every little helps
Is there anyone out there that can help me change the minds of Herr DWP? Please. xx
Here's a couple of suggestions that might help you. As an OUCH member we can refer you to the Brain Charity who assist sufferers of all neurological diseases in the UK, on issues including benefits applications. If you would like us to contact them, send me a PM with your address and telephone number and we'll refer you on. Further, there is the Disability Rights UK website which has helpful information and the Benefits and Work website too. Also its worth talking to your MP at a constituency surgery - Mine was a gem .
Also, and this is important you can ask for a copy of the assessment report form, Form PA4. They have to provide it if you ask for it. It can be a bit of an eye opener when you see what was put by the assessor. So next step would be to call and ask for that report, and also ask them how they reached their points decision. If you do not agree with what they say yuo can ask for a mandatory reconsideration. Don't give up. They very often bat us down in the hope that we will go away. And its worth remembering that about 95% of applicants are successful at appeal. Let me know if you want to talk to the Brain Charity.
Hi there, I was diagnosed by my Consultant Neurologist with Chronic Cluster Headaches around 2 months ago. The condition forced me out of my job and since I have applied for PIP. How long does it take for them to get back to you regarding an assessment or your application from sending it off? Thank you in advance.
That should be in the booklet/info that accompanied the form. I checked mine and it says within 16 weeks. You could perhaps call the DWP after three weeks or so and see what's happening. If you do call them make sure you have your NI number, and or any reference they have q uoted on correspondence with you. Good luck
I was refused and I gave up just joined this today in the hope for some help ........... Do I message you Val ?
C J Shapiro
I'm not an expert on PIP, but I can refer you - as a member - to the Brain Charity for some guidance on what to do next. You say you failed, what stage of the process were you at? Do you mean that you failed to score points in the decision they sent you after you had had your medical assessment, or have you gone through mandatory reconsideration and then gone on to a tribunal and failed? That info will help the Brain Charity know where you need assistance. The info I have on PIP is based on my own experience. There is also a member of the charity who can help with much more detailed advice and if he sees your post on here he will reply to you. But if you want to be referred to the Brain Charity, I need your permission to so and I'd need you to send me a private message with your contact details.
Hope this helps.
Afternoon all, just to got my results back and revived 0 points. Feel like just giving up, I’m a chronic sufferer with attacks most days (I get the odd 24 hour break here & there) but they’ve assessed me as ‘able the majority of days’. I really felt the assessor was understanding & was actually supportive of the suffering I go through. Obviously not :(
I am going to call and ask for a copy of the assessors report, but any advice on where to go from here would be most welcomed. Thank you
Hi to all you Cluster Heads and especially to those suffering with PIP as if we did not have enough to contend with. I am in the same situation as many of you a chronic sufferer PIP assesment 0 points mandatory consideration declined and now awaiting my tribunal total wait since applying some 13 months have contacted the Tribunal to be told the case is imminent but they cannot find a venue a total of 39 weeks so far since the Tribunal received the paperwork, but I refuse to give in as hard as it is and I hope all of you have the strength to do the same. In my opinion the massive obstacle is that no one apart from ourselves, some nuerologists and specialist headache nurses have a clue. We all need to continue the fight eventually one of us will be able to get a victory and hopefully achieve a case law that can be used against the DWP until then all we can do is summon the strength to fight and beat them. Good luck and PF wishes to you all x
There are many of us who have succeeded with PIP applications, myself included. Fight on, get advice from Disability Rights UK, Benefits and Work, and as an OUCH member from The Brain Charity. Talk to your MP, mine took up the case as I got to tribunal stage and within a couple of months I was successful.
Very often we are scored low at the first stage, I think the DWP hope we will give up and go away, but we won't!
Hi I have just got my letter from pip and got 0 I even took a letter from my headache nurse saying I was chronic cluster headache and still got nothing I have asked for the report but not sure how to go forward any help would be appreciated thanks Dave
Hi Val, I sent you a pm - do we need a referral to the brain charity? Or can we contact them direct?
Thank you --
Hi i have been cursed with this pain since i was 26 i was only diagnosed with chronic cluster headaches 6 years ago and im now 41. Iv just been given 0 points after an ESA assessment even though i showed nuerologists report. Im awaiting a reply after asking for a mandatory reconsideration but mentally im at my wits end. I cant see how anyone with this condition is expected to fight year after year. Where has the common sense gone amongst these so called professionals. Hope you have some luck mate dont give up thats exactly what the DWP hope for.
Hi iv just received 0 points even though i suffer chronically daily. Do not give up get angry and fight these cretins every step of the way. Us suffering with CH have enough to deal with without the DWP trying to put people in the gutter or worse a wooden box or padded cell. I wish you luck.
Hi Paddy, I’m a chronic sufferer too! I honestly don’t know how they assess us I really don’t! I wish I lived the life they have put me down as having in the report, my days consist of tears, anger, o2 and injections but apparently I am ok the ‘majority of days’. I’d happily let them put cameras in my home so they could actually witness a day with me rather than just reading bits of paper I wish you luck too - if clusters can’t beat us I’m pretty sure we are not going to let a bunch of pen pushers who obviously have no understanding of our condition eh? Stay strong! :)
Only once in 6 years have i been assessed by a nuerologist at an assessment and even he said he hadnt seen a case like mine in 12 years, every other time iv been assessed by someone with no understanding of my condition whatsoever like physiotherapists or normal doctors. Thats what makes my blood boil they assess us based on information provided by someone without a clue. Im fighting to have every future assessment attended by a neurologist and recorded as the lies the assessors tell is unbelievable. It would be laughable if it wasnt so mentally draining.The chuckle brothers could run the DWP better and one of them is in a wooden box.
Sorry to hear how difficult this is for you all I to have had knock backs with the DWP my advice is and always will be take it to a tribunal I passed out seven times during my last pip assessment I have Trigenimal Neuralgia etc etc as well as CH and I still was refused. THEY WANT YOU TO GIVE UP. Please don’t I have won both my tribunals so far touch wood should I need to fight again I will and pray I win again the whole system is a joke big hugs to all xxx
Just got my mandatory reconsideration back with same score of 4. Now I’d sent a very comprehensive document to them considering variable conditions; risk assessment; critique of the HP document where it twisted my statements and added in personal assessments of my condition and situation; letters of support from my GP, Neuro consultant and Member of the Scottish Parliament. it made no difference as they were only interested in my original form and the ATOS assessment. I’m had contacted the Brain charity who sent me some helpful documents, so please use them. I used lots of online info and my manual reconsideration form went to six pages of analysis, which I doubt they used.
I’m off to phone citizens advice for help for the Tribunal. Never, say never.
Keep fighting! Talk to your MP too, mine was a diamond - he has a team that does nothing but assist his constituents with PIP applications. You might also do an online search for pro bono solicitors in your area who deal with benefits applications, - worth a try.
Just had my mandatory reconsideration rejected they say im fit for work even though my condition has not changed in 6 years. Iv spent the last 5 days curled up crying in agony wishing i would die, so how on earth do they think im well enough to work. I hate being on benefits and i worked from 15 till this pain became unbearable 6 and half years ago. Id gladly go to work if i could. So im facing a appeal or tribunal. How am i supposed to do this year in year out on top of chronic CH. Im literally at my wits end because of the DWP.
Well, I'm just about to send off my Tribunal paperwork, to make I fit in with the timescale. I can't get help from CAB, as their bod that knows, has left the building, so to speak. Got an appointment that is outwith my timescale, with my local council benefit welfare team. I've chosen a different district, as my local team were absolutely useless in representing me before. I've boned up on all the web sites you've told me to. Awaiting a letter of support from my consultant. He's recommending me for Neuro modulation surgery, in London. That might just give them some idea of the severity of my illness. Am I confident? Nah, not a chance. My challenges to my decision contained in my manual reconsideration were very detailed. Six pages long detailed. Quite a dissertation. Did they read it? Not according to the MR they didn't. How very bloody dare they! They seem to be hanging on the "it's a headache...get over it", stance. It's not, never has been, will be and I f'ing won't!!
Hey y'all an update from Costa del Glasgow
Today I went for my Tribunal. I went in with 4 points and a feeling of complete dread.
I came out after a complete grilling with 7 points, so just missed daily living component by 1 point. Totally gutted. I could not convince them that I needed help with dressing, and to be honest I kinda messed up when talking about it.
However I got 10 points on Mobility for planning and following journeys. This got me a standard rate mobility award till May 2020, which is better than nothing and a good start for next time.
Keep at it folks, never give up and never give in. We have an invisible disability. They were tough, but listened and were sympathetic.
Well I just posted , but somehow managed to wipe it, not my day! You might like to have a word with your MP, mine was a diamond, he has a team that does noting but assist applicants for PIP. Or you could try and find a pro bono [free] solicitor on a google search. Cluster headache is a disability and you should be entitled to more than you got, but well done you for fighting on!
Part of my work involves supporting people to PIP/ESA assessments (albeit around a different illness).
My recommendations would be
a) to take someone with you. This is partly around evidencing that you sometimes need support and partly around having someone to prompt you to describe "a bad day" - It feels really easy to try and "be dignified" and say that you can do things.
b) while being honest, be able to describe "a bad day" as well as the days that you can manage.
c) remember you are being assessed from the moment you get there (perhaps even before). If you can get to the reception desk, sit in a chair, stand up from a chair, orientate yourself when called for etc, this will be noted. (To be honest, I can't really imagine an assessment for Cluster Headaches - while okay, I would score zero points and while not, I would be asked to leave because I couldn't tolerate being asked questions and would probably tell the assessor to jog on.)
d) If you believe you're entitled keep going to the tribunal (and beyond). The process is clearly designed to put you off.
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