Monday 26 September 2016

HSE denies tetraplegic girl (10) right to go to the toilet

The HSE is responsible for ruining Alex Butler's life, and it tried to limit her attempts to get back that life too

Published 26/07/2015 | 02:30

LIVES FOREVER CHANGED: Alex Butler outside court in 2013 with her parents John and Sonya
LIVES FOREVER CHANGED: Alex Butler outside court in 2013 with her parents John and Sonya

Alex Butler missed a lot of milestones but she smiled right on time. There are certain things she can't do, but with assistance she can swim, horse-ride and ice skate. She is good at maths and reading, and she loves her fashion. She is a daredevil too. She is mad for roller coasters. Alex does not just exist, she lives. I had the pleasure of meeting Alex when she appeared on The Saturday Night Show a couple of years ago. She was only eight then, but I can say without a hint of condescension that she was a star. That smile charmed the hell out of the audience, and Alex was a bright, cheeky, fun and extremely likeable.

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There are a lot of people who would assume that because Alex Butler is tetraplegic, and has cerebral palsy, that she should be happy just to exist. But Alex, and her family, have what those people might feel is an unreasonable expectation. They believe Alex should have a life, that she should have fun, get an education, strive at things, succeed at things, and even fail at things. Alex will need help doing all those things. But then, don't we all?

The assumptions that people make about children like Alex Butler were highlighted in the case that Alex, through her parents, fought with the HSE over what kind of a life she deserved. Alex's mother, Sonya, summed up the attitudes of the HSE to me on the radio last week when she said that the HSE questioned whether Alex really needed assistance to go the toilet when she could just wear incontinence pads. Alex is not incontinent, but someone thought that it would be good enough for her to sit there in her own waste, rather than having the dignity of going to the toilet, if it would save a few bob in Alex's claim against the people who caused her to be how she is.

Would that be good enough for their children do you think? Would the people who felt this was acceptable for Alex agree to have their able-bodied children use incontinence pads to save money on going to the toilet? No. But apparently it should be good enough for Alex. Shure shouldn't she be happy just to be here? They argued about everything from whether Alex should be provided with tissues to whether she should expect any kind of a holiday beyond a weekend in a hotel in Ireland every year.

These are the people who work for the people who are responsible for Alex being the way she is. They made her this way, they have taken responsibility for it, but now they believe she should accept a mere existence.

The pregnancy went like clockwork. Alex should be perfect. Up to 10 minutes before her birth, she was. And then an incompetent doctor came along, read no notes, didn't take in about Alex's position, suctioned the wrong part of her head for far longer than he should have, and delivered her blue and lifeless with the umbilical cord wrapped around her neck. Afterwards he told Sonya in broken English not to worry, that he had delivered babies loads of babies like that, and it would be fine.

Sonya wasn't so sure. Alone after the birth she contemplated how she was going to tell people that Alex had died. And then she got the news that Alex would live but had cerebral palsy. Sonya comforted herself with the fact that she knew one person with cerebral palsy and that person seemed OK.

It would be months later before Alex's quadriplegia was diagnosed.

And it would be years later, eight years to be precise, before the HSE would apologise for what they did to Alex. "Waterford Regional Hospital sincerely regrets the tragic consequences their failings have caused to both Alex and her parents John and Sonya Butler." The apology is, you will note, similar in tone to a formal RSVP to a party. A surly and reluctant apology only offered years after it would have made any difference. Sonya found the apology feeble and meaningless, and she points out that no one was held accountable.

These sentiments were echoed last week by another parent whose child was condemned to a life of disability by the HSE. Ruairi Martin, whose three-year-old daughter was left with cerebral palsy after birth, said outside court of the apology to their family that, "an apology at this point in time is utterly meaningless and entirely self-serving. The apology is purely from administrators and management. Our daughter's injuries are as a result of the failings of the medical staff. None of the medical staff has ever provided any apology to either myself, my wife or my daughter."

Sonya and John Butler may have felt that once they had extracted their apology, however late, and however unsatisfactory, things might get better in their battle to make sure Alex gets the care she needs.

Instead, they would face a situation where people would argue that their child had no right to go to the toilet. Even though they admitted it was its fault that Alex would never have the life she should have had, the HSE was, according to Sonya, "ruthless and aggressive" in fighting Alex's care needs, down to arguing what kind of shower or bath seat she might need.

The HSE fought Alex "tooth and nail", causing untold stress to the family, wanting Alex, according to Sonya, "to scrape by with the bare minimum rather than having the life she should have had."

And we're back to that. The HSE made Alex the way she is, but, now that she is this way, the little special child should be happy to sit on a chair in the corner with her nappy on while the rest of us get on with the business of living life.

Sonya feels her family can get on with their lives a bit now. But she is determined too that other families should not have to go through what she went through. I don't envy the HSE and the State Claims Agency if Sonya decides to take them on. Mothers of children like Alex tend to be fighters, and they can be tough adversaries. This is mainly because they have to learn to fight, because you fight for everything in this country if your child needs extra help. Everywhere you turn, there are self-serving petty bureaucrats.

To those people you are what is referred to as a service-user. Parents and children generally feel down the bottom of the list of priorities in these situations. They are expected to be grateful for whatever pittance of resources they are given. They have to go with the begging bowl for everything. They are made to feel - constantly - that their child does not deserve a life but should be happy to have an existence. Physiotherapy, speech therapy and any kind of help is doled out minimally and meanly. There is never enough. And so parents do the kinds of things that Sonya and John did. Sonya gave up her job, and John retrained as a physiotherapist. Sonya actually took Alex to live in Budapest for a year to get her the help she needed.

We all know the mothers who have had to give up work. We all know the mothers who have essentially become physiotherapists, or speech therapists. The HSE doesn't provide much physio or speech therapy; it finds it easier to encourage the parents to do it themselves.

And in a way they are probably right. Because, all the State ever sees when it sees a compromised child is a child that should be happy to merely exist, a child that should be happy to sit in its incontinence pad. A child to which it tries to assign the minimum of resources. Maybe it takes a parent to truly understand that any child, no matter how compromised, deserves a stab at a life.

For its part, the State Claims Agency issued a statement to independent.ie last Thursday after Sonya spoke out about how her family were treated. It said: "The agency does everything in its power to keep things less adversarial and as simple as possible for the families involved in cases of this nature.

"The agency has frequently stated that the current legal system for resolving medical negligence cases not fit for purpose and has been at the forefront in introducing reforms to make the process easier for families involved."

Some of that might come as news to Alex Buckley and her family but at least it shows that this system has to change, that the agency involved doesn't even stand over it.

And maybe when we change the system, we could try and change the underlying thinking here - that special children are so great and so fabulous and gifts from God and oh aren't their parents great, but they should have to beg and fight for everything and they should be content with an existence, not a real life like the rest of us.

Sunday Independent

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