UK Keratoconus Self-Help and Support Association

Hi everyone.

It's my understanding that many Keratoconus patients face difficulties from the necessary authorities when attempting to get themselves officially registered partially sighted, or sight impaired. Once you have been registered, it can help to open up a whole new support network. I appear to have been lucky in that the specialist at my local Eye Hospital did not hesitate when I enquired as to whether I could be registered partially sighted. He gave me all the necessary forms to complete, whilst confirming on the form that in his opinion I qualified as such. It has helped me personally to also successfully claim Disability Living Allowance, which can be awarded whilst disregarding the individuals' employment status. It is awarded not in place of employment, but as a recognition of a disability. My first claims were rejected and I had to appeal with the help of my local Disability Association and the RNIB, but after a six month battle I have finally been awarded low-rate DLA. It's a small amount of money per week. Although it helps, it's not about the money for me; it's about being labelled effectively in order for modern society to understand my needs and difficulties, and it's made my life that much easier as a result.

I have recently been in discussion with the Chair of this site, who has invited me to write about my experience to be included in the next Newsletter due out in January 2012. I do hope that it helps any individual who has experienced similar struggles as I have. Until the article is printed in the New Year, please feel free to ask me any questions or advice as I am only too happy to advise.

Best wishes all.

James

James, Hi

First off, just to say "well done" for not only getting the DLA and registration for being partially sighted applications done in the first place (that's not especially easy, they are long, complicated processes) and then -- this is the big hurdle -- getting an appeal lodged and accepted.

I’ve been granted the lower rates of DLA too and know exactly how much you have to fight for it. As you say, the monetary amounts aren’t massive (for me anyway, but I think for some people they would be enough to make a huge difference to their quality of life). It’s the fact that they allow you to then go on and claim other allowances – in my case, a disabled person’s rail card. Being unable to drive, knocking a third of rail costs is a big win.

As you’ve no doubt found, getting the benefits system to understand exactly how your Keratoconus affects you is not at all straightforward. I wish it were more sympathetic to our condition. What I’ve found to be of very little use – indeed, it almost seems to be counter-productive -- is trying to make a case on your own. What does work though is to get support from either the specialists in the clinic you attend or (in my case) my GP in NHS Primary Care. I’d not considered Disability Associations or the RNIB – what a good idea. The effect is the same – someone who can, in essence, say “he’s not making this up – this really is how it is for him” (or her !).

I sincerely hope that your example is inspiration to others. As a firm believer in Rights not Charity, it’s fantastic to hear when someone has got what is rightfully theirs – especially when it is in spite of rather than because of the response they received from the benefits agencies. The more people who push for it, the greater the awareness of the agencies who operate the process will gain about our condition.

Best wishes

Chris

Hi Chris,

Thanks for the post and the thoughts. Very much appreciated. And a warm well done back to you for also being awarded DLA! I too have been delighted to discover the Railcard, which does enable some handy reductions in fares.

I was comforted reading your comments about how difficult it can be making a claim unsupported, and that how much easier it is having the support from agencies to practically 'back up your claim' for DLA. I'm glad it wasn't just me who felt this way! I really did find the whole system really quite obtuse and alarming. If it were not for the Disability Association and the RNIB (who leaned heavily on the DLA on my behalf), I would have presumed my first 'rejection' from them would have been final - and I would most likely have left it.

The member of staff from the Disability Association who visited me actually went to a DLA office where the claims are 'processed' to see what actually occurs. I won't repeat all of what I was told as it may not be appropriate, but I was shocked to hear what happens to most of the claims. It is only when the individual appeals the decision that the claim is actually read thoroughly by a trained member of staff (and not temps and school-leavers ticking boxes they deem relevant!). The whole system really is a disgrace, and after discovering this I dread to think how many deserving people there are out there who have also been rejected by this frontline and unskilled assessment staff. The mind boggles...As you so rightly say, there is a real need for much greater awareness.

Thanks again for the comments, Chris.

Best wishes,

James