My Journey of the Personal Inconvenience Payment

Hello guys.
Your gonna need some popcorn...this case is so long and complicated that not even Titanic has a spot on this.

Have suffered from a blood condition known as Sickle Cell Anaemia from birth. I knew that applying for this benefit would be very hard work because it's not a disease that is widely known let alone understood. Intermittently for 26 years I have struggled with pain; trying to just stay in a job, education and just living normally not allowing it to be an excuse. Of course no matter how hard I tried the illness got the better of me.

Back in July 2015, I was admitted in hospital for two weeks due to severe pain within my knees which ultimately led to Avascular Necrosis. I left hospital being unable to walk with the aid of crutches and is typing this message eight months today still on crutches, the disease went in for the grand finale by permanently finishing off my mobility as a result. AVN is progressive and so is Sickle Cell, but it goes to show how severe the disease is as at the age of 26 I'm depending on crutches both in and out the house. My crutches act like the worlds slowest mobility scooter. Anyway:

- August 2015 applied for PIP for the 3rd time, this time with aid of a representative.

- October 2015 called in for an assessment, which I attended with the same representative and my partner.

- Within that same month I received the results and was placed into standard mobility, I had missed the enhanced criteria by 2 points. So third time lucky...to an EXTENT . I've had hundreds of pain episodes, but there was something about this one that made me think I won't recover from...and I was correct. So I am housebound. It was the classic story of claimants being screwed upon the 20 to 50 metre rule.
Team IDS 1 - - BabyFace_Inc 0


- December 2015 unwell, I decided to get my partner on my behalf to request for a mandatory reconsideration...of course it was declined hence the title of this entry .
Team IDS 2 - - BabyFace_Inc 0

- In the same month I had no choice but to appeal just to gain the extra two points. In this same month of course I was keeping in touch with the representative; he was happy to be by my side and seemed keen. He was so keen that he said he will come to my house so we could discuss my grounds of appealing and what is to be expected. At first I had marked for paper based, but it was he's encouragement I changed to oral hearing. He works at a Sickle Cell Centre in London, so I thought he would know how represent me with ease.

- January 2016 I receive correspondence from the tribunals service; honestly I didn't want to go to court however the judge saw that it was more appropriate for me to come in based on the extensive medical evidence inserted within the application. So there was some hope but was still sceptical. The clerk of the tribunal was ordered by the judge to book a 75 minute slot next available.

- February 2016 time goes by and I'm still talking to the representative via email three weeks before the hearing date but he still did not make the effort to show . Although he was promising and saying the reason why he couldn't come right now was because he was busy.
Going to court you have to be prepared so I had asked him a very reasonable question, "what is it your going to say at the tribunal and what do I have to say that will satisfy them in awarding the extra points needed to me within the accordance of the law?"

After that question he then replied strangely and said that he couldn't provide me an answer that was in line with the law declaring how he was not a lawyer. I think it was he's stealth way of declaring that he wasn't an official that wasn't based within the judicial system (which of course I knew). Within the same email he then proceeded something on the lines to say, "you are better off seeking advice from the CAB who will be able to assist you in acquiring someone within the law". I'm no Sherlock Holmes but I think that was he's indirect way of saying he no longer wanted to represent me. His feet got so DEEPLY cold, SO MUCH that even The UK Big Freeze (2010) couldn't make hell freeze over.

I don't know what it is I had said for him to respond like that, but the question I had asked was basically black and white, what do I need to know in order for me to have a successful tribunal. What is it that your gonna say that will make them listen to you (the representative) to give me the points needed that are in the requirements of the law. It can't be that bad can it? Or is it?

Honestly by this time I was just so tired and drained by this whole process I couldn't let this affect me too much, so I simply replied to him stating what I was actually trying to find out.

We're still in February, and three weeks before the case I finally receive a notice announcing the tribunal date in March 2016. I then proceeded to email the representative and say, "I have received the letter notifying of the court date, I don't know what is going on but please if you choose not to represent me any further please let me know but either way I have to go with or without you" (because it was personally too late for me to acquire a new representative). Did I want to represent myself? Of course not. I didn't stand a strand of hair, not even a speck of dust.

- March 2016, tribunal day. I got up early in the morning, brushed my teeth, ate cornflakes for breakfast...what utter nonsense, look let me just cut to the chase I LOST . I was not granted the two points yet again to move me into the enhanced rate.
The final score stands at:
Team IDS 3 - - BabyFace_Inc 0.
Team IDS won.

There is nothing funny about this situation because I am fully aware this is my life I am talking about, however sometimes I have to laugh at some of the issues otherwise the stress will lead me to a seriously early grave. By no means does it mean I am not affected by this in the slightest because of the humour; believe me it's a coping mechanism.

I don't know anything about law nor do I know how the whole system works, but one thing for sure is your hand is not held when you walk into the room facing the three members of the board, NOT that I had expected it to be held. What I mean is you have to know what your saying; and when you say what you say, make sure you give DETAILED and WIDE OPEN answers. I tried as much as possible, but my mind seriously boggled and even though I had so much things written down on paper I forgot the majority of what was supposed to have been said. The questions are asked in such a way that in my opinion are quite subliminal. For example, the doctor had asked me about my blood transfusions. He asked, "When do you have your transfusions", I replied, "It is treatment, I need 7 pints of blood every 6 weeks to try and reduce the severity of pain". He then asked me, "when did you last go in for the process" and I replied, "yesterday".

He didn't actually ask me whether they will continue and how long for if they were to continue. The fact I didn't tell the doctor that such treatments can't be relied on for a long period of time because of antigens, antibodies and the effects of the immune system, he is going to think that the transfusions will better my life in the very long running but it's impossible. As that's the case, he thinks I clearly don't need the care because of the treatment making an overall better impact on my life. It's quite hard to believe considering I have been swinging through crutches for eight months in a row. So the advice is; please say everything you need to say whatever it is, as long as it relates to the same subject and don't even wait until your asked.

At the end of the hearing the judge asked me, "is there anything more you want to say?" I then replied, "regarding the whole mobility issue you have to understand that ATOS didn't grade me correctly..." She just rudely interrupted me and said, "we're not here to debate about the report, our job here is to see what descriptors apply to you in accordance with the statutory requirements of the law". This woman just put me in my place. You know those awkward moments where your heart pumps so erratically like a person punching their way out a paper bag and your backside muscles clench with nervousness? Yeah that was me (well that happens to me anyway).
I mean what she said and the manner she said it in wasn't really rude, but it was the method she had used to state her sentence. She had given the floor to me so why did she not allow me to finish?
What I was trying to get across to her is that ATOS had definitely misreported the fact I could stand and then walk for more than 20 but less than 50 metres. I mean someone who has left hospital and is so deeply dependant on crutches swinging through them for eight months is something seriously wrong. I was trying to make them understand the logic of why it wasn't possible that I could mobilise for more than 20 but less than 50 metres. She wasn't hearing it and I felt so belittled I just said, "ok sorry". I mean wow. It was like a mother shouting at their child in a supermarket. "Mummy can I get sweeties?", "NO!". The child then curls up, that's exactly how I felt.
Secretly they snubbed me, they didn't respect me because I didn't know how to organise myself for this tribunal I needed a lot of help and guidance...this is why luckily my representative had my back.

Yeah that's just it though isn't it. He didn't show. He didn't once say he would not be willing to come and he had the date confirmed with me.

Oh asides from all of that did I tell you the representative personally assisted me in writing the PIP2 form; assisted me to the assessment, and was willing to fight my corner at the tribunal in the first place? I am laughing outside but I'm crying inside. I mean I got royally screwed. Me and my partner (who was only there for moral support) had to go in, I had waited since 2015 for a hearing, I had no choice.
Now no matter what you think my faults are about the representative not showing, it doesn't matter because there is nothing I could or can do, it's been done. This is a person who I personally knew professionally in my dark days (not that they are any brighter now) when I was still suffering from crippling pain but wasn't permanently disabled yet. So guys was it ACTUALLY unreasonable for me to have a lot of patience for him? Because the best representatives in my opinion are the ones who can fight your case and know how to do so from a legal aspect, and with a high ability of knowing about the illness you suffer from and how it affects you (of course that isn't a compulsory measure). He is a specialist in working for people suffering from Sickle Cell Anaemia within the NHS.

Guys you must acknowledge that this application wasn't a naked one. There was extensive but not excessive medical evidence about my illness throughout the years. Very detailed and not only stating what I have but HOW it affects me which is the most important thing to demonstrate. We're talking about reports, discharge letters, update letters all from doctors, the GP and consultants. Health psychologist, haematology, physiotherapy, you name it. It just wasn't enough. It makes me wonder if they actually do read the material? Before the hearing, I even wrote a 9 page statement to the board, the purpose of this was a back up shall in case I forget half of the responses I planned to say, at least they have read it. They would have an idea of what I am actually trying to say to them.

It's a hot mess. It stinks to high heaven. I feel like it was all in vain.


March 2016

This is where the train should technically terminate...but they still may be light along the tunnel. Given the decision notice I observed that decisions can be cancelled. As a result of the cancellation the judge must:
A- Substitute with a new decision OR B- Arrange for a new hearing date

Before any of this can even take place, the judge has to agree to it and they have to see whether it is in justice to do so. Now the only reason I think I can go through this route is because the representative didn't show. I just think I lost because the board didn't believe a thing that was coming out of my mouth or, they simply were not satisfied with how I answered the questions in accordance to how THEY wanted to hear it. But even so, the evidence should have accounted for what I was saying and for how they saw me mobilising to court anyway. I just don't understand.
If the representative was there, he would've basically cleaned or tidied up my answers in a way that satisfied them. So the fact he didn't show I think significantly harmed my case in many ways but I must blame myself because I just didn't know how to deal with it, but can I REALLY blame myself?
Hundreds and hundreds of pages of paperwork to deal with plus the evidence for eight months. CAN I REALLY BLAME MYSELF? The application is enough in itself to cause further illness or complications of your current illness even if you have assistance. Either way its soul destroying.

I have written a letter to the courts to try and get the decision cancelled and still yet to receive correspondence back from them.

But people this whole issue is getting me depressed and it doesn't help the fact I am home 24/7. I don't do anything. I'm trying to resist this whole thing from virtually eating me up but it's so hard. Things won't get better for me and I am pretty sure the illness will cause more damage in other parts of my body. Because although I am having so much healthy blood being pumped into me, the Sickle Cells fight back by causing so much pain well before I'm due a top up. That's not supposed to happen. I'm scared of what the future holds for me but whatever shall be shall be.

Oh and when it comes to a review, this is what I would have to go through every single time knowing that what I suffer with will never change for the better? I know I'm only 26 and to some people they would say I haven't lived at all, but God this is the hardest battle I have ever had to fight in my life. I am tired.

If it does come back that they deny the cancellation I don't know what the term "error in law" refers to, or whether I even qualify for it. I'm not even going to touch Upper or 2nd tribunal. I'm getting so desperate that I'm willing to go for another assessment and just hope that ATOS will tell the truth this time, THE TRUTH. The risk? Having the whole award stripped from me but then again; with this current award I cannot get out anyway, I cannot stay mobile anyway. So realistically what do I have to lose other than my dignity?

I don't understand.
I had to write this just to get advice but more importantly I thought that by sharing my experience and thoughts with people would make me feel better.

I don't know if all of this suffering is worth it when my health is declining anyway, the situation is not helping at all.


Thank you for reading.


BabyFace_Inc.

I understand I cannot appeal a decision to the upper tribunal just because I am unsatisfied with the outcome.

I also understand I cannot request a decision to be set aside just because I ask for one.

What I am saying though is that a representative I had dealings with which was also confirmed with the tribunals service to be by my side on the day of the hearing did not show.

Now I feel if the representative had shown, I'm sure I would have had a very much better chance of winning the appeal. The way the representative has behaved is just unprofessional, but this is something I cannot help, this isn't something through my own negligence. He just decided not to turn up although they said they will be there.

• a party, or a partyʼs representative, was not present at a hearing related to the proceedings;

That is one of the conditions to have a decision set aside.
The representative wasn't there. I just feel the representative could've better explained things than myself and if he had prepared me, I would've known what to have said.

As for the report inaccuracies on distance? Don't even get me started. There are some things you don't need obvious evidence for, they can see me and the way I mobilise, I am their evidence. Someone on crutches for 9 months but I am told can walk more than 20 metres but less than 50? Give me a break.