Personal Independence Payment (PIP) experience

[sky1]

Hi all,

I have put this in the PIP thread but thought it may be of use in the main discussion too.

I just thought I'd let you know that I applied for PIP last July (!) and I have just had my decision back - I was not successful. I actually scored no points as the DWP deemed that because when I had my one scleral lens in, my vision was good enough to drive i did not qualify...... my lens tolerance varies greatly and as I am currently reliant on my left eye (right eye post graft recovery) I never wear my lens for longer than 8 hours and often split my day up with lens wear time or am not able to wear it even that long. This also depends on how my eye feels each day, weather, environment, fatique etc . I am partially sighted without my lens. Here in lies the problem when it comes to PIP as with my lens In I did not meet any of the 'descriptors'.

I have spoken to the RNIB and Action for Blind who have been very helpful and I am putting a case together as I type! I now need to go back through each descriptor and literally spell out what each activity i.e food prep/washing/reading would be like without my scleral lens and what aids I use to help me.

I will challenge this decision and I hope that in doing so it will help other KC survivors out there who may come up against similar obstacles as with the nature of our fluctuating condition.

Doe anyone else have experience of PIP?

I will keep you posted

[longhoc]

Hi sky1

Your experience is quite similar to mine. And unfortunately not untypical. We've often said here that the assessment system (and this applies to both PIP and ESA) is skewed against variable conditions like ours. It's little consolation, but a friend of mine with Multiple Sclerosis had exactly the same sort of outcome when she applied for (as it was then) DLA (Disability Living Allowance). At times, as is frequently the case with MS, she was unable to walk more than a few steps or, perhaps on another occasion, unable to life simple objects like a cup. But at other times, she was able to function completely normally. With a family to support, she clearly had a perfectly valid case for needed the DLA payment. The DLA assessment, when she first completed it, found her ineligible for any of the components (care or mobility/assistance). When she got help from the MS Society, and support from her GP, her appeal against the original decision was successful. In fact, she was awarded the maximum for both the care and support components of DLA. A fair outcome -- but she could really have done without the stress and aggravation.

For me, I too got support from the clinicians who really understood how Keratoconus affects me. Without that third party input, I'm sure I would have had my claim rejected.

The bottom line for me is always that, very regrettably, these days our word alone is not sufficient to convince the assessor body that our DLA/PIP/ESA claim is legitimate and based on genuine need. But if you can get support from informed experts then it helps a lot.

Please do post here again if you need any more assistance.

Best wishes -- and good luck !

Chris

[sky1]

Hi Chris,

Sorry for the delay in getting back to you and thanks so much for your advice it is very much appreciated.

I have spent the last week putting together some 'evidence' such as a care diary so I hope that will help. Apparently my supporting documents from clinicians was strong but I did not fit the descriptors. I spoke to the RNIB and they advised me to be very specific with wording i.e don't put "If I am unable to wear my lens" as they will just take it that you can wear it even if you have already explained the in's and out's of everything!

I am glad to hear your friend got her's approved too.

I will keep you posted and many thanks again.

Best Wishes