If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Hi, my name is Alfieboy!

Alfieboy Community member Posts: 4 Listener
edited July 2018 in Start here and say hello!

I have long term Parkinson's Disease (PD).  I was diagnosed in 2003, and I continued in full time employment for another 8 years until I genuinely had to stop and was retired on medical grounds. 

I attend routine 6 monthly appointments with my PD Consultant and last year I began feeling significantly more tired and listless and my pain from PD was on the increase.  I explained this to my consultant who referred me to a Rheumatologist as these symptoms, or rather the severity of them, was inconsistent with PD "other symptoms".

The Rheumatologist examined me and told me I was presenting with Fibromyalgia (FM) which I must confess was something I had never heard of.

At my next routine appointment with my PD Consultant, they noticed that FM had been added to my records.  I have a very open patient/clinician relationship with my Consultant as I've been seeing them for 15 years and we agreed from the outset that we would both "say it like it is" and dispense with any "**** footing around".  He told me  that medical opinion was still very much divided over the legitimacy of FM as no empirical diagnostic tests ever find anything and while it's symptoms mimic some of those associated with rheumatic illness, in the main the physiology of the FM sufferer is unremarkable (normal).  My consultant stated the reason Cognitive Behavioural Therapy (psychotherapy) is always a recommended treatment option for FM was due to the fact it is seen by most as a condition of the mind.  

I recently attended my Personal Independence Payment (PIP) face-to-face consultation and my Health Professional/Assessor could not have been nicer.  I discussed FM with them and they told me in no uncertain terms that FM was either not taken seriously, or simply not believed, they even went so far as to state that it is perceived as a condition that is "given to those who simply will not leave their GP alone" and awarding PIP for FM would "open the floodgates" for the very people the DWP are currently attempting to weed out with their shift from Disability Living Allowance (DLA) over to PIP.  I had read somewhere that the DWP recognised FM as a legitimate health condition and when I told my assessor this they stated "recognising" FM as a health condition is one thing, but assessing FM as a condition that renders the sufferer genuinely disabled or unwell to the extent of being permanently unable, or unfit, for work simply will not happen for most FM sufferers.

This weekend I received my PIP assessment report and scores.  I was awarded enhanced rate for both components like I was under the old DLA system.  However, what I did notice was that the PIP claim form activities of " Mixing with other people"  and "Planning and following a route" which have been significantly affected by my FM, and which I explained in great detail on my claim form, had been completely disregarded by the DWP and I scored zero points for both.  While this did not affect my overall total PIP scores and had no detrimental effect on my award as the severity of my PD is beyond doubt and I have a mountain of medical evidence to support this, it did confirm what my PD Consultant and my PIP assessor told me in respect of FM simply not being acknowledged, or believed, by and large in the mainstream.

I appreciate this is not what any FM sufferer who has applied, or is considering applying, for PIP wants to hear and while PIP is awarded for FM in it's own right, my understanding is that is quite rare but I thought I should share this with you all so you know exactly what you are up against especially if FM is your only health condition on which you are basing a PIP claim...... or an ESA claim for that matter I would imagine; as it's the same government department (DWP) using the same assessment providers (IAS/Atos and Capita) and the same "claim form - evidence gathering - interview" process.  


  • tcellmutation
    tcellmutation Community member Posts: 259 Pioneering
    Excellent news! Glad it’s a positive result overall. How many years were you awarded?
  • Alfieboy
    Alfieboy Community member Posts: 4 Listener
    edited July 2018
    Thank you.  In truth my PIP assessor took one look and my Parkinson's symptoms and felt they had to apologise on behalf of the DWP for sending me to a face-to-face consultation in the first place, but they have a job to do and we only ever hear about the disgruntled claimants who were refused PIP or have been awarded less than they got on DLA and never from those who were treated with kindness and dignity and who got the award  they always should have which has been so in my case.  I was previously awarded DLA higher rate for both components indefinitely but of course all that counts for nothing now the DWP are switching over to PIP which is understandable when one considers the amount of people out there who treat disability as if it were a career choice when those of us with a real disability would choose anything other than, and like all genuine disabled people I have no time for the fakers and the scroungers either as we all get tarred with the same dirty brush.  I was awarded an "ongoing" PIP award which is as close to "indefinite" as the DWP are willing to commit to under their PIP system.  My main reason for posting on here was that I was also diagnosed with Fibromyalgia (FM) earlier this year but, in truth, it is viewed more as a stigma or a scam than a legitimate health condition which is a real shame for those who are genuinely impaired by it, or because of it.  My PIP award was never in doubt as my Parkinson's is universally recognised as a very real disability (which unfortunately is very true) and my supporting evidence is undisputable, but what my PIP assessor told me about the DWP take on FM and indeed what my Consultant had to say about it also, was something I felt should be shared and it has given me no pleasure I can tell you.
  • Richard_Scope
    Richard_Scope Posts: 3,636 Scope online community team
    Hi @Alfieboy

    Welcome to Scope's community! It's great to have you here.  Just to get you started we have a How To Guide here, you can see all the latest posts here, jump in and get involved and don't worry we are a friendly bunch!  
    If you need anything, just let us know. 

    Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.'

    Want to tell us about your experience in the community? Talk to our


    and let us know.

Complete our feedback form and tell us how we can make the community better.
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.