M.E. / C.F.S. and PIP - don't be discouraged!

julian65

As a new comer to the forum, I wanted to contribute something positive, encouraging and hopefully helpful. While what follows is primarily addressed to those thinking about applying for PIP with M.E., I hope it maybe more generally useful to others.

Having helped my disabled partner apply for DLA and then transition to PIP and then renew her PIP over the last decade, I was very aware of what a truly horrible experience it was for her. This, despite her disability being extremely well documented and relatively straightforward in terms of medical evidence. Witnessing what she went through, psychologically and emotionally, put me off applying on my own behalf for years, despite my having been first diagnosed with M.E. in 2014.

I have to say that my fears were entirely justified, and it's important that anyone thinking about taking on applying for PIP, (perhaps especially with an "invisible" disability such as M.E.), asks for whatever support they can find in advance of starting the process.

By support I mean both from friends and family in terms of emotional support, form filling and gathering evidence, but also from professional people such as your G.P., specialists, social workers and occupational therapists.

So it's a combination of not underestimating what a gruelling and frankly emotionally distressing process applying for PIP can be, while not allowing oneself to be bullied and intimidated into not starting - as I was for years.

I won't go into detail here regarding the different 'activities' the questions apply to. There are very helpful articles on the Action for M.E. website and elsewhere. Take all the time you need to read through them, digest, rest, recover and reflect on what you want to say, recognising that with M.E. you're necessarily going to end up repeating yourself time and again.

I will say that you can't go far wrong emphasising the degree to which specific activities cannot be performed, reliably, repeatedly, safely and in a reasonable time frame, and then repeating, for each activity, that with M.E., attempting one activity often precludes even the possibility of attempting another.

That said, you have to be very careful with the latter, since each question for each area of activity is assessed in total isolation of the rest. i.e. completely non-holistically.

Consequently, explaining that while, yes you can undress yourself, but would then be too exhausted to wash yourself, and having washed yourself, be too exhausted to get dry, or then get dressed again, and that the whole process takes you a ridiculously long time, or that you'd then have to rest for hours to recuperate from the exertion of doing any of it, and cannot therefore do anything else . . . just completely undermines what you are trying to communicate, because the DWP decision maker stopped reading or listening after you said 'yes' !!!

Having been through appeals, mandatory reconsideration and finally the in-person tribunal, I can say that the facts of my case and the supporting evidence I provided didn't change, while the points I was awarded for each activity went from a total of 0 initially, (which was so patently absurd it actually gave me confidence to continue to fight), to easily qualifying me for both elements at tribunal. So the facts did not change, only their interpretation!

So my broad point is that if there is something to be said for having a plan, then YOUR plan has to be to get yourself (or your loved one with M.E.) in front of the tribunal. Everything that goes before that is just a necessary evil which will affect you less negatively if you can just accept that a huge, impersonal bureaucracy is going to make you jump through hoops to get there.

Knowing that in advance, maybe you can retain some sense of feeling in control, despite the 'powers that be' wanting you to become so demoralised you drop out of the fight long before you get to the tribunal. Not least because the tribunal is impartial and totally independent of the DWP.

I say this because I very much didn't approach the process in this way - I took each denial from the DWP as a failure and rejection. I took it to heart and far too personally - I allowed the deliberately massive volume of written "response" (as DWP decision makers "explained" their decisions) to intimidate me and I made the fundamental mistake of allowing what they said to greatly distress me and undermine my confidence. The term 'gas-lighting' describes the process perfectly.

So if from the outset you're clear that their agenda is to intimidate you into dropping your claim before you get to the tribunal, then maybe you can armour yourself a little better, and conserve your strength for the important things in life, against the day when you can talk to professional and impartial people - who in my experience were genuinely concerned to ensure there would be no further injustice.

Hope that helps!

lou54321

Fabulous helpful post, thank you. As someone who suffers with “invisible illness, ME being one, and having a terrible experience with an assessment a few years ago, this really hits home.  Again a really helpful post as my partner is currently in the process of claiming PIP.

L_Volunteer

Hello @julian65. Welcome to Scope's forum. It is great to see you have joined us. How are you at the moment?

Thank you for contributing something positive, encouraging and hopefully helpful. I am sure your thread will be invaluable for people experiencing similar things 

L_Volunteer

@julian65 I can see your post has already been really helpful for @lou54321. Well done and thank you, it is people like you who make the community the supportive and friendly space it is.

@lou54321 It sounds really difficult that you had a terrible experience with an assessment a few years ago. Would you like to tell us more about this?

I can hear that your partner is currently in the process of claiming PIP. How are you finding navigating this at the moment?

We are here for you and listening to you if you would like to tell us more about this. Please don't hesitate to reach out to us if we can do anything to support you