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Posted 23 August 2023

In spring 2007, just a week after marrying his wife in what he described as a “beautiful day”, Ian found himself being rushed into hospital with a mystery virus. 

A month later, after waking from a coma, Ian was told he had been diagnosed with Acute Disseminated Encephalomyelitis (ADEM), a rare inflammatory condition that affects the brain and spinal cord. On average, only one in every 250,000 people are affected.  

At just 47, the former mechanical engineer and IT consultant had been left blind, unable to speak and paralysed from the neck down. 

“I was the longest patient in Margate Hospital’s ICU at that time,” said Ian, who has two adult sons. 

“I never felt like it happened to me; it happened to my family, my wife and kids who had to care and support me.” 

Ian spent almost a year in hospital undergoing physiotherapy. He regained his sight, his speech and started to develop movement in the upper part of his body before eventually leaving hospital late 2007. 

Fortunately, Ian and his wife lived in a bungalow but adaptations, including a wet room, medical bed (which was placed in the living room), and hoist were required as Ian continued his physio with support from social services.  

It was Ian’s resilience and commitment to physio that led to him being invited to be involved with training social services’ case managers at Kent County Council.   

“I had done consultancy work in the past when I was still working but this was my first involvement in training and advocacy,” said Ian. 

“I did a lot of talking with case managers and care employees to try to help them understand more about the individuals they were working with and how everyone is different.” 

Despite their best efforts - and with much love still involved - Ian and his wife made the difficult decision to separate in 2013. Thereafter, social services introduced Ian, who was just shy of his 55th birthday, to the Extra Care scheme. 

“I had watched the scheme being built whilst attending physio appointments nearby,” said Ian who is now independently mobile through the use of a wheelchair. 

“I was shown around by the manager, who I actually knew, and I realised it wasn’t a care home; it was nothing like a care home. There was an active social calendar and lots of families got involved. 

“It meant I could receive care and support to be able to live my life and enjoy my hobbies.” 

Shortly after moving in, Ian set up a Residents’ Association and started to show an interest in learning more about Housing 21. After meeting Kris Peach, Housing 21’s Managing Director for Extra Care at a regional event, he was encouraged to apply to join the Extra Care Forum after impressing Board Member Elaine Elkington with the questions he raised. 

“I think my reputation preceded me!” said Ian. 

“The forum felt like a natural progression from the training I did with Kent County Council and the Residents’ Association. I’ve always been interested in what goes on and how organisations are run. I’ve also always said it’s the responsibility of people like me, who have got a voice and who can speak up, to speak out on behalf of those who can’t or don’t know how.  

“A lot of people are overlooked and are easy to miss and that’s always been my motivation.” 

When asked about his aspirations for the forum, and what he would like his legacy to be, Ian added: “A lot of people – including healthcare professionals – still don’t fully understand Extra Care. I would like to broaden their understanding of what the benefits Extra Care are; what it really means for people, who those people are and how it can help them. 

“I want to get that message out to the wider community and be an advocate for residents.” 

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