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NDIS Knock Back No. 2

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I have been working on my NDIS application since August 2022, with nearly six months of evidence collection, specialist appointments, and storytelling.

I was rejected again by the NDIS today after a request for an appeal was denied.

With me spending months explaining and evidencing that my trigger of FND is pain and not mental health or trauma etc., they have excepted this fact. However, now have stated my chronic pain is not ‘fully treated’ noting I have provided the following:

  • Evidence that my chronic pain was from a workplace injury over 22 years ago
  • I see a pain specialist and have letters from two dating back to 2018
  • I have increased treatment since 2017
  • Specialist medication therapy
  • Regular Physiotherapist, massage, and Pilates
  • Steroid injections, dry needling
  • Radio Frequency 3 times per year for three years
  • Multiple MRI’s
  • Multiple hospitalisations and the need to receive four separate rehabilitation in patient care,
  • Podiatrist review and treatment
  • 2021 having a spinal cord stimulator installed.
  • Referred to Neurologist to work in partnership with Pain Specialist in 2022.

This was my rejection response letter

I am not satisfied that this criterion has been met for your neurological impairment resulting from Functional Neurological Disorder and your physical impairment resulting from Chronic Pain.
Importantly, this criterion is not questioning the legitimacy or permanency of any diagnosis, but it is assessing the permanency of the impairment and functional impacts (for example, your reduced capacity for mobility, self-care etc.) that result from these diagnoses.

The NDIA acknowledges that you live with limitations that affect your functional capacity, that you have had to adjust the way you do things and rely on others for assistance. However, to meet this criterion, the evidence must demonstrate that you usually need disability-specific support to participate or complete activities in one or more of the six key activities assessed (communication, social interaction, learning, mobility, self-care and self-management).

I understand you require and benefit from equipment such as Canadian Crutches. Reliance on such items are not considered substantially reduced functional capacity as the items required are considered to be ‘commonly used items’ rather than specialist equipment or technology that is specifically designed to increase the functional capacity and participation of people with disability. Section 5.8 of Becoming a Participant excludes commonly used items. If a person can mobilise with a commonly used item, then it will not satisfy the requirements of Section 5.8.l

NDIS rejection letter dated 6/02/23

The example used in the NDIS instructions and guideline state that a commonly used item is like prescription reading glasses. This is a considerable stretch similar to a walking aide that still, for the most part, traps me in my home, car or workplace, unable to do things with my family and often misses out because of my inability to mobilise.

In short, the rejection was solely because I can use cheap, regularly available mobility equipment to enable me to walk and mobilise (even though this is done with great effort, prone to falls & need supervision and support when in crowded areas. I needed a prescription that you can’t buy from a chemist. Or need to be ‘more disabled’ (paraphrasing here)

So I am back to square one, encouraged by the NDIS to use my GP management plan and private health insurance to receive the support I require.

The purpose of applying for the NDIS was to ensure I maintained my current mobility.

It ensured I could continue to work, pay taxes, and have a somewhat ‘normal’ life.

Not returning to the hospital every 12-18 months with a significant flair-up and having to learn to walk each time (noting the impact on the health system and broader society).

I’m asking for a minimal plan from the NDIS, a modest request, one that each engagement seems like an impossible task.

The system is backward. It is set up to look for ways to reject someone’s application. The scheme is not looking for ways to help the vulnerable and those who genuinely require the service.

I want to work.

I want to have an opportunity to participate in civic and social activities.

I need to be able to support and be available for my family.

Without the NDIS support, I won’t be able to continue the above long-term.

I think I’ve got 3-6 months left until I will require more intensive support.

The Story So Far

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Often I refer to myself as someone in their 40s with a body of a 75year old. Since my 20s, I’ve been in pain and had some form of treatment to remedy it, with only small periods of respite over the past 22 years.

HOW IT BEGAN

It all started as an AIN in a nursing home; I was showering someone, and unfortunately, they passed away; I went against the manual handling policy, and unknowing they had passed, tried to catch them to prevent injury/fall. My back injury was my first interaction with a multidisciplinary team. I spent 6months off work working on my recovery (without the knowledge and experience I have now was taken advantage of by my employer). As a newly married couple, we survived on weetbix and noodles (and the occasional horse poo shovelling job for a spare $20.) Weekly Physiotherapy, biweekly hydrotherapy, and a personal trainer three times a week at a gym.

This time I made good progress, lost a heap of weight, and, although still in pain, lived a relatively busy and normal life (we brought two houses, had four kids, ran a church, started studying & worked various jobs etc.).

DIAGNOSIS AFTER DIAGNOSIS

It wasn’t long after my youngest son was born that things started going downhill for me physically, with a comical but harrowing experience of dislocating my hip standing up off the toilet. This event started the endless cycle of doctors trying to explain the ‘why’; that was in 2008.

SEVEN YEARS OF UNKNOWN

I’ve had so many diagnoses over the years that it’s laughable. Muscle strain, muscle spasms, cramping, bursitis, partial dislocations of the hip, ataxia of unknown origin, arthritis (at various times noted in the hips, knees, and back), deferred pain, mainly in the stomach (which led to so many stomach-related investigations), chronic pain, lower back pain, slipped disc, disc bulges, neurological disorders (functional gait disorder, functional neurological disorder, primary orthostatic tremor) and many more that I can’t remember.

I have had numerous MRIs, phycological assessments, CT scans, ultrasounds, nerve conduction studies, countless blood tests, neurologist appointments, radio-frequency ablation (RFA) (over three years, was getting this treatment three times per year), installation of a spinal cord stimulator in 2021, appointments with social and mental health workers, physiotherapy, occupational therapy, massage, and natural therapies (and some that have slipped my mind). None of these treatments provided sustained absolute relief, nor pinpoints and treated all my symptoms, nor produced a holistic treatment plan or honestly extended comfort.

I’ve been ‘unwell’ in my current state since 2015/16, so seven years of not understanding the ‘WHY’ about my chronic pain, tremors, and functional neurological disorder. Therefore I needed to focus on one avenue to ensure some kind of normality for myself and my family. I’ve focused on pain management for the past seven years, getting my first pain specialist in 2016. My logic is that with effective pain management, I can live a somewhat normal life, continue working and mask whatever is going on with painkillers. Trust me; I needed to try them all and constantly titrate the dosage as my body became tolerant. Although pain killers provide relief, they have side effects (brain fog, tiredness, and weight gain, to name a few); addiction and dependency are problems, too, with some drugs worse than others. I have gone through horrendous withdrawals that have taken me months to overcome (night terrors, night sweats, fatigue.) It’s been a constant juggle, figuring out the drug with the most negligible side effects but will target my pain effectively.

As my symptoms look like I am drunk, I have been ridiculed, the butt of numerous jokes, and the rumour mill has been rampant about why my body movements were not ‘normal.’ 

JUDGING MY SYMPTOMS

These uncontrolled body movements have caused some family members to stop talking to me because they don’t condone my drunken behaviour. Some family members believe that I have significant mental health episodes and not coping at work or any other life events that are occurring at this time (having a busy lifestyle, four children, a child with a disability, and the need to move a lot for work, travelling for work so on and on.) Although I acknowledge that friendly banter and a laugh have been good therapy, I refer to my orthostatic tremors and unusual gait as the character from star wars Jar Jar Binks. There is a fine line between a friendly joke and a hurtful unfiltered uninformed, and hurtful remark.

FUNCTIONAL NEUROLOGICAL DISORDER (FND)

For at least six years, I had been skirting around a functional neurological (FND) diagnosis. FND studies have shown there can be many triggering factors for the onset of FND, for example, a physical injury, infectious illness, a degeneration of mental health, a pain flair-up or migraines. Any of these illnesses can cause someone’s first experience of FND symptoms, and once you have your first episodes, you likely have it for life. Historically functional neurological disorders were not understood in the clinical and academic world. Until recently, this disorder is thought to only result from the uncontrolled or a manifestation of a mental health condition. FND has traditionally been viewed as an entirely psychological disorder, a theory that repressed psychological stress or trauma gets ‘converted’ into a physical symptom; therefore, FND is referenced in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) as a phycological disorder. In recent years, FND has only started to be recognised as a stand-alone neurological condition. 

Therefore I have unfortunately needed to be tested, questioned, and uncomfortably labelled as someone with a complex mental health disorder. I would not be ashamed if that were correct; however, treatment is significantly different if you treat unmanaged chronic pain as a mental health condition. Making the problem worse, many of my medications are used for mental health conditions and epilepsy. Thus when presenting to the hospital, or a new specialist, I need to reexplain my triggers and the root cause of FND. I have been using these medications for nearly seven years and constantly need to explain why I am using this medication for an alternative reason. Note: With the realisation that FND is a neurological disorder that affects the nervous system (although still not sure why), the medication is not questioned as often these days.

The other issue with FND is that symptoms can come and go; this is a relief as I get some much-needed respite. But come on quickly and without warning at other times, and when they do, I need to retell my story and jump through all the hoops before I get the correct treatment. 

WHERE I AM AT NOW

So currently, I am sitting in a hospital, day 12. We have a plan that will get me out of the hospital in the next few weeks and a plan that should stabilise my gait and have less reliance on mobility aides over the next 2-3months. I currently do 2-3hours of allied health supervised physical therapy per day, from the basics, of learning to get out of my bed and car safely, to strengthening exercises to stabilise my core and legs to extremely simplified brain exercises, where I am learning to walk again and retrain my brain in the correct movement patterns required to mobilise on my own safely.

‘FND, the symptoms become ‘stuck’ in a ‘pattern’ in the nervous system. That ‘pattern’ is reflected in altered brain functioning. The result is a genuine and disabling problem that the patient cannot control. Treatment aims to ‘retrain the brain’, for example, by unlearning abnormal and dysfunctional movement patterns and relearning normal movement. One way of thinking about FND is looking at it like a ‘software’ problem on a computer. The ‘hardware’ is not damaged, but there is a problem with the ‘software’, so the computer doesn’t work correctly.’ (https://rarediseases.org/rare-diseases/fnd/)

The following steps are, for me, the scary ones; for some people with FND, the symptoms don’t go away, and some people with FND will remain in a wheelchair or need mobility assistance for the remainder of their life. This is my sixth episode in seven years, resulting in hospitalisation and an extensive rehabilitation program to retrain and rewire my brain. Honestly, I am not looking forward to the eighth, and I am searching for an avenue to slow down and reduce my flare-ups. 

Although I have had considerable relief with my pain specialist (50% reduction in pain over the past 18 months) with the addition of the spinal cord stimulator, the reduction in tremors and FND symptoms has mainly been a fluke (or a side effect.) This single method treatment method (acknowledging that I still see physiotherapy at the gym and walk 10-20km per week when I am well) can not be my golden ticket, and I need to focus on holistically more elements of my treatment. 

So the current plan is to work with a social worker at the hospital, link in OT & Physio, develop a treatment plan that will be sustainable in the community, explore whether I need external support long-term (parking permits, NDIS etc.) and finally admit to myself that I need to regularly see a Neurologist as part of my regular treating team. 

I need to realise that people want to help me and that I am a time, my biggest roadblock, instilling the Aussie male persona of ‘she’ll be right.’ I have built a career in supporting and caring for others, which is a strong point at home with the family. However, I constantly fail at asking for and receiving help from those in my network.

Definitely something to ponder and a start of a new journey for me.

Jeramy

This Blog is also shared on The Mighty

https://themighty.com/topic/functional-neurological-disorder/finding-treatment-plan-after-years-functional-neurological-disorder-rare