JD

barely here

[JD @onlyjo_po]

@DoodleChronicle Gosh I’m sorry to hear this, they are definitely trying to make this a you problem but it’s clearly not! What a horrible situation. They should have some evidence if they are going to try and accuse you of that, but I can tell they don’t!

[JD @onlyjo_po]

@RITB_ How do you even access them? There are no crisis houses in Brent (London). There was one that was available via the HTT but only open very briefly

[JD @onlyjo_po]

@Lara_Fergie99 I was due to have sacral nerve simulator but opted instead to have a stoma (was advised to do this) but not quite the same as you? Is this something that’s been mentioned?

[JD @onlyjo_po]

@silverpebble Hello! In my rushed excitement I just booked onto this course and then realised I can’t attend on that date 😭 I’m gutted! Is there anything I can do; can I return my ticket or transfer to something else? 😥

[JD @onlyjo_po]

@adamfare1996 This is one of things I found so difficult! I felt so panicked everytime it slowed down, thinking I was getting an obstruction again! I still feel like it now (occasionally) a year later! Hope it settles down soon

[JD @onlyjo_po]

@jaunty_aphorism I feel your pain. Nothing I can say other than, I’m not sure what the point is either, but our lives aren’t pointless even if we are made to believe (and treated like) they are x

[JD @onlyjo_po]

@ChloeSApter Oh yes please do. I’m in London too but don’t want to put specifics out on public message!

[JD @onlyjo_po]

@Shrink_at_Large I’m in the same position. Will hear the final response this week. But they said yes initially at panel, then said no to funding weeks later (hopes dashed).no chance to appeal. No explanation. Devastated doesn’t cut it, feel like they given me a death sentence 😔

[JD @onlyjo_po]

@adamfare1996 The first few days after this surgery is the worst 😭 I feel for you! Definitely once things get moving it will hopefully feel better. Stoma pain was worse than proctectomy pain (I think you had that too?)

[JD @onlyjo_po]

@lynne_drummond @BBCiPlayer @ocdaction @BBCBreakfast Yes definitely. I’d have hope the director of complex care would have understanding of it esp. after reading Springfield report. Not even being given the right to appeal panel (no reason given). I guess if it is ax and thx given earlier it will prevent situations like mine

[JD @onlyjo_po]

@AshCurryOcd Unfortunately OCDaction don’t offer advocacy any more 😓

[JD @onlyjo_po]

@SGV_UK I’ve been the same recently. It becomes hard to know what I’ve experienced in real life and what I haven’t! Hope it doesn’t get worse for you.

[JD @onlyjo_po]

@AshCurryOcd any advice? Was accepted to Springfield OCD unit, told I had funding in July and now been told I don’t and am no longer on WL. I’m devastated. It’s been years getting to this point. No back up plan given by anyone. Told I need the treatment but now not being given

[JD @onlyjo_po]

@lombardo1298 That’s really frustrating, sorry. Maybe push on the referral to Cassel or somewhere? There has to be a better plan!!

[JD @onlyjo_po]

@lombardo1298 That’s really hard. If you had a care coordinator type person who was consistent would that help? Or even the hope of a long term plan to be referred to somewhere like the Cassel? Are there charities you could access? We have the Listening Place in London which is incredible

[JD @onlyjo_po]

@lombardo1298 This sounds incredibly difficult 😞 is there something ideally that would help you think? What do you think would be useful long term? (Might be an annoying question sorry!)

[JD @onlyjo_po]

@Mayz131 @GreatOrmondSt What trust are you in? I’ve just done this disability leadership course in my trust (in London) and the guy who runs it is so great and advocates for disability rights (he’s disabled too as were we all)- you could get in touch with him? I’ll dm you his name if you want.

[JD @onlyjo_po]

@Mayz131 @GreatOrmondSt What? Why did something happen today? Was bullying directed to you? I’m really sorry 😞