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When healthcare is NOT about the patient.......



Have you ever believed in something, something you thought everyone else believed in as well; only to find out that in fact nothing could be further from the truth?

Just after we started chemo@home 5 years ago, a very high up health executive said to us during a meeting, "It's not about the patients, don't bring emotion into this".  It was possibly the first time (but definitely not the last time) that such a jaw dropping statement like this was said to us.

We had started chemo@home on the entire principle that treatment WAS ALL ABOUT THE PATIENT.  For us, the patient and their family are at the centre of everything we do.  Their choices, about their treatment, is what matters most.

To find out that there were health managers and executives who put other concerns before the patient was, for us, mind blowing.  What are these concerns you might ask.... well let’s just say that a lot of emphasis is placed on a health services "activity", the number of staff they have and the size of the budget they hold or money they bring in.  Threaten this in any way, and by crikey, be prepared to be more than just a little disliked for your trouble.


The recent Medibank Private ads, featuring chemo@home and showing nationally on TV, in cinemas, on the radio and at bus stops, have lifted the lid on the availability of our service.  In the states where we have just started up (Melbourne, Sydney and Brisbane) this has resulted in an enthusiastic response and large number of enquires for our services.  However, in Perth where we have had an established service for 5 years, it has led to nothing short of patient outrage.

Patients and their families are furious and very disappointed that our service has been available for 5 years, and they were not told about it or given the choice about where they received their treatment.  The daughter who it has cost $60,000 in travel, parking and lost wages and then her job, because she needed to take her mum to hospital every 3 weeks for chemotherapy.  The grandmother whose grandchildren have been put in day-care, because she can no longer look after them on the days she needs to go to hospital for her chemotherapy.  Another daughter who said her elderly father was at the point of exhaustion from going to the hospital 4 times a month for 2 years, with his wife, who needed chemotherapy.  They had been married 60 years and he couldn’t let her face it alone.  Many of the stories we hear, are heartbreaking.

One patient asked for chemo@home when he was first told he would need chemotherapy.  The specialist refused.  His partner rang the chemo@home office from the hospital day-unit on the first day of his chemotherapy treatment and said "please, get us out of here".  For the next three weeks we worked our arses off to give him what he wanted, the choice of having his chemotherapy at home.  To their relief the next cycle of chemotherapy was done at home, but not before they had been put through the ringer about why they would choose this option.  We think what they did was incredible.  At the most vulnerable time in their lives, they found their voice and asserted their will to get what was important to them.  It is amazingly courageous, and we feel so humbled and privileged to have been able to help them get the care they wanted.

So, what does this all mean. It means the tides are turning. It means health services are about the patient.  It means the emotional well-being of patients matters. It means patients want to be able to choose where they receive their treatment.  It means patients have a voice and they are using it. 

Image result for toby hall st vincent'sLorna and I have just come back from an incredible and intensive 2-day health forum.  During the forum Toby Hall (Group CEO, St Vincent's Health Australia) spent well over half his presentation talking about people's homes being the hospitals of the future.  Health Insurance executives spoke about keeping patients out of hospital.  We had 20 one-on-one meetings with Health Service executives form Victoria, NSW, Queensland and Tasmania.  ALL 20 knew that chemotherapy at home would, within the next few years, become the norm.  They ALL agreed that giving patients choice about where they have their treatment was the right thing to do, and knew they would need to offer an in-hospital and an at-home service.  ALL want to further their discussions with us to explore how we can partner to make this happen.

The last 5-years may have felt like a David and Goliath struggle, but it now feels like Goliath is leaning down to David, hand out saying “let’s do this great thing together”.  And that is a really great outcome for those who matter most, PATIENTS!!

Julie
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