Disability in 2012: Mike Savitz

Mike Savitz’s body is rigid with anger. He’s struggling to put into words what it felt like when a hospital consultant tried to make a decision about his life - or death - without asking him.

“How would you feel?” he says finally, frustration etched across his face. “It was awful… horrible.”

Losing your voice in hospital

In September 2011, Mike, was rushed to hospital with stomach pains and treated for pancreatitis, pneumonia and multi-organ failure. More than once, his family and friends were called in to say goodbye.

Mike, who has cerebral palsy and uses a wheelchair, was given a tracheotomy which meant he couldn’t speak. In retrospect, he says losing his voice was perhaps the hardest part of the whole ordeal. His overnight transition from an independent and sociable man to a hospital patient who could not speak or move was, in his words, “terrifying”.

Round-the-clock support

To help Mike adjust to hospital, he had round-the-clock bedside support from staff at the Scope service in Runcorn where he lives. “We were Mike’s voice,” says Gareth Davis, service manager, who has known Mike for years. “We made sure his rights were respected.”

When a speech valve was added to Mike’s tracheotomy, it felt like a step towards regaining independence. But it takes Mike a little while to express himself – and in a busy hospital, few people have the time to listen.

So when a consultant gathered Mike’s family and support team together to decide what to do if his breathing worsened, nobody had thought to ask Mike first.

“I couldn’t believe what I was hearing,” says Gareth. “I said we couldn’t make that decision – it was up to Mike. I saw the consultant’s eyes widen. He’d just assumed Mike couldn’t talk.”

And when Mike was asked, his reply couldn’t have been clearer. “You keep me alive,” he instructed the hospital.  

Five months on, and much stronger, Mike was discharged to the home he has lived in for the last 20 years.

That’s when the next blow came.

Because of his tracheotomy, Mike needs daily medical support. But legally, healthcare professionals don’t have to provide respiratory care for people living in residential homes.

Fighting for independence

That left one option. At the age of 49, Mike would have to move into a nursing home. Asked how he felt about this, Mike’s response - “no way” - was so vehement that his speech valve flew off and ricocheted across the room.

Together with Scope and his community matron, Mike took on the authorities. After endless meetings, they struck a deal. If Mike’s Scope team was trained in tracheotomy care, he could stay in the home he loves.

Armed with the information needed to make an informed choice on the slight health risks this would bring, Mike’s decision remained the same. He describes it as the difference between merely existing and living – and Mike, who is full of energy and fun, wants to life his life to the full.

This isn’t just a victory for Mike either. Because of his case, the local authority is changing their policies so that nursing homes will not be an automatic option for disabled people with similar medical conditions. There’s even talk that the policy might go nationwide.

So how does Mike feel today? A smile spreads across his face. “Brilliant,” he says. “I love being back home.”