OK, I know this forum is not really used anymore, but thought I would update whoever does read it.
So if you read my last 2 posts, got 0 points, and mandatory got 0 points again, so off we go to tibunial. Still not got a date for this yet, but today received a call from DWP about my complaint (I dont remember making a complaints, but I do struggle to remember things sinse CH got me, so its posible) anyway, they have looked at the claim again, and would seem some of the medical evidence supplied was not looked at (hmm, synical me thinking thats a load of codswallop) anyway the claim has been sent back to the assessors and this time they have come up with a different responce. They have not said how many points, but I have been granted both daily living and mobility (I also have some issues with my feet that I wont boar you with) both at enhanced rate, and backdated to the claim date last June.
With a review of 18 months time (yes I really would pray this condition would be better by then!)
So I have no idea what this complaint was, if there was a complaint, or if maybe whoever is putting the stuff together for the tribunial thought they did not have a leg to stand on, and just sent it back rather than going to tribunial.
So for a change a good news story.
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Submitted by Phil - OUCH UK on Sat, 20/04/2024 - 18:27
PermalinkSorry it seems empty here
Sorry it seems empty here most of the time Karl. A lot of us Episodal sufferers do ignore the forums when we're out of bout; but I'll read the posts usually monthly, as I guess many do, without logging in: So, you're not alone.
I forget a lot that happens during a bout: Pretty sure it's a REM sleep deprevation thing.
Congratulations on the PIP award.
Phil.
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Submitted by Dorothy on Sat, 20/04/2024 - 20:06
PermalinkThat's great news, Karl, so
That's great news, Karl, so pleased for you. A lot of people use Facebook to chat but it's good to see some of our subscribed members still posting here. Congrats on your success!
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Submitted by Phil - OUCH UK on Tue, 23/04/2024 - 18:14
PermalinkFacebook? Pity.
Facebook? Pity.
I prefer the anonymity of the forum; a 'dirty laundry' kind of thing.
Tell them the Forum Few said 'Hi'. :)
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Submitted by Knoxyknox on Wed, 01/04/2026 - 22:22
PermalinkNew member. Been a CHer since 1998!
This is really good to see (although a couple years old!) but congrats non the less. Every positive case has a positive impact to someone down the line!
I am at the back end of one of my most managed bouts to date but as I get older, the sleep deprivation is really affecting my ability to work.
Luckily I am a bank support worker so I can have my self time off but it really does start to cause issues.
I have a first time meeting with the local citizens advice drop in tomororw.
I hope next by the next bout ( hopefully a three year remition I will be hopefully awarded some kind of help.
masked it all for 25 years and now it's all catching up. Great to be part of this community no matter how sparse people log in, it's good to see am not alone.
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Submitted by Phil - OUCH UK on Thu, 02/04/2026 - 12:45
In reply to by Knoxyknox
PermalinkWelcome to OUCH Knoxy, sorry
Welcome to OUCH Knoxy, sorry you have to be here.
It does seem quiet, I think people just prefer social media to forums: Those apps are popular for a reason.
Good luck with the CAB
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Submitted by Knoxyknox on Fri, 03/04/2026 - 17:11
In reply to Welcome to OUCH Knoxy, sorry by Phil - OUCH UK
PermalinkThanks!
Thanks!
I can totally relate to not wanting to deal with the desease while in remission. Im making Fridays my OUCH log in day so I can hopefully offer support to others.
I went to the doctors to get a catch up referal
to Salford Royal so I can get my nae in the hat for a Gammacore, oxegen and injections are great but I work in a support team with quite challenging individuals so they are not always a safe option.
Maybe an app would be a good way for
the community to be more consistent with notifications etc. is there one or plans for one ?
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Submitted by Knoxyknox on Fri, 03/04/2026 - 17:18
PermalinkAn OUCH app would be great.
An OUCH app would be great. There's an app called Migrane Buddy... maybe we need an OUCH.org one called or something! With a feature that tells people to give you space and tells them '..that's really kind but paracetamol won't help'
and precedes to explain why to the Good Samaritan so we don't have to *dash1*
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Submitted by Phil - OUCH UK on Mon, 06/04/2026 - 12:18
PermalinkMyclusters is an app
Myclusters is an app especially written for CH. We have a card included in the Ouch welcome pack that explains that you're in extreme pain and can't talk at the moment, for those moments.
There's also a closed group for sufferers on Facebook that seems to be popular.
An app for socialising would have to compete with the current social media available, but you never know what the future brings.
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Submitted by Knoxyknox on Mon, 06/04/2026 - 12:46
In reply to Myclusters is an app by Phil - OUCH UK
PermalinkThat's brilliant. That will
That's brilliant. That will come in very useful.
I will sign up to that app.
Cheers Phil