my PIP story pt.2

I hope these posts will be encouraging for anyone going through the PIP application process. I am NOT an expert.

Read Part One here 
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5. Preparing for an assessment

This article is a pretty chilling depiction of the faceless bureaucracy of a PIP assessment: https://www.benefitadvice.org/pip-medical-assessment.html - particularly the Computer Says "No" section at the bottom of the page.

FULL DISCLOSURE
I honestly don't know what you can do to prepare for an assessment. I was lucky that both of mine were in my home. But for my second assessment - when I'd included details of adaptations that had been fitted around the house - they didn't even look around.

Although it couldn't have been used in a tribunal, I'm glad we made an audio recording of the assessment. At the very least I could play it back to ensure that I hadn't misremembered what we actually did say when we were able to go through the tribunal papers - which included their notes from the assessments.

But even so, the things that we said were twisted, misrepresented, or flat-out ignored.

Maybe I was unlucky. But all signs would imply that this is par for the course.

6. Take it to the bridge… I mean, the tribunal

my ACTUAL tribunal papers

After an application, an assessment, and an unsuccessful Mandatory Reconsideration, now was the time to request a tribunal.

At this point the case was passed onto HM Courts & Tribunal Service. Shortly afterwards I received a huge wodge of papers - forms, assessment reports, and decision notices for BOTH of my applications. 185 pages in total.

Although they were two separate things, I think they did this to show the tribunal service that, "This person has applied and been assessed twice. In our opinion they are clearly taking the piss."

At the front of the pack there is an official response to the appeal from the DWP:

I've considered all the available evidence and considered which descriptors apply for each activity, taking into account Mr. Woodward's functional ability. This includes the activities Mr. Woodward has disputed and those which he hasn't. I agree with all descriptors included.

I oppose this appeal and ask the Tribunal to dismiss the appeal and confirm the Secretary of State's decision.

Now. This scared the bejeezus out of me when I read it.

But think about it - they can't very well receive the tribunal request, look over the application notes, then turn around and say, "Blimey, we got it wrong here. Sorry!"

So this is a standard bit of verbiage. Stay strong.

Obviously I never got to a tribunal [SPOILER ALERT] but it really was like an intense game of chicken - who was going to blink first?

7. Evidence, evidence, evidence

This is what turned it around for me when we were waiting for a tribunal date.

I saw my MS Nurse, showed her the DWP's refusal letters and we went through them point by point. She also did some physical tests. This whole appointment took about an hour.

She then went away and wrote a letter in support which included irrefutable evidence based on her knowledge of my condition over the years.

The whole report was less than a single side of A4.

And in the phone call to let me know that their decision had been reversed, the person I spoke to said that this bit of evidence was what turned it round.

So save yourself a lot of bother - if you're applying now, include a notes from one of your listed medical professionals, as long as it backs up the things you have said elsewhere.

Another reason to include this kind of thing in your application is because NOT ONE of the medical professionals I listed - three for the first application, seven for the second - were contacted.

Perhaps I should have allowed enough time to gather this kind of evidence before I applied - but then, you're only given a month to return your application and there are enough things to stress about.

Conclusions

Like I said at the top of the first article, I am no expert in this sort of thing. But at the very least my experience shows that a decision can be reversed.

It takes a lot of stress and anxiety, and it might very well lead you to want to just give up.

But I can't help but feel that this might be exactly what the DWP is counting on. Call me cynical.

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Just for reference, these are the scores I achieved through my application process, and how they changed.

Application 1: 
0 points for Daily Living
4 points for Mobility
Unchanged after Mandatory Reconsideration

Application 2:
6 points for Daily Living
4 points for Mobility
Unchanged after Mandatory Reconsideration

Final decision (after supporting evidence from my MS Nurse - remember, this was A SINGLE SIDE OF A4):
9 points for Daily Living
12 points for Mobility

my PIP story pt.1

If you are applying for PIP, here are the main things I learned in almost 18 months spent in limbo-land.

Firstly I'm not an expert on Personal Independence Payment. If we look at the facts, I submitted two separate applications, both of which were turned down!

But I thought it might be useful for anyone going through the process to see all the steps I went through to get to my result.

At the very least it might show that, with a bit a massive amount of perseverence you can get the result you need.

1. It's not the same as Disability Living Allowance

I approached applying for PIP in much the same way as Disability Living Allowance. THIS WAS A MISTAKE. It really isn't the same beast and what was fine in the past (writing about you on your worst days) doesn't cut it anymore.

The really slippery buggers are the Yes / No / Sometimes multiple choice questions about issues you might have. And it's these which mean that the system is not a good fit for a fluctuating condition such as MS.

If you have to tick "Sometimes", what does that actually mean? A couple of days a week? Five out of seven? I'd say that if it's over 50% of the time there's a good case for just ticking "Yes".

2. Get an outside view

Ideally this would be someone who is not personally or emotionally invested. There may be an organisation near you which offers an advice service - Citizens Advice, MS Society local groups or Disability Direct will all be able to provide some support to people making claims.

One other great source of guidance and support is Benefit Advice Essentials - see their Facebook group https://www.facebook.com/MYBASEUK and their website at https://www.benefitadvice.org/

When application number one was turned down we worked with the Derbyshire Unemployed Workers Centre as they have a lot of experience of these sorts of cases.

They submitted a Mandatory Reconsideration for us and when it was knocked back, they went through my form. And advised me to apply again.

3. If at first you don't succeed...

As I mentioned at the time, the main reason I was advised to apply again was because a lot of things had changed between my application going in (January) and the decision being made (August). I couldn't include things like adaptations around the house or Cognitive behavioural therapy sessions in my appeals because they weren't on my original form.

Could I have informed the DWP in the interim? Yes, probably - but they might have asked me to apply again anyway.

I was lucky in that, between submitting my form in January and the Mandatory Consideration refusal in August, I was still getting DLA. Which meant that when I reapplied in September (and got a positive result in May this year), I effectively didn't lose any money.

However. It was undoubtedly touch and go, and I wouldn't recommend it as a way to achieving a positive mental attitude.

I worked up the second set of answers with our DUWC representative, then drafted up the form. THEN the representative went through the answers again before I filled in the form.

And he took a lot of it apart, showing where I could be said to have contradicted myself or undersold the problems I have.

I think this is something that a lot of people do, because the whole process is so difficult to get through psychologically. We naturally prefer to assert our independence and focus on the things we can do, because the other option is too depressing. And even if we prepare our application with a family member or a partner, it's difficult to expose or recognize those parts of our lives.

The DUWC representative asked some tough questions and I didn't like him for a lot of the process. But he explained that he wasn't even thinking that the form would get passed at the first attempt. He was helping me to write it with one eye on a tribunal.

By getting it watertight at this point I would be giving myself the best possible chance at a tribunal, where an independent panel would look at evidence from both sides. Following on from this...

4. Language is important

Again, you will feel more confident if you're sure that your answers are watertight. Does your answer for one question contradict what you have said elsewhere in the form? Could this be used to undermine your claim?

Filling in this form is a horrible thing to have to do. You are laying bare the worst parts of your lived experience. You may not want to acknowledge that the person you are writing about IS you.

Give yourself a good chunk of time - I ended up panicking and rushing mine.

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TO BE CONTINUED

no more drama

Last week was pretty trying.

To start, an appointment with my Neurologist, my first since my relapses last year.

I like him but I can’t help thinking he seems quite keen to rediagnose me as Secondary Progressive Multiple Sclerosis. Yes, I know this is how it goes for the vast majority of cases - is it still 80%? But this figure always makes me think of the following panel from Daniel Clowes' Art School Confidential story:

Clowes D, p.19 Eightball #7, Fantagraphic Books Inc, November 1991

We all think that we're in the 20% because anything else is too scary.

And I don't mean to offend anyone reading this who is already SPMS (or even PPMS). Neither am I so dim to not be aware that MS is progressive in nature in all of its flavours.

But having it in the name of your condition for the first time is going to be hard to take. So forgive me if I want to stall it for as long as possible.

Anyway, the stress of this appointment meant that neither myself or Mrs D slept at all well the night before.

To cut a long story short he was actually really pleased with how I'm getting on. As I think I mentioned before my first test for the JC virus was negative but I am now slightly positive.

Interestingly, although the JC titre [a new word for me too!] can go up and down, because I've gone from negative to positive I will always be counted as positive from now on.

But on the whole it was all good.

After that I had my birthday and a fairly dramatic infusion.

One other person on the ward had to be revived - I've not seen so many panicky medical professionals go behind the curtain around a hospital bed since Little Ms D’s birth.

A nurse - who looked really shaken up - asked if we wanted to be moved to another ward. But as I was nearly finished we decided not to bother.

The person eventually came round and was ok, by the way. At least that's what the nurses said anyway.

However it was still pretty unnerving to see her named on the ward list as a fellow Tysabri patient.

What is this crap I’m having pumped into my veins every four weeks?

Ne’ermind. See you next month!

writing in other places

I've been doing a bit more writing on MultipleSclerosis.net recently. Here are links to some recent posts.

The Visible Man
Obviously this was prompted by the realisation that I no longer have an invisible disability, mostly due to an increasing acceptance of the role that the wheelchair has in my life.

Yeah, yeah, yeah, I know it's just another tool to help me live my life.

Still hate the thing, obviously.

The UK National Health Service
When we were in Philadelphia, I was amazed by the questions that people asked me about the NHS. I guess it's only to be expected when the moron in charge tweets such thick-headed things as this:

So I thought I'd put them straight. And writing that article made me immensely proud!

(It was also pretty eye-opening to talk to one single parent at HUconnexion18 who said that she frequently had to make a decision about whether to pay for her MS meds or feed her children)

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One reason for this place-holder post (as opposed to the usual high-quality, well-informed guff I normally put out) is because I'm working on a big post about my experiences of the PIP application process.

Not in any way because I'm some sort of expert (two applications submitted, two applications turned down is quite the strike rate). But it could be helpful to anyone going through it now.