Thursday 12 August 2021

Nayu's News #254 It is Time

This story has a happy ending! This is my fave character in the anime Aikatsu! Mizuki

I have wanted to share this post many times in the past 18 months, but until the situation concluded I couldn't face talking about it because of the stressful nature. Many of you know I have chronic illness which is predominantly extreme fatigue and severe pain, to put it simply. I am unable to work now because of it all, and as a result am on a disability benefit known as PIP, Personal Independance Payment. In 2016 I got transferred to PIP from an older disability benefit. There are two elements to it, personal care and mobility. Back then I qualified for standard personal care and enhanced mobility so I was able to get a car through the charitable scheme Motability. The car gave me indepdnence, I could go to some hospital appointments by mself, visit friends, do my shopping. 


In February 2020, just as the pandemic was starting up here in the UK, I had to renew my PIP application. I filled in the forms, sent them off and waited. I knew the decision would be a few months,  but since there was no real change I hoped it would be straight forward renewal. Ha! Wishful thinking. 


I got word that the assessment deadline was pushed back until August 2020 due to corona. Months later I received news the assessment may not happen until February 2021 again due to Corona. All this time there was underlying worry that I may not qualify again for a car, although by that time I was going nowhere and my car was more of a nuisance as each week I would either go for a short drive if I was well enough or simply sitting on the drive letting it run for a bit to keep it ticking over. 


Fast forward to January this year and I receive a notice that I no longer qualify for PIP. It was devastating. At the moment I live with family so the drop in income was ok, I still had another benefit so I could by my food and other essentials. It meant I'd have to return my car but because of Corona that didn't happen until the end of May, because Motability had to wait until the government told them it was safe to accept cars being returned. They very kindly paid for the car even though I wasn't having the benefit that went directly to them. 


Naturally I appealed the decision, and that appeal took time. I can't remember which month it was but I got told that appeal was rejected. The appeal had been made with an excellent letter from my specialist nurse who didn't mince her words in how ridiculous it was that the PIP assessors never contacted her about my unique condition. It must be noted that losing that appeal was not a surprise. It is well known that the people who assess PIP applications get paid a bonus for kicking people off PIP. They don't want people on it and the reassessors are in the same office.I was in touch with a specialist PIP advisor who helps people like me with my condition appeal PIP- thanks to my specialist team for putting me in touch with thta person.She helped me with the first part of the appeal process, and the second which was going to tribunal. 

Madoka is shocked at something in Aikatsu!

The tribunal is super official, held at court with a judge, a doctor, and someone else who has a link with the medical field. Unfortunately it was months before I got told when the tribunal was. I expected it to be next year but it was 30th July in the afternoon, which is my worst time of day but I didn't change it because I didn't want it postponed. I wanted it over and done with. For the tribunal I submitted evidence why I felt the decision to take me off PIP was wrong. My advisor wrote a brilliant letter, and I think I had another from my specialist nurse who is one of the most amazing people on this planet. Anyay, I think at the end of June I got notice when the tribunal was. I was excited for it to be over, the stress has been immense and on a scale I can't begin to describe. Having to defend how sick I am is not fun. I hoped I'd be successful, 75% of all those who go to tribunal are succesful. 

I was super nervous and hoped I would get it back, but I didn't think it would be easy and I wasn't sure that I'd necessarily get it back at the same rates I initially had, because of how ridiculously strict the 1st appeal had been. Legally I am not allowed to disclose what happened in the tribunal, or say how awesome the judge was, but I didn't have to say anything. I got told at the start they had looked at my case, couldn't see why I'd had PIP stopped, and it will be reinstated! I was overwhelmed by the good news. I will have to be reasseassed in a few years, unlike in the US disability in the UK isn't permanent, and while it is possible that a similar traumatic experience regarding reassassment may happen again, it is hopefully less likely because of the weight of the judge's decision is high.

I am one of the lucky ones. There are many who are put off by the stress of the appeal, and they don't appeal. Or worse, some start to appeal but then kill themselves because the stress is too much. It is for them that I decided to write this post. Stress for anyone is bad, more so if you have chronic illness as it can make it worse. I can't begin to share the immense stress I've had over the past 18 months. The sheer joy and relief that it's over and I've been successful is simply wonnderful. I'm very thankful to God for this happy outcome. I hope one day the system changes and doesn't try to punish the people who really need to be on PIP. Having to prove how sick you are is not fun. I was fortunate to have a supportive medical team who knew the right people to help me. There is help online too for others in my situation. I hope this never happens to me again, but now I know it could I am more prepared for it. 

A young Otome sliding down a rainbow Aikatsu!
 

I am not getting another car: I didn't use it much before the pandemic, and I certainly hardly used it during it. The pandemic is still ongoing (think it's now endemic, so its part of life in my country). I am still not seeing friends despite being vaccinated as it could still kill me. I highly doubt I will be social for at least another year. Either way, the money that would have gone straight to Motability for upkeep of a car will go to me so I can save and use it for getting a taxi if I want to go places. It's not worth me having a car for the little I use it. 

I may have some really positive life changing news early September, but for now it's back to life as normal with a massive stress out of my life. Yay! 

I am disallowing comments for this post because I don't want trolls, and I'm unable to help anyone else going through PIP appeals personally as everyone's situation is unique. There is help out there and countless info on it. If you want to message me you can on Twitter.

I'm so happy I won!!!! (Ichigo from Aikatsu!)