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Rethinking Health Care for Long-Term Illnesses

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.


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