This article is written by two carers who have significant experience of caring for loved ones in inpatient mental health services, and who work with national and local mental health organisations to improve standards of care.
Carers play a hugely important role in supporting the care and recovery of their loved ones, especially during times of serious mental illness when inpatient care is required. And yet, too frequently, the voice of carers isn’t heard to any appreciable or meaningful degree.
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The Triangle of Care was designed to unite patients, staff and carers in a collaborative partnership, but clinical teams often struggle to keep carers involved. Our combined experience of caring for sons — who have collectively spent 24 years navigating inpatient services across over 12 different mental health hospitals, with stays lasting from several months to many years — gives us clear insight into what works and what needs to improve. The Triangle of Care can easily collapse if any one element becomes fragile. We propose five critical areas that, if addressed, would significantly strengthen the alliance between patients, staff and carers.
Recognising the value of carers
As carers, we understand our loved ones better than anyone else but often feel our insights are overlooked. We’re not experts in prescribing medication but we know the medications that cause adverse reactions. We may not have clinical training or expertise in running wards, but we can spot early signs of relapse and we know what will help them calm down. When we’re involved, we feel valued and, more importantly, the care our loved ones receive is of a higher quality.
Keeping connected
Staying informed about our loved ones’ progress has been challenging. We would phone the ward three times a day just to grasp basic details like whether they’d been sleeping and eating. Sometimes you’d stay in all day waiting for a promised call-back, which never came. The destabilising effect of this is enormous. We know that staff are busy but there must be better ways for them to stay informed and able to share regular updates. An unprompted phone call to provide an update can be truly transformative; proactive communication should be encouraged. Leaning on technology to help gather objective patient data would also help.
Caring for the carers
Although things are improving, we’ve frequently found ourselves feeling unsupported, isolated and even judged within the mental health care system. Having our own wellbeing prioritised and being supported by empathetic staff would be invaluable during such difficult times. The introduction of Carer Champions has been pivotal in addressing these concerns; their focus on both the patients and the carers has helped to alleviate much of our anxiety.
Protecting and promoting patients’ physical health
In our experiences, the physical health of patients in mental health hospitals often takes a back seat. One of our sons gained three stone in just one year due to medication side effects, putting him at high risk of diabetes, stroke and heart attack. A non-smoker before admission, one took up smoking just to get more time outside. We’re concerned about the long-term implications of these issues and would like to see services take a whole-health approach to care. Initiatives like playtime with therapy dogs have worked wonders in the past.
Understanding the baseline
It can be easy for healthcare staff to lose sight of the person behind the diagnosis. But true recovery extends beyond symptom management; it encompasses a return to a fulfilling life beyond the illness. That’s why we appreciate the importance of understanding the baseline — who our loved ones were before their illness took hold. By seeing videos or photos, or simply listening to stories about our loved ones before they became unwell, staff could gain invaluable insights to inform more personalised care.
The essence of the Triangle of Care lies in asking, “How would I want my loved one to be cared for?” Embracing this mindset fosters empathy, compassion and partnership, enhancing the patient experience and honouring the pivotal role of carers in mental health care.
If you care for a loved one with a serious mental illness and are interested in joining Oxehealth’s group of experts by experience, click here to get in touch.
