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The Robert Jones and Agnes Hunt Orthopaedic Hospital in Oswestry Accredited by ADC Program

The Robert Jones and Agnes Hunt Orthopaedic Hospital in Oswestry, Shropshire, UK, has been accredited as the third center under the Accredited Duchenne Centers (ADC) Program. With this, they are the first center in the UK to receive this status. They have received the accreditation for pediatric and adult care. This marks the end of the pilot phase of the ADC Program with the aim to achieve global uniform and up-to-date care for all people living with Duchenne Muscular Dystrophy (DMD).

The neuromuscular service is led by Prof. Tracey Willis, a Consultant Paediatric Neurologist with a specialty in neuromuscular disorders. Prof. Willis was trained by Prof. Rosaline Quinlivan, who was the previous lead of the center. Dr Richa Kulshrestha is a Pediatric Neurodisability Consultant with an interest in neuromuscular disorders.

This accreditation is a hallmark of adhering to internationally recognized guidelines for DMD care. Secondly, it signifies the center’s commitment to maintaining high standards and providing advanced treatments and comprehensive care to improve patient outcomes.


ADC Program visit

During the ADC Program visit on May 2nd and 3rd, the committee, consisting of Prof. Imelda de Groot (Program Leader), Prof. Nathalie Goemans (Chair of the ADC Advisory Board), and Dr. Karolína Podolská (WDO Board member and patient representative), was particularly impressed by the holistic approach the center offers. Dr. Karolína Podolská was positive about the visitation. “We were particularly impressed by the educational activities and materials designed to inform patients, families, schools and other stakeholders about crucial aspects of DMD care.”


Patient experience

Patients interviewed during the visitation described the team at The Robert Jones and Agnes Hunt Orthopaedic Hospital as highly approachable and easy to talk to, highlighting the center’s commitment to patient-centered care. A unique feature of the center is its collaboration with a palliative team led by Prof. Derek Willis. This ensures that patients receive compassionate and comprehensive care throughout their journey, addressing medical and emotional needs.


Accreditation for pediatric and adult care

Prof. Tracey Willis is grateful for the accreditation. “It has been a great privilege and honor to be selected for a visit as part of this ADC Program. We are a passionate team, and the accreditation process has confirmed the standards of care we set and excel in as a team and has also helped identify areas for improvement which we are committed to addressing, with the ultimate goal of trying to achieve excellence for our patients.”


ADC Program next steps

As this visitation concludes the ADC program pilot phase, finalizing standard operating procedures, questionnaires and interviews will help design this program for the upcoming years. The pilot phase was very valuable and helped identify areas of the program which need attention. With the support of the World Duchenne Organization and the ADC Advisory Board we are determined to draw conclusions from the pilot phase and implement minor changes.


About the ADC Program

The Accredited Duchenne Centers (ADC) Program, initiated by the World Duchenne Organization, aims to standardize and update care for all individuals with DMD globally. By accrediting centers that adhere to the latest care guidelines, the program supports and improves care standards worldwide.