Wednesday, 24 January 2018

unexpected mail

don't know about Posy but PIP is obviously the scariest monster
Always such a delight to receive something totally unexpected through the mail.

But with a wearying sense of the utterly predictable I got something entirely expected from the Department for Work and Pensions earlier today,

Yes, they've turned down my application for PIP again - almost a year to the day since I submitted my first application for this benefit.

In the last couple of hours I've gone from resigned to enraged to depressed. I'm now at the next stage - utterly determined to take this to the next level and a tribunal. So this is what we'll be setting in motion starting tomorrow.

The MS Society has recently been surveying people with MS about their experiences with PIP - if somehow you've missed it (I've received the link through a number of different sources), I'd ask you to take a look at this short survey. It takes about 20 minutes to fill in.

As you can tell by the following extended answers from my submission, I gave them both barrels - and this was even before this morning's letter!
I lost my previous job in December 2016. At that point I had to apply to move over from DLA to PIP. I submitted my application in January 2017 and was assessed in July (shortly after having two significant relapses). Despite this I was turned down, even after a Mandatory Reconsideration.

In September I reapplied so that additional factors which had come in between the two applications could be considered - adaptations around the home, increased use of a wheelchair, change of medication, CBT therapy for depression/suicidal thoughts, Physiotherapy, Intermittent self-catheterisation.I was turned down after my second assessment in October and am currently awaiting the result of a further Mandatory Reconsideration.

The financial strain that this has put on myself and my family has been considerable. If this second appeal fails we will be forced to go to a tribunal, meaning additional - in our eyes, unnecessary - stress, upheaval and uncertainty.

PIP as a process is completely at odds with a condition like MS, and the notes which came back following my two assessments bore no relation to the topics discussed – for example, how can someone state that I can walk between 50 and 200m when during the appointment I was unable to raise myself up from my wheelchair?

Filling out the forms involves exposing incredibly personal and humiliating aspects of our lives. To then have someone judge you and effectively accuse you of lying is utterly demoralising. Although I was lucky enough to have both assessments in my own home, this also meant that there was someone who came into my house and judged me without either an ounce of empathy or a care for the affect their decision would have on me and my family. I also question how much they knew about a condition like MS.

The strain on me and my wife has seen us at breaking point for most of the last 13 months – and although our daughter is only 6, this uncertainty will doubtless affect her too.

Nobody wants to feel that they are useless, and people with a fluctuating condition such as MS are used to talking in terms of "worst days" – this might have been accepted for DLA but with PIP this is viewed with palpable suspicion.

Filling out the form is confusing, depressing and demoralising, as is being submitted to the assessment. It is only through the support of close family and friends that we have survived so far – I can't imagine how more vulnerable people can cope but I know that often they don’t.


  1. Hi Steve,

    Thinking that you're joining the third of people with MS refused PIP must be grim, but it's not necessarily going to be a permanent state of affairs.

    Obviously, I'm in no position to judge what your energy levels are like atm, and I hesitate to suggest the following to a media expert, but have you considered:

    1. have useful details about contacting your MP inter alia.

    2. Writing to Esther McVeigh, Minister of DWP and to her Labour shadow Debbie Abrahams. The equivalent effect of Amnesty International's sometimes-successful policy of bombarding detainees arrested unjustly with letters, to remind the foreign government that prisoner's detention has not been forgotten by the world. Your letter will be the x000th; doesn't matter.

    3. Writing to the Guardian letter page; they've already done some articles about the unjustness of PIP recently. It might be published especially since it's still 'hot' after the rulings on 19 January 2018. Likewise The Independent, who did an article last week on a (seriously disabled) woman with MS who was refused PIP. Give them a call? Even suggest you write on the Comment is Free action in the G?

    4. I'm not sure how much the right-leaning papers have used individuals' stories. If you can bear it, contact the Mail, Telegraph etc.

    5. I presume the MS Society and MS Trust have as yet not been successful in changing much, but on an individual/purely selfish basis (and why not?) you may fare better. Does that make sense?

    6. What did those whose appeals were successful do? While I accept that the companies have a vested interest in refusing 'claimants' (denigrating word), there must have been something that those individuals did that turned things around. Contact them- there was at least one person on last time I checked.

    7... loads of stuff that I'm not aware of, but other people will.

    Hope you don't think this is inappropriate, especially if you've already done all this thank you very much. But someone else may not have done. Hard at the moment, I'm sure but the change in mindset from 'claimant', akin to supplicant/victim IMHO to, for want of better words, warrior or gladiator (I'm not being facetious, it's NLP 101- if you're called something, you become that thing. Enough digression) may ease some of the anger, hurt and pain and channel that energy into fighting. While I've been reading your experiences the McLibel case comes to mind. Can't think why!

    Sometimes, knowing that you have done the maximum amount that you possibly can, will make victory all the sweeter.

    Courage, mon brave!

  2. Thanks a lot for that, HS - that's a lot of incredibly useful information, and some good avenues to look at - I'll keep you posted!

    Thanks again x