Well I was very much hoping to be able to come on here and say how well it went and that people shouldn't be put off by it but unfortunately that was an absolutely hideous experience.
First of all the tribunal was in a shopping centre with really challenging lighting for me. They couldn't find me a room that stopped light enough to stop my face reacting but it didn't seem to help when I kept pointing this out to them. From the outset the judge was very confrontational with me over the mobility question and there was no gently easing me in - he asked why I didn't think that I could walk 20 metres when I'd already done it and proved I could based on where I'd parked and I must be able to do it repeatedly as I was going to do it again to get back to the car. I kept stressing that I had no choice and that I would be taking the next 2 days off work to recover and that I had had to use my inhaler while in the waiting room and that my hips and ankles were killing me.
They asked me a lot about how long the joint reaction took to come up and how quickly it went and I hadn't really thought it through to be able to give a clear answer as it's totally variable - sometimes it comes up immediately and sometimes it's the following day so I have to still limit the time outside to avoid the stronger reaction.
I was asked how I manage to be seen at Guys when it's quite a walk around London Bridge station and the hospital and definitely more than 20 metres. I kept stressing that I had never claimed not to be able to do it at all but that I can't do it every day and that I can't do it repeatedly. Their understanding of repeatedly seemed to be very different to mine. I also kept pointing out that I was in pain having done it already and that I am left in severe pain when I go up to Guys but it's once every 4 months and I don't have a choice. I also stressed that my prescription has to be couriered to me as I'm unable to cope with it after I've had an appointment there.
The doctor lady asked me whether it was a question of mobility or of the lights. If I were to try walking at night with just the odd street light here and there would I be able to walk further than 20 metres to which I could only reply I honestly don't know because it's not something I do!
On the daily living it was questions from the disability lady about what I can and can't cut up and can I use my left hand instead as my left hand gets used for most other things I was doing and had good general mobility in my arms - I had to be honest and say I don't know because I've never tried. I will be trying before my next assessment so I can answer though! She asked if I take the cutlery out with me and I said no but unfortunately by that point I was so under attack and flustered that I didn't think to say it's because I don't eat out because I'm too exhausted.
I must admit I totally folded and lost my ability to stay detached. The judge himself kept interrupting and looking at the clock but they had read all of the information I'd put in in advance so I can't say they didn't consider everything but it's a process I never want to go through again - I left feeling like I was a fraud.
For me it's not a disaster as I am on standard rate for both elements and although I've lost my appeal to be put to higher rate on both I'm at least still getting help. Interestingly they did increase my mobility from 8 points to 10 as they felt I DO need an aid or appliance to walk 20-50 metres and the dwp had claimed I didn't - I don't think it actually helps at all though.
The judge did specifically advise me to take legal advice with regard to the mobility question and to look into the reasoning and see if it could be challenged legally. Basically as my mobility is affected by the photosensitivity rather than a physical mobility problem I don't fit the tick boxes or current criteria and he feels there could be a very strong legal question as to how that should be applied in my case. I will ask for the statement of reason with regard to mobility and go from there but I really can't afford to be taking legal advice and I'm not sure I can go through all of that again but I will discuss it with the CAB to see what they advise. Plus I will look into if they think it is worth me reapplying on that side on the basis that the reaction is now stronger.
I really wish I could report differently and I hope that I was unlucky in the hearing I had but other than the judge keep interrupting and looking at the clock I would have to say that they did look at my case fully it just felt very much like i just spent an hour in an argument having to prove I wasn't being unreasonable and came out feeling like I failed miserably. I wish everyone else luck.