COMMENT | Hardship and relief - journeys in public mental healthcare

COMMENT | You’ve read it countless times, mental health problems are on the rise.

In Malaysia, we are fortunate that those facing mental health, psychological or psychiatric issues, can get affordable treatment in public healthcare - albeit the wait list is long.

However, going through the public healthcare system for mental help is a journey fraught with ups and downs - where gaslighting and lack of empathy or understanding often mar the good work of compassionate professionals.

This is what Nor* (not their real name) and I experienced when we turned to government facilities for help.

Nor - a close friend of mine - suffers from severe clinical anxiety which has impacted their life in many ways.

As for myself, I was diagnosed with attention deficit hyperactivity disorder (ADHD) two years ago.

We both tried private mental healthcare first but turned to the government for different reasons.

My entry into public mental healthcare in 2021 was relatively painless, starting with a visit to a government clinic for a referral letter to see a psychiatrist at the Putrajaya Hospital (HPJ), after which an appointment was set for about a month and a half later.

For Nor, however, it was traumatic.

Nor was previously seeing a private clinical psychologist, who wrote a referral letter for them to get public treatment and more affordable access to medication.

When Nor turned up at a major public hospital in the Klang Valley late last year it was also a painless experience at first, with an appointment made for two months later in January.

But when it came time for the appointment, Nor was struck an emotional blow.

The medical staff realised that they had made an error - a clinical psychologist’s referral letter could not be accepted and Nor needed a referral letter from a doctor instead.

The medical staff were kind enough to send Nor down the hall to get a referral - but the doctor they met was anything but understanding.

As Nor told it, the doctor shouted and berated them for not having a doctor’s letter, saying they should have known.

Already anxious about the administrative error and fearing being turned away for help, the tongue-lashing pushed Nor over the edge and they were unable to defend themselves as they fought back tears.

It was only when Nor’s partner intervened and said that Nor was not informed of the proper procedure prior to that day, that the doctor calmed down - and eventually signed a referral letter so that a psychiatrist could see Nor that same day.

This would lead to the first relief for Nor in their public healthcare journey.

Significant difference in cost

Both the consultation and medication totalled RM30 for Nor as their first visit was from a private referral, with subsequent appointments costing RM5.

This was a significant difference from Nor’s experience with a private psychiatrist, where consultation and medication can lead to bills of up to RM200 per appointment - a major economic burden to the freelancer who was struggling to make ends meet at the time.

Likewise, for ADHD, a single Ritalin pill can cost around RM10.

I am prescribed three to four pills a day depending on my work schedule, which means that if not for the government, I could be paying at least RM30 per day or RM900 a month - if not more - to enjoy the benefit of functioning like a regular person.

Nor’s access to medication from the general hospital was also significantly faster than what I had experienced - as it took months before HPJ doctors confirmed my ADHD diagnosis.

Just in my head?

For both of us, however, the first appointment led to being assigned to occupational therapy - a treatment course we found unhelpful.

In my case, the occupational therapist was clearly not equipped to deal with ADHD, and found it difficult to understand and empathise with the problems I faced.

It was dismissive enough that I felt that my ADHD - a genetic condition I will likely pass down to any future children - could have been a figment of my imagination.

Youth today would describe this as gaslighting.

During one session, the occupational therapist even suggested I do intermittent fasting, not to help with my ADHD, but rather to prevent overeating.

As for Nor, while the initial advice from the occupational therapist they met was helpful, later sessions boiled down to generic “think positive thoughts” advice.

It was unhelpful enough for Nor to lie about their mental condition so that they did not have to attend another session so soon.

This is not to say that occupational therapy is inherently bad, but rather that the therapy - at least in our experience - is too basic for those who have already tried “positive thinking” or have more complex problems.

Both Nor and I have also dealt with psychiatrists who have been dismissive or unhelpful.

Nor had been struggling with sleep for years, and when their mental healthcare journey began, it was initially assumed this was because of anxiety.

But when medication helped keep the anxiety under control, and Nor’s problem morphed from being unable to fall asleep to being unable to stay asleep - they suspected there might be a different underlying cause.

However, a request for a referral to see a sleep specialist was brushed aside by a psychiatrist, who said it was just “part of a vicious cycle” while not hearing out Nor’s explanations.

“Why is it so hard to let me sleep?” Nor told me tearfully.

Wrong dosage

When I was in the early stages of getting medicated with ADHD, one psychiatrist told me to take my two half pill doses at the time with a 12-hour gap in between.

This was despite any literature I had read on Ritalin saying that the medication only lasted for four to six hours.

The psychiatrist, however, was adamant about the timing he prescribed and assured me that the medication would work for 12 hours.

When I got home and read the pamphlet that came with the box of Ritalin, it stated that for children the recommended dosage was once in breakfast, and once in the afternoon.

I was being treated worse than a child, I felt then.

When I met a different group of psychiatrists at my next appointment, they were puzzled by their colleague’s previous advice and affirmed that the medication only lasts four to six hours and that intervals between doses should be adjusted accordingly.

I later found out from another psychiatrist that the 12-hour timing was also bad for me, as I’m not supposed to take Ritalin after 6pm to avoid sleep disruptions.

To be fair, when I first sought help for ADHD in the private system, my therapist at the time had no knowledge about medical treatment for the disorder, while the person who diagnosed me was not actually qualified to do so.

Therapy sessions

What I found more helpful in public mental healthcare was therapy sessions with a clinical psychologist at the community mental health (Mentari) clinic.

The clinical psychologist I was assigned to, Aida, was instrumental in confirming my ADHD diagnosis.

It was both liberating and validating as, after months of waiting - and the unhelpful occupational therapy - I had begun to doubt whether there was actually anything wrong with me.

Aida was also a strong advocate for me to the psychiatrists when I had problems with them, and also helped equip me with skills to deal with my ADHD besides just taking medication.

Nor has not been assigned to therapy at a Mentari clinic, but their prior experience with a private clinical psychologist was also a very positive one which helped them learn coping mechanisms and come to terms with matters they struggled with.

Both of us also met with psychiatrists and doctors in the public mental healthcare system who are genuinely compassionate and helpful, but the overall experience still remains tainted by those few bad experiences.

For those suffering from anxiety and depression - which often comes as a package deal with other mental health problems - but lack strong determination or support, incidents such as the ones we faced could be a major deterrent.

Being made to doubt ourselves, or feel like we should be doing as well as those without problems or are neurotypical could even be cause for some to abandon their journey in public mental healthcare entirely.

And it's not just a simple case of “pulling yourself together” as some would like to think it is.

ZIKRI KAMARULZAMAN is a member of the Malaysiakini team.

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