Critical Reforms Needed For ME/CFS Patients In Aotearoa: Coalition Calls On HDC For Action

The Health and Disability Commissioner (HDC) is currently
reviewing the Health and Disability Commissioner Act 1994
(the Act) and the Code of Health and Disability Services
Consumers’ Rights (the Code). These pieces of legislation
aim to promote and protect the rights of health consumers
and disability services consumers, ensuring the fair,
simple, speedy, and efficient resolution of complaints
relating to the infringement of these rights.

In a bid
to drive critical improvements in healthcare services for
ME/CFS patients, the coalition of organisations representing
the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
(ME/CFS) community in Aotearoa New Zealand has submitted a
comprehensive report directly to the HDC

The
submission calls for critical improvements in healthcare
services for ME/CFS patients and highlights current rights
violations under the Code.

The report states that
ME/CFS patients frequently encounter healthcare providers
who lack the necessary knowledge and expertise, leading to
substandard care. Currently, there are no senior specialists
in ME/CFS in New Zealand, exacerbating the inadequate
dissemination of up-to-date clinical guidance. Despite
ME/CFS meeting the New Zealand government and United Nations
definitions of ‘disability,’ patients are excluded from
Disability Support Services (DSS) funding, nor are they
supported through Long Term Support – Chronic Health
Conditions (LTS-CHC) funding. This has resulted in
significant shortfalls in funding for essential services and
practical supports that could vastly improve their quality
of life. The report also highlights that some health
practitioners continue to recommend discredited treatments
such as Cognitive Behavioural Therapy and Graded Exercise
Therapy without informing patients about the lack of
evidence for these treatments and their potential risks.
This lack of transparency prevents patients from making
informed decisions about their healthcare.

The
coalition’s report emphasises that these issues are
violations of the Code. Specifically, the right to services
of an appropriate standard (Right 4) and the right to be
fully informed (Right 6) are being infringed upon. The
absence of knowledgeable practitioners and senior
specialists means patients are not receiving the care they
are entitled to, while the lack of transparency about
treatment risks denies them the ability to make informed
choices.

In this submission, the collective calls for
medical education institutions to ensure comprehensive and
up-to-date training on ME/CFS for health professionals. This
includes adopting recognised diagnostic criteria, to ensure
accurate diagnosis and effective symptom
management.

Furthermore, it urges that healthcare
providers must inform patients when recommending treatments
that lack a quality evidence base or may be harmful.
Ensuring transparency and informed consent is essential to
protect patients from harm and enable them to make
well-informed decisions about their healthcare. In addition,
Health NZ and the Ministry of Health must be held
accountable for adequately supporting ME/CFS patients. This
includes ensuring that health professionals and support
services are sufficiently equipped to meet the specific
needs of this patient group and allocating adequate funding
and resources for multidisciplinary care and practical
supports, such as home help.

ME/CFS patients must
receive the adequate diagnosis, care and support they need.
If the HDC addresses these critical issues within the Act
and the Code, the collective hopes that New Zealand can
significantly improve the quality of life for ME/CFS
patients and uphold their rights within the healthcare
system.

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The submission was compiled by Aotearoa Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
Collective:

ANZMES (Associated New Zealand Myalgic
Encephalomyelitis Society) – National Advisory on
ME

Complex Chronic Illness Support

M.E.
Awareness NZ

MECFS Canterbury

MEISS
Otago and Southland

ME Support NZ

Rest
Assured Respite Charitable
Trust

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