Support we can offer – National CJD NHS Nursing Service

Timely Access to Care Planning and Interventions
Our team respond rapidly to new cases, helping to plan care and offer specialist advice early in the disease course.
Support for Immediate Families
As cognitive function can decline quickly, we take time to understand and support family dynamics, ensuring patient wishes and their needs are recognised and met.
Build Strong Relationships
Early contact allows us to build rapport and establish trust with the patient and family.
Coordinate with Local Services
We work hard to build local connections and link into local health and social care services, helping families access the support they require.
Raise Awareness and Make Contact
We proactively make ourselves known to local services and also the general public. Our “be seen approach” allows us to build a platform of engagement for raising the profile of CJD and supporting early diagnosis and myth busting opportunities.
Address Environmental Factors
Home and care environments can greatly affect quality of life. We assess and advise on improvements to suit the individual’s needs. And helps throughout the journey for additional support to meet the needs of the patient.
Manage Complex Symptoms through an MDT Approach
We support symptom management through close collaboration with multi-disciplinary teams, ensuring communication is consistent and care is aligned.
Educate and Train Healthcare Professionals
Offer training and advice to GPs, palliative teams, nurses, and care teams to help them understand and manage this rare condition. to support comfort and quality of life. It can meet an identified urgent need that may not be fulfilled through standard NHS services, ensuring responsive and compassionate care when it’s needed most.
National CJD Care Fund Management
The CJD Care Fund allows urgent access to essential equipment and care provisions when the usual NHS routes fail. This is still NHS funding but is solely ring fenced for CJD patients and supports early discharge, patient safety and quality of life.