Michaela battles to secure better health services

Michaela battles to secure better health services

4 July 2012 - by Joanne Fleming

A CROSSGAR woman who lives with a rare strain of muscular dystrophy, says a lack of specialist care has almost cost her her life.

Michaela Hollywood was speaking after the results of a major inquiry into the treatment of this muscle wasting disease were released at Stormont yesterday.

The McCollum report found that people in Northern Ireland living with muscular dystrophy and other devastating muscle conditions are enduring “misery” and having their lives put at risk due to stark gaps in specialist care.

Over the past nine months Michaela has been among the patients giving harrowing accounts to the all party group on muscular dystrophy at the Northern Ireland Assembly.

Among concerns raised were the number of years it can take for an accurate diagnosis, the lack of support for parents after learning a child has a fatal condition, and a wait of over a year to have wheelchairs and other vital equipment repaired for some young people.

Normally administering intravenous antibiotics herself at home, a chest infection led to Michaela being admitted to the Downe Hospital in December last year, where she nearly died.

While waiting for transfer to the City Hospital, antibiotics were administered, but the 22 year-old went into anaphylactic shock before staff could fully understand her spinal muscular atrophy type 2 condition.

“I stopped breathing,” she explained. “I imagine it was all systems go. They brought me to resus and tried to resuscitate me by bagging.”

However, Michaela’s chest wasn’t strong enough for this manual method of resuscitation — she needed to be attached to a life support machine. “I needed a life support machine as soon as possible,” she said.

“My oxygen levels had dipped from 100 to 60, which was a really dangerous level.”

Michaela also remembers being in the frightening position of knowing what needed to be done, but being unable to communicate this staff.

“Mum brought my own life support machine up and had to convince doctors to try it,” she said. “I know one of the doctors was not happy about my mum and dad being allowed at resus.”

But after staff finally hooked Michaela to her own ‘bi-pap’ life support machine machine, she was able to communicate that they had done the right thing by giving them the thumbs up.

“It was really, really, scary,” she said. “I have to say, though, that the doctors were brilliant. They really did try their best, they wanted to help, but they did not know the condition.”

Michaela, who has overcome the many obstacles in her life to study public relations at the University of Ulster and campaign on behalf of other young people with disabilities, said she had personal experience of many of the issues raised in the report.

“My older sister who also has muscular dystrophy had to wait quite a lengthy time before she was diagnosed,” she said.

“The big one is that there is currently no specialist muscular dystrophy advisor in Northern Ireland.”

She now hopes the Department of Health will do what is required to bring services here up to scratch.

“It is too late for me in many ways, but I have friends who are affected,” said Michaela. “If I can make it not so bad for them I know we are going somewhere.

“My inspiration is to see everyone lead a better quality of life and live life to its full.

“We have not got time on our side. Another window of opportunity has opened up for the Health Service and we must make sure they do what is required.”

The McCollum Report, backed by the Muscular Dystrophy Campaign, is named in dedication to Gerry and Geraldine McCollum from Bangor, who lost their son Christopher to Duchenne muscular dystrophy when he was just 16-years-old.

A spokeswoman for the South Eastern Trust said: “The Trust welcomes the  report and will take on board any recommendations.”