UK Keratoconus Self-Help and Support Association

Hi all,

I don't post much, but i'm really looking for some advice here.

Firstly, I have keratoglobus rather than keratoconus, so my entire cornea is affected. In January 2012 I received a white-to-while PK graft. The larger size of the graft meant I was at a higher risk of rejection, and I've had 3 major rejection episodes requiring hospitalisation for aggressive IV steroids, plus numerous small rejection episodes I have self managed with close guidance from my consultant. I've had steroid tablets, drops, IVs, and cyclosporin tablets and ointment to control this. Currently I'm just on the eye drops, but the last major rejection was in January this year after I had a cataract removed and developed anterior uveitis. At one point my eye pressure was so low they couldn't measure it and were worried I was going to lose my eye entirely.

The aggressive steroids I've been on and off of over the past 4.5 years have taken their toll and my immune system has never returned to fully functioning. I work in a busy back office for the NHS (no patient contact) where a lot of people come in sick because we can only have 4 episodes or 10 days sick in a year before having to have a formal review.

Needless to say, I've had 6 episodes of sickness this year and have now been flagged as problematic. I had a review today and despite explaining all this, the HR woman has still said I need to reduce my sickness or I will get a written warning or more. I may possibly be able to get disability related absences recorded separately as a reasonable adjustment under the DDA, but my trust makes you go through occupational health to get this agreed upon, and the HR woman didn't want to refer me to OH as 1. I'm under specialists and 2. She felt I should 'at least try to improve' my sickness before going down that route.

My line manager has been nothing but supportive, had assured me not to worry about this, it was just a formality, and I think he was a bit blindsided by her attitude. I felt that forcing me to 'try' to improve was rather discriminatory, and I pointed out that the Trust had taken me on in good faith with me having disclosed all of this, as I started there 2 years after my graft.

Bearing in mind a weakened immune system is a consequence of the treatment I am on to prevent rejection and this is a lifelong thing, i'm more than willing to go to OH to push for a reasonable adjustment to be made. Do you think this is reasonable of me? This sort of thing will happen no matter what job i'm in if others bring illnesses in, or I pick up an illness just from general daily living. I can't see how changing jobs or being redeployed would help, and if they tried to dismiss or retire me on health grounds I know the DWP would find me fit for work as my good days far outweigh the bad.

Can they do anything more to help me, or should I just start living in a bubble now?

Hi Shelley,
You really have had a tough time over the last few years. Your HR person is being totally unreasonable (how on earth are you supposed to 'improve' your sickness record which is completely out of your control) and yes, you are being totally reasonable in wanting your situation taken to Occupational Health. Though it's good to hear that your supervisor is supportive and understanding. Have you downloaded the leaflets about KC and work from our home page? www.keratoconus-group.org.uk/sitev3/publications.html
Can you ask your consultant to write a letter detailing the problems you've had and the reasons for your sick absences? Some professional help could also be useful. Action for Blind People www.actionforblindpeople.org.uk have employment advisors who should be able to give you more advice and maybe intervene with your employer.
This isn't the first time we've had people who work for the NHS having this sort of difficulty. I find it really sad that an employer who should have more understanding than most can take this sort of attitude.
I hope some of this helps and do let us know how you get on.
All the best
Anne

Hi Shelley,

We have a similar policy to sickness at my work, but sick days relating to a DDA-related disability don't count. And the only people who can confirm that your disability is covered by the DDA is indeed occupational health.

Thankfully though, my HR were very keen to get me to OH, and sickness days have not been a problem for me since then.

My advice would be to keep on pushing for an OH referral; you could even mention in writing that you think that they are in breach of the DDA, as that may help speed things along.

Best of luck, and do let us know how you get on.