Each year 600,000 people in the UK are diagnosed with a complex neurological condition that significantly impacts their life. That’s more than one person every minute of every day. 'Don’t Write Me Off' showcases the real-life stories of people living with neurological conditions. Let’s meet four of them.
“Since I became Chairman, I have had the privilege of meeting some of these people and hearing their stories,” says our Dee View Court Capital Appeal Chairman Trevor Garlick OBE. “They say that having access to the right care at the right time is transformative, that it allows them to flourish and to live the life they want.
“But they have also told me what life is like when you have to struggle without specialist care at home, in hospital or in an older people’s care home. That you feel written off, forgotten about. And I think that’s just wrong," he says. We agree wholeheartedly.
At Sue Ryder, demand for a place at Scotland’s only purpose-built specialist neurological care centre, Dee View Court, is high, and there is a waiting list of 15 people that never gets any shorter. To reach more people, we need to raise £3.9 million to extend Dee View Court, to build new specially adapted rooms and apartments, and care for a further 20 people.
We launched our appeal at the beginning of June with a stunning photography exhibition entitled 'Don’t Write Me Off', which showcases the real-life stories of people living with neurological conditions. Let’s meet five of them.
Mark Slade Sharp
Sue Ryder’s very own Iggy Pop, 58-year-old Mark, cuts quite a figure. Dressed immaculately and extravagantly in a bright red suit, patent leather shoes and the most wonderful hat with a plume of feathers, it’s easy to see how he became a regular fixture on the Ipswich music scene back in the 1980s when he was lead singer and harmonica player in the blues and rock band The Mean Red Spiders. Great days, he reminisces, that have given him some wonderful memories.
Now in a wheelchair because of his cerebellar disorder ataxia, music still plays a huge part in his life and a corner of his large, bright room has been converted into a virtual studio where he still arranges and produces music. His wild, heavy drinking days are behind him. The former drama teacher is now happier with art and music programmes on TV and lots of online shopping.
So was it really a sex, drugs and rock’n’roll lifestyle before? “I couldn’t possibly comment,” he winks.
Life at Sue Ryder for 64-year-old Kathleen is a “little piece of heaven”.
The former registered nurse at City Hospital and Aberdeen Royal Infirmary is now unfortunately paralysed from the neck down through primary progressive multiple sclerosis. But that has done little to diminish the widowed mother of three, and grandmother to six, who adores board games and crosswords.
Her latest project is to get a couple of tattoos – an angel on one arm “so I can walk with angels”, a butterfly on the other “so I can fly now that I can’t walk anymore!”
He may have multiple sclerosis, but Stephen, 61, can still knock off the daily Guardian crossword, beat most people at Scrabble and win hands down at cards. Life is full for the former Merchant Navy engineer and BP employee, a job he held from 1978 until his retirement in 2003.
“I really enjoyed my job there,” he says. It allowed him to travel and make some very good friends, who still come and visit on the last Thursday of every month for beers and a curry.
Multiple sclerosis now means Stephen is in a wheelchair, but friends regularly pick him up and take him out. One of the most frustrating aspects of his condition means he can no longer drive, which is a source of real sadness for a vintage car lover who in earlier years restored a wonderful red TR6.
Stephen’s real pride, however, are his three daughters – Alexandra, Pippa and Lisbeth – one of whom now works at BP, and the other two got married last year. They are mad about horses, and dogs. So his dog Judy, who is now looked after by one of his daughters and visits regularly, is in good hands.
Gregarious, sociable, and always up for a party, Clare trained and worked as a car mechanic before jumping wholeheartedly into the world of retail fashion. The multiple sclerosis that brought her to Sue Ryder as a permanent resident a couple of years ago has done little to suppress her interest in people and all things art related.
Clare is your typical fun-loving 40 year old. If you’re offering her a drink, then make it a vodka and orange juice, please. And her favourite music to dance to includes Robbie Williams, Amy Winehouse, The Doors, and the Mamas and the Papas.TV dramas like Judge Judy and Jeeves and Wooster are for quieter times; the Fight Club, a fun interactive game based around boxing played by residents at Sue Ryder, for more raucous ones.
Help us care for more people in Scotland
Have the people in this exhibition inspired you to join us in our mission to ensure that no one with a complex neurological condition feels written off due to a lack of specialist care?