Quality is, rightly so, something every professional and organization aspires to and it is a key driving force within health care. The NHS defines quality in three parts:
- Care that is clinically effective – not just in the eyes of clinicians but in the eyes of patients themselves;
- Care that is safe; and,
- Care that provides as positive an experience for patients as possible.
(Taken from the NHS England website)
So what does quality mean when we (patients and professionals) think about self-management support?
To take the first point about care being effective, I’m pleased that the NHS acknowledges this includes ‘from a patient perspective’, but there are many non-clinical elements of effectiveness for self-management support – are we capturing them? Evidence plays an important role in effectiveness – it is linked to outcomes, and for self-management these tend to be considered (with varying importance, depending how embedded within the clinical medical model you are) as: individual’s self-efficacy and confidence in their self-management; behavior changes; clinical and quality of life outcomes; and wider changes in their interactions with the healthcare system (like A&E and other service usage). Through research and evaluation, we are learning what is effective when it comes to self-management support, but as I explored in a previous blog, are we looking at the right kind of evidence to determine effectiveness? The key types of interventions that make self-management support effective are included in the recent Health Foundation report, Person Centered Care: From Ideas to Action.
The key enabling tools, motivational interviewing, goal-setting, problem solving and agenda setting, have to be applied in an effective way. For people with long term conditions like me, this means support needs to be able to flex to reflect our health conditions, health literacy and ethnicity or cultural background. This requires trained people with a good understanding of self-management, whether that is gained from personal experience or otherwise, and structured support.
Secondly, safety is important to address, because often it can be a concern of clinicians early on in their journey of supporting people to self-manage. Some fears around self-management are built on the assumption that patients will then unilaterally decide to take or change medications, or suddenly start exercising at inappropriate levels. Self-management courses minimize the risk and challenges of this, where the non-clinical skills are emphasized, and through ensuring behaviour changes around medications and exercise for example are checked with the relevant healthcare professionals.
‘Safety’ fears are relevant for people with conditions themselves too, although we wouldn’t articulate them as ‘safety’: being cut off from NHS services; trying to understand complex health information; and doing something wrong. Our fears about self-management reflect the fact it is often very different from experiences with traditional NHS services. Reassuring patients and clinicians with proven and recognized quality services and programmes is essential.
Positive experiences of self-management support can have a direct impact on how likely we are as people with long term conditions to continue to adopt self-management behaviors. A poor experience at a course or working with a coach, or being supported in any other way can harm our progression along our own self-management journey. The experience around support has to take into account where we are on our journey, our fears, and bring in key tools like normalization (“that can be a common feeling people have when living with a health condition”) and affirmation (acknowledging the things we are already doing to manage our health). For those of us who are supported to self-manage through group courses, the experience of meeting others with similar conditions and the social learning environment are key positive parts that we feedback on. But these group settings need appropriate management. This positive experience of self-management also needs to correlate to our other interactions with the healthcare system. If our learning and support means we feel more empowered and in control, that can be quickly undermined by an encounter with a clinician who doesn’t support this approach. To manage the risk of this, good self-management support programmes should support both walls of the house of care through training, with engaged and informed patients and clinicians committed to partnership working with their patients. Engaged, activated and informed clincians need to be part of the self-management support ‘package’ we need for a positive experience.
Although self-management may be perceived as wishy-washy by some, it is rooted in evidence and good practice. Those providing it have just the same responsibility to adhere to quality measures as those providing any other form of care to people within our healthcare system. QISMET for example have developed standards that encompass all of the points above – registrations and certification against those standards is central to ensuring quality across the self-management field, and helping it get taken seriously and then commissioned.
Quality is the universal language of health care (professionals, commissioners and managers), so without getting subsumed into the medical model, we need to be able to talk openly about what quality in self-management means and how we can ensure that is delivered consistently.