Life or death plea from Michaela

Life or death plea from Michaela

30 July 2014

TONIGHT when you go to bed, close your eyes and don’t move. Just breathe for 30 minutes. 

Imagine what it feels like to have to be alone and not be able to move or get help in a situation where the power cuts. And then add in not being able to breathe.

These are the words of disability rights campaigner Michaela Hollywood, who this week reissued an appeal for a generator that would save her life during a power cut.

Bed time is never a pleasant experience for the young Crossgar woman who, when lying down, is virtually paralysed. Born deaf, two powerful hearing aids have to be removed and her eyesight is poor. She can move her mouth and her eyes a little but she is dependent on a life support machine to support her breathing.

Her devoted parents and the small team of carers that provide them with respite are never far away, but it is still a frightening experience.

The 24 year-old who has spinal muscular atrophy, and who recently graduated with a first class honours degree in PR, spelt out the stark reality of what is involved in keeping her alive to the Recorder in February.

The generator has yet to emerge and Michaela made an appeal to Health Minister Edwin Poots this week. And Michaela’s message is a stark one: Unless action is taken someone could die, and that someone could be her.

“During bad weather we can be out for almost three days. I can’t use the toilet, I can’t be washed or dressed and all my carers aren’t allowed to even so much as knock the door. If one is in the house when the power cuts they must leave immediately.

“But that’s if power cuts during the day. At night the story is much worse. My life support machine cuts out, taking my breath away and potentially causes a respiratory arrest or a chest infection — even if there is three hours of battery. My mattress deflates in a matter of 20 seconds, leaving me on a metal frame. I have no access to my cough assist, allowing my lungs to drown in themselves. 

“This leaves me on a metal frame, unable to breathe or move, completely deaf and often unable to see because of dry eyes — and alone in the dark with no way of calling for help other than shouting, which is something I don’t have the lung capacity to do.”

Michaela also points out in her recent blog that two two young men in much the same position her passed away after power cuts in Australia.

She has been working with Seán Rodgers MLA and councillors Maria McCarthy and Laura Devlin to lobby the Heath Minister for an an automatic switchover generator which costs £5,500, and pays tribute to their efforts. She is, however, still waiting and is critical of both the Department of Health and the South Eastern Trust for failing to help with the funding.

“The South Eastern Health and Social Care Trust won’t provide me with a grant — the same grant that was provided to another person just a few miles from my home who doesn’t rely on a ventilator,” she said. “I don’t qualify because I’m on contributory Employment and Support Allowance (ESA) instead of income-based ESA.

“The South Eastern Trust have a different plan. They want to give me an ambulance transfer — which we now know can’t carry all my essential equipment. They then want to admit me to hospital, which they keep reminding me is perfect for me because it’s a neurological specialist hospital. I’m a neuromuscular patient, which is a stark contrast to someone with epilepsy which is neurological.

“In that hospital they will expose me to life threatening infections like pseudomonas which has already wreaked havoc on my lungs, and influenza which killed my sister.

“Not only that, but they will expose me to antibiotics that all have potential to give me a life threatening allergic reaction. And all this against what my doctors want to do — keep me at home. I stay at home even at my sickest, so why should I go to hospital and be institutionalised when I’m well?

“Technology exists that has saved my life for decades now. More so, technology exists that can sustain that technology for several days with power in a cut. That technology — an automatic switchover generator — is being denied to me. Not only does that leave me with no safety while I wait on an ambulance which could take several hours or more, but it also means that when mum and dad are gone I will have no safety net and I will be completely alone.

“Here is my message to Health Minister Edwin Poots: I have the utmost respect for you. Over the last number of years we have met several times as we endeavour to work together to improve neuromuscular services in Northern Ireland. I believe we are making progress, much because of your willingness to work with us as patients, and also the All Party Group on Muscular Dystrophy. I have asked to meet you to discuss this issue. There isn’t many of us in Northern Ireland that require this sort of support.

“But unless you act people are going to die. It might even be me. Are you going to let people die, or will you step up to the plate and discuss what we can do? The later is what your People elected you for – please fulfil that electoral promise.

“Don’t leave me without support and without my life saving equipment. Don’t waste health budget money on pointless endeavours — provide the equipment that fulfils Transforming Your Care requirements that’s only needed by a small percentage of society.”

The Department of Health previously issued a statement explaining that there is a three hour battery back up on Michaela’s life support machine, and that in the event of a power cut she is alerted by NIE and should go to hospital. 

A spokeswoman for the department said this week: “Minister Poots is currently considering the various issues that Ms. Hollywood has raised and he will issue a detailed response through her MLA, Seán Rogers, in the very near future.”

The South Eastern Trust said it wouldn’t be commenting as it was an issue for the Department of Health to address.