Tribunal was today. A blur!
Felt almost like a job interview, but one where you describe the worst job in the world. The one that no one would ever want.
I was questioned for an hour, which is much less than I had feared or expected (I was told some tribunals last 2-3 hours). My representative from the CF Trust, Sangeeta, was not only amazing on the legalities side, but also gave me the strength to carry on. I cannot thank Sangeeta and the CF Trust enough for their incredible support.
For any CF peeps applying for PIP; I strongly recommend gaining free advice from the CF Trust before applying. Had we done so, we may have been able to avoid this proceeding altogether. To support the amazing work that the CF Trust do to support the CF Community, alongside all the essential research that they fund, please donate here, thank you. (And for the generous Anon donation this week, which I can only assume is a close friend, thank you so much!).
Isaac wasn’t well enough to attend (laid out in bed with sinus headache, cough, and a bad tummy from an incorrect creon dose with his pizza the night before) but I think of this now as a blessing; he doesn’t need to hear the difficulties of his everyday life articulated, spelled out, and interrogated in this incredibly detailed way, for strangers that are judging his (largely invisible) disease and how it impacts him individually. This is his reality and he’s lived with this all his life. He has two perfectly well siblings; he fully understands the difference between their lives/health and his.
The panel was made up of a judge, a GP and a disabilities expert. Mostly the questions were well meaning and felt...alright. Only the GP did query why Isaac was not yet on CFTR modulators (such as Kaftrio), despite the fact that I had explained why Isaac was in the 10% of people with CF for whom the current generation of drugs would never work very clearly in his paperwork, as had his CF nurse, and the CF social worker; suggesting he had not fully read our case. Still, it gave me the chance to explain this fully which was good. The supporting letter from the CF Trust and his ENT surgeon also proved powerful, I think.
I felt sick in the days before. Thinking I might let him down when he needs me most. And I felt sick going into it.
Isaac, on the other-hand was actually sick in bed, but gave me a huge hug the day before, and after, thanking me.... but he shouldn’t have to thank me, should he? We shouldn’t even have this fight on our hands.... CF is a progressive, genetic disease, for which he has already been classified by the DLA as being breathing disabled *and this review only came about as he transferred from DLA to PIP after he turned 16.
Despite that fact that they make the decision immediately after the case, we now await the decision by post.... POST! A few anxious days at most, we hope.
Thank you all so much for the kind messages of support. My stress levels are still stars high, but I can see the light fading now x
*T’was the Twattish Tories that introduced PIP as an alternative to DLA, and despite a rise in population, it was all about cost savings in social care;
“Although PIP was expected to cut costs by 20% over the longer term, costs were forecast to rise by £1billion to £15.4billion in 2015-16, partly due to a rise in mental health issues and learning disabilities.”
“The Multiple Sclerosis Society of Great Britain produced a report about its members experiences of the test in September 2015. 1,780 participated. 42% of those who had a face-to-face [PIP) assessment said the hidden symptoms of the condition had not been taken into account. More than a third said face-to-face assessments had caused their condition to relapse or deteriorate.” Wikipedia.
Willem de Kooning, Untitled IV, 1982. Hope to share some amazing Ukrainian art next time.
