SWNODN - Get Involved (Patients & Families)

To enable us to deliver our Mission Statement, we are committed to ensuring that public and patient voices are at the heart of shaping neuromuscular services. By using the term “patients and public voice (PPV) partners” we include service users, carers and relatives of patients, and the general public. Therefore, if you would like to become a PPV Partner, or would just like to hear about service developments in your area email swneuromuscularodn@nbt.nhs.uk to register your interest.

There are a number of ways to get involved.  Our Network Board currently includes PPV Partners, but we also need more PPV Partners for our PPV Advisory Group.  This may involve attending some meetings a few times a year for a specific project, or simply just reading and commenting on a document the Network has produced.  If you would like to find out more about this, please contact the Network Office.

We are always keen to hear about your experiences of NHS services; this could be in your GP practice, in the community or in a hospital. 

Whether it is regarding your neuromuscular condition, a recent visit to an outpatient clinic or an in-patient stay; whether positive or negative – we want to hear from you! Email swneuromuscularodn@nbt.nhs.uk to let us know about your experience and make sure you are registered with the Network so you receive our yearly Patient Satisfaction Questionnaire about the services you receive.