Melanie Steedman wants less barriers to support for chronically ill people such as herself. She is largely housebound with chronic fatigue syndrome. Photo / Alan Gibson
Access to financial assistance for the chronically ill is getting easier but as Natalie Akoorie explains, some barriers still exist.
Melanie Steedman was seven months from completing her Masters of Applied Psychology when she caught the flu in August 2017.
She never recovered, and she never finished her studies.
A year later the 38-year-old Tauranga woman was diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, ME/CFS.
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She lives with her parents and her mother is her primary caregiver because Steedman is now house-bound.
"I was a fit, healthy person before I got sick. I was so close to finishing my masters' research."
Once it became clear Steedman could not return to her part-time job in a garden centre, she applied for a sickness benefit from Work and Income.
It first meant a visit to her doctor for a sick certificate, which was followed by a "crash" where Steedman experiences a post-exertional malaise that leaves her bed bound for days.
"Each visit takes eight days of my life. I have to bank energy for three days."
Banking energy meant not going for a walk in the garden or to the letterbox, reducing showering to twice a week, and napping during the day.
"The appointment itself takes just about 40 minutes from leaving my house to returning.
"My parents, both in their 70s with their own health issues, drive to help me conserve my energy. After this extremely brief outing I experience post-exertion malaise [a crash] that typically lasts four days."
That was followed by a "window appointment" interview at Work and Income, which, depending on the wait, could leave her bed bound for more than a week.
"I was forced to wait for over an hour in the Work and Income centre. As somebody severely ill and housebound, approximately 10 minutes waiting translates to a full day of experiencing post-exertion malaise," Steedman said.
"The feeling of fatigue is unpleasant; At its worst my body feels like it is shutting down.
"I can't sleep. Sometimes during a crash I have several hours when I can only lie in the dark, unable to even read to distract myself from the awful symptoms.
"On top of the extreme fatigue throughout my body, my muscles ache and twitch. I experience headaches, mild nausea, dizziness, blurry vision, palpitations and difficulty thinking.
"I can't really live, I'm just recovering. So that hour wait is significant for somebody with ME and I think for people with chronic illness that hour wait is quite inappropriate."
Because a sickness benefit requires renewal every three months, Steedman - with the help of her GP - applied for a supported living payment.
"It would mean I could focus on managing my health without being interrupted by these unnecessary crashes. Crashes come with the risk of further deteriorating my condition."
It took about three months just to get and fill out the paperwork for the supported living payment, Steedman says, because of her illness.
"Filling in paperwork takes concentration. At my healthiest I still experience disabling fatigue and cognitive issues such as difficulty concentrating and difficulty speaking.
"I can't remember basic words and, in addition, speaking takes a lot of energy.
"By banking energy, what I'm doing is putting my body in the best health that is achievable for me by not triggering post-exertional malaise or not putting myself in a crash, even a mild crash, so that when I turn up to an appointment I'm the most clear-headed I can be.
"I'm doing the least damage to my health because I'm not already in a depleted state."
Once at Work and Income, Steedman waited 20 minutes for the required face-to-face interview.
"That is another barrier; another eight days of my life. In fact, I banked energy for an entire seven days and still crashed badly."
Steedman said she purposely filled out the paperwork beforehand and her father tried to drop it in but he was sent away. Steedman was assigned to a random case manager.
"Because you are sitting there and for 10 minutes, which is going to translate to a day of illness, all they're doing is flicking through my paperwork.
"They don't realise I am seriously ill when I arrive at the centre. I assume if they did they would ensure I didn't wait for the case manager for 20 minutes.
"We're talking about the very government department tasked with supporting the seriously ill being unprepared for the needs of the seriously ill."
She said a set appointment time, reserved carpark close to the door, a pre-assigned case worker familiar with the case, and already reviewed paperwork would make a huge difference to chronically unwell people attending appointments.
Despite her difficulties, Steedman considers herself one of the "lucky ones" because she has the support to enable her to get to the appointment.
"Even though I am seriously ill, I'm considered moderate on the scale when it comes to ME. There are people much more seriously ill than I am."
During the interview it took so long Steedman crashed, badly.
But she believes some very compassionate and understanding staff at the centre that day helped her get the benefit without the need for a second opinion, which she was very grateful for.
Work and Income client service delivery group general manager Kay Read said she was concerned to hear about Steedman's experience and there were options available to make access easier.
"We encourage people to do their benefit applications online, so we're able to work on it before we're required to meet and interview them, and reducing the amount of time spent in the office with us."
Steedman said she decided against the online application because it was tiring and once she had trouble submitting it after filling it out.
Read said an interview was required to ensure the information declared was correct, and the face-to-face interactions enabled Work and Income to better understand each person's individual circumstances, to ensure they were getting the right support.
"Our staff do visit people at home or in hospital for interviews if they're unable to come into the service centre, and an agent can be appointed to work with us on a person's behalf if they wish.
"This could be to go to appointments for them, receive their mail, update their details or apply for financial assistance."
Steedman said if she'd known about this option she would have used it.
Read said Work and Income clients could also register to use the online service MyMSD, which allows them to check payments, manage appointments, update changes and apply for a benefit online at any time.
"We acknowledge our forms and processes can sometimes be difficult, and our systems don't always support our frontline in the way we would like.
"We're committed to improving this and are strengthening our services, including providing more services online and over the phone, so that our clients don't always need to come to an office."
Steedman will receive the supported living payment for two years, which she is thankful for.
"That definitely takes a lot of pressure off somebody in my circumstances. Financial pressure.
"Worries about the future, all those kind of things someone with a chronic illness often have to contend with over and on top of serious symptoms."
She is also grateful for her GP, who she credits with preserving her quality of life through sound advice.
"I had a great doctor giving me good advice and that prevented me from sliding into that seriously ill category.
"My doctor was very realistic from the start. He gave me advice quite early about rest, even when you start to feel better, rest."
She wants doctors to receive training on ME at medical school.
"Because I don't know what's happening with my body. I had these assumptions I was a fit, healthy person. I used to climb the Mount [Mt Maunganui] every single week."
She had a sense of "survivor's guilt" because many patients with ME struggle in a system that has no official diagnosis or treatment for ME.
"I know young people whose lives have been taken from them unnecessarily because they didn't have that support from their GP and then they get into the position where they're fighting the medical profession rather than having a relationship that's like a partnership."
American ME researcher Dr Maureen Hanson said earlier this year: "It needs to be recognised that people with ME lose their lives even if they don't die".
Steedman: "It does take our lives. It takes the life we expected to live. It takes our dreams, it takes our relationships.
"It took away from me the possibility of being a mother. It's taken my independence, it's taken my ability to study and have a vibrant mind.
"But because I had a good doctor, I managed to rebuild a life that's never-the-less quite a happy life. And I think that's actually quite special."
M.E. Awareness NZ spokeswoman Rose Camp said thousands of New Zealanders lived in poverty after having to give up work either because they or their child or partner was very sick with ME.
"There are several barriers to accessing financial support. Many people with ME have told us that Work and Income case workers have never informed them of the support they could be accessing such as the Supported Living Payment.
"Often they only hear about this support when it is mentioned by another member of the ME community."
Options such as having a home assessment or a proxy attend appointments or act
on their behalf, were also not commonly known about.
Another barrier in accessing financial help was an uneducated doctor.
"Many doctors have never had sufficient access to quality information about ME to accurately describe to Work and Income the level of difficulties that people with ME experience with the activities of daily life.
"The process to apply for the Supported Living Payment is overwhelming for
many, and particularly for people with ME who are also contending with cognitive
difficulties, profound fatigue, and dramatic and prolonged worsening of symptoms from activity."
The organisation suggested improvements to access including:
• Assigning case managers who understand the impact of living with a range of disabilities including "invisible" disabilities;
• Assume that people living with a disability may require a home visit;
• Add ME/CFS, fibromyalgia, Ehlers-Danlos syndrome and other chronic conditions to the list of disabilities on the Disability Certificates completed by GPs;
• Be proactive with reviewing the situation for people that are on repeating three-monthly Job Seeker Medical support payments. When appropriate, encourage GPs to support an application for the Supported Living Payment;
• When appointments for the Job Seeker Medical Support or Supported Living Payment are being booked, provide clear information about accessibility options, such as parking, home visits, appointing agents, electronic submission of forms;
• Assist people to access support from other government agencies such as mobility aids and employment and education, so that people receive whole of life care more easily.
The 19-year-old was found in a remote area in the hills of Upper Hutt.