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P-226 One stop duchenne muscular dystrophy clinic; a unique NHS – young adult hospice collaboration
  1. Amanda Brain and
  2. Carol Ransome
  1. Naomi House and Jacksplace, Winchester, UK


Background The driver for creating an integrated clinic came from patient feedback highlighting a lack of co-ordinated care across health care services, inappropriately equipped environments and multiple outpatient appointments. Studies have shown ‘both quality of life and survival are better in neuromuscular populations treated in multidisciplinary clinics’ (Paganoni, Nicholson, Leigh et al., 2017).

Aims To create a one stop multi-speciality/multidisciplinary Duchenne Muscular Dystrophy (DMD) clinic working across the boundaries of the NHS and non-statutory services. To provide young men with an opportunity to engage with palliative care services as part of their holistic care.

Methods The professionals visited each other’s speciality areas/clinics and commenced a regular meeting to discuss patients in September 2019, the services then commenced a pilot clinic by reorganising existing commitments. The pilot commenced in January 2020 with patient feedback captured post clinic.

Results Despite the challenges of COVID-19, we have successfully run five clinics at Jacksplace to date reviewing 22 patients; 18 in person (four virtually). Each patient has been seen by a neuromuscular consultant, cardiologist, DMD co-ordinator, physio, transition CNS and palliative medicine associate specialist. The service continues to develop and now offers echocardiograms within the clinic.

The patient feedback is universally in favour of continuing in this format. All commented on the improved facilities, ease of access and that it is ‘wonderful to see several professionals on the same day’ .

Clinicians highlighted the benefit of this model of care leading to strong communication between professions, saving time and an ability to develop co-ordinated individual plans of care with the young men.

Conclusion Collaboration between professionals and organisations has allowed us to deliver a well co-ordinated, holistic service. It has facilitated the integration of palliative care allowing relationships to build between the multi-professional team and the young men creating a safe environment where conversations about advance care planning can become a normal part of their care.

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