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Hello I’m urbanenergi

urbanenergi
urbanenergi Member Posts: 25 Connected
New to the group, thought I’d say hi 👋🏼

Comments

  • Ross_Scope
    Ross_Scope Posts: 5,464

    Scope community team

    Hello and welcome to the community @urbanenergi, it's nice to see you join us. 

    Would you like to tell us a bit about yourself?


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  • Libby_Scope
    Libby_Scope Posts: 204 Courageous
    Hi @urbanenergi :) 

    Welcome to the community! How are you today?

    The community has a lot to offer, whether it be having a chat with someone new, or if you need help with specific challenges relating to disability etc. We are here to help you :) 
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  • janer1967
    janer1967 Member Posts: 12,914 Disability Gamechanger
    Hi and welcome to the community Feel free to join in or ask any questions 
    I have professional experience in HR within public,  private, and charity sectors.  If I can help I will 
  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,079 Disability Gamechanger
    Hi @urbanenergi - welcome to the community from me also. I hope you are keeping well. Please join in with any discussions of interest, & visit our 'Coffee lounge' to meet other members, & play some word games, etc. :)
  • Teddybear12
    Teddybear12 Member Posts: 1,474 Pioneering
    Hi @urbanenergi I hope you enjoy being part of the Community. If you have any questions please ask. Take care.
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser Posts: 593 Pioneering
    Hello @urbanenergi

    Welcome to Scope's forum. It is great to see you have joined us. How are you today? Would you like to start by telling us more about your motivations for joining Scope's forum and your interests? It would be great to get to know you  :D
    I am a Scope volunteer. I have knowledge about the following subjects, gained through professional settings such as high level education or employment: autism spectrum disorder, dyslexia, down's syndrome, social, emotional and mental health difficulties, assistive technology and education. Pronouns: She/her.
  • urbanenergi
    urbanenergi Member Posts: 25 Connected
    edited November 18
    Thank you for the warm welcome 🙏 I was signposted here by the help team so trying to find my bearings. You can say I’m new to having a disability too 3 years in & it’s not going away - I tried even to tell myself I haven’t got one as well after being treated differently since I fell into my complex condition overnight literally.  After being told 12 weeks for full recovery has turned into years & counting! My body painfully reminds me & wont be ignored by my head. I went to sleep one night got rudely awaken by shear shooting pains & numbness in my leg from & to my lower back & pretty much that since. I couldn’t sit, stand or walk without holding onto things to drag my leg along, until I got given crutches at spinal clinic. The 1st 6 months was a lot of investigation what was causing the sciatica, still found myself mostly bedbound & was off work for 6 months but I had to go back or lose my office job, so I went back mastering crutches & had to be driven about horizontally I couldn’t sit, as at that point I cancelled my driving test which was due the month after this started. I did pass my test with a full on trapped nerve in automatic & a good cushion. 

    I managed at work with difficulty even with access to work equipment largely forced to sit for long periods tethered by keyboard. Eventually several nhs departments later after still no improvement after 17 months I was referred to pain management clinic - hurrah! Finally someone knows their stuff & actually listened to me, my nerve was trapped in my piriformis muscle & denervation freed the nerve but after 18 months being trapped it is permanently damage so still get sciatica to this day & will spasm without warning just not for 24/7 like before, I can recreate it just by sitting on a firm chair - boom the nerve triggers. I had this also in my other leg which finally got done in January and there was the big issue of my lower back that got much worse. After injections & ultra sound imaging he diagnosed osteoarthritis & officially confirmed osteoarthritis in whole joint after bilateral denervation of the joint in September  - & unfortunately only gave me 6 weeks full pain relief now back on codine & can’t see him till April next year. 

     I had left my job last December as it became intolerable with management changing, they weren’t understanding at all & expected me to toe the line as a normal person - the wanted me off my specialist hours & return to normal shift pattern or I’ll get no help which could get me a disciplinary should I not get the work support. Comment made to me was why don’t I go to claim benefits, health over wealth comments from managers really hurt - guess they don’t want me to work here anymore! So I left hoping once the denervations had been done I could find work elsewhere as it wasnt worth the daily breakdowns.

    I did try the benefits this year but I was awarded 0 points not even 1 per stick!! They treated me awfully, that’s a whole other massive 6 months of being treated like rubbish!! Basically osteoarthritis is not a disability so not covered by pip even arthritis charity confirmed this. So I get nothing I live on partner wage & savings but I need to get back to work but finding the stick is basically shouting this person has mobility issues before I even start, either fussing or saying this job isn’t for me as it could be a problem for me??? My dad had a job at his place I said I will give it a try even he said no this job isn’t for you hired someone else - it’s just reinforced my fears of being able to work! Even staff at vaccination centre fussed rushing over to me as they saw my sticks I need for standing for any period do I want a wheelchair or a sit down even sitting without my cushion that I use even on my sofa/ car. So even still I’m in a grey area of disability condition isn’t classed but I have mobility impairment so am I or not?? 🤷🏼‍♀️ 

    There you have me in a longish nutshell sorry it became a life story. 

  • janer1967
    janer1967 Member Posts: 12,914 Disability Gamechanger
    Hi and welcome to the community and for sharing your story with us 

    I'm sorry for all you have been through just like to say pip isn't about the condition you have but about how it affects your ability to complete the activities 

    Did you appeal the decision and get some expert advice with your application and refusal 

    Don't apologise for telling us your story we are here to help if we can 
    I have professional experience in HR within public,  private, and charity sectors.  If I can help I will 
  • Teddybear12
    Teddybear12 Member Posts: 1,474 Pioneering
    Hi @urbanenergi Thank you for telling us your story. You have been on quite a journey never be sorry for it. If you have any questions or need some support just let us know. Take care
  • urbanenergi
    urbanenergi Member Posts: 25 Connected
    I got the advice too late so would have to go through the whole process of pip again 😢 I did explain how my conditions affect me but the so called work capacity form needs a trades description act, as I wasn’t claiming pip as DLA isn’t my issue, employment is an area I can’t control to adapt to. I was claiming ESA I basically put all the issues I have with sitting standing & walking but the assessor was only interested in my home life which left me baffled when I referred to work as experience a lot of issues & barriers in the workplace. Such as being on the 2nd floor if a fire should happen I’d block the stair route. I was told by a dwp advisor upon complaint that I would be best finding another illness & submit a claim for that instead ??? Absolutely ludicrous. So I have to go through job route no choice really. I’ve even considered posting on job groups outing that I have a disability so that if I go for interview they would look past my stick & I can go through a normal interview process as at the moment it’s quite alarming for recruiter when they see someone with a stick you can see it it’s so obvious even though I shouldn’t have to under the equality act 2010, but even still to avoid any awkwardness for the recruiter & myself. 
  • Reg
    Reg Member Posts: 104 Pioneering
    Hello @urbanenergi

    Welcome to the community. Your post really struck a chord as I eventually retired from my job as I could not do the commute or sit for the required length of time.

    Like you, I have tried injections and they were bliss but only worked for a few weeks. I am on long term crutches and opoids and totally know what you mean about job interviews. You seem to either get a look of horror and a face adjustment to compensate or totally over the top positive disability attitude. There does not seem to be a middle ground.

    I now work from home and any freelance work job interviews over the last few years have been over the phone. The great thing about that is that disability has never cropped up in the job interview conversation as it just is not relevant as they never see me. When it has eventually arisen it has been a none issue as by then they know you and your work and really appreciate the fact that as you are stuck in the house a lot you can produce a lot of work.

    On the PIP and disability front I wondered if you could say that you still have your original condition as like you I have been told that osteoarthritis is not a disability as it is deemed treatable so , for example, you can not use it as a condition to claim vat relief. I am OK on that front as I also have mild CP and hip dysplasia and they count. I have not gone down the PIP route yet as heard so many tales like yours.

    Do you have any jobs in mind that you are thinking of applying for? I found that local authorities were very pro disabled but I do not know if they would have anything in your line of work?

    If you do decide to apply for PIP again then the very best of luck with it. There are a lot of people on the forum with a lot of PIP experience and advice and I am sure they would do their best to help you.





     
    Reg

    I am a Scope volunteer.
  • urbanenergi
    urbanenergi Member Posts: 25 Connected
    @Reg I’m so glad someone understands, sometimes you think it’s all in my head but exactly that as you describe the shock horror or over fussing is the reactions I get. I’m not used to it at all & don’t know how to react, worry I can be a little defensive maybe cos my own mind struggles to come to terms with it. Osteoarthritis (OA) is only managed through pain management & exercise (I do like a good treadmill or dance session - sadly OA likes to spoil the party with the pain & stiffness for simplest things can be hard) there isn’t a cure for it so was surprised that it’s not classed as disability even though it has effects on everyday life with me combined with other multi skeletal issues its effected my mobility to some degree but I’m a brave little warrior find my own ways to even put a pair of socks backwards than bending 😂. My small kitchen is a thin galley so yes I can get a bottle of milk from fridge to other counter whilst still holding the opposite counter so my balance supported but that’s the example on the pip form, in a bigger kitchen I may struggle. Because us humans have a wonderful way of adapting that it goes against you on pip. I worked from home last year & for a lot of people it worked, but it was out of sight out of mind if I struggled plus missing some vital equipment & wouldn’t let me back in office someone else was using my desk. Isolation was another issue that’s heightened my anxiety a lot I’ve isolated at home for the majority of 18months still got covid twice though 😧 I missed the social interaction now I’m anxious of it feeling overwhelmed so rather get back to the office or workplace I struggled more with work being at home cos I don’t feel I’ve got a break from work. When I have gone for interviews or just out generally it’s dealing with over fussing caring humans or assume I can’t do something without trying - I’ll always try cos I’m stubborn in nature to the selfish ignorant types that don’t give me enough room to open my car door so I can get my stick out properly. I’m learning that having a disability is really hard work at times even frustration with myself 🤷🏼‍♀️ 

    I will look at council although my previous employer was supposed to be disability confident & turned out not so after all. Thanks for your reply I’m not used to people understanding hence always feeling that I have to explain all the time. 
  • poppy123456
    poppy123456 Member Posts: 24,839 Disability Gamechanger

     Basically osteoarthritis is not a disability so not covered by pip even arthritis charity confirmed this.
    I completely disagree with this. Lots of people claim PIP for the way their arthritis affects them. Remember PIP isn't awarded based on any diagnosis, it's how those conditions affect your ability to carry out daily activities based on the PIP descriptors.
    When you were refused did you request the Mandatory Reconsideration (MR) on that decision? If you didn't, was there any reasons why?
    Re-applying again using the same evidence you previously used will likely see another refusal.

  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,079 Disability Gamechanger
    Hi @urbanenergi - I completely agree with Poppy. My main condition is generalised osteoarthrosis (OA) due to a genetic condition which caused hypermobility of my joints, hence the OA. I also have neurological problems, but I knew they wouldn't be known about, so didn't go into that with my PIP assessment. As above, PIP isn't about any diagnosis, rather how that affects you looking at the PIP activities/descriptors.
  • urbanenergi
    urbanenergi Member Posts: 25 Connected

     Basically osteoarthritis is not a disability so not covered by pip even arthritis charity confirmed this.
    I completely disagree with this. Lots of people claim PIP for the way their arthritis affects them. Remember PIP isn't awarded based on any diagnosis, it's how those conditions affect your ability to carry out daily activities based on the PIP descriptors.
    When you were refused did you request the Mandatory Reconsideration (MR) on that decision? If you didn't, was there any reasons why?
    Re-applying again using the same evidence you previously used will likely see another refusal.

    My whole pip was based on the effects of my mobility clearly stating I need walking sticks to get around especially over 10 mins slow walking & having to stop in between so it wasn’t OA persay. I put in a complaint as I applied for esa not pip but they use the exact same form for work capacity. Assessed by a cardiac nurse (former) so no idea of chronic pain MSK conditions. I was told that a mandatory consideration would fail again cos it would be by the same assessors I need another illness apparently to change their decision. My dad known as raptor hands as only 1 finger per hand even got refused pip & appealed & only got 2 points!! So not worth going back through all the stress again being called a fraudster soon proved my sick notes were genuine & got back paid for the 6 months sick.honesty wouldn’t treat a dog like they did with me in fact animals get treated better. So only option is to work & that is not as easy said than done. 
  • poppy123456
    poppy123456 Member Posts: 24,839 Disability Gamechanger
    The PIP form and the work capability assessment form are definitely not the same, they are completely different. PIP2 form here. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/713118/pip2-how-your-disability-affects-you-form.pdf
    UC50 form here, not sure whether it's ESA you're claim but regardless, they are both the same forms, just the ESA50 has ESA on the front, not UC. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/985609/uc50-interactive.pdf
    Both assessments are also very different because PIP and ESA have totally different criteria.
    It's worth remembering that the assessors that do the PIP assessments do not need to have any knowledge regarding any conditions because it's not about a diagnosis. The same applies to the work capability assessment.
    No idea where you're getting your advice from but it's not correct, sorry. When you request the Mandatory Reconsideration the assessors have nothing to do with this part, it's all down to a different decision maker. There's always a better chance of the decision changing at Tribunal stage, rather than MR stage.
    If i were you, i'd be changing the advice agency that you're using because it seems like they're not really giving you any correct advice. Start here. https://advicelocal.uk/




  • urbanenergi
    urbanenergi Member Posts: 25 Connected
    Thank you for explaining the whole system is so confusing it’s put me off altogether I can’t do a consideration as time has passed since it was refused. So it would mean a whole new claim & to be honest the benefit system is too confusing though thought there would be some help or support, at least job applications are simpler in comparison. I’ll starve before being treated like that again. 
  • poppy123456
    poppy123456 Member Posts: 24,839 Disability Gamechanger
    You have 13 months to request the Mandatory Reconsideration (with good reason) if DWP refuse then just carry on to Tribunal. Do bear in mind that any worsening of condition won't be taken into consideration. They will only look at what your condition was like up until you had your original assessment.

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