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. As part of this commitment, CJDSN offers care grants to provide financial assistance in relation to care, for those facing economic hardship due to CJD. This document outlines the eligibility criteria, application process, and guidelines for disbursement of care grants.
1. Care Grant Objectives
1.1 To provide financial relief to individuals and families affected by CJD, for costs associated with care.
1.2 To support the costs associated with care, treatment, and other needs related to CJD.
2. Care Grant Policy Objective
2.1 To ensure a fair and transparent process for the allocation of care grants.
2. Eligibility Criteria
3.1 Diagnosis: The applicant must demonstrate that the care grant is being applied for on behalf of an individual, or family caring for an individual, with a symptomatic diagnosis of CJD or a related prion disease.
3.2 Care need: The applicant must demonstrate that the care grant is being applied for to cover the cost of a genuine care or related need.
3.3 Financial Need: The applicant must also confirm they have sufficient knowledge that there is financial hardship. The applicant must confirm, and demonstrate where appropriate, that this care related need that cannot be otherwise covered by statutory funding (e.g., continuing healthcare funding, local authority, NHS, or the CJD Care Fund).
3.4 Residency: The applicant must be a resident of the United Kingdom.
3.5 Purpose of Grant: The grant must be used for costs associated with the care and treatment of the person with CJD. This includes, but is not limited to:
o Medical expenses
o Travel costs for medical appointments
o Home care services
o Respite care
o Medical equipment and supplies
4. Application process
The CJDSN ordinarily accepts applications from pre-approved ‘Referral Partners’ who have been provided with a password to access our online application form. Clinicians employed by the following organisations are considered pre-approved ‘Referral Partners’, provided that they are suitably familiar with this Care Grant policy:
• National Prion Clinic (London)
• CJD National Nursing Service (Edinburgh)
• National CJD Research and Surveillance Unit (Edinburgh)
Those who wish to make an application otherwise, or to become a pre-approved Referral Partner, should contact [email protected] for further assistance. Both Referral Partners and non Referral Partners should make Care Grant applications by taking the following steps:
4.1 Complete online application form or request form from [email protected]
4.2 Ensure that all sections of the form are completed
4.3 Attach the following supporting documentation:
• Supporting letter from a medic: A signed letter of support, on headed paper, for the Care Grant application. This may be the person making the application and should include confirmation of the diagnosis of prion disease, and state the severity, duration and rate of progress of the disease.
• Supporting letter from another health or social care professional (not necessarily a medic): A signed letter of support, on headed paper, for the Care Grant application. This may be the person making the application and should give an account of the financial hardship, care need in question and details of why this care related need cannot be otherwise covered by statutory funding (e.g., continuing healthcare funding, local authority, NHS, or the CJD Care Fund).
4.4 Submit the application and supporting documentation via the online form (Referral Partners only), by email to [email protected], or print and post to PO Box 3936, Chester, CH1 9NG
5. Review and Approval
5.1 Review Committee: Applications will be reviewed by the CJDSN Executive Committee.
5.2 Evaluation Criteria: The committee will evaluate applications based on:
o The level of financial need.
o The clarity and relevance of the proposed use of funds.
o The completeness of the application.
5.3 Decision: The committee will aim to make a decision within a maximum of 5 working days of receiving a complete application and having any follow up queries clarified. Applicants will be notified of the outcome in writing via email or post, and are expected to share the outcome with the Recipient.
6.1 Amount: Grants are for up to £500. Due to limited funds, repeat grants are not ordinarily given.
6.2 Payment: Grants will be disbursed via bank transfer to the Recipient or directly to service providers, depending on the nature of the expenses. Details of where the grant should be paid will be sought from the referrer in the event that a grant is approved.
6.3 Reporting: Where grants are provided to the Recipient, receipts and other documentation evidencing use of funds are required.
7.1 Retrospective grants: Wherever possible, caring grants ought to be made prospectively. Where grant requests are made retrospectively by necessity, reasons should be outlined clearly in the supporting documentation.
7.2 Non-Transferable: Grants are non-transferable and must be used for the specific purpose stated in the application.
7.3 Unused Funds: Any unused funds must be returned to CJDSN.
7.4 Unique Applications: Unique applications are welcome and will be carefully considered, taking into account the family’s situation.
7.5 Exclusions: Grants will not routinely be offered for purposes not directly related to the care and/or quality of life of the patient (e.g. household costs where the patient is not being cared for at home, funeral costs, bereavement counselling and psychological support).
Confidentiality All information provided in the application will be kept confidential and used solely for the purpose of evaluating and administering the care grant.
Contact Information For questions or assistance with the application process, please contact: CJD Support Network – [email protected]
Policy Review This policy will be reviewed annually by the CJDSN Trustees to ensure its effectiveness and relevance. This policy ensures that the care grants provided by the CJD Support Network are allocated fairly and effectively to those in need, while maintaining transparency and accountability in the process.
Date of next review: JANUARY 2026