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Re: Guide to Submitting a Claim for PIP

Posted: Wed 19 Feb 2014 10:36 pm
by Loopy-Lou

Re: Guide to Submitting a Claim for PIP

Posted: Fri 28 Mar 2014 2:13 pm
by sky1
Hi all,

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 so 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!

I will keep you posted x

Re: Guide to Submitting a Claim for PIP

Posted: Tue 08 Apr 2014 12:30 am
by munster
I have my PIP assessment on Thursday with ATOS, grrrrr.

I have a variety of illnesses on my claim, KC is one of them. I will let you know what happens when I get a decision from DWP.

There is an easy answer to, "Well you can drive with lenses.".
My reply will be, "So can you tell me how do I get back, when I have to remove my lens due to a physical problem. When glasses don't work for KC?"
"I'm technically stranded as I'm below the legal driving standard, if I can't wear lenses."

Its easy for people who can just pop out lenses and switch to backup glasses. We simply don't have that luxury :(

I'll be wearing my glasses, that are poor of course. I will need them to point out things as I won't see them clearly. I'll just so happen to have a bad eye day on Thursday, just to highlight the problem with everyday life.

Re: Guide to Submitting a Claim for PIP

Posted: Fri 09 Jan 2015 6:12 pm
by Vigilante
Hey all,

I am interested in trying to claim PIP, I have both an alternating strabismus and Keratoconus of both eyes, my worst being my left eye, Contact lens do not help me and I am due to try the intac procedure under Prof Shah at BMEC. I cannot drive, watch tv, go to cinema, go out at night and suffer with headaches.

I consider that a disability, I know other people who actually get DLA/PIP for other conditions and they are able to do all of those things.

Re: Guide to Submitting a Claim for PIP

Posted: Sat 10 Jan 2015 2:04 pm
by Loopy-Lou
This is why variable impairment needs to be included in visual registration because we in many ways people have no "proof" in the eyes of others.
We need to campaign for KC to be included under variable impairment.
Also bear in mind that the current system is very unforgiving, people who are all out black blind and registered, terminally ill, degenerative conditions like Parkinson's, have all been found 'fit for work', or placed in the Work Related Activity Group (meaning vulnerable to sanctions which can mean losing your home at the worst/using food banks, and/or being forced onto the 'Work Programme' aka Workfare). There are accounts of suicides including people registered blind who were not viewed as needing suppport because they could take a bus.

Think on this when you vote this year.

Re: Guide to Submitting a Claim for PIP

Posted: Wed 18 Sep 2019 1:03 pm
by cakie90
munster wrote:I have always maintained that KC is a disability.

Yes, we can see when we have contacts that work. The problem is that the contacts are only a temporary aid. Without them, many of us would be on the partially sighted register.

We have to contend with random progression, making our current prescriptions useless. Glasses can't correct our vision. We generally suffer with eyestrain, visual fatigue and headaches. Frequent sore eyes forcing us to spend days partially sighted. Days off work spent on sick leave, due to vision. Repeated trips to and fro from the hospitals. Poor dark/night vision rendering some of us house bound. Not to mention the emotional and psychological problems caused from living with KC.

Super old post but this is literally my life. I have used so much sick leave on repeated trips to hospitals to get remeasured for a new lens due to random progression that i have run out of sick days and now my pay is docked for appointments and genuine illness.
I am broke because of all the new lenses and travelling and because i can make myself food and use the toilet I am not entitled to PIP or any benefits. I should NOT drive sometimes because my vision is so poor, but I can't afford not to go to work.
I'm tired.

Re: Guide to Submitting a Claim for PIP

Posted: Thu 26 Sep 2019 5:23 pm
by Green
I empathise - but until sight groups start raising this nothing will change with visual registration.
There was clearly an optometrist willing to take this up as campaign issues years ago.
It's a hostile environment for people with disabilities both in-work and out of work, and KC and lens might mean only having useable sight for 50% of the time and having to choose what we do.
Visual registration would help with employers etc in terms of 'proof', but registration doesn't account for variable visual acuity both before/after grafting and with lens/not wearing them. The guidance is actually advisory but not all ophthalmologists will help.
Unless the KC group initiates a campaign nothing will happen because the RNIB are not going to do it.

Re: Guide to Submitting a Claim for PIP

Posted: Thu 26 Sep 2019 5:57 pm
by space_cadet
just remember RNIB work with the DWP are in cahoots, so trust them at your peril. They employ DWP advisors to come to your home to help fill out the forms - how that is ethical mystifies me!

Re: Guide to Submitting a Claim for PIP

Posted: Thu 26 Sep 2019 7:47 pm
by Green
Correct Space Cadet, RNIB are even more embedded than that: ... sight-loss
This isn't good because charities partnering them or accepting funding have to sign gagging clauses, what that means is they are not permitted to criticise the department. Given the department decides Job Centre Plus policies which includes a vicious sanctions regime. This is just one reason why ESA claimant's attempted suicides have increased from 21% to 43%. Citizens Advice have the DWP Universal Credit help contract for 51 million. UC is entirely online, they too had to sign the gagging clause.

Re: Guide to Submitting a Claim for PIP

Posted: Fri 27 Sep 2019 7:38 am
by space_cadet
the "politics" of it all fills me with rage, itd be nice if a charity could act as an advocate n have our best interests and welfare really and truely at their heart.