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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

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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

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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.

Statement of confidentiality: This email message and any accompanying
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From: hnzOIA


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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

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1. mailto:[Health New Zealand request email]
2. mailto:[email address]

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