‘Financial constraint and an ailing body’
By Chris Valli
Blenheim Sun: April 17 2024
Lisa Wheeler says living with Multiple Sclerosis (MS) is often described as a journey marked by unpredictable twists and turns reshaping every facet of life. Lisa spoke exclusively to Sun Journalist Chris Valli about recent ‘unconsulted funding cuts and ‘clinging to hope’.
Lisa says while she understands the need for fiscal responsibility and adherence to use of funding guidelines, it is ‘disheartening to face restrictions in accessing medications vital for managing her health’ simply because they fall outside the purview of government subsidies.
Photo: Helen Nickisson.
Blenheim’s Lisa Wheeler says her journey with Multiple Sclerosis began with subtleties, a ‘mere prickly’ in her pinky toes, inconsequential at first glance. Little did she know that it was the first brushstroke in a portrait of challenges that would unfold over the next 22 years.
Symptoms of MS vary from person to person and depend on the location and severity of nerve fibre damage. These often include vision problems, tiredness, trouble walking and keeping balance, and numbness or weakness in the arms and legs. While there is no cure for MS, treatment can reduce symptoms, prevent further relapses and improve quality of life.
Today, Lisa says she finds herself navigating the world as a wheelchair user, reliant on the support of public health services to sustain a semblance of well-being. Her legs now, she explains, feel as though they’ve been infused with concrete, stiffened and hardened by the relentless progression of this condition.
Simple movements that were once taken for granted have become Herculean tasks. Her legs, once half marathon running, now betray her.
They refuse to move on command, and at times, rebel with painful spasms.
What has served as a lifeline is the Individualised Funding which she began this year. Now she has a regimen of care which includes at least twice weekly massages, physiotherapy sessions, weight training with a support person, appropriate equipment, specialist care and unfunded pharmaceuticals. Lisa says these form the cornerstone of her fight against the encroaching deterioration.
“Each piece is a crucial part in the war against the relentless advance of MS. Each has been funded just in the last year. Prior to that, and for the past 21 years, we’ve incurred the whole cost of this disease; not only losing my function but also earning debt,” she says.
To those who may wonder why such interventions are necessary, she invites Sun readers to glimpse into the reality of living with MS.
“It’s not just about managing symptoms; it’s about reclaiming agency over a body that seems determined to betray. Each massage eases the grip of tension, each physiotherapy session coaxes reluctant muscles into movement, each weight training session fortifies the weakening body and every aspect of support increases my ability to be satisfied with life,” she informs.
“In the midst of this ongoing battle with MS not only do I need to fight my body and this disease, but also bureaucracy. The unprecedented, unconsulted cuts imposed by the Ministry of Disabled People have redacted the ability to choose what services, supports, or equipment meets individual needs.”
“These cuts are felt in the reduction of available vital services. They are the reason why I now find myself grappling with an impossible choice—weighing the importance of physiotherapy, weight training, and prescription drugs against the harsh reality of financial constraints and a failing body.”
Lisa and others say they were left shell-shocked as they learned via social media last month about changes, which saw all purchases – including respite items, travel related costs for carers, as well as any purchases that may be made to give carers a break – axed temporarily with no restart given.
Lisa says physiotherapy now lies beyond reach because her funding does not include therapeutic treatments; with Ministry of Disabled People claiming Allied Health should ‘provide that service when Allied Health is unable to provide the frequency required to make a functional difference.’
“It seems puzzling that while I can partake in horse riding therapy with the RDA to address issues of stiffness, tightness, and immobility in my physical body, I am unable to access through the use of my funding physiotherapy,” she says.
“Then there are the prescription drugs—lifelines in the fight against MS, now rendered inaccessible because they are not funded by Pharmac.
These are not optional medications; they are essential tools in managing symptoms and staving off the progression of the disease.”
Lisa says based on the provided guidelines and information, Individualised
Funding (IF) is intended to provide financial support to individuals with disabilities to enable them to access goods and services that contribute to living a good life, overcoming barriers associated with their impairment, and improving their overall quality of life.
“It is designed to offer flexibility and autonomy, allowing individuals to tailor their support to their unique needs and aspirations, within the parameters of reasonableness, cost-effectiveness, and relevance to disability-related needs. The new changes make these statements laughable.”
“I find it absurd that I can ride a horse at RDA for respite purposes.
The same therapeutic activity wouldn’t be allowed if deemed essential for my own well-being under the new funding changes.
It’s almost like saying I can enjoy the benefits of horse riding, but only if it’s not actually therapeutic.”
Meanwhile, an annual automotive charity event called Bangers to Bluff hopes to raise awareness for MS sufferers. The event started April 9 – April 20 with 16 cars worth less than $2000 embarking on the journey from Auckland to Invercargill, to raise money for Multiple Sclerosis New Zealand.
To learn more about Bangers to Bluff and how Sun readers can get involved, visit https://fundraise. msnz.org.nz/event/bangers-tobluff/home
Footnote: MP Priyanca Radhakrishnan, spokesperson for Disability Issues, read Lisa’s poem to Waikaha (Ministry of Disabled People) at an open meeting in Auckland last week regarding Lisa and others frustrations with MS, which was streamed live on Facebook. A short extract from the poem as follows;
Last Updated 17/04/2024
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