CJDSN Caring Grant Policy v1.1

Date: 27 May 2025

1. Introduction

The CJD Support Network (CJDSN) is dedicated to supporting individuals affected by Creutzfeldt-Jakob Disease (CJD), and all human prion diseases, and their families. CJDSN offers care grants to provide financial assistance to those facing economic hardship due to CJD. This policy outlines the eligibility criteria, application process, and disbursement guidelines.

2. Care Grant Objectives

• To provide financial relief to individuals and families affected by CJD for care-related costs.
• To support treatment and related needs associated with CJD.

3. Policy Objective

• To ensure a fair and transparent grant allocation process.

4. Eligibility Criteria

• Diagnosis: Applicant must demonstrate the individual has a symptomatic diagnosis of CJD or related prion disease.
• Care need: Must show that the grant is for a genuine care-related cost.
• Financial need: Applicant must confirm hardship and explain why statutory funding isn’t covering the need.
• Residency: Applicant must live in the UK.
• Purpose: Grant must cover care or treatment expenses, including:
  • Medical expenses
  • Travel for medical appointments
  • Home care services
  • Respite care
  • Medical equipment and supplies

5. Application Process

CJDSN usually accepts applications from approved Referral Partners with a password to access the online form. Eligible partners include:

• National Prion Clinic (London)
• CJD National Nursing Service (Edinburgh)
• National CJD Diagnostic Advisory Service (Edinburgh)

Others may contact [email protected] to apply or request partner status.

Steps:

1. Complete online form or email [email protected] to request one.
2. Ensure all sections are filled out.
3. Attach supporting documentation:
   • Letter from a medic confirming diagnosis, disease severity, and progress.
   • Letter from another professional confirming financial hardship and unmet care needs.
4. Submit via form (partners), email, or post to: PO Box 3936, Chester, CH1 9NG

6. Review and Approval

• Review Committee: CJDSN Executive Committee
• Evaluation based on:
  • Level of financial need
  • Clarity of fund use
  • Application completeness
• Timeline: A decision is usually made within 5 working days after receiving a complete application.

7. Grant Disbursement

• Amount: Up to £500. Repeat grants are rare.
• Payment: By bank transfer to recipient or service provider.
• Reporting: Receipts may be required for verification.

8. Conditions and Limitations

• Retrospective applications must clearly explain the need.
• Grants are non-transferable and must be used as stated.
• Unused funds must be returned.
• Unusual or unique requests will be considered case-by-case.
• Exclusions: Grants are not typically available for non-care-related costs like general household expenses, funeral costs, or bereavement support.

9. Confidentiality

All information will be kept confidential and used only for evaluating and managing the care grant.

10. Contact Information

For support with the application, contact: [email protected]

11. Policy Review

This policy is reviewed annually by CJDSN Trustees to ensure relevance and fairness.

Next review date: May 2026