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When Health Care is Not About the Patient

Have you ever believed in something, something you thought everyone else believed in as well, only to find out it wasn’t the truth?

Just after we started chemo@home a very high-up executive said to us during a meeting, ‘it’s not about the patients, don’t bring emotion into this.’

It was the first time, but definitely not the last, that such a jaw dropping statement was said to us.

 

We 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 and their treatment is what matters the most.

To find out that there were health managers that put their concerns above patients was mind-blowing. You may be wondering what these concerns are:

  • The emphasis placed on a health services “activity”
  • The number of staff they employ
  • The size of the budget they hold
  • They amount of money they are bringing in annually

Threaten these in any way (like we may have), be prepared to be more than just a little disliked for your trouble. Don’t get me wrong, these are all valuable concerns, but not above a patients’ wellbeing and their concerns.

 

The recent Medibank private ads featuring chemo@home has lifted the lid on the availability of our service. In the states where we have more recently started up (Adelaide, Melbourne and Sydney) this has resulted in an overwhelmingly enthusiastic response.

However, in Perth, where we have been an established service for over six years, there is nothing short of outrage.

Patients and their families are furious and disappointed that our service has been available for so long and they were not informed or given a choice about where they received their treatment.

 

A daughter, who had to take her mum to chemotherapy every three weeks, spending $60,000 in travel, parking and lost wages.

A grandmother, who’s grandchildren are now in day-care because she needs to go into hospital on the days she cares for them.

A tired husband on the point of exhaustion after taking his sick wife to hospital four times a month for two years.

 

These stories are all heartbreaking, and they are also all avoidable.

 

We had a patient who requested chemo@home when he was first told he needed chemotherapy. The specialist refused. His partner rang the chemo@home office the next day and said “please get us out of here.”

For the next three weeks we worked tirelessly to give the patient what he wanted, the choice of having chemotherapy at home. To their relief the next cycle was completed at home, but not before they had been through the ringer about why they had chosen that 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 use it. We feel incredibly privileged and humbled to have been able to give them the type of care that 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 wellbeing of patients matters. It means patients have a voice and they are starting to use it.

The last five years may have felt like a David and Goliath struggle, but now it feels like Goliath is leaning down to David, hand out, and saying ‘lets do this thing together.’

And that is the best outcome for those who matter the most, the patients.

 

Julie