EDS & GI vascular compression syndromes following Health & Disability Commissioner letter of 9th May 2024
Jacqui Hale made this Official Information request to Health New Zealand
This request has an unknown status. We're waiting for Jacqui Hale to read recent responses and update the status.
From: Jacqui Hale
Dear Health New Zealand,
The health and disability commissioner wrote to Health New Zealand and the ministry of health on 9th May 2024 to seek a response to address concerns about poor co-ordination (between specialties and between public and private sector services), lack of consistent treatment protocols, long delays in diagnosis and misattribution of symptoms to mental health conditions, resistance to accept EDS diagnosis, and a lack of information provision to families about treatment options including international options.
Please can you release all the information that has been investigated, researched, developed or assembled as of the date of your response to this request, which may inform the Health New Zealand's response to HDC's letter, including but not limited to any response made to the health and disability commissioner and any correspondence, meeting minutes, background briefing or documents produced in support of developing a potential response, and any records of meetings or correspondence with the ministry of health.
I would also be grateful for any background reports or briefings Te Whatu Ora has that relate to these issues (including but not limited to purchasing and public funding of treatment options and evidence reviews and assessment) which predate the HDC's letter since the establishment of Te Whatu Ora in July 2022.
Thank you for your help
Yours faithfully,
Mrs J Hale
From: hnzOIA
Tēnā koe,
Thank you for contacting Health NZ, Te Whatu Ora. This is an automatic
reply to confirm that we have received your email. Depending on the
nature of your request you may not receive a response for up to 20 working
days. We will try to respond to your query as quickly as possible.
Ngā mihi
Health NZ, Te Whatu Ora.
------------------- Original Message -------------------
From: Jacqui Hale <[FOI #29783 email]>;
Received: Fri Jan 17 2025 17:25:39 GMT+1300 (New Zealand Daylight Time)
To: [Health New Zealand request email];
Subject: Official Information request - EDS & GI vascular compression
syndromes following Health & Disability Commissioner letter of 9th May
2024
Dear Health New Zealand,
The health and disability commissioner wrote to Health New Zealand and the
ministry of health on 9th May 2024 to seek a response to address concerns
about poor co-ordination (between specialties and between public and
private sector services), lack of consistent treatment protocols, long
delays in diagnosis and misattribution of symptoms to mental health
conditions, resistance to accept EDS diagnosis, and a lack of information
provision to families about treatment options including international
options.
Please can you release all the information that has been investigated,
researched, developed or assembled as of the date of your response to this
request, which may inform the Health New Zealand's response to HDC's
letter, including but not limited to any response made to the health and
disability commissioner and any correspondence, meeting minutes,
background briefing or documents produced in support of developing a
potential response, and any records of meetings or correspondence with the
ministry of health.
I would also be grateful for any background reports or briefings Te Whatu
Ora has that relate to these issues (including but not limited to
purchasing and public funding of treatment options and evidence reviews
and assessment) which predate the HDC's letter since the establishment of
Te Whatu Ora in July 2022.
Thank you for your help
Yours faithfully,
Mrs J Hale
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From: hnzOIA
Please note your reference number for this request is HNZ00076506.
Ngā mihi
Health NZ, Te Whatu Ora.
------------------- Original Message -------------------
From: HNZ OIA <[email address]>;
Received: Mon Jan 20 2025 08:43:14 GMT+1300 (New Zealand Daylight Time)
To: Jacqui Hale <[FOI #29783 email]>;
Subject: Acknowledgement of request HNZ ref CRM:0448467
Tēnā koe,
Thank you for contacting Health NZ, Te Whatu Ora. This is an automatic
reply to confirm that we have received your email. Depending on the
nature of your request you may not receive a response for up to 20 working
days. We will try to respond to your query as quickly as possible.
Ngā mihi
Health NZ, Te Whatu Ora.
------------------- Original Message -------------------
From: Jacqui Hale <[FOI #29783 email]>;
Received: Fri Jan 17 2025 17:25:39 GMT+1300 (New Zealand Daylight Time)
To: [Health New Zealand request email];
Subject: Official Information request - EDS & GI vascular compression
syndromes following Health & Disability Commissioner letter of 9th May
2024
Dear Health New Zealand,
The health and disability commissioner wrote to Health New Zealand and the
ministry of health on 9th May 2024 to seek a response to address concerns
about poor co-ordination (between specialties and between public and
private sector services), lack of consistent treatment protocols, long
delays in diagnosis and misattribution of symptoms to mental health
conditions, resistance to accept EDS diagnosis, and a lack of information
provision to families about treatment options including international
options.
Please can you release all the information that has been investigated,
researched, developed or assembled as of the date of your response to this
request, which may inform the Health New Zealand's response to HDC's
letter, including but not limited to any response made to the health and
disability commissioner and any correspondence, meeting minutes,
background briefing or documents produced in support of developing a
potential response, and any records of meetings or correspondence with the
ministry of health.
I would also be grateful for any background reports or briefings Te Whatu
Ora has that relate to these issues (including but not limited to
purchasing and public funding of treatment options and evidence reviews
and assessment) which predate the HDC's letter since the establishment of
Te Whatu Ora in July 2022.
Thank you for your help
Yours faithfully,
Mrs J Hale
-------------------------------------------------------------------
This is an Official Information request made via the FYI website.
Please use this email address for all replies to this request:
[FOI #29783 email]
Is [Health New Zealand request email] the wrong address for Official Information
requests to Health New Zealand? If so, please contact us using this form:
[1]https://aus01.safelinks.protection.outlo...
Disclaimer: This message and any reply that you make will be published on
the internet. Our privacy and copyright policies:
[2]https://aus01.safelinks.protection.outlo...
If you find this service useful as an Official Information officer, please
ask your web manager to link to us from your organisation's OIA or LGOIMA
page.
-------------------------------------------------------------------
Statement of confidentiality: This email message and any accompanying
attachments may contain information that is IN-CONFIDENCE and subject to
legal privilege. If you are not the intended recipient, do not read, use,
disseminate, distribute or copy this message or attachments. If you have
received this message in error, please notify the sender immediately and
delete this message
References
Visible links
1. https://fyi.org.nz/change_request/new?bo...
2. https://fyi.org.nz/help/officers
hide quoted sections
Things to do with this request
- Add an annotation (to help the requester or others)
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