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
Currently waiting for a response from Health New Zealand, they must respond promptly and normally no later than (details and exceptions).
From: Jacqui Hale
Dear Health New Zealand,
The health and disability commissioner on 9th May 2024 wrote to the CEO to raise six common issues of concern about the diagnosis and care of a number of patients with this condition. The commissioner raised that the requirement on health professionals under the code of rights that people are provided with information about the risks, benefits and costs of each treatment option including options that are not publicly funded, and this continues to not be met.
I request a copy of any response made to the commissioners letter, and whether or not a response has been made, copies of all supporting information and briefings held by health New Zealand relating to these issues that could inform or could have informed a response.
Along with this please provide any information or correspondence in the period 1st July 2022 to 9th May 2024 that is pertinent to the issues raised including but not limited to assessment of the evidence for efficacy, clinical or cost effectiveness of treatments undertaken globally for this group of conditions and decisions or policy informed by such assessments or judgments.
Thank you for your help on this.
Yours faithfully,
Jacqui 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.
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From: hnzOIA
Tēnā koe Jacqui,
Thank you for your email of 2 November 2024, asking for the following
information under the Official Information Act 1982 (the Act):
I request a copy of any response made to the commissioners letter, and
whether or not a response has been made, copies of all supporting
information and briefings held by health New Zealand relating to these
issues that could inform or could have informed a response.
Along with this please provide any information or correspondence in the
period 1st July 2022 to 9th May 2024 that is pertinent to the issues
raised including but not limited to assessment of the evidence for
efficacy, clinical or cost effectiveness of treatments undertaken globally
for this group of conditions and decisions or policy informed by such
assessments or judgments.
Any information or email correspondence about EDS and GI vascular
compression syndromes is likely to include a significant volume of
material that staff would be required to manually review, taking
considerable time away from their core business function. In order to
provide you with information that is feasibly retrievable can you please
refine the timeframe of your request to a three-month period?
o a copy of any response to the Health & Disability Commissioner to the
letter received on 9 May 2024
o any formal documents relating to EDS & GI vascular compression
syndromes from X to X [three-month period]
Without refinement to the above, your request may be declined under
section 18(f) of the Act, as it may require substantial collation.
This email is also to let you know that Health NZ needs more time to make
a decision on your request.
The Act requires that we advise you of our decision on your request no
later than 20 working days after the day we received your request.
Unfortunately, it will not be possible to meet that time limit and we are
therefore writing to notify you of an extension of the time to make our
decision, to 11 March 2025. The length of this extension takes into
account the legislative close down period from 25 December 2024 to 15
January 2025.
This extension is required because the consultations needed to make a
decision on your request are such that a proper response cannot reasonably
be made within the original time limit. We will need to consult with the
Health and Disability Commissioner throughout the process of completing
your request, however we will endeavour to have a response to you as soon
as possible.
If you have any questions, please contact us
at [1][email address].
If you are not happy with this extension, you have the right to make a
complaint to the Ombudsman. Information about how to do this is available
at www.ombudsman.parliament.nz or by phoning 0800 802 602.
Nāku iti noa, nā
Miranda
Government Services
[2][email address]
Health New Zealand | Te Whatu Ora
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. mailto:[Health New Zealand request email]
2. mailto:[email address]
From: hnzOIA
Tēnā koe Jacqui,
I am following up on our email sent to you on 20 December 2024 regarding
the possibility of refinement on your Official Information Act request set
out in the below.
We note that any information or email correspondence about EDS and GI
vascular compression syndromes is likely to include a significant volume
of material that staff would be required to manually review, taking
considerable time away from their core business function. In order to
provide you with information that is feasibly retrievable we suggest the
following refinement to your request:
o a copy of any response to the Health & Disability Commissioner to the
letter received on 9 May 2024
o any formal documents relating to EDS & GI vascular compression
syndromes from 1 September 2024 to 30 November 2024
Without refinement to the above, your request may be declined under
section 18(f) of the Act, as it may require substantial collation. Can you
please confirm the refinement or otherwise by 5.00pm 10 January 2025.
If you have any questions, please contact us
at [1][email address].
If you are not happy with this extension, you have the right to make a
complaint to the Ombudsman. Information about how to do this is available
at [2]www.ombudsman.parliament.nz or by phoning 0800 802 602.
Nāku iti noa, nā
Government Services
[3][email address]
Health New Zealand | Te Whatu Ora
------------------- Original Message -------------------
From: HNZ OIA <[email address]>;
Received: Fri Dec 20 2024 10:12:23 GMT+1300 (New Zealand Daylight Time)
To: Jacqui Hale <[FOI #29279 email]>;
Subject: Clarification/refinement needed for your request for information
HNZ00072944 CRM:0589245
Tēnā koe Jacqui,
Thank you for your email of 2 November 2024, asking for the following
information under the Official Information Act 1982 (the Act):
I request a copy of any response made to the commissioners letter, and
whether or not a response has been made, copies of all supporting
information and briefings held by health New Zealand relating to these
issues that could inform or could have informed a response.
Along with this please provide any information or correspondence in the
period 1st July 2022 to 9th May 2024 that is pertinent to the issues
raised including but not limited to assessment of the evidence for
efficacy, clinical or cost effectiveness of treatments undertaken globally
for this group of conditions and decisions or policy informed by such
assessments or judgments.
Any information or email correspondence about EDS and GI vascular
compression syndromes is likely to include a significant volume of
material that staff would be required to manually review, taking
considerable time away from their core business function. In order to
provide you with information that is feasibly retrievable can you please
refine the timeframe of your request to a three-month period?
o
o a copy of any response to the Health & Disability Commissioner to the
letter received on 9 May 2024
o any formal documents relating to EDS & GI vascular compression
syndromes from X to X [three-month period]
Without refinement to the above, your request may be declined under
section 18(f) of the Act, as it may require substantial collation.
This email is also to let you know that Health NZ needs more time to make
a decision on your request.
The Act requires that we advise you of our decision on your request no
later than 20 working days after the day we received your request.
Unfortunately, it will not be possible to meet that time limit and we are
therefore writing to notify you of an extension of the time to make our
decision, to 11 March 2025. The length of this extension takes into
account the legislative close down period from 25 December 2024 to 15
January 2025.
This extension is required because the consultations needed to make a
decision on your request are such that a proper response cannot reasonably
be made within the original time limit. We will need to consult with the
Health and Disability Commissioner throughout the process of completing
your request, however we will endeavour to have a response to you as soon
as possible.
If you have any questions, please contact us
at [4][email address].
If you are not happy with this extension, you have the right to make a
complaint to the Ombudsman. Information about how to do this is available
at www.ombudsman.parliament.nz or by phoning 0800 802 602.
Nāku iti noa, nā
Miranda
Government Services
[5][email address]
Health New Zealand | Te Whatu Ora
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. mailto:[Health New Zealand request email]
2. http://www.ombudsman.parliament.nz/
3. mailto:[email address]
4. mailto:[Health New Zealand request email]
5. mailto:[email address]
hide quoted sections
From: Jacqui Hale
Dear Miranda and government services (hnzOIA) team,
Thank you for considering my request of 22nd November and your communication of 20th December.
I requested
1. a copy of any responses made to the commissioners letter to the HNZ CEO of 9th May 2024 regarding the diagnosis and care of patients with Hypermobile Ehlers Danlos Syndrome with possible Vascular Compression Syndrome
2. A copy of supporting information and briefings held by Health New Zealand relating to these issues, including but not limited to assessment of the evidence for efficacy, clinical or cost effectiveness of treatments undertaken globally for this group of conditions, and decisions or policy informed by such assessments or judgments. (I am aware that briefings may include communication with other bodies such as the ministry of health)
In your response you asked that the second element of this request be limited to a 3 month period, and have suggested the period September to November 2024, in order to limit the amount of manual sifting of information required by HNZ staff.
I would like to be helpful in relation to administrative workload, but have the disadvantage that I do not know when in the period leading up to or after the commissioners letter Health New Zealand did the mahi to consider the issue.
Could I therefore suggest that you respond to point 1 of the request above and, if there has been a substantive written response to the commissioner (rather than just an acknowledgement or holding response) by Health New Zealand, then you provide the supporting materials in the 3 months up to and including the date of that response.
If there has not yet been a substantive response to the commissioner, then please provide the supporting materials in the 3 months from 9th May 2024 to 9th August 2024, unless in the judgment of the responsible officer for considering treatment for these conditions there is a 3 month window that better covers the timeframe that substantive work has been done on this matter.
I trust you will appreciate this best navigates the issue of administrative workload but aims to avoid mis-specifying the wrong 3 month period given that it is Health New Zealand rather than myself that has the knowledge about when the work has been done to inform a response to the commissioner.
Please confirm as soon as possible the timeframe by which you are able to meet this response.
Thank you for your help.
Yours sincerely,
Jacqui Hale
Things to do with this request
- Add an annotation (to help the requester or others)
- Download a zip file of all correspondence
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