PIP, DLA and AA
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Appealing my PIP decision

Jason01Jason01 Member Posts: 20 Connected
edited July 2018 in PIP, DLA and AA
Hi . I have ankylosing spondylitis and fybromyalgia. I'm currently appealing my pip decision,  and I cannot begin to tell you how stressed and worried I am . 

Replies

  • [Deleted User][Deleted User] Posts: 118 Listener
    me too Jason1 . its a absolute disgrace how we are treated. The degrading assesment made me cry. The twisting of words and the total disregard for ovbious disability is in my view abusive and cruel. I attended in my scooter but lost all my previous daily living points and scored 4 for mobility . what a joke eh! I have appealed.
  • Jason01Jason01 Member Posts: 20 Connected
    It's a long and involved process.  It's taken 30 years to get thus far , and now all the work professionals and myself have done could be wiped out by a loss of mobility 
  • Jason01Jason01 Member Posts: 20 Connected
    I only needed 2 more points , citizens advice are now helping resolve this 
  • [Deleted User][Deleted User] Posts: 118 Listener
    jason1 i too have fibromyalgia and it is very difficult as it is a invisable condition open to suspition and misunderstanding. i dont think even my GP truly gets what my life is like .

  • Jason01Jason01 Member Posts: 20 Connected
    My gp and everyone else gets it , it's the pip assessors who don't understand chronic pain and struggles 
  • [Deleted User][Deleted User] Posts: 118 Listener
    that is good . i had to recently start using a scooter due to the pain of walking and when i told him he said that wasnt a good idea! i was trapped in my flat as i couldnt.cope with the pain of walking or standing and my mental health took a nose dive as i also have Complex Ptsd
  • Jason01Jason01 Member Posts: 20 Connected
    I use crutches and a scooter. Its too painful otherwise. Why did he say nit to use scooter, maybe you need a new doctor 
  • [Deleted User][Deleted User] Posts: 118 Listener
    He said he thought that I might get used to using it! I had to explain to him that i couldnt cope going out without it so I felt like i was left with no choice...I dont believe he gets it and yes i am thinking a new Gp is needed as i dont feel he hears me.
  • Jason01Jason01 Member Posts: 20 Connected
    The patient is the one who knows, these doctors are working for us and their opinions aren’t always welcome 
  • [Deleted User][Deleted User] Posts: 118 Listener
    i know he is a very quiet person and its like pulling teeth trying to get him to engage and then he says that.. when i first became ill he told me i couldnt have ME like another Doctor suspected as i wouldnt be able to make my appointments at his surgery and that made me alert to him not "getting it"
  • [Deleted User][Deleted User] Posts: 118 Listener
    although he was better than another doc at the practice who was refusing to give me a sick note for longer than 2 weeks when i was being assesed because i didnt look ill to her! i was so upset and in floods of tears as i felt how the heck do i get well when you dont get im ill
  • Jason01Jason01 Member Posts: 20 Connected
    My previous doctor used to smirk at every single thing, it was really annoying, so I changed doctor. Some people have no respect 
  • [Deleted User][Deleted User] Posts: 118 Listener
    That is unaceptable and says all you need to know about their level of understanding of how it impacts us on a daily basis. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @Jason01 and welcome to the community! I am sorry to hear that you are finding things stressful at the moment. Going through the benefit system can be stressful, so I hope we can help in some way!
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  • WaylayWaylay Member Posts: 922 Pioneering
    I have chronic pain too. 0 points at PIP assessment. Apparently I showed no sign of pain. What was I supposed to do? Scream constantly?
  • Jason01Jason01 Member Posts: 20 Connected
    Thing is, i yelp and screamed all the time, still didn’t help 
  • mikehughescqmikehughescq Member Posts: 6,009 Disability Gamechanger
    vickyanne said:
    that is good . i had to recently start using a scooter due to the pain of walking and when i told him he said that wasnt a good idea! i was trapped in my flat as i couldnt.cope with the pain of walking or standing and my mental health took a nose dive as i also have Complex Ptsd
    Sadly being less mobile may lower the pain level temporarily but in the longer term it will make you less mobile and give you more pain.
  • [Deleted User][Deleted User] Posts: 118 Listener
    mikehughescq 
    Im sorry but are you saying that I would be better walking .....even though the levels of pain and spasticity in my muscles meant that. i had a panic attack each time i left my house? 
  • mikehughescqmikehughescq Member Posts: 6,009 Disability Gamechanger
    No, I am not saying you are better walking. I am saying that, given your conditions, regular use of a mobility scooter absolutely has the potential to make it worse. Pain is rarely assisted by immobility. Your GP has advised against it for a very good reason. 
  • [Deleted User][Deleted User] Posts: 118 Listener
    wow! what a patronising unhelpful negative and smug attitude you possess. Get back to me when you know what its like to HAVE to use a scooter you ignorant person
  • Jason01Jason01 Member Posts: 20 Connected
    I had no choice . I was completely unable to walk. The pain was excruciating.  It's better to use a scooter than hurt yourself more 
  • [Deleted User][Deleted User] Posts: 118 Listener
    jason01
    thankyou . I am so fed up with small minded people who dont have a clue what we face. I am a educated woman who has a degree in acupuncture and I dont need a lecture on my own body by a person who ovbiously is not in a position to challenge or educate me in  my situation as you i know it is not a choice when a disability is at the level we experience . 
  • mikehughescqmikehughescq Member Posts: 6,009 Disability Gamechanger
    vickyanne said:
    wow! what a patronising unhelpful negative and smug attitude you possess. Get back to me when you know what its like to HAVE to use a scooter you ignorant person
    I’ve worked with illness, impairment and disability for 30+ years. I also work with medical professionals across a range of disciplines on a daily basis. 

    I have sensory impairments and physical pain from spinal degeneration so I am speaking from both professional knowledge and personal lived experience and I am fully aware disability is not a choice. Good to called smug and negative by someone so quick to assume condescend. There’s no “we” here. No “us and them”. We’re all on the same side.

    You asked a question. I gave you an answer based on current medical knowledge. Apologies for the brevity and bluntness but if you don’t want to risk answers you don’t like then your choices are to not post; not respond or formally ignore the poster using the facility on the site. Being insulting in response is not an option within the site rules so I’d ask you to immediately reconsider the personal insults. Having complex health conditions will never justify insults. 

    It is medical fact that immobility exacerbates pain. It’s a view wholly supported for many years by the NHS and the British Pain Society. Look up your specific conditions and you’ll see exercise and mobility are also recommended ahead of immobility every time. Please post some links to medical resources which contradict any of what I’ve posted. More than happy to learn something new. 

    I was observing precisely why your GP offered their professional, medical knowledge and experience to suggest a mobility scooter was not a good idea. It was good solid advice. Mobility scooters are not medical aids and they remain unregulated. 

    Patients often feel they know more than their medical professionals and they often do. This however is not one of those instances. Nevertheless you are free to purchase what you wish so I don’t really see the problem.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi all, thank you for using the community to discuss this issue. Please bare in mind that other members will have different opinions to yourself. Also, pain is a very personal and varied experience, people deal with this very differently. Please appreciate and support others in how they choose to manage their pain. Pain is unpleasant and will affect a lot of the community members so thank you for being open about this aspect.
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  • Jason01Jason01 Member Posts: 20 Connected
    edited July 2018
    True , unsupportive comments are unhelpful 
  • Jason01Jason01 Member Posts: 20 Connected
    People use mobility scooters to get around when in pain . Using the scooter helps preserve energy from dealing with pain . I use my scooter so that I can survive whatever task I'm aiming to do on arrival at my destination.  
  • [Deleted User][Deleted User] Posts: 118 Listener
    I totally understand what you are saying Jason. I too find a scooter gives me an advantage over my condition which reduced me to being imprisoned in my home for for the majority of three years. Not only has it helped limit the pain whilst outside and support being able to complete my journey but also like you say have the energy to complete what you need to do when arriving at your destination it has lowered my panic attacks i was experiencing trying to overide my pain levels. The fact is I was not only not able to overide the pain levels or the panic attacks due to this , it has to be remembered that even whilst not using the scooter I was still not mobile and without the scooter i was also having to deal with the limitations of virtual imprisonment due to this. Maybe some may feel this is not healthy and counter productive but i feel that scooters are a enabler to freedom from the hell of being trapped in your home. I am well aware that my choice to use one may bring criticism. and judgement but quite frankly i dont think anyone can judge or know what is right in individual circumstances unless they have walked in that persons shoes for 1 mile isnt that how the saying go ? 
  • YadnadYadnad Posts: 2,856 Member
    vickyanne said:
    I totally understand what you are saying Jason. I too find a scooter gives me an advantage over my condition which reduced me to being imprisoned in my home for for the majority of three years. Not only has it helped limit the pain whilst outside and support being able to complete my journey but also like you say have the energy to complete what you need to do when arriving at your destination it has lowered my panic attacks i was experiencing trying to overide my pain levels. The fact is I was not only not able to overide the pain levels or the panic attacks due to this , it has to be remembered that even whilst not using the scooter I was still not mobile and without the scooter i was also having to deal with the limitations of virtual imprisonment due to this. Maybe some may feel this is not healthy and counter productive but i feel that scooters are a enabler to freedom from the hell of being trapped in your home. I am well aware that my choice to use one may bring criticism. and judgement but quite frankly i dont think anyone can judge or know what is right in individual circumstances unless they have walked in that persons shoes for 1 mile isnt that how the saying go ? 
    Isn't the answer in two parts? A scooter can and does give a degree of independence but also reduces the level of mobility/exercise that is certainly beneficial to any or most disabilities.

    The second part is to take up regular exercise even though it may well be painful. The ability of the human body to 'walk through the pain threshold' is vital to keep the muscles and blood flow working properly.

    I am unable to walk beyond 10 or so metres without having to stop. Yet I regularly walk upwards of a mile once a week. Yes it leaves me knackered but I know that I am doing the best for my body that is possible plus it gives me a great feeling to know that I have done it against the odds.

  • mikehughescqmikehughescq Member Posts: 6,009 Disability Gamechanger
    Yadnad said:
    vickyanne said:
    I totally understand what you are saying Jason. I too find a scooter gives me an advantage over my condition which reduced me to being imprisoned in my home for for the majority of three years. Not only has it helped limit the pain whilst outside and support being able to complete my journey but also like you say have the energy to complete what you need to do when arriving at your destination it has lowered my panic attacks i was experiencing trying to overide my pain levels. The fact is I was not only not able to overide the pain levels or the panic attacks due to this , it has to be remembered that even whilst not using the scooter I was still not mobile and without the scooter i was also having to deal with the limitations of virtual imprisonment due to this. Maybe some may feel this is not healthy and counter productive but i feel that scooters are a enabler to freedom from the hell of being trapped in your home. I am well aware that my choice to use one may bring criticism. and judgement but quite frankly i dont think anyone can judge or know what is right in individual circumstances unless they have walked in that persons shoes for 1 mile isnt that how the saying go ? 
    Isn't the answer in two parts? A scooter can and does give a degree of independence but also reduces the level of mobility/exercise that is certainly beneficial to any or most disabilities.

    Yes, that exactly. No-one is sitting in judgement. It’s just that the gain in independence in the short term is going to be offset in the long term as you describe. 
  • Jason01Jason01 Member Posts: 20 Connected
    I'm making a mandatory appeal through citizens advice,  but the worry and anxiety of the fight is terrible . I feel very upset that I've been made to feelook so awful. 
  • YadnadYadnad Posts: 2,856 Member
    Jason01 said:
    I'm making a mandatory appeal through citizens advice,  but the worry and anxiety of the fight is terrible . I feel very upset that I've been made to feelook so awful. 
    If you feel that way with the CAB helping you, try and understand how those that have no help manage to cope. They don't. Either they have a relapse or just give up as in my case.

  • Jason01Jason01 Member Posts: 20 Connected
    Today I finally reached the point of breakdown.  I only need two extra points , I have the evidence to cover it , but the timescale to get the info in before I have a massive problem is way too fine . Anxiety overtook me and I'm now suffering rolling panic attacks . I feel so upset that it's possible to make someone feel this awful,  but I absolutely cannot give up because I'm way too desperate and needy for the extra help . Everyone thinks it'll be fine , I do have hope , but it's such a huge deal that mentally I'm struggling . I cannot sleep or eat , and I'm now struggling to breathe with the overwhelming anxiety 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @Jason01 I am so sorry to hear that you are struggling in this way. The benefit system is very stressful for a lot of people so your feelings are very valid at this moment. Have you reached out for help regarding your current mental health and panic attacks? I really do hope you are able to get things sorted and the community are here every step of the way :)
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  • Jason01Jason01 Member Posts: 20 Connected
    I am getting help, I'm grateful too for it . I feel bad for people who are in this situation,  I think it's criminal because disabled people struggling with basic life are given a huge threatening fear of losing their connection to the outside world.  I've been housebound previously,  and I know the devastating effect of being isolated.  Alot of help and effort goes into assisting people to be part of the community and to alleviate isolation.  To return to isolation after a degree of freedom and connection would be a total disaster .
  • Jason01Jason01 Member Posts: 20 Connected
    OK. ...so far we have all the paperwork and evidence dwp require . My only real issue now is timescale . I've heard of these things getting sorted in two weeks to six weeks , now all I got to do is hope and wait . Still scarey , but more of a pain in the bottom 
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