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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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No pip

PracticingAcceptance

Senior Member
Messages
1,861
Thanks @Lisa108 . I waited from 3.30 to 5.30 (I think - was totally out of it) and then they turned me away because it was too late. They had over ran with their previous appointment because they didn't label the claim correctly as a complex appointment so they didn't schedule enough time for it. So that left me f**ked. Spent a lot of energy for nothing. Angry.
 

Lisa108

Senior Member
Messages
675
Wow, I'm so sorry, @lior!
That is terrible. What a waste of time & energy! Feel hugged! :hug::hug::hug:

I hope that something good will come of this, maybe at the next appointment you'll see a different assessor than the one you'd have had today and the new one will be better...

But still, this s*cks!
 
Messages
74
Sorry to hear that lior. I don't blame you for feeling angry and frustrated...but... even though it might not feel like it right now, every cloud has a silver lining and all that. The extra time may allow you to be even better prepared for your assessment though I'm sure you focused hard on it before. Also, I'm guessing you went to the assessment alone? I hope the delay allows you time to organise, if possible, someone to go with you. It tends to help the outcome if you're assessed with someone, especially if that person is supportive during the assessment. Or at least it can limit the lies the assessors tend to put in their reports if they know there's a witness.

Good luck.

PS I'm replying to this thread because I was notified about the replies as I've posted here before. Does anyone know how to turn these alerts off? Not for this thread in particular but I get alerts for threads I posted in years ago....
 

PracticingAcceptance

Senior Member
Messages
1,861
@nokmax76 just above the opening post it say 'unwatch thread' and 'ignore thread'.

I did have a friend with me... it was very helpful to have her there, she dealt with them so I could just rest. She missed the afternoon of work because of the appointment. I'm really lucky she's willing to make time to come to the rearranged appointment, whenever it may be.

I tend to anxiously over-prepare so I'm going to continue to struggle with trying to not do that. It would be more useful to spend my energy on other things.
 
Messages
74
@lior glad to hear you have such a supportive friend. Yes you are lucky, but the friendship says a lot for you as a person too.

Thanks for the heads up on ignoring threads. Now you've said it of course, it's obvious but then again, brain fog doesn't do obvious ;).

Once again all the best to you and anyone else going through this ludicrous assessment nonsense.
 

Molly98

Senior Member
Messages
576
Thanks @Lisa108 . I waited from 3.30 to 5.30 (I think - was totally out of it) and then they turned me away because it was too late. They had over ran with their previous appointment because they didn't label the claim correctly as a complex appointment so they didn't schedule enough time for it. So that left me f**ked. Spent a lot of energy for nothing. Angry.
:(:mad:
 

PracticingAcceptance

Senior Member
Messages
1,861
I have the PIP assessment tomorrow now... home visit. Have super tired myself out today in order to show them my worst. Feel a bit sick and weirdly tingly right now. I'm going to be paying highly for this day out. I had a great day though.
 

PracticingAcceptance

Senior Member
Messages
1,861
Thank you @Moof! It's over now. Didn't take long. I don't understand why, I think she said something like they have all the info they need to make a decision already. Don't understand why they have assessments then....!?!

She said at the end that everything is consistent and not to worry... but I absolutely don't trust her. She said that I was seeing the right people in terms of treatment, at the end, which made me cry a lot. I think she might have been worried that she made me cry. She didn't mean to. I cried because if this is the best - if these people are the right people in terms of treatment - it's flipping pitiful. I haven't seen any specialist ME doctors, only a nurse. There isn't funding for me to see one. TREATMENT FOR ME/CFS IS NOT GOOD ENOUGH. The hospital course I went on made me worse.

She seemed like the kind of person I would totally be friends with - my age, kind demeanour. But I don't trust her further than I can throw her, and I wouldn't even be able to lift her up, with these arms :)
She was reassuring but I don't think I'm safe enough to get my hopes up.

I refused the physical examination at her suggestion because I knew I couldn't lift my arms that high, and it would have made me worse. Worried that refusing that part of the assessment will negatively affect my chances of getting benefits.

I didn't get dressed or shower since it's a home assessment.

Just 4-8 weeks to wait... then possibly a tribunal...
 
Messages
74
Best of luck Lior but you are right to keep your guard up. As a vet of more assessments than I care to remember, these snakes are trained to fake a good rapport with claimants.

You are of course right that treatment for CFS is pathetic but I am surprised that being as unwell as you are and living in London you are only seeing a nurse. There are a few specialist ME centres in the capital. I've been to two. Neither has done much to actually treat the illness but it does help the mind to be believed and having written medical confirmation of CFS that is recognised by mainstream medical authorities helps when being assessed - I wouldn't have won my last tribunal without it.

I forget what the rules are about mentioning Dr's and Clinics on here so I'll PM you some details. Maybe your GP can re-refer you. Anyone else who wants to know just PM me.

Hopefully, in the long run with so many MP's recognising our plight in the two parlimentary debates this year, things will change for the better. But I urge any of you not already involved to use any spare time or energy to get involved with the cause of getting some proper recognition and treatment for CFS, even if it's just signing online petitions
 

PracticingAcceptance

Senior Member
Messages
1,861
@nokmax76 thanks. I am with a specialist CFS clinic. I saw the nurse only and she wrote a comprehensive letter, which I believe was approved by the one doctor they have there. I was told that people don't see the doctor unless they have a complicated case, and apparently I don't. I know how little the medical profession knows about ME/CFS, so I don't have hope that seeing a doctor will change anything, so what's the point? Anyway, that letter seemed to be useful for PIP.