Background Increasing evidence illustrates improved healthcare outcomes and experiences when people are empowered through opportunity and consultation to actively shape their care (NHS England. The NHS Long Term Plan. 2019). The creation of patient-centred care quality indicators is a key dimension in designing and delivering a truly individualised high-quality service (Santana, Ahmed, Lorenzetti, et al. BMJ Open. 2019; 9(1):e023596). Involving patients and their families in co-designing and informing service delivery gives them a voice (NHS Improvement. Patient experience improvement framework. 2018). This model has demonstrated a positive impact as the process recognises what matters the most to them and their families (Healthcare Improvement Scotland. What matters to you? 2024).

Aim To implement and evaluate a new motor neurone disease (MND) service through development of patient-centred care quality indicators by consultation with patients, carers, and members of the MND multi-disciplinary team (MDT).

Methods Quality improvement methodology included:

• Systematic literature review.

• All patients and carers accessing the MND service based in the hospice, community and hospital clinic were offered interviews and questionnaires.

• All participating members of the MND MDT including doctors and therapists were offered interviews and questionnaires.

• Indicators incorporated into our Integrated Care Board service contract.

• Audit and benchmarking of the quality indicators we developed against MND NICE guidance (National Institute for Health and Clinical Excellence. Motor Neurone Disease: Quality standard. 2016).

Results 25 patients, 19 carers and the 14 members of the MND multi-disciplinary team were consulted in both interviews and questionnaires over a one-month period. Key themes were identified to develop six patient-centred care quality indicators with measurements to evaluate the MND service. Initial six-month audit of the service was evaluated against the patient-centred care quality indicators and has demonstrated 100% positive feedback and satisfaction from patients and their families.

Conclusion The creation of patient-centred care quality indicators through consultation and collaboration with patients and their families is a key dimension in designing and delivering a truly individualised high-quality service. Improved positive healthcare outcomes are demonstrated when service delivery recognises patients’ voices and what matters the most to them.