Keeping as healthy as possible is a lifetime’s work. From everyday preventative behaviours like cleaning our teeth, to more complex tasks like managing long term health conditions, self care is the default health system.
Yet from the formal health system’s perspective, self care largely goes unnoticed – it’s only when self care strategies haven’t been successful that the NHS kicks in.
The Self Care Forum has been drawing our attention to self care for many years and has helpfully described three contexts where it’s particularly important:
- Self care for minor ailments
- Self management of long term conditions
It’s the work of self managing long term conditions(LTCs) that, in particular, goes unnoticed.
Take Peter, for instance. He lives with LTCs and describes himself as the ‘project manager’ in his own life.
To manage his conditions, he has a list of tasks that he needs to fulfil daily. Sometimes he manages those tasks well, while on other days he manages less well.
Some tasks are purely medical, like taking his medication to help the pain, but most are to do with managing the impact of the conditions on his everyday life.
It’s these adjustments that take time and effort. While some of the adjustments are practical, many require a different sort of work – the psychological work of adapting to a changing role in life that is an inevitable consequence of living with LTCs.
To help him with this work, Peter hasn’t until recently relied on the health service. However, a few months ago he spoke with a social prescribing link worker and as the pandemic restrictions have lifted, Peter has become more involved in a local gardening group where he has already met people like him who also live with arthritis.
Until recently, the health system itself has tended to focus on people like Peter’s individual conditions and the medical management of those conditions. This is important of course, but unless we acknowledge that people who live with LTCs are the default care system – the project managers – we risk forgetting that our job in formal healthcare is to support them in their role. And forgetting that can mean unintentionally undermining them, disempowering them, not providing appropriate support for them and/or over-burdening them.
This idea of burden is particularly important. Living with a LTC is in itself a burden and living with multiple LTCs means multiple burdens. As clinicians we can unwittingly add to these burdens in our quest to ensure that each LTC is optimally medically managed – so patients end up having to take time off work in order to attend multiple medical appointments, spend time chasing test results, or waiting for appointments, results, opinions, treatments – the list goes on.
Asking people living with LTCs (particularly those living with multiple LTCs) not just about the medical management of their conditions, but about the impact of the conditions on their everyday lives, means we can provide the support they need to help manage this impact- support which is becoming more and more readily available in primary care networks due to the ever-increasing numbers of health and wellbeing coaches, care co-ordinators and social prescribing link workers.
These new roles in primary care don’t just help people manage the impact of living with LTCs. What has become clear is that as we develop confidence in managing the impact of LTCs on our wellbeing, we can begin to pay more attention to the management of the LTC itself, leading to an overall improvement in quality of life (as well as an overall decrease in our use of primary and secondary care). It’s a win-win!
And perhaps more importantly, think about how to provide more support for people with LTCs to confidently self manage for life. For them, every week is self care week.