For individuals and families affected by Creutzfeldt-Jakob Disease (CJD) and related prion diseases, navigating care and financial support can be overwhelming. Here, we share information on two key funding sources available to help support the needs of our community: the National CJD Care Fund and the CJD Support Network Care Grants. Below is a guide to these funds, how they can help, and how to apply.
What is the National CJD Care Fund?
The National CJD Care Fund is a specialist NHS fund dedicated to supporting individuals living with and dying from CJD. Established by the Department of Health & NHS England, this fund helps bridge gaps in NHS funding, ensuring that every CJD patient has access to the necessary equipment and provisions to improve their quality of life.
When is the National CJD Care Fund awarded?
The fund is awarded when standard NHS routes are unable to meet the patient’s needs. This may be due to a lack of disease knowledge among healthcare providers or delays in acquiring essential equipment.
Who manages the National CJD Care Fund?
The fund is managed by the National Nursing Service, based at NHS Lothian in Edinburgh. The National Nursing Team works closely with patients and their loved ones to assess and distribute funding as needed to improve patient safety, quality of life, and overall care experiences.
Who is eligible for the National CJD Care Fund?
Despite being based in Scotland, the National Nursing Service provides support to all UK patients with a confirmed diagnosis of CJD. Patients can access this fund through referral by a healthcare professional or by self-referral to the National Nursing Team. A Specialist Nurse will be appointed to assist with ongoing care planning and access to necessary funding.
How to apply for the National CJD Care Fund?
Applications can be submitted by any healthcare professional involved in the patient’s care, or patients can contact the National Nursing Team directly. The National Prion Clinic in London is also familiar with the fund and may apply on behalf of shared patients.
A message from the National Nursing Service team: Navigating care and funding processes can be overwhelming, but the National Nursing Service is here to guide you. Your appointed Specialist Nurse has expert knowledge of UK funding sources and will work to ensure your care needs are met as smoothly as possible.
What are the CJD Support Network Care Grants?
The CJD Support Network Care Grants provide financial assistance to individuals and families experiencing financial hardship due to the costs associated with CJD care. These individual grants offer up to £500 to help cover essential expenses not funded by statutory services. The grants are made possible entirely through the generosity of community fundraising
When is the CJD Support Network Care Grant awarded?
The grant is available when financial hardship arises due to care-related expenses that are not covered by statutory sources such as the NHS, local authorities, or the National CJD Care Fund.
Who manages the CJD Support Network Care Grants?
The CJD Support Network, a UK charity supporting those affected by CJD and prion diseases, manages and distributes the grants. Each application is reviewed by the charity’s Management Committee to ensure fairness and transparency.
Who is eligible for the CJD Support Network Care Grants?
The grants are available to UK patients with a symptomatic diagnosis of CJD or a related prion disease. Applicants must demonstrate financial hardship and a need for care-related support that is not covered by other funding sources.
How to apply for the CJD Support Network Care Grants?
Applications are typically submitted through pre-approved ‘Referral Partners,’ including clinicians from specialist prion disease services in the UK. Those interested in applying can contact us for more information.
A message from the CJD Support Network: Our Care Grants are intended to provide some relief and support quality of life in what is an incredibly challenging time for patients and their loved ones. We welcome unique applications, and work hard to make decisions transparently and efficiently so that funds can be accessed as quickly as possible.
Where to Get More Information?
If you need further details or support with your application, please reach out to the relevant contacts:
• National CJD Care Fund: Contact [email protected]
• CJD Support Network Care Grants: Contact [email protected] or call 0800 774 7317, click HERE to visit our website where you will find the Care Grant policy.
Both funds exist to provide essential support during an incredibly challenging time. Whether through NHS-backed resources or charitable community aid, help is available to ensure that individuals affected by CJD receive the care they need.
