Wednesday, March 30, 2016

Heartache and help

I have this heart condition.

I've had it for years but it's been pretty good for such a long time now that I don't see anyone for it. I was discharged about 18 months ago from from my follow up program because I was doing so well. Hooray for me.

Except recently, this heart condition flared up.

I was really ill.

So I did what I was always told to do when I felt like my heart was going to give out and headed to my GP for a referral to a specialist. 

My 'emergency referral' got me an appointment a MONTH away.

I knew I wouldn't be able to last a month with my heart like this. Doing it's own thing, getting sicker by the day. I'd be dead in a week. The specialist said go to the emergency department in the meantime.

A friend took me to the ED on a Monday night and I was assessed. Yes, my heart was just about to give out, but since I had kids they didn't think it would give out any time soon. 

I didn't understand. What does having kids have to do with it? No medication was started, the nurse said it was because I might have an anaphylactic reaction to it and they didn't want to be responsible for that. Um, OK?

I was left by myself for a while, then discharged alone at midnight having been promised that a referral to Hospital in the Home (HITH) had been made, and that it was HITH that would take care of my heart with medication. 

At home my heart got sicker, but I waited, thinking HITH would come and help me soon. We got referrals to three private heart hospitals and two public, putting our eggs in as many baskets as we could. Hoping there would be space somewhere. That someone would help my poor heart.

We learned that the private heart hospital would charge us $420 per day for me to stay there, after my private health had paid. And that that wouldn't cover specialist fees or medications. You have to be rich to be sick, it would seem, even in Australia. 

MG had two weeks off work to look after me and the kids because I couldn't get out of bed let alone be an actual parent. I've been absent from school drop offs and using the last of my energy to do a few fun things with the kids, wondering all the while if today would be the day that my heart would give out totally. If today would be the day I left my kids without a mother.

MG made a stack of phone calls to the hospital and was put through to all sorts of departments. Some had no record of me, some said the referral was pending, others said it had never been sent. There were no straight answers and we could never speak to the same person twice. 

Finally, at the end of the week MG got through to the correct person by pure chance and we learned that the HITH referral had gone through and been rejected as they didn't have any room.

I'd been desperately waiting for this "virtual bed" and no one had told us it wasn't available, and they hadn't referred on to another service like they should have.

So me and my heart were just left to fend for ourselves, desperate for medication, clinging on for dear life, back to square one as if we hadn't asked for help at all. 

I took another trip to the ED the following Monday as my heart had become much, much worse. I was finally seen by the heart team who noticed that they hadn't been called to see me last time when they should have been. They were so lovely. They said they had a bed upstairs on the heart ward for me and even gave me a starting dose of medication and had no idea why the previous nurse told me I couldn't have it.

But then, as quickly as it was given, the bed upstairs was taken away. Someone else needed it. There are lots of broken hearts, all needing help.

And as quickly as the bed upstairs was taken, so was my cubicle in emergency. I was now on a stretcher in the corridor.

Hours passed. A nurse checked on me once to find my heart was in a very bad way, I told them it hurt more than I could ever remember it hurting. He called over to another nurse and a passing doctor rolled his eyes and said "ugh, of course her heart hurts" then, trying to imitate my voice said "somebody pay attention to me".

I broke down. I couldn't believe I was being mocked for asking for help. 

I was informed that they'd stopped looking for a bed for me since all the receptionists would stop work in an hour, and that they would try again tomorrow... that I could spend the night on the stretcher in the corridor and try to get some sleep.

Have you ever been on stretcher in a emergency department corridor? Sleep is not really forthcoming. There were five or six empty bays that we could see from that corner of the corridor, but I wasn't allowed one of them, they were for "sick people" who would come in through the night, not for those with sore hearts.

MG and I decided I would be better in my own bed and tried to discharge but the doctor wouldn't let us. He kept saying "you're in a bed in a hospital" whenever MG or I mentioned the words stretcher or corridor.

We asked to talk to someone higher up. A few nurses (all lovely) came by to try and convince me to stay, but we again requested to leave. Being surrounded by so much trauma was making my heart hurt even more at this stage.

Finally, a nice doctor came to us and agreed that a corridor stretcher wasn't really ideal and said that it was likely I'd be waiting on that stretcher for four to five days for a bed to become available in the heart ward, and it might be better if I went home to wait it out.

I signed the forms and was discharged.

At home over the coming days we chased more referrals. The hospital had actually sent the referral this time (hooray), but to the wrong centre (groan), so MG, acting as both nurse and personal assistant, kept calling as many places as he could. 

Most said call again later, or that they'd get back to us. Two weeks later we've only heard from one of those places (to say no), the rest still haven't returned our calls.

Finally, we decided that it was worth a shot showing up at the local community heart clinic, without a referral, to beg for help.

I almost wept with relief when they said they would fit me in.

An amazing nurse (are you sensing a theme here? nurses are awesome) took me through and my heart was examined. It was really, really sick, but I had gotten there just in time. He recommended a course of treatment, got it written up by the doctor, and let me know which additional services he was referring me to... and then actually referred me to them. 

He said that my case is far from uncommon and recommended I never go to that particular emergency room ever again. 

He referred me to HITH again so now I am in the community clinic and the Hospital in the Home - where nurses and doctors visit me daily to make sure my heart is OK and that the medication is kicking in. 

It took two weeks of begging, being told that I was an attention seeker, being discharged without care, two emergency room visits, four GP visits, endless phonecalls, the tireless work of MG and that one amazing nurse to get medication started; to get the care that I needed.

As I see how much effort it took to get medical care I can't help but think that everyday people like you and me would find this delay in treating a heart condition appalling. 

But go back and change "heart" to mental illness, and this is exactly what is happening. What happened to me these past few weeks. And it's happening everywhere and we just accept it. 

The stigma of mental illness in the community is greatly reducing, but it remains high in the hospital, the very place we are meant to go for help. Medical professionals not taking it seriously; mocking patients; not bothering to put in referrals; providing a lower standard of care than they would someone with a physical condition. 

It's time to stop accepting that this is just the way it is. It's time to stop punishing those with mental illness. It's time we realised that mental illness is just as real as a heart condition, diabetes, or a broken leg. 

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