All information in all accessible formats at every level of healthcare

As a functionally blind person, I do not have access to the information about my health, services, records, and medicines, that everyone else who is not d/Deaf or Disabled takes for granted. 
We should have full access to the same information as everyone else, provided at the same points of care. I have had my personal letter detailing my health conditions read aloud to me in the busy doctor's waiting room because the practice could not provide the information in either digital text or physical braille or an audio recording, or in fact any blind accessible format. So I only got to read it once, and with no privacy. 
I had to do my private psych assessment form with my mother reading and writing for me, because it was a scanned image.
I recognise my medicines by what shape the blister pack is, because there is no braille on medicines in New Zealand. It is quite frankly a miracle that we are still alive. As for the piece of paper that comes with every medicien given out by the pharmacy, I sure hope there's nothing important on that, because it is not remotely accessible. Yes I can google my mediceine, because I am lucky enough to have access to tech. But having to google your own med to get info on it, and hope someone has created it in an accessible format, is clearly not ideal, or they wouldn't bother with those bits of paper and info on the box would they. 
I couldn't even get the information you are meant to read before you consent to the covid jab read to me, because the pamphlet was inaccessible, and they were busy. So I had to concent without it being informed, pretty sure that is very illegal.
The new system must require all NZ health providers, hospitals, doctors, pharmasists, vaccine centres, therapists, psychiatrists, etc etc etc to provide all health related information that is available to any other person, in the requested accessible format, including but not limited to: Braille (contracted, non contracted, and digital file), Large print, digital text (screenreader accessible), audio, easy read, and NZSL. 
They must also accept information from the patient in all of these formats. The fact I have to type this when typing is hard for me and recording it would be easy is absolutely part of the problem. 
 

Why the contribution is important

d/Deaf and Disabled people are not having their rights met under the UN convention on the rights of people with disabilities. THe UN convention on human rights. And the NZ bill of rights act that states we get reasonable accomodations. 
We often have more complex health needs than other kiwis. We are approximately a quater of the population. It's not legal, moral, ethical, or safe that information from our medical records, to our discharge instructions, to the label on our mediceine saying what it is, what the dose is, and how often we should take it, is not freely and easily available to us. 
PS. There is nowhere to enter a recorded suggestion, or suggestion in any other accessible format. In fact, this form doesn't even allow for a spellchecker. 

by AceTimelord on March 11, 2023 at 03:26AM

Current Rating

Average rating: 5.0
Based on: 7 votes

Comments

  • Posted by Kiera82 March 14, 2023 at 00:45

    Having had a grandfather who went blind in later life, it was sad seeing him not being able to do things he should have been able to do, a lot due to the UN obligations on human rights not being met, may be time to take te whatu ora to court to get them to buck up their ideas

  • Posted by AceTimelord March 14, 2023 at 22:52

    Ah but then I'd probably have to take the court to court to get the court documents in an accessible format.
    Yes, I am joking, but only barely.
    Honestly, its crossed my mind. But honestly, I'm so tired, and so many disabled advocates are just so tired. And there are so many ways the government (all of them) has failed to meet it's UN obligations.
    Not that it isn't honestly tempting. :'( (crying face)

  • Posted by AceTimelord March 14, 2023 at 22:59

    Forgot to add, my disability support worker now knows my exact weight. Because I asked her to read me the letter my healthcare provider sent me, with of course no idea what was in it, and that she would read my weight.
    That is not something I am comfortable sharing. But I had no warning or choice in the matter.
    What if I was pregnant? Or had an STD? Or was dying? And the first person to find out was whoever happened to be passing by and was able to tell me what this letter I just got said?
    I also accidentally came out as nonbinary to that same support worker, in the same way. Oops, good thing she isn't transphobic and out to harm me, which she isn't, but that's my point. We get medical privacy for a reason. Except, well, some people don't.

  • Posted by Bware March 25, 2023 at 08:26

    Yes and having had an elderly parent who was deaf (but good at hiding it) trying to get information to support his treatment was impossible.
    Even just a written down and printed out summary of the appointment, treatment and next steps would have helped me manage his multiple conditions. But the medical staff consistently refused to do this.

  • Posted by caseylochead April 26, 2023 at 12:17

    Agree with all of this - it's so important! I would especially second the point that *this consultation* does not seem to be set up with accessibility in mind - so you could be missing out on so many perspectives, especially from our most marginalised and most affected people!
Log in or register to add comments and rate ideas