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Help needed

TedsmumTedsmum Posts: 10Member Listener
hi
i applied for pip from dla. I have enhanced care but only standard mobility. 
My ot, specialist nurse and doctor have all written to support me but it made no difference at mr. 
I have a rare blistering skin condition. It blisters and tears off at the slightest knock. 
Everything I do can cause blisters or loss of skin. Even putting on a jacket or turning over in bed. 
My hands are closing and do not grip properly. My ot said I cannot perl and chop but the dwp say I only need help not that I cannot make a simple meal. Although I have the enhanced rate I feel the dwp are not understanding my condition. I am very rare. I have rdeb recessive dustrophic epidermolysis bullosa. 
Walking blisters my feet. My toes are turning under and it's exteeemly painful and tiring to struggle. If I do walk at all I am shattered for hours. Blisters run the risk of infections and I do not tolerate antibiotics well. 
I am waiting to see 7 specialists for various parts of my condition. 
I have osteoporosis and my base of my spine is degenerating causing painful spasms and my hips are arthritic. 
The list goes on. 
Can I ask that I'm seen at the tribunal by someone who has at least read up on the seriousness of rdeb ? 
Sorry this is so long. 
I need to get my appeal in by 5th oct. it's making me ill. I don't know where to start. 
What else can I do. ? I cannot manage without the car as I'm unable to use public transport 

Replies

  • happyshappys Posts: 3Member Listener
    Hi don't worry just write from your heart tell them what your day is like tell them you can't walk more than 20 yards un aided download on google points needed to get high rate mobility
  • lisagmlisagm Posts: 24Member Listener
    Send in photograph of your feet if necessary and as much info about the condition as u can find including websites they can visit. But photographic evidence is the way to prove how bad you are. I do hope you receive what you deserve. Sounds to me like life is bad enough without those minion's making it worse. Good luck x
  • jose2jose2 Posts: 128Member Pioneering
    Hello Tedsmum ,just read your post, as lisagm says get as much info on your condition via web sites,and photographic evidence of your condition and send all to and for your Tribunal Hearing before the 5th October ,you are only disputing about your enhanced mobility rate ,not your care,I stuck just to that fact ,as they turned me down for my mobility component,( I have terminal cancer).Then in the meantime compose a letter to the Medical Proffessional at Atos /Capita,(or which ever one did assessment ) send via email keep a record of everything you send via post or who you speak to via phone(times ,names, dates ask for team numbers and names c/o DWP) While waiting for Tribunal date ,do a daily diary of what you can and can't do from getting up in the morning ,to going to bed at night for a week .Also I contacted my MP,who then rang Atos on my behalf.I did not have to attend a Tribunal as the Medical Professional at Atos  reversed their decision about my health conditions and how it affected me on a daily basis c/o walking and getting about.
    I don't know which part of the Scope site has it ,(someone may be able to help you find it )but you can get a print off letter to type in your condition ( I didn't waffle about my condition,just stuck to the point) and what I did too was print off an  extra sheet off about my condition from a web site and staple this to my typed sheet for tribunal judge to see.
    Do hope this helps ,I know how worrying this can be ,It took over my life for a good 3 months,but as they all say on here 'don't let the .............. get you down' .all the best of luck !,   let us know how you get on.    
  • TedsmumTedsmum Posts: 10Member Listener
    Wow thank you everyone. It's so kind of you. I sent photos the first time I applied. They seem to ignore them. I sent them of hands and feet and the results of my last fall. They said nothing. 
    Re the medical professional what do I wrote to them and how can I tell who organised my assessment ?
    i really appreciate all your help. It is making me so ill. I hate being called a liar. 
    I feel I need to challenge the care part as I cannot make a meal. 
    I never go out alone as I can get blisters in my theoat at any time and they have to be popped right away as they can become life threatening. I cannot hold the needles any more so I need supervision. 
    I can put the website www.debra.org.uk
    that is for the charity that helps us. 
    Thank you again. 
    teds mum :)
  • TedsmumTedsmum Posts: 10Member Listener
    Hi I don't know how to send you individual replies. I want to say I hope you are all coping ok. 
    I am sorry to see Josie2 has terminal cancer. You shouldn't have all this stress. X
  • poppy123456poppy123456 Posts: 14,904Community champion Disability Gamechanger
    @Tedsmum,
    You need to forget about the assessment and what happened. Youhave to concentrate on the Tribunal now, this is all that matters. You need to write you letter stating what points you think you should score and why. You also need to attach a copy of the MR letter to the form for the Tribunal Appeal, otherwise they'll send it back to you and they won't accept your appeal.

    I'm unsure why you want to challenge the Daily living (care part) as you can't get a higher award than you already have. Although they will look at the whole award again BUT you should concentrate on the mobility part only.

    You say you only have till 5th October to send this, that time is approaching fast and you'll soon run out of time to get this in. Send every single piece of evidence with the letter and form, along with photos if you have to. Send it all to the Tribunal appeal. Don't delay any of this!! Good luck.
  • TedsmumTedsmum Posts: 10Member Listener
    Ok. I am not sure what to write to the medical professional. 
    I just thought if they didn't understand I cannot perl and chop that they did not understand EB. And also my medical professionals have said how bad my hands and feet are and still they are not believed. 
    If I don't challenge all the wrong things it feels I'm admitting they are right. 
    I cannot get higher points but at least I would get them legally. 
    Does that make sense. 
    It feels like I'm saying
    ok you are right. I can make a meal. 
    I can't hold or grip to peel  and chop. 
    Does that make sense. 
    They have got it wrong. 
  • lisagmlisagm Posts: 24Member Listener
    Sweet it was just that one person (the assessor) who like myself, they​ have never come across another person with your condition so because they dont understand it just dismiss it. Pick your battles and only challenge the mobility. Print off ANY INFO AND GRAPHIC PICTURE of your condition. If you need to write anything write something along the lines of " my condition is very complex and writing is extremely painful so please refer to my medical evidence and the attached print offs" Is there nobody who can help you get it all together. You have a week remember you have to get it there for the 5th so posted 1st recorded latest by the 3rd or pay a silly amount for next day. Im sending you the strength you need to get through the next few days x
  • jose2jose2 Posts: 128Member Pioneering
    Hello again Tedsmum, I have found the sites for forms for you c/o Tribunal , 1st one is look at what you think you should have scored for your mobility on www.citizensadvice.org.uk(it's a table of activities,descriptors and points) choose which suits your disability and put number and letter on form for tribunal and then type onto  a SSC1S form which you can download onto your computer from https://formfinder.hmcts.justice.gov.uk.sscs001.eng.pdf ,and as poppy123456 says don't forget to enclose copy MR letter you received and then send to the address for your area that will be dealing with your tribunal hearing.Send this off by registered mail,keep receipt of same 'safe. 
    When I wrote to Atos medical professionals I personally dissected the assessment refusal letter  from the minuet I walked into the assessment centre and  coming out 2 1/2 later ,then what I can't do and which I was told by assor in the letter I could, all of which the assor had no medical training or knowledge to understand my difficulties..When I sent a letter to my MP ,I found out who he was for my area  from a Gov web site,they have web addresses you can write to them personally, it's quicker than going to their office,especially because your so disabled c/o your condition !.Do not think yourself as lying,what you have is really awful.
    We are all with you !!
  • TedsmumTedsmum Posts: 10Member Listener
    Hi thank you so much. 
    I am going to challenge the care part of making a meal because I cannot do it. 
    I can't leave it or it looks like I am backing down. I really really cannot make any veg. 
    I will post it Monday. Hubby is just writing a diary. 
    I cannot bear injustice. 

  • TedsmumTedsmum Posts: 10Member Listener
    Do the tribunal go through the whole assessment decisions again or just the ones you disagree with ? 
  • MatildaMatilda Posts: 2,616Member Disability Gamechanger
    edited September 2017
    @Tedsmum

    My Tribunal only dealt with the award decisions that I disagreed with.  I won my appeal, incidentally!  They really grilled me, though, especially about my walking - so have your wits about you, answer in a confident way and insist that you can't walk more than 20 metres before you need to stop and rest because of pain, stiffness or fatigue.

    Also, I suggest you don't drive yourself to the Hearing - go by taxi if necessary, which is what I did though I wasn't asked how I travelled to the venue.  At my Hearing both the doctor and the judge appeared to think that ability to drive meant that I had enough strength and stamina to bathe and dress without much difficulty, which could have implications for an enhanced daily living award.  I had to insist that I make only a few short car journeys a week, longer journeys being too tiring.

    The Tribunal members drew most of their questions from the diary I submitted with my PIP claim.

    Tribunal increased my award from standard both components to enhanced both components.
  • jose2jose2 Posts: 128Member Pioneering
    I don't know on that Tedsmum,as I never went to a tribunal after fighting back  before a tribunal even took place,I was only disputing about them taking my higher rate mobility component off me. You haven't got your higher rate care component  at the standard rate as me,you have been awarded the higher rate care  fair and square,you do not have to convince them of that and you have got it legally . As others have wrote ,apply for you higher rate mobility.

    Some warned me that if I questioned and fought for higher care too!,'both could be taken away' ,so I just stuck to getting my high care mobility back.
    I know this is a terrible time for you ,as we have all been through this terrible injustice. Awful that we should have to go through this when we all have genuine disabilities.  
  • poppy123456poppy123456 Posts: 14,904Community champion Disability Gamechanger
    Tedsmum said:
    Ok. I am not sure what to write to the medical professional. 
    I just thought if they didn't understand I cannot perl and chop that they did not understand EB. And also my medical professionals have said how bad my hands and feet are and still they are not believed. 
    If I don't challenge all the wrong things it feels I'm admitting they are right. 
    I cannot get higher points but at least I would get them legally. 
    Does that make sense. 
    It feels like I'm saying
    ok you are right. I can make a meal. 
    I can't hold or grip to peel  and chop. 
    Does that make sense. 
    They have got it wrong. 
    Firstly you need the SSCS1 form which you can dowmload and print online, then you attach your MR decision letter to this form with your letter and reasons for chalenging the mobility award part ONLY. You can NOT be awarded any higher in the daily living part, therefore there's no point challenging this decision because it's a complete waste of time. I know you're not happy with the report but sometimes we just have to let sleeeping dogs lie ( as they say)
    You really should have got help with this because it's difficult if you don't understand what to do. If you don't hurry you'll miss the deadline.
  • poppy123456poppy123456 Posts: 14,904Community champion Disability Gamechanger
    Tedsmum said:
    Do the tribunal go through the whole assessment decisions again or just the ones you disagree with ? 

    They look at the whole award BUT if you chalenge those parts for extra points on the daily living part then you're at risk of losing what you already have. Don't rock that boat and leave well alone. Just concentrate on the mobility part.
  • lisagmlisagm Posts: 24Member Listener
    I'm absolutely dreading it. I have severe nerve damage in my right arm from slipping a disc in my neck. That is what i originally got lower rate care for going back to 2007. I have suffered cluster headaches for over 20 years but was on diagnosed in 2012 and during a routine brain scan discovered that i had a tumour which incidentally had nothing to do with these suicide headaches. I had  the tumour removed 2013 but it was on my optical nerve and they couldn't get it all Consequence of that my sight was affected
  • lisagmlisagm Posts: 24Member Listener
    I can walk more than 20 metres but i have to injected myself which i cant do in public and i have to take oxygen with me everywhere i go. I bearly leave the safety of my very private back garden. I can't drive after injecting, they make me into a zombie. I fidnt see my parents last year for 3 montgs because thry live in wales and i couldn't risk having a attack while on the motorway. Difficult neurological condition to describe !
  • lisagmlisagm Posts: 24Member Listener
    Im scared to death if im honest but i put up a good front!
  • TedsmumTedsmum Posts: 10Member Listener
    Thank you. I will leave those alone. Regretfully. But I do see what you mean. 
    I will just challenge the going out and getting around. 
    Lisagm I'm so sorry you are going through all this. It's just so unfair. 
    Im just so glad I found you all. 
  • CockneyRebelCockneyRebel Posts: 5,249Community champion Disability Gamechanger
    Hi Tedsmum
    all the above is great advice.
    To put it all simply
    First you need to submit the SSCS1 along with the second opy of your MR decision. You only need to  give your basic reasons for your appeal at this stage.

    Next you will receive a letter from the tribunal accepting your appeal.

    The DWP then have to prepare and send their case and you will receive a copy of this, known as the bundle. This will contain all the evidence in your case. You should check it and make sure that all the evidence you have submitted is included.

    The DWP in their case will oppose your appeal but this is just standard and nothing to worry about.

    Once you have the bundle you then prepare your case. Now is the time to add any further evidence that you have including a daily diary.

    Your submission is relativly simple.
    Give a brief history of your condition and claim to date.

    You can agree with the care component and concentrate on the mobility side.

    Make your points by referencing all you have to say to each part of your supporting evidence. Any new evidence should have your name and NI number on it.

    Give a brief summary stating what points your should have and why.

    Keep it to the facts, you do not need to write the equivalent of war and peace.

    Best of luck, although luck should never be a part of this,

    CR
    Be all you can be, make  every day count. Namaste
  • TedsmumTedsmum Posts: 10Member Listener
    Thank you.  I've just spent weeks but in my case together. Should I just put a brief summary on the paperwork I'm sending in today and then wait till the bundle arrives and write more then   
  • TedsmumTedsmum Posts: 10Member Listener
    It's due in Wednesday. It's taken me so long as I thought I had to write the whole thing now and send it in 
  • TedsmumTedsmum Posts: 10Member Listener
    What confuses me is people say to send all the new evidence now and photos etc so the tribunal can look at it. So I don't need any of this now ?
    is it best to wait to see what dwp say in the bundle. ?
  • jose2jose2 Posts: 128Member Pioneering
    Yes! Tedsmum,as CockneyRebel says send a brief summary of your illness on SSCS1 form (what I did too was pull off a web page on my illness too and stapled it to this form ).Then wait for your court bundle to arrive.What everyone is trying to explain is to get all other evidence to back up your case in the meantime,which as what you have explained you have been doing.
      
     
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