Calls for a system rethink

The health system is not helping, but harming some seriously unwell Kiwis, and needs an attitude overhaul to make it patientfriendly, experts say.

Researcher Dr Helen Francis followed the journey of 16 patients with more than one serious longterm health condition, for five years. She found many were faced with frustrating obstacles in healthcare that became insurmountable burdens.

She was awarded her doctorate from Massey University’s School of Nursing in Manawatu¯ late last year for the study.

‘‘The families I talked to had all sorts of awful things going on in their lives - poverty and other disadvantages. Their health never really gets to the top of their pile of priorities and we want them to self-manage and look after themselves. The care we offer does not meet their needs as well as it could.’’

Many good doctors and nurses in the primary healthcare system were going above and beyond to help, but programmes available were too rigid and ‘‘tick-box’’ to adapt to difficult circumstances, she said.

‘‘There’s a lot of stuff that’s a waste of everybody’s time.

‘‘We’re telling them to go on a course, go for a walk or eat better, or quit smoking, but a lot of the patients I saw were exhausted, it’s one more thing. It’s just not as easy as that.

‘‘It actually makes the patient feel worse, they feel like a failure because they are not achieving the ideal outcomes, and then they have to deal with a health system that berates them.’’

One woman with a heart condition, asthma, diabetes, arthritis and other health conditions was also working as a carer, as well as supporting a seriously unwell daughter, and had become the main caregiver for five grandchildren.

Another who was also very sick was caring for an even more unwell brother who could not be left alone.

‘‘She was supposed to go to the hospital for a respiratory course two times a week, but she couldn’t afford the transport, and couldn’t leave her brother.

‘‘The doctor said ‘well if you don’t care about your health, then that’s up to you’.’’

‘‘The way to manoeuvre through the system is a bit of a minefield, and it’s not always clear what you need to do next. People are put down and don’t feel they can stand up for themselves.’’

Customers would not expect this sort of run-around from retailers, and despite the health system being a public service patients should not have to put up with it either, Francis said.

Francis said it was difficult for patients with multiple serious conditions to make meaningful gains because each condition affected the body’s ability to cope with the others. The best approach was a palliative care approach, however, in New Zealand palliative care was typically reserved for people whose conditions are terminal, or who have cancer, she said.

Dunedin School of Medicine’s Dr Sarah Derrett said she ‘‘wholeheartedly supports’’ Francis’ call for change.

‘‘I do a lot of work looking at patient experiences, and we constantly hear of barriers to accessing health, including significant financial barriers in primary care practices that are prohibitive for many.

‘‘There needs to be a greater focus on placing the patient and their families at the centre of the focus, rather than the exterior,’’ Derrett said.