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I'm going to tribunal, and am at my wit's end.

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justjoe
justjoe Community member Posts: 16 Connected
edited September 2021 in PIP, DLA, and AA
Good evening. I've applied for pip and have to go to tribunal - they haven't read my diagnostic report, my GP notes have important bits missing (because I was medically poisoned via antipsychotics I didn't have a diagnosis to receive) and the DWP are ignoring their own policies regarding autism/ chronic pain/ arthritis. I am at my wit's end. It says here I've told a Dr I've had my Achilles tendon on my knee surgically repaired when it was my anterior cruciate ligament + the Achilles tendon isn't anywhere near the knee. For heaven's sake, why do they insist on treating me like I'm stupid? Sorry had to let off steam before I started looking for sharp things. Sorry. 
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Comments

  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Hi and welcome to the community 

    Im sorry your claim is going to tribunal have you had any expert advice to help you 

    Try welfare rights 
  • justjoe
    justjoe Community member Posts: 16 Connected
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    There's a chap from CAB supposed to be helping but if medical notes are incorrect he won't know - I can't do this. I would rather die than grovel to them. 
  • calcotti
    calcotti Community member Posts: 10,010 Disability Gamechanger
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    PIP is not about medical diagnosis. It is about the difficulties you have carrying out the prescribed activities to the expected standard. As you have a representative it is best for you to discuss this with them.
    Information I post is for England unless otherwise stated. Rules may be different in other parts of UK.
  • justjoe
    justjoe Community member Posts: 16 Connected
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    Yes and apparently my difficulties would ease if I could afford the support in my care plan from adult care but because I don't get pip I cannot access that support in my care plan - if its bad enough to get a care plan drawn up you would think logically that pip might be appropriate. Never mind, thanks anyway. 
  • chiarieds
    chiarieds Community member Posts: 16,154 Disability Gamechanger
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    Hi @justjoe - & welcome to the community. I'm also sorry you're having to go to a tribunal over your PIP claim. Everything you send is looked at, so all of your Drs notes will have been read. However, PIP isn't about any diagnoses, rather how these impact on your daily living looking at the PIP activities/descriptors, &/your mobility.
    Yes, it's pretty dreadful that they don't seem to know where the Achilles tendon is situated, & muddle this up with your anterior cruciate ligament, but again, this is almost important, as it really is all about 'How your disability affects you,' as the booklet in your original claim pack states.
    So, firstly have a look at the descriptors; perhaps you haven't seen them. If you have, please accept my apologies. Please see: https://www.cambridgeshire.gov.uk/asset-library/Personal-Independence-Payment-Descriptors-and-Scores-April-2021.pdf
    Please also read the notes at the end about the 'reliability' concept, i.e. can you do an activity safely, to an acceptable standard, repeat it as often as would normally be expected, or does it take you longer than a person who isn't disabled? If these are relevant then this should be mentioned.
    Secondly, the good news is that the success rate of tribunals is currently around 75%. The panel will only be interested in questioning you to find out how your daily life is impacted due to your disability. Unless there are inaccuracies that you can prove in the Health Care Professional's report, or in your decision letter (yes, you can mention about your anterior cruciate ligament repair, but don't dwell on it), you need to concentrate on where you should have got points, & why.
    If you could get representation to help you, that would be advantageous. Try here to see if there's a Welfare Rights Office near you: https://advicelocal.uk/    choosing 'Welfare benefits' in the drop down box.
    I hope this may be of some help, but please do come back with any questions.
  • calcotti
    calcotti Community member Posts: 10,010 Disability Gamechanger
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    chiarieds said:
    If you could get representation to help you, that would be advantageous. 
    justjoe said:
    There's a chap from CAB supposed to be helping 

    Information I post is for England unless otherwise stated. Rules may be different in other parts of UK.
  • justjoe
    justjoe Community member Posts: 16 Connected
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    Thanks. I just needed to blow off in a safe space because this is really damaging my MH. I am ideating because I cannot see a way clear to just live like I used to. To go out and not be frightened, to go to work and have some kind of value to someone. Instead of this endless pain and isolation. 
  • chiarieds
    chiarieds Community member Posts: 16,154 Disability Gamechanger
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    Apologies @calcotti - it takes me a long time to type & I forgot (again) to check if there had been any other comments in the meanwhile.
    @justjoe, I think we all appreciate your frustration, & are just trying to give guidance. As you have a rep from CAB then they should help you. There is a way through this to get the help you need; please don't worry about any medical inaccuracies, in the grand scale of things they really don't matter.
  • calcotti
    calcotti Community member Posts: 10,010 Disability Gamechanger
    edited August 2021
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    chiarieds said:
    Apologies @calcotti - it takes me a long time to type & I forgot (again) to check if there had been any other comments in the meanwhile.
    No need to apologise.  That happens to me a lot too while I am editing my replies.
    Information I post is for England unless otherwise stated. Rules may be different in other parts of UK.
  • justjoe
    justjoe Community member Posts: 16 Connected
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    See? Even typing I can't make myself be understood. The diagnostic report states my issues with communication and they quite clearly haven't read it as I 'claim' to be autistic - not that I am but that I claim to be. It casts doubt and I am so very tired of being told I'm making things up. Besides it's not autism stopping me from working especially, I worked full time for 15 years until my bones decided to grow extra bits which DWP have not included and it was the assessor who told me that I needed to see the GP about reduced mobility in the first place. Oh nevermind, I'm quite clearly in the wrong so I will shut up and do one. Thanks though, your post must have taken ages. 
  • chiarieds
    chiarieds Community member Posts: 16,154 Disability Gamechanger
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    Hi @justjoe - I think, feel, we do understand, if you don't mind me saying. Decision letters may often be based on the Health Care Professional's report, & unfortunately they do some 'cut & paste' responses that are definitely at odds as to how you are. For example, I got one saying because I didn't see a 'pain management nor physiotherapy specialist' I could walk further than I'd stated. Now that was a bit odd, as I am a physio., which I'd mentioned 3 times in my claim pack, & also in my assessment.
    So, you're not wrong, but putting the emphasis on your medical problems, which as above, are not in dispute, isn't needed. Your issues will not be disputed with a tribunal, but you need to be aware of the activities/descriptors that are used in a PIP claim. Put your decision letter behind you; forget it, & listen to the advice given above by those that know more than I.
  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
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    Hello @justjoe

     Thanks for posting, I am sorry to hear about how frustrated this process has made you.
     
    A couple of your comments suggested that you felt like harming yourself, Is that the case at all? I am sorry to hear of the stress the PIP process is putting you through, and that it has impacted your well-being in this way, but please know that you have support out there if you need it, whether it be from this community or elsewhere.

    If you are having thoughts of harming yourself, it is important that you discuss them with someone who is qualified to help. Please call the Samaritans on 116 123 (free) or email them at jo@samaritans.org. You can also contact the Shout text service by texting Shout to 85258. 
      
    You might also benefit from reading MIND’s information on how you can help yourself with thoughts of self-harm, and view some useful coping techniques here.

    If you feel that you may be an immediate danger to yourself, please call 999 or go to your local hospital right away.  
      
    Do you receive any support to manage your mental health at all? Have you spoken with your GP or other health professional to explore ways in which they can help you?

    With your PIP claim you might wish to seek more professional support through somewhere like Advice Local, or you could speak with your nearest Welfare Rights. 

    We have sent you an email with further information from community@scope.org.uk, please give it a read and get back to us.
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  • justjoe
    justjoe Community member Posts: 16 Connected
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    Thanks but I'm ok. I ended up bashing my head a few times because you know - autistic distress behaviour and the top of my head is a scab from the picking that I've done over the last few months but that's a 'chosen behaviour' isn't it and I should just sit on my hands, twang elastic bands or suck on ice cubes blah blah. Just the ordinary psychological distress of living which apparently isn't distressing enough because I don't take antidepressantS (following 20+ years of misdiagnosis I figured my brain could use a break from them) and the distress of chronic pain which apparently is 'all in my head' even though I've had reconstructive surgery on one knee and the other has started to dislocate (it's a lateral dislocation which is apparently impossible without trauma (unless EDS but have you ever tried to get tested for it?). 
    Mental health services turn autistic people away because autistic traits are not MH and so yeah - basically I'm very tired of fighting for the most basic of things and being able to touch my toes doesn't really reflect the daily challenges involved with being an autist. 
    Thanks though, I know you're trying to help. 
  • chiarieds
    chiarieds Community member Posts: 16,154 Disability Gamechanger
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    Hi @justjoe - you mention EDS, & yes, it can be difficult to get a diagnosis, but a referral to a rheumatologist specialising in hypermobility would be appropriate. There are also geneticists (but personally having a very poor experience of one, perhaps I'm a bit biased). I used to know the person to go to, who diagnosed my son & I, but sadly he's retired, so a bit of research on your part may not go amiss. The following link should prove helpful with your GP, as it's guidance for them. Please look through, expanding the links.  Please see: https://www.rcgp.org.uk/eds      P.S. I am no stranger to subluxations (partial dislocations).  :)

  • justjoe
    justjoe Community member Posts: 16 Connected
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    Thank you so much - it's in my notes (we think there's a connective tissue disorder is what is says) but 2 years on and no tests to check. 
    I can't access my GP (apparently I'm rude when really I'm traumatized and still trying to communicate the way I was taught to, verbally when aac would be more efficient but because I am 'speaking' I'm not allowed to use aac) and quite frankly I have had enough of judgemental doctors to last this lifetime and the next. 
    I asked a consultant why my bones are growing extra bits and they said 'youre just really good at healing' when blatantly I'm not or it would stop when it's supposed to only my Mammy was crippled with RA and my sister has lost the use of a hand because RA but because I've got an autism diagnosis (according to this tribunal package autistic people make thing up for attention) I am ignored. My mammy is dead and my sister housebound 150 miles away so it's not like I can prove this familial link and the pain is just 'emotional' with no physical cause. 
    Social services are supposed to have someone to come with me to doctors etc but the docs still write what they want (apparently I haven't spent 3 years chucking my guts up every morning from stomach acid even though I did state so quite clearly. Dr wrote - no reports of vomiting!)
    Im fighting for my bairns education, for suitable housing (were in a one bed flat but not an emergency as band D in rehousing list) and yes I know I should just be grateful I don't live in Syria or Afghanistan but gratitude feels a long way away. 
    I'm sorry, I know I have it easy compared to lots of folks. You must think I'm such a selfish whining **** and I probably am - being cooped up indoors because I'm too frightened to go out isn't helping me but I haven't the energy to fight my fears like I used to, I don't trust NHS like I used to - I don't live like I used to and that change is hard. I am not me anymore and this shell I inhabit is very heavy. 
  • chiarieds
    chiarieds Community member Posts: 16,154 Disability Gamechanger
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    Hi @justjoe - well, it's a start having an unspecified connective tissue disorder in your medical notes, which is more than I had. I was adopted as a 6 month old baby, so no known genetic link whatsoever. Growing up I sort of assumed what I was going through was normal; well it was my normal any way.
    Is there a way you could email your GP to get the ball rolling with getting a diagnosis of EDS? You convey your thoughts very well with the written word, so perhaps this might be a way forwards.
    I do understand not trusting the NHS, but I needed them to confirm the diagnosis I'd worked out from my own research about EDS for my children. That's what pushed me on despite all the difficulties I faced.
    Our youngest daughter had to have a trache at one week old, & her mainly excellent Drs didn't know the cause of her problems. When she was a year old, I tried to find out more, this before we had a computer some 20 years ago. My mother-in-law had a friend who used computers at work, so I gave her key words, she printed out abstracts from medical papers, & I went into our city's medical library every Saturday, hauling out the likes of the Annals of Otorhinology & laryngology, & photocopying any relevant papers. No-one questioned why I was there, altho obviously the medical library was for medical students!
    We lost our youngest daughter when she was 23 months old. Some 15 years later my eldest daughter asked me to look into the cause of her little sister's problems as she was concerned she might have a similar baby in the future. I'm sure you can imagine how difficult that was. By then we had a computer, & I researched & found we likely had EDS, but also the cause of our youngest daughter's problems, namely Chiari 1 Malformation. It was incredibly difficult to get our UK specialists onboard.....in fact one geneticist contacted the Drs my son & I were about to see disagreeing with me, even querying that we had EDS, because we'd lost our youngest daughter.
    Why am I writing all this? Because, if, despite the odds, I got there, so can you. Obviously my physio background helped, but I can assure you we were never taught about ENT disorders, nor genetics.
    As far as PIP goes, I didn't even try to explain Chiari 1 Malformation, just said I had EDS associated with a neurological problem.
    Please know I don't think you're selfish in the slightest, & yes, there are people that have problems greater than I too; that doesn't mean you should stop fighting, & I believe in you is all I can say, & some things are worth fighting for. You are still you inside; don't forget that, or else you wouldn't be fighting for your children too.
    With your tribunal, be aware that the panel are used to poor Health Care Professional's reports.....don't worry, if you don't have autism, etc. according to them, then I'm not a physio either!
  • justjoe
    justjoe Community member Posts: 16 Connected
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    Thank you so much for this post, it has really helped. I was a care kid too but found my family again later in life. We are not close but it's good I still have a link. 
    I have been out this evening to an autistic friendly women's wellness and the lady has offered to write something for the tribunal, I will meet with adult OT and have been booked into pain2go therapy which starts on Monday (I'm not expecting a miracle but if it helps to take the edge off I will be pleased) so with a bit of luck 'things' will ease off soon. Thank you so much for taking time out to reach me, I am exceedingly grateful. Best wishes. 
     
  • chiarieds
    chiarieds Community member Posts: 16,154 Disability Gamechanger
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    You're more than welcome @justjoe -  & thank you for your kind reply. It sounds like things may be moving forward for you, which I'm very pleased to read. Sometimes things happen just at the right time; that little bit of serendipity has helped me too (like meeting online a USA Chiari 1 Malformation neurosurgeon that was just beginning to find some of his patients had EDS at the same time I thought the 2 disorders must be associated).
    Please kindly let us know how you get on. Small steps are the way forward. My very best wishes. :)
  • CMM
    CMM Community member Posts: 27 Connected
    edited September 2021
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    My sympathies with the stress about the tribunal.I went to one in Wolverhampton and was treated like dirt by the so called doctor and the other person, the 'experienced in the matter' person was useless, as it turned out the DWP person who sat in the middle was the best even though she just asked questions.I received no points..the lies where done at the PIP assessment by the [removed by moderator - inappropriate language] who do them.Make sure they have sent you all the paperwork and not like me gave it me on the day and expected me to read it, if this happens refuse and it will be adjourned to another date to allow you time to read the papers.
  • Tori_Scope
    Tori_Scope Scope Posts: 12,508 Disability Gamechanger
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    Hi @CMM,

    Just to let you know, I've removed a word from your comment that constituted inappropriate language. As stated in our house rules, we may remove a post if we think it might be:
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    I'm sorry that you don't feel as though your tribunal went well. When was your tribunal? 

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