We are pleased to announce the launch of our new Fact Sheet for Local Professionals. The fact sheet includes information about CJD and prion disease, infection control, guidance on appropriate referrals and details of specialist support available. With huge thanks to Rachel Williams (National Prion Clinic), Terri Awe (National Care Team) and Libby Critchley (Renal Nurse Specialist) for their hard work and support in producing this Fact Sheet.
This fact sheet was born out of Libby’s experience, whose mum passed away with sCJD in 2023. Throughout their journey they experienced positive and negative aspects of care. As a daughter, Libby wanted to make a difference to other families journeys and help to make sure that local clinicians are adequately resourced to provide informed care and support to patients and families.As a Nurse Specialist, she felt that a fact sheet – incorporating patient perspectives – would be something she would personally value and refer back to regularly if she was supporting a patient with CJD. Libby approached the CJD Support Network in 2022 with this suggestion, and we felt that creating this resource in collaboration with Libby and the specialist nursing teams was something which fit seamlessly with the aims of our charity. We are so pleased and proud to be able to announce the launch of this fact sheet.
The fact sheet is available for professionals upon request from [email protected] and can also be shared with local professionals by the National Prion Clinic and National Care Team. If you would like to volunteer with the CJD Support Network, or have an idea that you would like to put forward, please don’t hesitate to contact [email protected].
