Save Our Sons Duchenne Foundation Nurses Program

Perth Children’s Hospital – Exclusive Neuromuscular Nurse

The Save Our Sons Duchenne Foundation Nurses facilitate bringing clinical trials to Australia and coordinate Australian-based clinical trials for Duchenne and Becker muscular dystrophy.

Importantly, they also provide coordinated care for Duchenne and Becker families, thereby improving standards of care across Australia. The Nurses coordinate with Specialists to ensure that families attend all the necessary appointments in an efficient manner and at the recommended intervals, in turn reducing the number of times families are required to visit the hospital. This will ensure optimal care is provided and will reduce the level of stress that families endure.

The Nurses have solid knowledge of each patient’s history, and also offer significant support to families navigating the complicated and difficult journey of caring for a child with Duchenne or Becker muscular dystrophy.

The Nurses also provide specialist knowledge and experience with Duchenne and Becker muscular dystrophy to the multidisciplinary teams within hospitals.They also assist families to join the Australian Neuromuscular Disease Registry (ANMDR) to ensure critical and up-to-date data is available regarding the Duchenne and Becker population in Australia.

Save Our Sons are pleased to announce that the Board have decided to allocate funding of $150,000 over three years (Year 1 – $60,000; Year 2 – $50,000; and Year 3 – $40,000) towards a Level 2 Clinical Nurse- Neuromuscular – for the Perth Children’s Hospital.

The jointly funded position has been filled by an experienced Clinical Nurse who works in close partnership with the Clinical Lead of the Neuromuscular (NM) Service at Perth Children’s Hospital.

Perth Children’s Hospital hold weekly NM clinics.

Current Core responsibilities of the Neuromuscular Clinical Nurse include:

  • Full coordination/communication of the Multidisciplinary NM outpatient clinic/patient cohort;
  • Primary contact for all the NM patients and their families for any issues related to their health or social well-being;
  • Providing social, emotional and mental health support for all the NM patients starting with their first visit and continuing to provide this care with diagnosis and ongoing clinic reviews;
  • Providing education for all NM families, schools and community providers in relation to diagnosis, management and ongoing care;
  • Providing support for all the hospitalised NM paediatric patients in Western Australia in the form of daily visits, updating clinical care, crisis management, social support;
  • Liaising with Hospital school services and social worker for all inpatient patients;
  • Ensuring optimal care co-ordination, implementing and strict following of the recommended standards of care for every boy with DMD and all children with NM diseases;
  • Implementing a multi-disciplinary approach for optimal and world class management of all NM patients;
  • Coordination of Multidisciplinary team meetings to assist with complex management decisions and situations;
  • Co-coordinating the clinic list to ensure maximum outcome in the least number of visits to the hospital for every single NM patient; and,
  • Assisting in all clinical trials related work to ensure availability of most appropriate trials to all eligible patients, with this work including database creation for all NM patients with their genetic diagnosis, ensuring written report of genetic diagnosis for all patients is available and the patient is as trial ready as possible, attending investigator meetings and teleconsultations with pharmaceutical companies when possible. The involvement in clinical trials also includes liaising with other hospitals in Australia to consider enrollment where possible for trials which WA is not able to provide.

The funding provided by Save Our Sons will further enable an improvement in the care and services for NM patients/families especially their DMD boys. This would be difficult to achieve without the funding and collaboration from Save Our Sons. The fact that Perth Children’s Hospital are achieving International “standards of care” especially for their Duchenne community has resulted in improved clinical outcomes and improved quality/quantity of life.

This funding by Save Our Sons will also contribute to the establishment and implementation of clinical trials for Western Australia’s Duchenne and Becker community.

The Hospital will also be focusing its’ efforts on:

  • Research/ data collection;
  • NM Database maintenance/ upgrade;
  • NM Nurse led clinics;
  • Cardiac Management;
  • Endocrine management; and,

Other essential research projects identified for the NM CN include:

  • A Consumer feedback audit regarding the NM service at PCH, as the best way for them to gauge how families feel about the services and guides them to make decisions and changes if appropriate; and,
  • Evaluating the burden of care on families: although there are many well published audits and data into this subject amongst NM patient cohorts, for the Hospital as a service to look at this specifically for their DMD cohort would give them a valuable local insight into the emotional, social, financial and physical implications.

Save Our Sons are proud to support our Duchenne and Becker community in Western Australia through this important and critical program.