Stakeholders & Beneficiaries

NEMO exists to take care of patients with neuromuscular diseases and their families. They are frequently grouped in family associations. The team of doctors, specialists, nurses and the management are all devoted to putting the patients at the centre of the treatment / care. The city of Messina is talso an important community for Nemo in terms of local support, because the city is small, so the Centre is more representative within that context and all the community is involved in the project. When patients die, the family raise donations for the Centre, and all of the persons involved participating in all the stages, even in the death moment. Professionals also mention ASL – the local public healthcare institution, but maybe even more important are the suppliers/home care providers, that understand the functioning and the bureaucracy to which they are subject to and are flexible in efficiently providing Nemo with necessary supplies.

Co-creation process

Co-creation is taking place in all three phases: planning, structuring and service delivery. Not yet in the part when patients go home (domicile phase), as the Centre is not completely well structured for that yet. According to patients, value is created in both the design and the delivery of services, as Nemo works, in co-creation, co-production with them, on innovation, listening to their needs and treating them with dignity. The importance of the families’ integral participation in the process is highlighted in the professionals’ testimonial as well. All stakeholders also agree on the evaluation of services, as it allows the professionals to redesign and adapt their service, which do not exist separately, but it is a result of all phases in which the patient is present.

Results, Outcomes & Impacts

The patients and families are all very satisfied with the non-standardised, or individualised, care model applied in Nemo. They rate each professional they meet during their treatment on a scale from 1 to 7 as follows: nurse coach: 6,71; physiotherapist: 6,65; nurse: 6,76; speech therapist: 6,69; doctor: 6,75. According to page 21 of the CSS report, their perception of the treatment received from their arrival through their stay in Nemo’s facilities is as follows: possibility of accessing Nemo 24/7: 6,69; respect to their privacy: 6,67; their perception of being treated as a person, and not just as a patient: 6,60; respect and approach regarding their religious beliefs: 6,59; dedicated spaces to leisure time (recreation, tv, games): 6,56.

Challenges & Bottlenecks

In spite of the unarguable evidence collected in the different fieldwork approaches regarding value creation, the question of value destruction was also brought up by some of the involved parts. Nurse coach brought up the risk from the part of healthcare professionals of being too involved in their jobs and ultimately “loosing” their sense of personal life. Also, the “excess” of care can highlight a consequence of value destruction for the patients as they could expect too much care and forget that they have a brute, degenerative pathology that needs an active role from them too to be fought. Political relations must be carefully managed too, otherwise a wrong move can lead to value destruction, like in the nonprofit world, where egoism of its actors can sometimes lead to conflicts and disruption, or in the social media world, with the propagation of various news, which can generate conflicts and disruption in the value creation process. Finally, the risk of creating excessively high expectations and not delivering what patients expect, i.e. the cure, because it has not yet been found for neuromuscular diseases, also represents a big challenge.

Transferability & Replicability

The model of the nurse coach is already inspired from something that is well-known in the U.S. Model. Also, the methodologies is applied in four different clinical facilities throughout Italy. So, the clinical medical concept it not related to any very specific, local context and can be replicated or transferred.

Success Factors

Creating a symbiosis among all the stakeholders is what makes the individualised care system work: patients must be aware and feel confident towards the multidisciplinary team; healthcare professionals must carry certain types of value (respect, dignity, etc.) not only in their professional life but also in their personal one to be able to use them with the patients; family associations play a crucial supporting role (financially, emotionally, in research); the supplier/home care providers, that understand the functioning and the bureaucracy to which they are subject to and are flexible in efficiently providing Nemo with necessary supplies, are facilitators; the local health public institutions need to be involved as well; and the citizens and communities are key too. All stakeholders work hand in hand towards the same goal, i.e. allowing people with neuromuscular diseases to not only survive but actually live quality lives.

Lessons learned

Evaluations are critical to constantly improve the services and keep as close as possible to the patients’ needs. Through constant monitoring of how much they offer to every patient, they can improve the answers to treatment needs. Based on this principle, they have developed a system for evaluating the satisfaction of patients accessing the services, based on their perception of the care/operating model. In concrete, Nemo has developed a customer satisfaction survey which is the result of a multidisciplinary work, through which the professionals of Nemo have expressed their point of view on the issues to be evaluated. For the first time, topics such as the respect for the individual and his/her choices, the perception of being ‘at the center of care’, welcoming to the patient’s family nucleus, were studied. This system also allows for the healthcare professional to redesign their role based on the indicators that are measured not only by the patients, but also by the public healthcare system.