“The difference between getting self-management right and wrong is small but of massive practical importance” Dr Andrew McCulloch – Part Two
Striking the balance between empowering patients to better understand and manage their care needs, without over burdening them with misplaced responsibility, is a difficult and delicate process. One that requires thought and skill to be effective and sustainable:
Listen to service users
Feedback is an essential driver for any health or social care improvement, and the only way to truly know what someone wants from their care. To be useful it has to first be gathered using the appropriate methodology, asking the right questions of a given audience, in the right way. The findings from our work developing a tool looking at people’s experiences of living with sickle cell disease are due to be published shortly, but the qualitative research has already informed key regional service developments, such as creating a community support worker position in North West London (an area with a high population of people living with the condition). Such improvements could not have been made accurately without service user feedback to inform them.
Shared decision making
A shared decision making model enables people to have the highest sustainable quality of life possible. It also allows individuals to assume as much or as little control over their treatment, as they choose. Before a patient care plan has been set, a conversation is needed, about what they want and need from their treatment, and crucially, how much or little they want to be involved in delivering it. Making any assumptions in this area can be highly detrimental to treatment success. Some people are also simply not ready to self-care, preferring to let clinicians lead decisions. Stigmatising them or pressurising them to do more will only backfire in the long run.
Person centred patient education
Recent research shows that almost half of patients leave a doctor’s office not knowing what they were told or what they are supposed to do, often leaving them anxious and in some cases to disengaging with services. Educating patients and staff about service user needs is key to communicating care information in a way that is appropriate for and tailored to the individual.
Central and North West London NHS Foundation Trust, is one organisation taking an innovative approach in this area. At their Recovery & Wellbeing College they run a recovery through education programme, where the patients are essentially the students, and their core subject is learning how best to treat and take care of themselves.
The combination of receiving advice and information about their condition and effectively learning themselves, instills confidence and empowers people to be more self-reliant, defining what a “normal” life is for them, outside of hospital treatment.
Shared experience, and understanding how another person effectively manages and makes decision about their care are integral to the self-management agenda. For example, the recent launch of the first “TripAdvisor” style website for care homes, allows residents and relatives to give reviews of care homes and a star rating, allowing others to use this information to support choosing the right one for them. Outside of public forums, connecting with people in similar circumstance is not always easy, and ideally needs to be facilitated by the health service. A combination of increased funding and training for peer support organisations as well as advice on how to access such services, would enable and empower people to better manage their own care journey.
Patient-driven health information economy
Patient records are key to communication, care coordination and continuity. As patients attempt to and often want to manage their own health and conditions, the issue of easily accessing these records has increased in relevance and ignited conversations around patient-held records. Entrusting patients to carry their records themselves would ensure that their care history always goes wherever they do, both within the service and outside of it. Should they forget or become confused by certain treatment elements they would have easy access to the answers they need preventing health deterioration, crisis and lack of compliance.
A flexible approach
As much as self-management has a role to play in the care process, there are times when it is simply not a viable option – secondary and tertiary Dementia for example. Those that do choose to self-manage need to be supported to do so, with a solid treatment plan running in parallel with services. Treatment progress needs to be monitored and clinical services easily accessible, without long waiting times. 24 hour text messaging and phone lines are useful in this area. Using a basic recovery model ensures that the wants and needs of the patient are the central goal, regardless of the treatment plan chosen. Whether choosing to self-manage their treatment or to receive round the clock care, as long as outcomes are consistent and the patient is satisfied and getting what they want, the approach can work.