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 hi jason, ive bin going round in circles trying to find out about pip. nurosupport no help just told me the dwp dose not reconise cluster migrains as a disabilty so no pip unless i can prove t to dwp. i mentiond london casinos v hood where the courts made a ruleing that ch was a disabilty. i was diagnosed 6+year ago by nurolagist with cronick ch. dh

Hello Darren,

My husband (CCH for 6 years) applied for PIP last April. Very long story, but yesterday got called by the DWP and told that he has been awarded the highest rate of PIP for both daily living and mobility. You need to be affected by Cluster Attacks on more than 50% of the days of the year, I presume you must be if you have Chronic CH.

We had a massive fight to get there, but we did. I am very happy to share with you any information about how we acheived this if it might help you.

Also, if you follow this link you will find on that page a pdf of the DWP info on CH which the assessing companies are supposed to use. 

https://www.whatdotheyknow.com/request/ebm_lima_repository_trigeminal_a

best wishes,

Harriet

Many items and comments have been very useful on here to read. In regards to employment and work it is reasuring to know many others have issues. I used to work full time (5days), I chose to reduce my work down to 4 days, to get longer break/weekend, so I could manage better, but some weeks are still a challenge.

The hardest part is others understanding. This seem s the case again!

hi victoria, yes getting others to under stand is hard, the way i discribe it,, ch attack is incapastating like epelepsy, after like dementure, and pain in side your head like a tazer that wont stop, ive got some leaflets called pain so bad you want to die, about ch, if you send me your address in a pm i will send you some no probs, and any one else that wants some gladley, im always glad to chat with any ch ers espesaly when thay are down an low, all the best d

Thank you Darren for your reply. Sorry for such a slow reply, I have not been so great the passed couple weeks and I am still getting used to using this too.

I did have one fact sheet like this and gave to employer at least2 yearsago, but that would be very helpful.

I've read the problem issues experienced by suffers relating to PIP assessments. I have been in receipt of DLA for the last 4 years and was recently contacted for a PIP assessment. I have now received a response stating I score no points in any category and therefore my DLA will cease with immediate effect and I am not eligible for PIP. They state that because I am in employment (with great difficulty) and that I drive to work (under 3 miles) and that I can cook, bathe, dress myself etc (when not subject to an attack) I do not qualify. They also discounted any possibility of risk of suffocation from noe re-breathing masks thus I did not require supervision of my partner during night-time attacks. They have not taken into account any effects or the attacks themselves bring or any subsequent recovery time. I have asked for a review and also requested they send me a copy of the report completed by the assessor. I now have to explain why I disagree with the assessment.

The assessor clearly had little understanding of cluster headaches and despite me offering her a copy of the ATOS/DWP training document (kindly provided by OUCH) she declined stating "I don't need this". I think it incredible that suffers should be discriminated against in this way. Any advice would be most welcome. Would it be a good idea to write to my local MP?

My thanks

Can I ask if you are a chronic CHer?

Harriet

Hi

I  still diagnosed as episodic albeit bordeline with between 2 weeks and 10 weeks relief per year I seems as time goes on I get shorter periods of pain relief

Well the amount of days you are affected more than fulfils the criteria of 'more than 50% of the days of the year'. I cannot see how either working or driving can possibly be relevant to proving you are not severely incapacitated for part of most of the days of your life. It sounds to me as if you have been as unlucky in the system as my husband was, until we beat them into submission which was no mean feat I have to say. Since then I have learned many things about PIP the DWP system through giving others a hand to get it. I am also preparing some evidence about the outrageous way some CCHers have been mistreated by both the DWP and the interviewing companies.

If you would like to have a chat to see if anything I know might be useful to you, just send me a private message.

Harriet.