The Baking Blind book www.pennymelvillebrown.com has some great chocolate recipes (the easiest French mousse; a wickedly indulgent Australian “mud cake”). Next week’s free on-line demo at 1030 Monday 13 June will star more naughtiness with a vegan chocolate cake and brownies. You can join us for free at:
Any (or all) of these chocolate delights would be justified reward for my latest achievement: being let out of jail as, after over quarter of a century, I’ve at last been discharged from treatment by Moorfields Eye Hospital. The truth is that my various eye conditions seem to be stable after 25 years and there’s nothing anyone can do to rectify my blindness. A more jaundiced view might be that the hospital is simply clearing their patient lists. It is a wonderful new freedom from difficult journeys to London (taxi, train, taxi, passenger assistance at each stage, repeat for return). They have been long, exhausting and stressful days.
The hospital experience this week was like the curate’s egg: good in parts but awful in others. The greeting from the Friends of Moorfields volunteers was excellent: interested, concerned and hugely helpful people at every turn in the hospital. And they are much needed: clearly no-one concerned with the design has ever had any accessibility training. It remains determinedly oblivious to the fact that most patients will have some level of sight impairment which, being age-related, means that many patients will have other difficulties including reduced mobility. There was a wonderful chap in the café bellowing to his phone and we all learned he could hear it through his hearing aids.
The Friends were interested in my book which, though printed, has good sized text and spacing making it all accessible even for those with very limited vision. It has tips on life with disability and Australian Maribel’s 7 secrets of surviving blindness.
In comparison with the Friends, the professional staff were a distinctly patchy group. Neither the reception personnel nor their IT system could cope with a long double-barrelled name so I was ungracefully transposed into someone different! One needed good translation skills to interpret ”Havvarset” actually meant “Would you care to take a seat please”.
Then I was called, wrong name, by a “TEC”. I had no idea what this acronym denoted but gather that technicians of some ilk have replaced nurses. This individual seemed totally unable to operate outside the scripting on his computer. He ignored that big clue of a white cane. His first question was whether I wore glasses for long-distance and was then befuddled when I said “No”. I explained that I have no sight and no perception of light but he still insisted that I should cover one eye with my hand and read the top line of the chart! I declined with some asperity. He didn’t seem to realise that, when one is blind, seeing the wall, let alone a chart, is impossible. Life would have been so much easier if he’d taken a minute to glance back at the medical notes.
All of this was more than just exasperating. The whole interaction was highly irritating and frustrating for both parties. In reality, the core of the problem is those in-experts who design the routines for the initial appointment checks. They have no concept of patient interaction when they create their IT procedures. They ignore the law on equality, discrimination and harassment. They undermine any sense of professionalism, sensitivity or empathy. No wonder the staff encounter such resentment!
Finally, I was elevated to interactions with medically trained people: a couple of consultants who quickly concluded that there was nothing more they could do for me, and that one patient less would make their lives easier.
The only loss on this last occasion was the absence of, now, Professor Carlos Pavesio https://www.moorfields-private.co.uk/consultants/carlos-pavesio. I remember him as a callow junior makey-learny fellow back in the 1990s. We saw each other weekly and then monthly for years as he struggled and lost the fight to save first my right eye and then the left. He performed laser treatment on my retinas and I’m sure that they still bear his mark (Carlos Woz Here). Treatment turned into a watching brief, punctuated by odd bits of surgery. And once the imminent implosion of one eye was avoided, our meetings graduated to routine check-ups. Throughout, his career has flourished to the extent Carlos has achieved international star status on the uveitis conference circuit – “a doyen” said one of his junior colleagues.
His genuine kindness, friendship, empathy and understanding marks him out from the crowd of eye doctors. He has been a constant delight and stalwart supporter throughout these long difficult years. As he continues his career, inculcating colleagues with similar attitudes and behaviour will be an achievement comparable with his elevation to professorship. He has never forgotten that we are people first and foremost – not just an unread bundle of patient notes, not a number to be ticked off the appointment list but individuals with lives to be led despite huge difficulties, people facing life-changing events, distress and despair. The key to good medicine is the relationship between human beings who treat each other with respect and as equals.,