Rethinking Health Care for Long-Term Illnesses
It is not uncommon for people suffering from long-term health conditions to be affected by more than one serious
illness. Many of these people are also socio-economically disadvantaged and contend with chaotic lives alongside their
chronic health problems.
In a multiple case study, Dr Helen Francis, who last week graduated with her Doctorate of Philosophy from Massey
University’s School of Nursing, followed 16 people with significant long-term conditions (LTCs) over approximately 18
months, alongside their primary care clinicians.
The patient stories in her study reveal complex, entangled lives marked by loss, poverty and daily challenges. “Patients
were exhausted and their needs were especially ill-matched with the self-management approach to care currently endorsed
and funded at policy and practice level. Clinicians needed to manoeuvre outside the model of service to compassionately
and pragmatically support the patients as best they could,” she says.
Her findings surfaced examples of care valued by both patients and clinicians that occurred outside the currently
endorsed self-management approach.
“For many of them, their lives are just chaos. Their health is not remotely a priority for many of them – not because
they don’t prioritise their health, but there is often so much other stuff going on. One woman in my study was really,
really sick, but she was also a caregiver for her brother, who was far more ill than she was. She couldn’t look after
her health because her priority was looking after her brother,” Dr Francis says.
“Another woman had had heart attacks, asthma, diabetes, arthritis, and more. Her daughter had really bad mental health
issues, so she took on six grandchildren aged from four to 16, so that’s the sort of lives a lot of people with
long-term health conditions are living. As health professionals we say, ‘go do some exercise and lose weight’, and
that’s just nonsense to them. There is no way they are going to even begin to do that, so what we are doing is making
them feel even more of a failure.”
The 55-year-old, who is originally from London but now lives in Napier, has worked in the Hastings health sector for the
past 10 years, and is an elected member of the Hawke’s Bay District Health Board.
She says the current self-management approach to health care, is problematic. “All the literature around the
self-management system is about ‘expert patients’ and ‘patients who can do it for
themselves’, and this particular group of people, with a number of long-term health conditions, they just can’t. We need
to think about what will help people meet their own goals. These are often not high aspirations, just feeling good and
having a better quality of life, things we often take for granted.”
Dr Francis says a lot of the work being done in the palliative care area is relevant to people suffering from several
LTCs. “While we aren’t talking about people who are actively dying, the ideas behind palliative care are very, very
relevant. Palliative care is not about dying. It’s about realising we aren’t going to cure these health conditions,
which is what these people are dealing with.”
She says health professionals are doing the best they can, but fundamentally the system isn’t working. “Our system is
set up so that when patients come to health centres, we have to set goals to allow them to get free visits and the like.
Inevitably these goals are about moving more, eating less etcetera. They come in every three months and often they have
actually got worse, they’ve put on weight or their conditions have deteriorated.
“The system makes them feel even worse. The doctors and nurses are trapped as well. They know the world the patients
live in, but making them do an eight-week course, two days a week and telling them they will get better, makes no sense
to these people. They might not have a car, or they have to look after children or another family member. The health
care we are offering them isn’t remotely meeting their needs. When they have all these other distractions, it just
doesn’t work,” she says.
She says her study found the health professionals are doing everything they can to work around the system. “Lots of
things they were doing were unofficial workarounds to get their patients the best care. Often it would be interpreting a
letter they got from the hospital, or calling the hospital on their behalf to advocate for them, and find out what is
going on with their care.
“It’s about understanding the barriers these people are facing. They are often living in such poverty, they are so
weary, tired and desperate, they don’t think about next week, let alone next year,” Dr Francis says.
She recently resigned from her role at the Hastings Health Centre, where she was a quality and performance manager for
10 years. “Ideally, in my dreams, I would find a role where I can help implement the idea of caring for these patients
in a different, more meaningful way. At the moment, it’s too rigid and there isn’t the funding, resource or time to
tackle things differently. I really hope my research might go some way to making people think differently about how we
approach this sector of the community.”
Dr Francis is married to Colin, and the couple have a 21-year-old daughter Rebecca. Dr Francis completed her PhD with
Massey University via distance. “I had done a Postgraduate Diploma in Business through Massey, so I knew the library was
really good, which is really important when you aren’t physically on the campus. I was also told you need a really great
supervisor, and I had heard so many good things about Professor Jenny Carryer and Dr Jill Wilkinson, from the School of
Nursing. They were so supportive, and helpful, and I was very lucky to have them as my supervisors.”
Dr Francis also holds a Bachelor of Science with first class honours from the University of Hertfordshire in the United
Kingdom, and a Master of Nursing from Deakin University in Australia, which she also did via distance.
ENDS