As part of their clinical pathway, patients will see one of our specialist nurses here at the John Walton Muscular Dystrophy Research Centre.
Our specialist nurses work closely with patients, families, other agencies and medical staff involved in care. This involves many responsibilities including being present and offering support at a new diagnosis consultation, undertaking home visits to support a family, supporting patients in school and work environments, advising and facilitating genetic testing and counselling, including reproductive advice, talking to patients about the latest research into their condition and how they might become involved, taking blood and other samples and, most importantly, providing ongoing support to patients and their families for the rest of their lives.
Two weeks from a diagnosis our specialist nurse will get in touch and arrange an appointment with you to come and see you at home for further discussion and to answer questions you may still have. If the patient is a child or young adult the specialist nurse will also visit the school.