CMT face-to-face PIP assessment

Hi - has anyone here had a face-to-face assessment for PIP (with either Capita or Atos)?

Also, does anyone know if, as with the WCA assessment, the PIP assessment requires that people with CMT (and other neurological conditions) are seen by a doctor (as opposed to a nurse, physio et al) as a legal requirement? I can't find any solid conformation on the later and I'd really like to know. I'm filling in the PIP application right now and think it is very likely, with the complexity of our disability, and mine specifically (not only CMT but other dovetailing conditions) that I'll be called in.

best wishes, S.

22 Replies

  • Hello to shohn_desoto.....

    >I fully appreciate your current dilemma, and your associated medical problems :

    At present due to my age of 65 years plus, means that I will not be

    required to be re-asessed for the new 'State-Benefit' P.I.P.

    >My many years of suffering from Cmt Disease, (before a confirmed diagnosis in 1998) has lead me to believe that most/many medical health professionals in the UK have never seen one single case of Cmt in all of their medical career(s):

    >You personally, must research and "swot-up" all information on Cmt, before you attend your re-asessment interview:

    >Do "NOT sit back, and wrongly assume that the interviewer is a medical "expert" on Cmt, and who is fully up to date with the latest medical knowledge of Cmt, and its many varying symptoms, and resulting disablement:

    >My own interviewer preference would be that of a 'health-professional', as I am reasonably confident that they will have never seen one 'single-case' or, encountered Cmt before :

    >Attack ! is the way forward, as you the sufferer have the real true, and individual, and personal knowledge of how you the Cmt sufferer, is personally affecting you, and you alone:

    >Do NOT sit back and accept that your assessor, is a health professional, and that they have any more experience, or knowledge of Cmt than you the Cmt sufferer have:

    >Do not hold back ! no need for you to be the "nice" guy / gal, as your P.I.P. assessor will be most certainly have 'NO' former knowledge of Cmt disease:

    >Remember, your assessor who is employed by the D.W.P has a reduction "target" that they must to achieve:

    A reducion of 20% PIP, or existing DLA claiments by either by (hook-or-by-crook) ?

    If the DWP's assessor had. 'lets-us-say' 10 Cmt assessments in one single day, then every sufferer/claiment examined would display 10 different symptoms of Cmt Disease !

    >Also remember that, no two UK Cmt sufferers have the exact same symptoms, and their degrees of disability can be vastly different ?

    >Best of health, and good luck.....

    John (Glasgow).....

    Ps..... Let us all know how you got on ?

    PPs..... Also be aware of the 'sneaky', and old trick where Atos Healthcare interviewers recorded the P.I.P. applicants physical approach, and walking gait, from the car park, and into the reception area:

    These applicants were recorded on CCTV by the P.I.P. interviewers, to assist them to justify, and determine, your own level of personal mobility difficulties ? ? ?

  • thank you John,

    much appreciated, the more these things are stated the better...although this I know...currently eight members of my family have CMT to varying degrees, exhibiting varying symptoms (and we have a family history of CMT stretching back to the 19th century...) however, I didn't get a diagnosis until well in to my 30s, and am yet to meet a healthcare professional who knows the first thing about CMT let alone my personal CMT. And yes, Atos and Capita, begin at a point of ignorance, cynicism and extreme partner and I have already had one set of fights over WCA, we're practically veterans. I am not and will not sit back : )

    best, S.

  • I had to go for one it was not a doctor ii saw my daughter was with me theh ask all sorts of qestions and assess u asked me to lift my arms above my head which i could not do also other things like that too and move my legs to the back of me unerneayb the chair i was sat in

  • That's worrying Megan, and has confirmed some of my concern, as I believed under DWP rules it should be a doctor who assesses you if you have CMT and other motor-neuron type conditions (as was the case with the WCA...a number of disability rights organizations have told me that those rules were carried across to PIP, but I can't find any thing in writing from the DWP which states that). What has been the outcome of the assessment (or are you still waiting)?

    best S (Malvern Hills)

  • I tecieved mine for 10 years and then it will be reviewed see if it's still the same or gotten any worse I took all of my consultant's letters and also physio letters ect and it said what my condition is.

  • Thanks Megan...that's very positive.

    best, Sean

  • Hi just my moan now!! Well ive been on dla high for 10 years (indefinite)awaward and was assessed by capita in march which has stated im well enough to work and want my car now disabled with no dla at all. Ive appealed the first (mandatory) which havnt budged so going to a tribunal. I will keep on fighting as cmt is degenerating ive got worse but cant pay me an award. Its an insult!

  • thank you for that, its really helpful when my turn comes. It is true that most medical people have not met CMT before

  • And the ones who have encountered CMT 'think' they know something about it...

  • Anyone here who is presently on DLA and is concerned about the criteria for PIP would do well to begin at the Benefits and Work site. There outline all the descriptors for PIP. I'm finding it invaluable:

  • Suggest you go to the CAB who will help fill it in, after you brainstorm your worst day and noting everything down and asking friend or family member for their input.

  • Thank you. Right now I'm writing up that brainstorm from sixteen pages of notes. fortunately I'm extremely pedantic and have an academic background (the process is almost enjoyable). I'm pretty well informed about PIP now, in that I've read most of what there is to read, although I still can't locate a DWP document that would answer my original query on this thread. Its possible that the DWP have drop those special categories, which have consequences for anyone with CMT who attends a PIP assessment.

    best, Sean

  • My husband applied for PIP thinking he would be unlikely to be given it and if he did it would be after a gruelling face to face interview with a totally unqualified admin person. Let's face it not many Drs even know about it. But bizarrely he was given enhanced rate care and standard mobility without any interview or further information just me completing the form and a copy of the diagnosis letter from the consultant!

  • That's very good to hear, thank you for sharing that. There is some hope then...

    best wishes, S.

  • Hi.

    I was on DLA (Mobility, high rate with a lifetime award) and was sent for my PIP assessment.

    Since then I have had my DLA award removed and refused PIP and I'm currently mid appeal.

    I was asked to move my arms and legs and not much else. My original assessment claims the health professional "examined me" yet I note, I was stopped from showing the ATOS health assessor any of my body and remained fully clothed with my shoes on during the whole process. I am very interested in any rules that state I must be examined by a doctor as this highly complex condition has been assessed by an aggressive misunderstood approach with no support during the application.

    I would also like to advise people who are about to carry out the same process, do not rely on the medical evidence previously provided in your DLA application. Especially as this (in my case) mysteriously goes missing and your claim will be assessed with no supporting evidence. I was notified this was missing about 7 days before my assessment.

    I am also type 1 diabetic with other health problems. I assumed the process would be straight forward as advised when I was forced to change to PIP, unfortunately all I can confirm is it is a straight forward removal at every opportunity and they only hear what they want to during the assessment.

    Final point, ATOS have referred to the fact I function with my sons school and drive daily as main evidence for not granting PIP. They also have advised the nurse who examined me was qualified enough to asses my condition whilst advising in my mandatory reconsideration there is no legal requirement for my GP, Consultant or any other professional to be involved.

    When I have a court date (been waiting 4 months) I will update you all with the outcome.

    Best of luck to anyone else about to go through the same process.


  • Sorry to hear about your claim but its the same with me ive appealed the mandatory which they havnt changed their mind.They never looked at my feet or hands only asking me to rise from a chair,which i used my right arm to pull me up but i have "sufficient upper limb and good hand grip and strength. Really??how the hell does she know the mains problems are in my hands and feet.they dont care about how crap they make you feel.cmt is difficult enough to deal with but i wont give up!!!!

  • Hi Juliej51,

    I know how you feel and please don't give up. I won't!

    KarenCMT has offered a guide with a contact number in this post. This might be useful to you too.

    I called HMCTS today to ask how much longer I should have to wait. They advised I should hear with a date in the next couple of weeks.

    Good luck with your appeal too.

    Sorry to shohn_desoto for hijacking your post. However I did get an answer to my original query. 😉


  • Thanks good luck and im just waiting now for my appeal date.any idea how long we have to wait? More stress 🤧

  • I was advised yesterday that in my area the wait is approximately 12 weeks.

    Call the number on your HM Courts & Tribunals Service acknowledgement letter and ask them what the average wait is. Obviously they are best suited to answer this.

    Good luck.

  • Thanks spacemoney good luck

  • Well just had all of my paperwork about my tribunal so fingers i was previously on an indefinite award with dla and the lovely capita say i don't qualify and my cars being taken off me in dec.does anyone know if i win my tribunal do i keep my car? What a lovely world we disabled ppl live in 😂

  • Unfortunately you can't choose who assesses you. I had a nurse who didn't know the difference between chronic

    fatigue and tiredness!!

    Ring the CMT Uk office on

    01202 474203 and ask for a

    guide to PIP which will help you complete the form

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