Posts by Angela Hart
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According to the FAQ on the MOH website
http://www.health.govt.nz/system/files/documents/topic_sheets/disability-support-services-faq.pdfThe Ministry of Health funds disability support services through Disability Support Services (DSS) for people with a physical, intellectual or sensory disability (or a combination of these) that is likely to continue for a minimum of six months and result in a reduction of independent function to the extent that ongoing support is required.
The Ministry of Health funds services for disabled people under the age of 65 years, with the exception of equipment and modification services which it funds for all age groups. Disability support services for people aged 65 years and over, or those with mental health needs, are funded by District Health Boards. -
It has links with the Apple accessibility icon
http://www.guidingtech.com/assets/postimages/2012/04/2maclionuniversalaccess1.png -
Polity: Land of the brave little kids, in reply to Rosemary McDonald,
The wheels turn but slowly, it is now clear that this vitamin C therapy does have a significant beneficial effect, such that money could be saved if this treatment was used to make the traditional treatment more effective. But this type of decision often seems to take an age for the health system to make. Cough assist machines are in a similar position- save hospital admissions but high initial outlay http://www.musculardystrophyuk.org/news/fighting-to-help-people-with-muscle-wasting-conditions-access-vital-cough-assist-machines/
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A good report for Rehab from Ron, which we also have found to be patient centred although we did have to fight to get permission for me to stay and support my daughter- the focus being on independence so obviously you don't want family stepping in and doing stuff that the experts think the person could do for themselves. Thing is experts are generalists in terms of the categories they assign to patients, and that works for the majority of people who have similar, usually single, health issues. It doesn't work so well for high and complex needs, although again if there are enough to build and sustain a community of expert medical people as with SCI, it can work very well.
The key to making the system work is being listened to - not patronisingly but as an adult who knows your own or your loved ones condition well. This was part of what was lacking in Judi's care experience. -
Your you-tube video has been removed Sacha, perhaps it's a bit too challenging for the Misery.
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Access: Disability as a wicked policy problem, in reply to Sacha,
No, and it's very difficult to measure societal attitudinal change unless you put money into research and data collection alongside your project. With this project the really difficult task would have been deciding what performance measures would show success. I suspect media mentions would have been considered significant.
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Anyone in Otago? This lecture looks interesting.
http://www.otago.ac.nz/humanities/news/otago117049.html -
Polity: Land of the brave little kids, in reply to Rosemary McDonald,
:-) not even expletives as far as I know. It remains to be seen whether the quality of information available to the public will improve.
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Polity: Land of the brave little kids, in reply to Sacha,
Thanks Sacha, that is a tremendous presentation by Ron Paterson and resonated with me on many levels. I met Judi, although I didn't know her well. I knew of her illness and that she continued to work in spite of it until it simply wasn't possible any more.
The issues she recorded and Ron mentions are all familiar, though ours are more to do with Doctors not engaging with each other than with scheduling.
I'll share one story that echoes Judi's experience of not being properly informed. My daughter was diagnosed with an arrhythmia. We went to a hospital appointment expecting to meet the consultant and be given some treatment options. Instead my daughter was prepped as if for surgery. We said hang on a minute what is this about? A registrar explained that she was down for cardioversion.
What? She hasn't even met the consultant. What is this, what are the risks - oh, we stop your heart and when it restarts it's usually in a normal rhythm, arrhythmia gone. We find out later that if cardioversion works the sinus rhythm may only last up to 6 months. My daughter was terrified. What if her heart decided not to start up again?
Because we said hang on a minute, we don't know anything about this and asked a lot of questions. Because there were two of us, it wasn't just the patient and because my daughter is who she is, she decided not to let them do this, at least not at that time. But informed consent? Informed consent expects a person to have a reasonable amount of time to consider, to have all the pertinent information and to be in a mental state which allows clear thinking (there was another more egregious abuse of the consent process later in our journey which took advantage of semi-consciousness to get "informed consent").To be fair- the consultant made a professional judgement about the best and most likely to be effective course of action and set it in motion. Cardioversion has the best chance of working when it is used soon after an arrhythmia starts. It was just that he didn't manage to tell the patient prior and wasn't able to be there for the procedure either.
I haven't met Ron but he is my hero. He investigated the Ministry of Health's assertion to me that NASCs are not subject to the OIA and corrected their misconception.
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I could've done with counselling, childcare and household help back in the day, but I guess it shows we are constantly improving. Or more likely it's because Cancer.
We have a great medical care system with a few problems which tend to be addressed over time. Complex cases and rare diseases are problematic. Not because we don't have the expertise or access to expert knowledge but at least partly because our specialists tend to expect to be a one-stop shop, they are often reluctant to collaborate with other specialists , which is a problem when you're dealing with a body that has failures in more than one system or with rare disease. But we don't pay through the nose for care and we all have access.