Acquiring a long-term health condition is an identity busting experience. A biographical disruption and re-routing of a life’s sat-nav system. A health condition can arrive like an unexpected meteor smashing into you, embedding itself in who you thought you were.
Or, like leaking water, health conditions can gently trickle in and dissipate, just to show themselves unexpectedly again. Long-term health conditions tend to be untreatable, uncertain, unexpected, unkind, unforgiving, unclear, uncompromising, understated, uncontrollable, unforgettable…
There are more than seventy groups of long-term health conditions. They are incurable either managed through drugs or other types of treatment including receiving no treatment at all. Partly associated with population demographics and increasing prevalence of conditions as we age.
Fifteen million people in England are affected by at least one long-term health condition, estimated to account for 70% of NHS and social care spending (Department of Health 2012 & 2013). The number of people affected by more than one condition is forecast to rise from 1.9 (2008) to 2.9 million (2018) (Department of Health 2012). Many people affected by conditions are employed undertaking great work, or are at home but could return to the workplace. Particularly prevalent conditions include mental health problems such as stress, anxiety and depression amongst condition peers of musculoskeletal, neurological, rheumatic, cardiovascular, respiratory, endocrine, digestive disorders etc. Sometimes conditions come in twos, threes, four or more with mental health risks more likely when there is an existing condition.
Although often described as unwell, impaired, less able (or disabled even) people affected by health conditions are amazing. Adaptable and resourceful, people are often motivated and have the capability to act as their own GP, specialist consultant, nurse and occupational health advisor. It is well understood that patients become their own experts over time.
People with health conditions regularly cope, respond to and manage symptoms and relapses, follow treatment programmes and care whilst making decisions about if and when they need further support. This is away from medical care most of the time.
These behaviours are self-managing ones with people taking control of the things they can, in a situation where in reality they may have little control. Self-management is underpinned by extraordinary motivation, activation, adaption, energy, self-belief and resilience in the face of cruel ambiguity, loss and disruption that is associated with long-term conditions. Now for me, that’s superhuman stuff.
The self-health manager
In a nut shell, self-management is a term used to describe anything people do to take care of and manage a health condition themselves i.e. taking medication, maintaining healthy lifestyle behaviour, getting adequate rest etc. People with health conditions who self-manage are what I like to call ‘self-health managers’. Brilliantly, self-management has been linked to better health outcomes for people with health conditions and greater confidence.
Confidence has been linked to better self-management and health outcomes.
Interestingly for employers, supported self-management has been found to have a positive effect on self-management behaviour resulting in better individual health and confidence. Self-management support is concerned with the care and encouragement provided to people to manage their health i.e. emotional support like asking someone how they are and providing reassurance.
So, if we need people to be able to do our jobs well, if more people are being diagnosed with long-term health conditions, if we are working for longer and health risks rise with age, if work is good for people and, if we know that self-management support can result in better health outcomes (yet the NHS is still underfunded to provide it) – what are we as employers doing to support employee self-management? How are we carving a role for ourselves in broader healthcare models? It seems that the best possible health for our people could be up for grabs.
Employers are rightly concerned about workplace health and wellbeing often taking a mainly preventative or medicinal approach to disease. Now we know that self-management is good for people and is even better when supported, I think we should undertake some reflection.
What is our approach when a health condition cannot be prevented, is chronic, excluded from insured benefit cover, where there is no treatment, will degenerate but nonetheless requires careful maintenance? Is being at work good for our people in those circumstances or do our policies and practices encourage (or enforce) absence or worse, exit from the job market? Are we led mainly by Equality Act provisions or care and compassion? Do we know what actions people are taking (or not) for themselves to self-manage their health when they are in our care in work? How can and do we support those activities and are we really empowering people to undertake the behaviours that are good for them in work? Critically, do we take the approach that people are the experts of their own health or, do we value and trust the opinions of Drs and medical professionals over the individual? In fact, who do we consider is the expert of our employees’ health – them or us?
In a recent Loughborough University research study examining the workplace self-management support needs of working people with long-term health conditions, employees and employers shared their experiences. Some employees were unable to self-manage their health at work because they did not feel able to talk openly about a diagnosis, fearing scrutiny, stigma and misunderstanding. Some conditions were perceived to carry particularly harsh social stigma.
Others felt able to talk about and manage their health openly but ultimately believed that their health made their job vulnerable. Strong cultural cues were also significant for some, making them feel special or weaker than others. Most had found a formal work process of adjustments to enable self-management unnecessary, unsupportive, risk focused and impersonal.
Those with a more positive attitude to self-management valued and received close peer and manager support, care, compassion and trust. Broadly, employers were unfamiliar with the concept of self-management for people with long-term health conditions, despite its importance in primary healthcare models and were unaware of the specific health behaviours people undertake for their conditions.
Some shared honest frustrations about workplace health management, reasonableness, the dilemma of balancing work demands with individual needs with mention of sympathy running out. But importantly a view and appetite were shared by employers and employees that more could be done in work to support people in managing their health conditions themselves.
We must not forget to celebrate that we are living for longer but with the prevalence of long-term health conditions rising and working years extended, the quality of working lives for those with long-term health conditions needs to improve.
Supporting self-management has the potential to improve and lengthen people’s working lives, boosting mental health and organisational productivity. With healthcare services stretched and funding challenged, the workplace is an optimal place to target, support and empower people to manage their health in a way that is best for them.
This does not necessarily entail the employer doing everything and the employee consuming provided benefits and services. We could start by caring to learn about employee health self-management behaviours by partnering with and understanding what people need to do for themselves. We could think about identifying and removing unnecessary barriers that disempower the employee (and patient) in work.
As has been inferred before, what is it that makes long-term health conditions and disabilities special at work – the condition itself or is this really about our organisational and sregulatory structures, ways of working and how we do things around here?
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