- Opinion
- 25 Nov 13
Despite increasing awareness about mental illness, the outdated Long Term Illness Scheme draws a clear divide between physical illness and mental illness. DJ Alex Donald talks about her experiences of living with clinical depression.
“I’ve had it since I was a child,” says Alex Donald, speaking about clinical depression. “There’s a strong history of mental illness on my mother’s side of the family, and it goes back generations. A child care professional first said to my Mum when I was just three that she thought I was depressed.
“Then I was re-diagnosed with it when I was about 10, and went to quite a lot of therapy between the ages of 16 and 22,” Alex continues. “The problem with clinical depression is that it’s not responsive to talk therapy. So I struggled on for a few years, before having what most people would refer to as nervous breakdowns. They are actually called major depressive episodes. I’ve had three of those.”
Even when her depression was at a low level, Alex would suffer anxiety, lethargy, hypersomnia and almost constant suicidal ideation.
“To be brutally honest, I had almost daily thoughts of suicide, thinking it was always an option – the option. The only thing that stopped me was the thought of what it would do to my family, which I think stops a lot of people. Then the major depressive episodes would have included bouts of uncontrollable crying, thoughts that life was completely hopeless – and the belief that I was the only one who could see it clearly, that everything was hopeless and why would you bother continuing on, to just survive until you were 70?”
It wasn’t until Alex suffered her third major depressive episode, at the age of 32, that she found a “wonderful” psychiatrist. She was prescribed a successful combination of medications and for the first time, her symptoms finally began to come under control.
“When I started taking the right medication, all of that disappeared,” she says. “That’s not to say that medication makes you feel like you’ve won the lottery every single day. It makes you feel like you can cope. Things have happened to me in the five years since I started going on medication – relationships breaking up, redundancy – and I have been able to deal with them in the same way that a mentally healthy person would deal with them. Now, I just see them as a set-back and proceed along as normal, because now I’m strong enough to be able to deal with them. So I’m a huge advocate of medication and of removing the stigma around it, because it literally saved my life.”
The monthly cost of her medication places a huge financial burden on Alex who, as a freelance club DJ and a writer, doesn’t have a fixed income. Her depression can also have an adverse effect on her ability to work.
“At times, I wasn’t be able to write at all. I’d force myself to go out and DJ because I had to pay the bills, but I wouldn’t be able to write. I’m lucky in that with writing, I’ve found the one thing I really want to do, and hope I have success with it eventually. But there is no job security.”
Even for those lucky enough to be in steady, full-time employment, the stigma surrounding mental illness can prevent people from taking time off – a reluctance that would not be there, were the ailment purely physical.
“When people with depression have a steady job, they can’t tell their employer that they need time off work,” opines Alex, “because the fear strikes them that your boss will think you’re not up to the job. They have to get out there and work an eight-hour day to pay their bills, while struggling with their depression. And to ask that of people is like asking someone in the middle of a heart attack to continue working. It’s not feasible during depression.”
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Despite increased awareness, some myths about mental health still prevail. Research has shown that one in four Irish people will suffer from depression – but there are different types. Reactionary depression is often short-term and can be triggered by difficult life events. Though hugely debilitating to the individual, it’s not a permanent condition. In contrast, clinical depression is a lifelong illness. Like other nearly always permanent conditions like schizophrenia and bipolar disorder, it cannot be treated solely by talk therapy, and will often only respond to careful medication.
“I consider my depression to be like diabetes or epilepsy,” Alex reflects, “or any other illness where you need to take medication to bring your body or mind back to normal functioning level. So there shouldn’t be a stigma to it. But an awful lot of people with depression feel like they’re a failure, like they’re not strong enough to cope with life. And there’s often talk like, ‘Would you not try to give up the tablets and see if you could manage on your own?’ Would anyone ever turn to someone with epilepsy and say, ‘Would you not give up your tablets and try to manage on your own?’ You absolutely wouldn’t! So that stigma around taking medication to function normally needs to be removed.”
Unfortunately, Alex has found that public representatives aren’t helping to lift the stigma.
“I saw that in the episode of Frontline last year, where George Hook said, ‘I’ve a problem with anti-depressants’ and the Minister for Mental Health Kathleen Lynch said, ‘Yes George, I too have a problem with anti-depressants’ – and then failed to qualify that statement. Had she said, ‘I have a problem with the over-prescription of anti-depressants’ or whatever, fair enough, but for the Minster for Mental Health to be against anti-depressants is wrong.”
Alex currently takes two medications to help manage her depression: Cymbalta, which is an SNRI (serotonin–norepinephrine reuptake inhibitor) or anti-depressive, and a mood stabiliser Lamaictal, which is often used to treat bipolar disorder, but in small doses can boost the effect of an anti-depressant. Per month, she spends between €90 and €120 on filling her prescriptions – citing hugely varying pharmacy pricing mark-ups as the reason for the disparity. At the moment, Alex’s medication costs just under the €144 per month required to be eligible for financial aid – but just over the income cap to be eligible for a Medical Card. Thus, she’s stuck in a no-woman’s land.
Regulations were devised in 1971, 1973 and 1975 specifying the conditions covered by the Long Term Illness Scheme. The Health Services (Amendment) Regulations, 1971 specified that mental illness in a person under 16 should be covered under the scheme – but that adults would not be covered.
The legislation reveals some serious flaws in the understanding of mental illness. Research has consistently shown that the majority of people suffering long0term mental illnesses such as clinical depression, bipolar disorder and schizophrenia are diagnosed in their late teens and early twenties, immediately rendering them ineligible for coverage. As for individuals who are diagnosed before then, many conditions are lifelong and not magically cured in the late teens, begging the question as to why coverage is abruptly stopped. While financial aid does kick in, should an individual’s medications cost over €144 per month, there can still be a huge financial burden placed on people suffering from an illness.
Either way, our knowledge of mental illness has changed drastically over the past four decades and legislation should reflect that. As a nation, we currently have the fourth highest suicide rate in the EU, while depression and mental illness also contribute to unemployment, decreased productivity in the workforce due to sick leave and homelessness. Despite this, the Long Term Illness Scheme still provides far more cover for physical illness than mental illness, perpetuating the idea that the latter is somehow less real.
Minister Kathleen Lynch was unavailable to comment on the issue.
“For this decision to be changed now,” her Private Secretary Adrian McLaughlin told Hot Press, “it would take new legislation and a lot of additional funding to cover such a change. It’s for this reason that this or no other conditions are being added to the scheme at present given the financial position that exists within the Health Services at this time.”
Dr. Shari McDonald was policy officer at the National Disability Authority and, before that, policy and administration manager at Schizophrenia Ireland. She’s now the director of Mental Health Reform.
“Many people with a mental health condition are not covered by the Long Term Illness Scheme,” says Dr. McDonald. “In the past this might not have been as much of an issue because people with severe long-term mental health difficulties could receive free treatment, either in residential centres or in their local community clinic. This was the case in Dublin up until quite recently.
“However, now, even people with long-term, severe mental health difficulties must pay for their medication and there is more of a practice of discharging people from community mental health services back to their GP, where they will not receive free medication. We consider it important that people who need medication as part of their treatment have affordable access to it.”
For its part, the Mental Health Commission, in the Strategic Plan 2013-2015, states: “It is acknowledged that the burden of stigma and discriminatory practices experienced by people with a mental illness can prove to be a greater barrier to recovery than having a mental illness itself.” Their mission statement implies a dedication to tackling both the stigma and practical treatment of mental illness in Ireland. But right now, this is mere wishful thinking.
“Covering mental illness under the Long Term Illness Scheme might give people the support that they need,” Alex Donald observes. “It would acknowledge that mental illnesses are as real and debilitating as physical ailments. And it would also support people practically. Generally, it would benefit the country hugely. And it might just mean that we wouldn’t be so high in the European suicide tables.”