READER REPORT:

Please give our teen a hysterectomy

STEPHEN DE JONGE
Last updated 10:40 06/06/2014

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Is NZ's health care system good enough?

16 years of pain trying for a diagnosis Heath help when I needed it Sitting on a ticking time bomb Our hospital system is 'a joke' Please give our teen a hysterectomy 'Alive but with no quality of life'

As a parent of a severely intellectually disabled teenager, I believe the health system is an abject failure for the most-vulnerable in our society.

Things the everyday person takes for granted in everyday life, in lots of cases are not available to the disabled community - especially the intellectually disabled.

Driving a car, getting married, travelling the world or owning your own home are often out of their reach.

When my daughter started having clonic seizures at the onset of puberty, we visited hospital A&E several times, and we were sent home with no offers of help or medication.

This was a child who lacked the understanding to roll on her side instead of her back when she was vomiting after a seizure. Often the seizures started after she was settled for the night.

If she was "normal" investigations would have been made and scans done, but because it was well-documented medically that she had brain damage, it was put in the too-hard basket.

After much insistence and nine seizures she was finally medicated.

I know of a community support worker who tried desperately for several months to get help for their mentally-deteriorating, intellectually disabled client. After finally being seen by the system, she died three weeks later from brain cancer. Imagine the needless suffering in her last days.

I want you to imagine an intellectually disabled teenager with the cognition of a 3 to 5-year-old.

Imagine her trying to deal with something every woman deals with once a month - periods.

Imagine the cramps, with her not understanding why she is in pain. Imagine her trying to show complete strangers where she is bleeding. You cannot explain why she is in pain and why her behaviour is socially unacceptable in a way she will understand.

An IUD involved general surgery and in combination with oral contraception the same issues are still present every month.

Please explain to me why it is politically incorrect to offer her a hysterectomy to improve the quality of her limited life?

Some people in power have used the argument it is her human right to have children.

Let's ignore that she has the cognition of a 3 to 5-year-old and can never give informed consent to any adult relationship.

Our dealings with the health system regarding this issue have been like a troubled relationship - first it's on, then it's off . . . stuck in limbo with her suffering needless pain.

Time for a reality check: Would society expect an able-bodied preschooler to carry a child?

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Some doctors have great empathy and understanding of the issues facing the disabled community, but these are few and far between. Most are blissfully ignorant, treating the disabled community as invisible.

After many years dealing with the health system I believe that the medical establishment and the disabled community can both greatly benefit from having a dedicated health tribunal for disability-related issues that meets once a month for a few hours.

This is easily achievable, at minimal cost.

This can comprise dedicated medical specialists that work within the disabled community.

Parents can present evidence, usually already well-documented, on how common everyday medical issues or basic things like menstruation, drastically effect the lives of the intellectually disabled, their behaviours and anxiety, as well as evidence from the family GP, special needs schools and other government agencies already involved with the family.

Decision can then be made based on a holistic approach that will greatly improve the often-shortened, basic lives.

Then I will finally believe New Zealand's healthcare system is good enough. 


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