Published on 12, July, 2020
I would say I've had a most horrible day, went back for ESA assessment as did have one with a nurse on 20th July, tho she postponed it as she'd thought I'd be better assessed by a doctor given me being a prem baby , and I had difficulty breathing. So went along to another assessment today ,( which was running 2 hours late), when the "doctor" said about his qualifications , he wasn't a doctor at all but a physiotherepist. My main issue is Aspergers and mental health issues, and WTF would a physio know about them?
I've just had my result. 0 points. I have hEDS, FND,CFS,POTS and Fibro on top of Aspergers and have difficulty doing any activity without needing recovery time. The points system for ESA and PIP does not recognise variable conditions. They suggest I apply for Jobseekers. I believe that would be detrimental to my health. I'm a mum and struggling to get by doing that and a little crafting work as it is. I feel like they've shot down my reasons by oversimplifying the qualifiers. Can I raise one arm above my head? Yes, at the moment because my shoulder and ribs haven't subluxed today. Some days the answer is Ow! No way! Can I cope with small unexpected changes? Yes because my child wakes me up at different times. Um..no, I've had eight years to get used to that and some days it still affects me. Change a small thing about my expected plans, or go a different route and my anxiety flares up. My conditions are complex. I don't fit into their tick-boxes but I still genuinely need the support.
What a result.. They have no idea what the cumulative effect of multiple conditions is like. I don't know what all the acronyms mean but I have cfs/fibro and a string of other things on top too. It's crazy. They're supposed to take into account if you can do things reliably and safely. I hope you appeal. Did you use the Benefits and works info to help fill in your forms? If not use them to help appeal they're really helpful. I don't fit in their tick boxes either. I suddenly have a Pip apt next week that I wasn't expecting .. no idea what the outcome of that will be. I was anxious as soon as I heard they wanted to see me.
hypermobile Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Functional Neurological Disorder.
Yes, I'm going to appeal and have in the past used Benefits and Work site. I wrote an email to an advocacy group today so fingers crossed.
Well done. It's a hard slog to fill in the forms then keep up momentum for battle. I'm too tired to look up those conditions but thank you for writing them out in full. They are unfamiliar to me. I hope you find some of the other "threads" interesting and join in