• Run by the Neuromuscular team at Great Ormond Street Hospital.
  • Aimed at improving the experience of boys with Muscular Dystrophy who are still ambulant (able to walk).
  • Focused on the care received at six-monthly follow up appointments/clinics.
  • The project was officially launched at the hospital in January 2013.

This project aimed to improve the experience of young boys with Muscular Dystrophy and their families. These patients attend a clinic which lasts several hours and involves multiple appointments in different areas of the hospital. Patients and their families travel long distances to attend this clinic and staff are aware that the day can be very tiring for the boys.

The existing pathway had been identified as being stressful for patients and their families as well as staff due to the complexity of the appointment and the deterioration of the patient's condition between clinics. The project aimed to better coordinate the pathway reducing associated stresses for patients, families and staff and improving communications.

Specific aims were to:

  • address the delay in sending out clinic letters following appointments and reduce the waiting time between appointments.
  • ensure all patients requiring a dietetics review and/or family care support were offered a same day appointment.

Ultimately, the project team wanted 100% of families and staff to rate coordination of appointments as good or very good.

The team designed a new pathway using the following interventions:

  • patient shadowing
  • patient and staff questionnaires
  • in-depth telephone interviews with parents and carers
  • parent and carer representation on the working group
  • focus groups
  • information leaflets to ensure all families knew how to provide feedback.

Further reading

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Patient and Family-Centred Care: practical tools to improve patient experience

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