News from Aotearoa/New Zealand and the Pacific Islands

This post concerns those of you living in the Southern District Health Board area.

The SDHB is developing a Disability Strategy and are doing an online survey during February. It's a short survey and a good opportunity to increase awareness of the needs of invisible disabilities like ours within the local health system. Anonymously if you so choose.

Please contact Jenny at the Donald Beasley Institute (the company contracted to do the survey) for a link to complete the survey: jconder@donaldbeasley.org.nz.

I've copied some of the information and survey questions below.

Purpose of the Disability Strategy:
The SDHB Disability Strategy will guide how they provide health services that are inclusive of all people in the region. It should make it easier for people with disability to find their way through the health system and ensure services are responsive to their needs.

The SDHB provides care through its hospitals and also funds other health care in the Southern region like, general practice, rest home care and disability support services. The SDHB Disability Strategy is intended to cover all of these places where disabled people receive health care.
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Definition of disability:
The New Zealand Disability Strategy 2016 - 2026 uses the following definition of disabled person, which is based on the United Nations Convention on the Rights of Persons with a Disability (UNCRPD).

"Disabled people are people who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others."
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Questions (questions 1-7 are quick tick-box types):
1. Who are you completing this survey on behalf of?
2. Please state your current age.
3. Do you have a disability?
4. If you are a disabled person, what is the nature of your impairment(s) [please record all that apply]
  • Physical impairment
  • Mental health
  • Blind or visual impairment
  • Deaf or hearing impairment
  • Other sensory impairment
  • Intellectual or cognitive impairment
  • Neurological impairment
  • Long term illness
  • Other (please specify)
5. Are you a family member of a person with a disability?
6. Do you provide unpaid support to a person with a disability?
7. Do you provide paid support to a person with a disability?
8. What do you think the SDHB needs to include in a disability strategy?
9. What things does the SDHB need to do to make sure its services are responsive to disabled people and their family and whānau?
10. It is important for the SDHB to make sure its services are meeting the needs of disabled people and their family and whānau. How do you think they might best do this?
Is there anything else you would like to tell us?
12. Would you be willing to talk with a researcher from the Donald Beasley Institute?
13. All information you provide to researchers from the Donald Beasley Institute will be kept confidential.
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Andy said:
I would have thought that was worth being a separate new thread @Ravn to increase its visibility?
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Maybe. But it needs a post on this NZ and Pacific Islands thread to direct locals to notice it. It’s a very specific location (in a global sense). Assuming you need to live in the Southern District to apply to get the link, numbers won’t be huge. ...or is it open to all NZers?/interested parties?
 
Andy said:
I would have thought that was worth being a separate new thread @Ravn to increase its visibility?
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I put it into this thread for the same reason @Subtropical Island points out, it's primarily of local interest. But I don't have any strong feelings about it so feel free to copy to a new thread if you think that would be best.
Subtropical Island said:
...or is it open to all NZers?/interested parties?
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Just to be sure, I reread the email I received and the introductory information for the survey. To me both do read as being directed specifically at people living within the SDHB area. Though there's nothing in there that specifically states that others can't comment, but I suspect that's because it didn't occur to them anybody would think of it.

Maybe some Kiwi from another region could try to request a link, being honest about their location of course, to find out?

Also, a submission from a national organisation like ANZMES should be acceptable I should think. I've forwarded my survey invitation email to them and also to the local ME association MEISS.
 
The Canterbury District Health Board (in the South Island of New Zealand) is offering a scholarship for a specialist doctor or GP based in the Canterbury region to attend the forthcoming Emerge conference in Australia. This scholarship has been funded by the local patient support group ME/CFS Canterbury as part of an ongoing project to build expertise in ME/CFS in the doctors and other medical professionals in the region.

Many thanks to the Emerge team who have generously provided free conference attendance for the scholarship recipient. Thread here about the conference. @Simone

Please share the opportunity with anyone who might be able to help find good quality applicants. Applications close on February 14th 2019, so there isn't much time.

@RoseE @Caramel_Cat

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Attachments

Just received the following email about the chance to have a say in a major review of our NZ health system:
Kia ora koutou

Major review of health system launched

Did you know that last year the Minister of Health, Hon David Clark, called for a review of our New Zealand health system? This will potentially guide the future state of what and how our health system functions. Do you want to get involved? The committee undertaking this review has just opened up for people across the country to answer some questions. You are free to do this survey and this is your opportunity to contribute.

Click on the link below which will take you to a summary of what is going on – there is a box at the bottom of the page which provides access to an online survey to complete. Feel free to circulate widely.

https://systemreview.citizenspace.com/review/health-and-disability-system-review-plain-english/
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Extract from the website mentioned in the email:
We want you to tell us your ideas for changes that could improve our health and disability system. We want to make changes that will work over the next 5 to 10 years. The changes should aim to help lots of different communities and organisations in the health and disability system.
You will have two chances to send us your ideas.
Phase 1 (January to May 2019)
Your feedback in this phase can help the review panel understand how our health and disability system is working now. You can also help identify the most important changes that need to happen to make the system work better and more fairly for everyone in New Zealand. Once the review panel has completed its research and studied all the suggested changes, it will prepare a report of its findings.
Phase 2 (August to November 2019)
The first draft of the review panel’s report is due to be completed in August this year. You can read a copy of the draft report. Then you can give your feedback on that report to help the review panel make it even better.
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Survey questions, phase 1:
1. What are the key values that you would want to underpin our future public health and disability system?
2. If you imagined the ideal health and disability system for New Zealand in 2030, how would people’s experiences differ from today?
3. What system level changes would you recommend to improve equity of health outcomes and wellbeing? What impact would you expect these changes to make?
4. What system level changes would have the most impact on improving health outcomes for Māori?
5. What system level changes would have the most impact on improving health outcomes for Pacific peoples?
6. What system level changes would have the most impact on ensuring that disabled people have equal opportunities to achieve their goals and aspirations?
7. What existing or previous initiatives have best delivered improved and equitable health outcomes and wellbeing in New Zealand or overseas? Why have these approaches worked, and what is their potential to deliver further improvement?
8. What are the top priorities for system level change that would make the biggest difference to New Zealanders?
9. Is there anything else you wish to add?
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Hutan said:
The Canterbury District Health Board (in the South Island of New Zealand) is offering a scholarship for a specialist doctor or GP based in the Canterbury region to attend the forthcoming Emerge conference in Australia. This scholarship has been funded by the local patient support group ME/CFS Canterbury as part of an ongoing project to build expertise in ME/CFS in the doctors and other medical professionals in the region.
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Just reporting back. The sponsorship has been accepted by an awesome GP who has some ME/CFS patients, so has some awareness already. She has been able to organise a locum and other details to attend, even at this late stage.

Really happy - can you see us beaming?
 
@Ravn Thanks - I presume it is okay to share it on various networks?
Do you think it is okay to use the term "Myalgic Encephalitis"?
 
Ravn said:
Just found out that my Alma Mater is looking for donations specifically for ME/CFS research.

https://alumni.otago.ac.nz/donate/myalgic-encephalitis

No details given. Have emailed asking for more info, awaiting answer.
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His research profile page has a list of recent publications at the bottom, the which indicate the sort of thing he’s been focusing on recently:
https://www.otago.ac.nz/bhrc/staff/otago040606.html

Changes in the transcriptome of circulating immune cells of a New Zealand cohort with myalgic encephalomyelitis/chronic fatigue syndrome. (2019)
[ETA: examined genes of 10 patients and found some things - might be planning to expand? There’s a link to read it on the list https://journals.sagepub.com/doi/10.1177/2058738418820402]

A compromised paraventricular nucleus within a dysfunctional hypothalamus: A novel neuroinflammatory paradigm for ME/CFS. (2018)
 
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A paper has been published pushing the idea of Medically Unexplained Symptoms as a single psychosomatic illness:
Discussed here: Evaluating Commonalities Across Medically Unexplained Symptoms

Authors include people from Otago and Auckland universities.
Maria Kleinstäuber Department of Psychological Medicine, Dunedin Medical School, University of Otago, New Zealand

Malcolm Henry Johnson, Frederick Sundram, Department of Psychological Medicine, Faculty of Medical and Health Sciences, University of Auckland, New Zealand​
 
Hutan said:
A paper has been published pushing the idea of Medically Unexplained Symptoms as a single psychosomatic illness:
Discussed here: Evaluating Commonalities Across Medically Unexplained Symptoms

Authors include people from Otago and Auckland universities.
Maria Kleinstäuber Department of Psychological Medicine, Dunedin Medical School, University of Otago, New Zealand

Malcolm Henry Johnson, Frederick Sundram, Department of Psychological Medicine, Faculty of Medical and Health Sciences, University of Auckland, New Zealand​
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John McMillan, University of Otago, Dunedin, New Zealand is the Editor in Chief of the Journal of Medical Ethics, which refused to publish her recent paper, despite positive peer review, claiming that she didn't address reviewers concerns, https://s4me.info/threads/ethical-c...dom-2019-diane-oleary.8082/page-7#post-144941

Seems like we've discovered a hub of BPS support in NZ?
 
Tagging @Carolyn Wilshire.

Nicola Swain, who is an Associate Professor in the Otago Uni Department of Psychological Medicine was President of ANZMES. Nicola resigned last month I think, after being elected as President for a second year in November 2018. One of the authors (Kleinstauber) of the MUS paper is from the same department.

I think Nicola is quite a reasonable person and accepted that ME/CFS isn't an 'all in the mind MUS'. Perhaps made for interesting morning tea chats.
 
Saw this on FB: there's going to be a free screening of Unrest with a couple of speakers after (Dr Vallings, Richie Barnett) in Whitford, Auckland on 23 March.

https://www.restassuredrespitetrust.org/events

Being a Southerner I wasn't aware of the Rest Assured Respite trust. Has anybody here been? Any good?
At Rest Assured Respite we will consider you the expert on your health condition and we will listen to what works for you - what you require. Whether it be concerning your diet, your daily routine or what you can manage at your current physical level.
Rest Assured Respite Charitable Trust is a registered charity working toward providing primarily but not exclusively, respite to those with;
Myalgic Encephalomyelytis (ME), Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM).
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I’ve just been looking at the Trust on the Charities Register. It was set up in late 2017 with the purpose of providing respite. Currently they are fundraising to purchase a facility - planned to be near Thames. So in its infancy. Just over $20,000 in the bank at the end of the 2017-2018 financial year.
So it doesn’t look as though there will be service provision for some years....
 
Ravn said:
Being a Southerner I wasn't aware of the Rest Assured Respite trust. Has anybody here been? Any good?
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Wendy Matthews in Whitford, Auckland is behind this. Yes, as @Daisybell said, the trust is in it's infancy, but very determined, and is developing strategy, action steps and contacts, etc. I think one of their first initiatives is to provide a meal service.

Wendy is a pwME (severe at the moment), and a member of committee on ANZMES. She organised and presented a petition to parliament in 2012 for better support & care for pwME. I can't put my finger on a link to that right now. I don't doubt that the respite will eventuate - she sees things thru. I think they have a possible location. Sorry a bit vague.
 
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