Complaints Procedure

Dravet Syndrome UK is committed to ensuring that all complaints are handled fairly, transparently, and promptly. This procedure provides a clear and accessible process for anyone who wishes to raise a concern about our services or fundraising activities.

We take all complaints seriously. They help us to improve, and every person who takes the time to raise a concern will be treated with respect and given a clear response.

If you have a complaint, please contact us in the first instance:

• Email: [email protected]
• Phone: 01246 912 421
• Post: Dravet Syndrome UK, PO Box 756, Chesterfield, S43 9EB

When contacting us, it helps to include:

• Your full name and contact details
• A clear description of your complaint
• Any supporting information or documents
• Your preferred method of contact

We aim to handle all complaints consistently, fairly and without unnecessary delay.

Stage 1:

Acknowledgement – within 5 working days

We will confirm we have received your complaint and tell you who is handling it.

Stage 2:

Investigation and response – within 20 working days

We will investigate your complaint and provide a full written response setting out our findings and any actions we are taking. If we need more time, we will let you know within 20 working days and give you a revised timeline.

If you are not satisfied with our response, you may escalate your complaint in writing to the Director:

• Post: Director, Dravet Syndrome UK, PO Box 756, Chesterfield, S43 9EB
• Email: [email protected] (marked for the attention of the Director)

The Director and/or a Trustee nominated by the Director will review your complaint and respond in writing within 20 working days. This response will represent the final stage of our internal procedure.

If you remain dissatisfied after exhausting our internal procedure, you have the right to contact:

• Fundraising Regulator: www.fundraisingregulator.org.uk – for complaints about fundraising practice
• Charity Commission: www.gov.uk/complain-about-charity – for concerns about the governance or management of the charity

This complaints procedure is publicly available on our website. If you need it in an alternative format, please contact us and we will do our best to assist.

When a complaint is received, the following process applies:

Receipt

All complaints are forwarded on receipt to the Director. If the Director is subject to or party to the complaint, the Safeguarding Trustee will be notified. If the Safeguarding Trustee is also subject to or party to the complaint, the Chair of Trustees will be notified. 

Logging

Complaints are recorded in our complaints log, which is maintained by the Director with oversight by the Board of Trustees. The log should include the date, nature of the complaint, the complainant’s contact details, and the channel through which it was received.

Investigation

All complaints are investigated by the Director in the first instance. If the Director is subject to or party to the complaint, the Safeguarding Trustee will determine the appropriate handling. If the Safeguarding Trustee is also subject to or party to the complaint, the Chair of Trustees will determine the appropriate handling. 

Investigation

The investigating officer will:

• Review all relevant information and documentation
• Speak with any staff or volunteers involved, where appropriate
• Reach a finding as to whether the complaint is upheld, partially upheld, or not upheld
• Identify any actions to be taken as a result

Response

The complainant will receive a written response setting out the finding, the reasons for it, and any actions Dravet Syndrome UK is taking. The response will be issued within 20 working days of receipt of the complaint. If this is not possible, the complainant will be informed within 20 working days and given a revised timeline.

Escalation

Where a complainant escalates to the Director, they will nominate a Trustee to conduct a fresh review of the complaint and the original response. The Trustee reviewer will not be the same person who handled the initial investigation. A written response will be issued within 20 working days of the escalation being received.

Documentation and confidentiality

All complaints and responses are documented and held securely in line with our data retention policy. Complaints are treated as confidential. Information will only be shared within the organisation on a need-to-know basis, and with the complainant’s consent where appropriate.

Under the Data (Use and Access) Act 2025, you have the right to raise a data protection complaint directly with Dravet Syndrome UK if you believe we have handled your personal data in a way that does not comply with UK data protection law. We ask that you contact us in the first instance so that we can try to resolve your concern directly.

What is a data protection complaint?

A data protection complaint arises when someone believes DSUK has handled their personal data unlawfully or in a way that breaches their rights. Examples include:

• Concerns about how personal data has been collected, stored, or shared
• A refusal or failure to respond to a data subject rights request (such as a request to access or delete data)
• A suspected data breach affecting their personal data
• Use of personal data for purposes the individual did not agree to

How to raise a data protection complaint

Data protection complaints should be directed to the Director:

• Email: [email protected] (please mark your message ‘Data Protection Complaint’)
• Post: Dravet Syndrome UK, PO Box 756, Chesterfield, S43 9EB
• Phone: 01246 912 421

How we handle data protection complaints

Data protection complaints follow the general investigation process set out above, with the following specific requirements:

• Acknowledgement: we will acknowledge receipt of every data protection complaint within 30 days (calendar days).
• Investigation: the Director will investigate the complaint, reviewing the relevant data processing and any applicable policies or records.
• Response: we will respond with our findings and any action being taken without undue delay. Our response will confirm the complainant’s right to escalate to the ICO if they remain dissatisfied.
• Recording: all data protection complaints, acknowledgements, and outcomes will be logged and held securely in line with our data retention policy.

Escalation to the ICO

If a complainant is not satisfied with our response, or if we have not responded within a reasonable time, they have the right to escalate their complaint to the Information Commissioner’s Office (ICO). Details of how to contact the ICO are set out in our Privacy Notice, available at www.dravet.org.uk/privacy-policy.

Annual review

The Director will include a summary of data protection complaints received in the annual complaints review presented to the Board.

Any member of staff or volunteer who has a concern about Dravet Syndrome UK’s fundraising practice, including concerns about compliance with the Fundraising Regulator’s Code of Fundraising Practice, is encouraged to raise it without fear of negative consequences.

How to raise a concern

Concerns should in the first instance be raised with the Director. Where the concern relates to the Director, it should be raised directly with the Chair of Trustees.

• Email: [email protected] 
• Post: Dravet Syndrome UK, PO Box 756, Chesterfield, S43 9EB
• Phone: 01246 912 421

What to include

When raising a concern, please describe:

• The nature of the concern and the fundraising activity involved
• Any relevant dates, communications or documents
• What outcome you are hoping for

How concerns will be handled

We will acknowledge your concern promptly and investigate it fairly. You will be kept informed of progress and outcome. Concerns are treated as confidential wherever possible.

Protection from victimisation

Anyone raising a genuine concern in good faith will not be subject to any detriment, victimisation or harassment as a result. This applies regardless of whether the concern is ultimately upheld. Any member of staff or volunteer who believes they have suffered a detriment as a result of raising a concern should inform the Chair of Trustees immediately.

Escalation to the Fundraising Regulator

If a concern cannot be appropriately considered or resolved internally, it can be reported to the Fundraising Regulator at www.fundraisingregulator.org.uk.