× Members

A huge thank you!

6 months 2 weeks ago #266336 by asmith25
A huge thank you! was created by asmith25
I just wanted to give your website some feedback and an enormous thank you. Here is my story, sorry if it’s too long. My journey was less than straightforward.

I am autistic and was awarded Disability Living Allowance from childhood indefinitely many years ago, just for everything to be taken away in the transfer to PIP which for me was at the end of 2016, whilst I was at university doing my Master’s Degree, which I received help for from my Disabled Students Allowance. I was denied PIP like most people and this put me off for many years as I didn’t know my rights when it came to benefits and life generally got in the way, whilst I was trying to discover life and myself. I was encouraged by friends and family and even my local Job Centre to try again over a couple of years, which I eventually did at the start of this year. The pandemic and the huge amount of grief that came from losing my Nan in January 2021 made me realise I actually needed this support and I came across your website before I applied for PIP the 2nd time, back in January 2021.

I took a chance and paid the membership fee to access your guides and I am very glad I did, as they clear up a very confusing welfare system. I wasn’t sure if I was even eligible for PIP as autism is hard to understand even for me, as the person living it, even though I struggled with a lot of daily activities and maintaining a job. The guides to the benefit helped me realise I was eligible, as it was the only help that was available back in lockdown. A few nerve wracking and anxious months pass before I have a telephone assessment, which despite me feeling understood by the assessor still resulted in the same 0 points as before. The decision maker made me very angry with their so-called arbitrary reasons to deny me, but because I was unable to send any medical evidence due to everywhere being closed when I applied for PIP, that was also used against me. Because I was now aware of my legal rights, I immediately asked for Mandatory Reconsideration, which was in June 2021.

Another two anxious months pass for the DWP to tell me the same result whilst ignoring my medical evidence which was sent with the Mandatory Reconsideration, claiming it was too old even though my condition hasn’t changed between childhood and adulthood. In that time, your website held a talk with Mark Perlic and another on PIP mobility, which I learnt quite a lot from. I bought Mark’s book to try to understand the law on PIP as the decision maker’s ‘reasons’ actually made no sense to me or anyone I showed them to. By now, I also understood a lot more clearly about my personal needs from research and watching others on Youtube talk about the same issues I have, I knew the DWP was BS-ing me. I kept in semi-regular contact with Mark Perlic after buying his book and he was very keen to help me despite living over 100 miles from him. He also stopped me from being ripped off by ‘welfare solicitors’ who wanted to charge £3000 to ‘help’ me. He wasn’t sure how to help me at first but had my local authority (Hertfordshire County Council) contact me, but later agreed to help as my own council wasn't able to help at the time.

The Mandatory Reconsideration Notice came at the end of August and I was still given 0 points. A part of me wanted to give up but I came too far to give up now so I immediately appealed and repeated all my reasons for needing PIP. This is where Mark’s help really came in as I was mentally exhausted and severely depressed at this point in the fight. Once I saw my appeal papers, I knew I was right to keep going though, as it became clear my support needs were increasing and my general health was starting to take a big hit and I was barely leaving the house due to the exhaustion of everything.

In late September, I also took another chance, I decided to apply for the Work Capability Assessment part of Universal Credit which my Job Centre didn’t think I would get until I showed them the reasons I thought this was necessary. This benefit’s form was extremely confusing to follow but your guides were again very useful. Mark helped me contact my County Council (Money Advice Unit) to help with the Work Capability Assessment and they were able to help this time. The welfare advisor at the Money Advice Unit was extremely helpful and understanding of my needs and managed to write it all in a very concise way. I also paid for a doctor’s letter and got a sick note at this time confirming my mental health conditions.

This is when my luck began to change, I was notified of my PIP hearing in early November for the 29th of that month (just two weeks ago). To my surprise, my Work Capability Assessment was decided as a paper decision just a week before my PIP appeal. I was put in the work related activity group (LCWRA) for the next two years, and suddenly I knew everything would go in my favour. It only took a month for this decision to be made thanks to help from your website and my welfare advisor. Also in early November, Mark gave up a whole of his Sunday to write a PIP appeal submission for me as a last attempt to change things and clarify everything. This worked very effectively.

Finally we come to my appeal which was done remotely by video. Despite the Universal Credit decision, I was still really anxious and hardly slept over the weekend. I was drinking heavily to cope with the stress and anxiety. Mum attended for emotional and social support. My appeal was one of the few actually attended by a representative of the DWP, who took one look at me and what was written on my behalf and immediately conceded all my points on needing prompting for daily activities, this was enough for the 8 points needed for an award, which was the minimum I would now get. The Universal Credit decision came at just the right time to change everything. However, this wasn’t the end of the hearing which was attended by a judge, a doctor and a disability specialist. They were incredibly sympathetic and understanding to my complex needs and because of the help from your website as well as Mark Perlic, this shortened the length of the appeal as most of what the tribunal wanted to ask was already answered in writing. They only had to ask about money and planning journeys and I had to try my best to make them realise how unpredictable Autism can be, which wasn’t easy to do for me verbally. Mum told me after the hearing the DWP representative looked ashamed by what I had to say and that I had to fight to get to this stage and get any disability benefits at all. The appeal was over after 45 minutes, I was exhausted but felt relieved and was told to expect a final decision in just two days.

The war for PIP was finally over on December 1st when I received the letter from the tribunal. I knew to expect at least a standard award but the tribunal went further and actually agreed with what I thought I was entitled to, I was awarded 12 points for daily living and surprisingly 10 points for mobility (I told them in writing I should have got at least 8 points for mobility but didn’t think I would score higher). This has been awarded for 4 years, which again was longer than expected, knowing how stingy PIP can be. 10 months of fighting for PIP was finally over and I could start to get my life back!

In conclusion, I started this year with nothing but my standard Universal Credit. At the end of this year, I gained Universal Credit Support Group/ LCWRA and the Enhanced Daily Living and Standard Mobility components of PIP (higher than my DLA ever was) and I just wanted to say thank you as your website’s resources were a key part of me gaining this necessary and life changing support. I am sharing my experiences in the hope that others that may be going through the same as I have, can see that you shouldn’t give up, seek help from others around you and keep going until you get the support and benefits you deserve, so you can live your lives in the way you want and deserve to. The other thing is to make possible a benefits system that is actually accessible, treats us all with dignity and respect as human beings (hopefully the changes in Scotland help with this) and turn away from the dark age of Tory austerity, so no one has to go through this ever again. The DWP can and must do better than this! Thank you Benefits and Work, I feel like I have a future again.
The following user(s) said Thank You: Susie27, phrank, Misty, TheHud, BIS, Gaddy, facta_et_verba, Sarah, Angel

Please Log in or Create an account to join the conversation.

6 months 2 weeks ago #266337 by Gary
Replied by Gary on topic A huge thank you!
Hi Aaron Smith-Lyons

Welcome to the forum, you might want to have a look at the following FAQ which explains where everything is

Welcome to Benefits and Work

That is really terrific news, well done and congratulations. Thank you for telling us your journey, it will help fellow members not to give up. :):)

I am tagging my reply so that the back office also get to read your encouraging post.



Nothing on this board constitutes legal advice - always consult a professional about specific problems
The following user(s) said Thank You: asmith25

Please Log in or Create an account to join the conversation.

6 months 2 weeks ago #266342 by phrank
Replied by phrank on topic A huge thank you!
Hi Aaron,

Your story is truly inspirational. It will give other forum members a lot more hope - knowing that if you fight hard enough, you can achieve.

Congratulations on the award. I think your Christmas is already happy before it's even started!



Please Log in or Create an account to join the conversation.

6 months 2 weeks ago #266343 by denby
Replied by denby on topic A huge thank you!
Dear Aaron, I am the other half of a late-60's-diagnosed Asperger's person, and have recently got myself on the waiting list for an official assessment as the AQ50 indicates I too likely have Asperger's. So may I shout with happiness at the eventual outcome of your too-often-seen lengthy saga, WOOHOO! WELL DONE! ENJOY!
best regards,

Please Log in or Create an account to join the conversation.

6 months 2 weeks ago #266351 by BIS
Replied by BIS on topic A huge thank you!
Hi Aaron

Thank you for telling your story. It will give hope to many members who like you have autism and find themselves at the mercy of assessors who have little knowledge of the complexity of the condition. Many congratulations on your success.


Nothing on this board constitutes legal advice - always consult a professional about specific problems
The following user(s) said Thank You: sally-jane

Please Log in or Create an account to join the conversation.

6 months 2 weeks ago #266367 by Angel
Replied by Angel on topic A huge thank you!
Morning. Well done for fighting Aaron. I know first hand how debilitating that is (my PIP appeal went to the high court and took 2.5 years). Take it easy in 2022 and get some MH support if you can. You’ve been through a lot and it will take time to process. KEEP EVERYTHING for next time, which hopefully will be a lot smoother (mine was). Breathe xxx
The following user(s) said Thank You: Gary

Please Log in or Create an account to join the conversation.

Moderators: GaryBISCatherineWendyKellygreekqueenPeteKatherine
We use cookies

We use cookies on our website. Some of them are essential for the operation of the site, while others help us to improve this site and the user experience (tracking cookies). You can decide for yourself whether you want to allow cookies or not. Please note that if you reject them, you may not be able to use all the functionalities of the site.