UK Keratoconus Self-Help and Support Association

EVENING ALL,

I DONT KNOW IF ANY OF YOU GOOD FOLK CAN HELP ME. I WOULD LIKE TO KNOW HOW I WORK OUT MY VISUAL ACUITY.....

WHEN I WON MY ESA APPEAL IN SEPT THE JUDGE AND DOCTOR ON THE APPEAL PANEL ADVISED ME TO APPLY FOR DLA.
I COMPLETED MY APPLICATION A FEW WEEKS BEFORE MY GRAFT ON THE 30TH OCTOBER.
MY APPLICATION WAS REFUSED. PART OF THE INFORMATION THAT THEY USED TO REACH THIS DECISION WAS A REPORT/FORM THAT WAS SENT TO THE HOSPITAL FOR COMPLETION. THE FORM WAS COMPLETED BY THE HOSPITAL AND RETURNED TO DLA.
THE FORM ASKS THE FOLLOWING
1. IS THE BINOCULAR VISUAL ACUITY LESS THAN 3/60 YES OR NO...HOSPITAL TICKED NO
2. IS THE BINOCULAR VISUAL ACUITY 3/60 OR MORE BUT LESS THAN 6/60 YES OR NO...HOSPITAL TICKED NO
3. WHAT IS THE BINOCULAR VISUAL ACUITY.....HOSPITAL WROTE 4/12 (=6/18)




HOWEVER, THIS REPORT WAS COMPLETED WITH INFORMATION PRIOR TO MY GRAFT AND PRIOR TO MY REFRACTION ON THE 6TH DECEMBER.
AT MY REFRACTION I ASKED THE OPTICIAN WHAT MY GRAFTED EYE'S VISUAL ACUITY IS, SHE TOLD ME THAT UNAIDED IT WAS 1/60 AND THE BEST CORRECTED WAS 3/36. BUT THAT THROUGH THE CURRENT PRESCRIPTION I AM WEARING I AM EFFECTIVELY 1/60 AIDED....IF THAT MAKES SENSE??

THE REPORT WAS NOT COMPLETED BY MY CONSULTANT AS HE HAS BEEN ON COMPASSIONATE LEAVE SINCE A FEW DAYS AFTER MY GRAFT. THE FORM IS A VERY BASIC TICK BOX, SIMPLY ASKING MY BINOCULAR VISION. THE FORM DOES NOT GIVE ANY OPTION TO EXPLAIN THE EFFECTS...EG HALOS, DOBLE VISION, GHOSTING ETC NOR DOES IT GIVE ANY SPACE FOR ADDITIONAL INFORMATION
I KNOW THAT WHEN MY CONSULTANT RETURNS HE WILL WRITE ME A SUPPORTIVE LETTER EXPLAINING MORE ABOUT KERATOCONUS AND ITS EFFECTS AS WELL AS MY CURRENT SITATUION RECOVERING FROM A GRAFT, VERY PHOTO PHOBIC AND POOR VISION.

I AM IN THE PROCESS OF ASKING FOR THE DECISION TO BE LOOKED AT AGAIN AND AIM TO PROVIDE THEM WITH AS MUCH INFO AS I CAN ON KERATOCONUS AND ITS SYMPTOMS AND EFFECTS ETC.

I FIND IT VERY STRANGE THAT THEY HAVE NOT TAKEN INTO CONSIDERATION MY APPEAL TRINBUNAL DECSION....AS WHEN I APPLIED FOR DLA EARLIER IN THE YEAR, APPROX THE SAME TIME AS ESA, THEY REJECTED MY CLAIM BASED ON THE MEDICAL FOR ESA.

THANKS IN ADVANCE FOR ANY HELP ETC
ALISON

Hi Alison

Ah, the joys of the DLA claim form ! As has been stated previously here (and this is true too of the forthcoming Personal Independence Payment or PIP which will replace DLA next year), the process really lets down people like us with Keratoconus because BCVA (Best Corrected Visual Acuity) is a very poor proxy for what life is actually like for us in terms of our vision.

One of the biggest problems, as you found, is that like any system the result is only as valid as the data which is input. Rubbish in, rubbish out. If the hospital used out-of-date information about your vision (and pre graft, it might as well be for a different person) then it was worse than useless because it gave a totally misleading conclusion. For your appeal, you'll need a valid set of refractions to submit.

Here, I'd make a suggestion. If you can verify for an absolute fact that when the DWP will approach your consultant for their response (i.e. when the DWP processes you appeal) the consultant themselves will be the one who responds then you'll be okay -- your consultant will hopefully get the correct information to them and this should count a lot in your favour. However, consultants are very busy and, putting it politely, sometimes paperwork isn't their strong point.

I'd think about maybe asking your GP to be the one who the DWP refers to. What you could do is make an appointment with your GP, take all the documentation you already have e,g. the supporting letter if you still have it from the consultant and explain the situation to your GP. Say that you've already been let down by the hospital who provided obsolete information. Hopefully your GP will be understanding. And in fact, it is the responsibility of Primary Care to respond to this sort of request for information from, say, the DWP (as well as from employers, insurance companies etc. etc.) rather than consultants. They should be used to doing it, therefore. If your GP is sympathetic to your plight, they'll probably be a lot better at responding to the DWP's requests than the hospital/consultant as they're used to doing it. The can also get a BCVA (the GP will have a Snellen chart in her/his office) done then and there. The key thing, as you rightly say, is to set any BCVA result in a proper context. If it's affected by ambient lighting, ghosting, the need to tense up your eye (especially your grafted eye) then this information must be included on the DWP's information and your GP will be able to state this.

Of course, if you've been dealing with your consultant and they've been so helpful in the past, it can feel like having to start all over again getting your GP involved. I only suggest this as my experience has been the same as yours: trying to get a coherent, accurate response from hospitals or consultants is just too much of a lottery.

Let us know if you need any more information -- and how you get on. A lot of people with Keratoconus in my opinion definitely qualify for DLA but are impeded by the claims processes. It will only get better if people aren't prepared to accept unfair outcomes.

Best wishes -- and good luck !

Chris

Hi Chris,

Thanks for your reply. I've spoken to DLA this morning and advised them that my letter of "please look at your decision again" has crossed in the post with their information and hospital report to me. I 've explained that the data they have is inaccurate and out of date and that I will be asking my consultant in the New Year when he returns from compassionate leave to draft a report which confirms my latest set of results etc. I've asked them NOT to look at my case again until they have this info. I will also print off info from the web regarding KC, especially the websites that have pictures and simulator stuff on how a KC person see's. I did this for my ESA appeal.

In my letter of last week i highlighted my ESA appeal decision........Action For Blind drafted me a strongly worded letter..which is great of them to do so.

I think I am going to stick with dealing with my consultant as he has always been very supportive in the past with employers and the DWP regarding my ESA appeal. I hardly visit my GP with regards to my KC.....its easier than having to explain with a different locum on every visit.

The forms are so black and white...no grey area, and as you know every day is different for us KC people.
I have been turned down before but at my ESA appeal tribunal the panel advised me to reapply....if I hadnt have won my appeal, I would have given up with the whole process. As you say many of us qualify but are put off by the long winded and seemingly black and white process.
Makes my blood boil at times, when i think off all the years of paying my taxes, two jobs whilst I was at college and had never been out of work or claimed a penny in benefits until recent years when my KC became problematic for my employers.
oh, forgot to say that I wont be visiting the Turkish Baths....the "stand in" consultant didnt think that it was wise that I did. He also said no gym, no boot camps etc......only walking or can cycle on the bikes in the gym. Gutted!

Merry Christmas!
Bye for now

Alison