30 April 2025
Jacqui Hale
[FYI request #29279 email]
Tēnā koe Jacqui
Your request for official information, reference: HNZ00072944
Thank you for your email on 2 November 2024, asking Health New Zealand | Te Whatu Ora for the
following 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.
On 20 December 2024, we recommended that your request be refined. You responded on 7
January 2025 and your request was refined to:
a copy of any response to the Health & Disability Commissioner to the letter received on 9
May 2024
any formal documents relating to EDS & GI vascular compression syndromes from 9th May
2024 to 9th August 2024
On 11 March 2025, we provided an initial response to your request. This response will be for the
remainder of the documents.
Response
Before responding to your request, I would like to provide some context.
I sympathise with all patients facing healthcare challenges, and I acknowledge the difficulties many
encounter in accessing comprehensive healthcare for rare conditions, especially where there is not
a well-established research evidence base. Hearing personal accounts of individuals as they
navigate the challenges of returning to optimal health and well-being, as well as their experiences
with our healthcare system, is extremely important to me.
I’m aware that work is currently underway to better understand these conditions such as EDS both
internationally and here in New Zealand, which will lead to improvements in patient care and
pathways for rare disorders. It is important to recognise that patients can present with a wide range
of symptoms, which can lead to significant challenges in diagnosing and determining the most
appropriate treatment plan to achieve the best possible outcomes for each patient.
However, balancing local access to specialised care and centres of excellence for specialist
treatment can be difficult.
Diagnosing and treating complex long-term conditions that affect multiple organ systems is never
straightforward. You will be interested to know that Health NZ is developing a single national multi-
disciplinary meeting (MDM) approach for complex vascular issues potentially related to EDS. This
MDM is intended to serve as national point of review and clinical consensus, where complex cases
are being considered for vascular surgery. This centralised approach should ensure careful
assessment and consistent management of complex vascular conditions in New Zealand in the
future.
The intent is that the national vascular MDM will accept referrals for individuals being evaluated for
Abdominal Vascular Compression Syndrome diagnosis (for any underlying cause), where surgery
may be indicated. This expert group will then develop a treatment plan.
You may also be interested in further details from the Vascular Society of Aotearoa New Zealand
and their position statement, released a few months ago, which can be found at: Announcements &
Events – Vascular Society of Aotearoa New Zealand.
I want to reassure you that Health NZ remains committed to continuously improving our health
system to ensure timely access to the right health and wellbeing support for all. I hope this
information demonstrates the ongoing efforts being made to ensure quality and timely care for
patients with rare disorders.
Please see attached as Appendix One, outlining the release of the remaining documents related
to Ehlers-Danlos syndrome and Gastrointestinal Vascular Compression Syndromes in scope of
your request. Please see attached as Appendix Two, the documents that are able to be released.
In order to provide you with information relevant to your request, some information has been
provided that sits outside the scope but is provided in good faith. Document Three, for example, is
a draft document created by the interim Chief Medical Officer to inform work on complex
conditions.
Some information within these documents has been withheld under section 9(2)(a) of the Act in
order to protect their privacy. The need to protect the privacy of these individuals is not outweighed
by the public interest in the release of this information.
How to get in touch
If you have any questions, you can contact us at [email address]. If you are not
happy with this response, 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.
As this information may be of interest to other members of the public, Health NZ may proactively
release a copy of this response on our website. All requester data, including your name and
contact details, will be removed prior to release.
Nāku iti noa, nā
Prof Dame Helen Stokes-Lampard
National Chief Medical Officer
Office of the Chief Clinical Officer
Health New Zealand | Te Whatu Ora
Appendix One
No.
Date
Title
Decision on release
1. 9 May 2024
Health and Disability
Released in full.
Commissioner letter: Ehlers-
Danlos Syndrome and
Gastrointestinal Vascular
Compression Syndromes
2. 11 June 2024 Response to Health and
Contact details redacted under section
Disability Commissioner
9(2)(a) to protect the privacy of a natural
person.
3. N/A
Complex Conditions Without Released in full.
Well Defined Care Pathways
4. N/A
EDS Canterbury Health
Released in full.
Pathway.
5. N/A
EDS Flow Diagram
Released in full.
Draft 2
6. Dec 2023
Northern Region Clinical
Contact details redacted under section
Practice Committee Letter
9(2)(a) to protect the privacy of a natural
from Hames Le Fevre:
person.
Re: Median Arcuate
Ligament Syndrome
TeWhatuOra.govt.nz
Health NZ, PO Box 793,
Wellington 6140, New Zealand
