
Hiya and thanks for looking at the site.
I am going to reply in a little more depth tomorrow, as I have just got back from being away all day and now need my bed!
I despise the DWP even more now that I have read how they have treated you both. I was holding out hope for them, but now - they have really shown how uncaring and and damned right belligerent they really are.
I am so so sorry that you have both had to go through what you have with them. It puts my own situation on a real back burner to be honest......but to say that I am not really surprised that one day I would hear something like this. I never wanted to, but I knew it was coming.
You have no need at all to apologise for any rant, that's what this place is here for to be honest.
Please get in touch by email........
chris@chiariblog.co.uk
I don't even know your name to say thank you to properly?
There is a forum that I visit, that is full of great people like yourself that you can also talk to. I have got a lot of support from there, met some really brilliant people just like us, patients, carers, parents, friends ......all from various backgrounds and at various stages of Chiari and all kinds. I would really recommend signing up and saying hello!
http://www.chiari.co.uk/chat
I have really appreciated your post and would love to chat some more if you are up to it?
Speak soon, and in the mean time.....get a DWP Voodoo doll and start sticking pins in it!
Take Care
Chris
I'm taking the Bull by the horns today and writing to my MP Andy Burnham who just happens to be the Minister for Health.
He's a local chap and has kids of the same age as me, so a family man.
I am going to ask him to look into the issue on a number of sides.
1. DWP do not list Chiari / Syringomyelia according to the CAB.
2. NHS choices do not list Chiari or Syringomyelia in any detail at all, just a small reference to Chiari Type2, nor do they list it as a major cause of Hydrocephalus.
3. Chiari or Syringomyelia are not currently regarded as a "long term condition" therefore do not have the same level of pre-surgery or post surgery care as others.
4. I am also going to present him with the cases that I have come across to date and show him how poorly treated we are as a result of the lack of information on the condition.
I can but try, I know other people are doing their bit too, so lets try and get this sorted from a number of angles.
There is also a petition on line for all of those that have a voice and would like to sign up.
Click on the following link.
http://bit.ly/3J8Vqu
You will be directed to an official government website where you can add your signature.
As many people in your household over the age of 18 can sign it.
You will be sent a confirmation email, please click on the link that it gives you to confirm your vote.
No two people can use the same email address as it will only count as one vote. So make sure that you each use a separate email address.
This thing will work if we all put our names behind it!!!
Thank you
Hi again, thanks for the reply. I agree with all you say about them not even recognising chiari. Proven point is when they told me that he has had a shunt put in so he he is better now. I told the brain surgeon that at our last meeting and he just laughed.
As of now still no reply regards to wether hubby is even entitled to esa at all, never mind which group. Its a bit stressful and we both jump when the post arrives. I thought the Doctor ( it was a doctor not a nurse etc) who did the medical appeared genuine and understanding but im not expecting fair treatment.So far its been guilty until proven innocent.
If you would like a the story of my husbands story of diagnosis and treatment to submit to your stories i can do that. It makes fairly interesting reading (similiar to a Stephen king novel being interesting ;) Let me know, and chin up.
Hey Hunny, thank you for coming back. I know that you have enough to cope with at the moment. I will be attending my tribunal soonish, so will keep you informed of the outcome. So far as hubby being entitled to ESA - he will be just as I am and the least they will do is place him in the same group as me. If they tell you he can't be, then lodge an appeal to be heard at a tribunal - they then have to pay him ESA whilst he is going through the appeal stage.
Your story? YES PLEASE??????? Would love to hear it. Would also love to hear yours too, about how you are coping and how you deal with it all.
Chin up yourself too, there's lots of people that want to help. Make sure you join the forums when they are back up......lots of great ordinary people in there that can help with their own experiences ;)
great to see you back here!
TTYL
Chris
Hi again, i will send his story to your email address so you can check it out for suitability. It will take a couple of days to type up though as it is fairly long ( some may say boring =p ). Strangely enough he doesnt remember the majority of it so its a good job i have a good memory!
Take it easy from Better and BB..he is BB aka bowling ball as he currently has 3 holes in his head ;)..you have to laugh
Hahaha you are so cruel! Well, they call me "zipper head" round here anyway.....for obvious reasons after the surgery ;)
I look forward to seeing your story, and whenever you can get it to me will be fine.
I actually found that writing mine was a good tool for myself to think it through and come to terms with it. Might work for you too?
Boring? Never in a million years. Each person that has sent me their story has said the same thing - but they never are! and I am sure won't be any different.
Thanks again and take care......... remember to keep that bowling ball polished as it slides better!
Chris
Today i recieved a letter along with all the appeal paperwork which had been submitted for my appeal. The decision was to stop me recieving ESA. They said that basicaly they believe i am well enough to start work again and now it has gone to a tribunal. I called the benefits office who told me i might have to claim JSA. He told me that my GP and Neurosurgeon's comments did not apply but it goes only on their Health Proffessionals comments. The Doctor i saw at the DWP had only been qualified for three years as i looked her up. So what they are saying is that a Doctor of Three years has more idea than a Neurosurgeon. I could not believe my ears. He also told me that if i win at the tribunal. They will then appeal aginst it themselves. This is wrong. I cant begin to tell you how many times i have contamplated suicide. Yes i know that is the cowards way out and maybe i wouldn't go that far, but thats how it makes me feel. If i am disallowed it then my house will go for sure, i get it in the neck constantly from my wife of how much trouble we are already in and what will happen if it is stopped. Why wont they listen.This appeal has taken 6 months already, how much longer.
Hi
The DWP haven't got a clue and its all about cost saving and not about the client....ie You!
I just got my tribunal appeal decision back and they have decided in my favour, which basically means that they understand that I have limitations and that I am entitled to claim ESA.
The irony is is that I returned to work 3 weeks ago as I have had no support from them, their back to work "pathways" is a joke as have received no support from them whatsoever other than to make sure that I get to the appointments so they can fulfil their quota.
I am finding it difficult at work, not sure how long I can physically do this for.....it does seem to be getting easier, but the fatigue element is concerning me.
I know how really frustrating the DWP can be, they don't care if you are losing your house or how much debt you drive yourself into whilst they spend so much in administration costs trying to save themselves a few quid a week out of your pocket.
You can get help with housing costs. Ignore what they said about not listening to your GP as well and your NS. If your GP deems you unfit for work, then they will continue to give you sick notes, nobody can tell them otherwise as their decision is based upon the symptoms that you present to them. Your GP works for you and the GP that the DWP employ works for them...end of story.
The DWP can appeal as many times as they like, then you take it one step higher. If you have credible evidence and score enough points against the criteria then they have no other option other than to award you ESA at the full rate and then housing benefit also.
It's a long road, a very bumpy one too. You could also look at DLA if you need help at home, do a Google search and read through the Direct.gov website.
Keep plugging away, you have to put pressure on these people as they don't like making it easy for you and they wont.
TC
Hi Chris,
I got my letter today stating that my appeal has gone to tribunal. I have to send the form back to them. I have asked that i attend. What would you recommend i do and what to take and who to take if anybody.