How Scott Tarpey, sole trader trading as MyMyelitis, uses and protects personal information
Last updated: 7 August 2026
At a glance MyMyelitis provides non-clinical information, peer-informed coaching and support for adults affected by MOGAD. Because people may choose to share health information, we treat privacy and data minimisation as especially important. We do not sell personal information and do not use personal information to make solely automated decisions. |
1. Who we are
Scott Tarpey, a sole trader trading as MyMyelitis, is the controller of the personal information described in this notice. This means I decide why and how it is used.
Privacy contact: info@mymyelitis.com
Postal address: Unit 87935 PO Box 4336, Manchester, M61 0BW, United Kingdom
Website: www.mymyelitis.com
2. What this notice covers
This notice applies when an adult interacts with MyMyelitis through the website, email, downloads, bookings, coaching, the MOGAD Navigator Programme, research or feedback conversations, testimonials, references, support groups or communities, YouTube or social media. It also applies to future MyMyelitis products and services where this notice is linked, unless a more specific notice is provided.
Website enquiries, lead magnets and requested resources.
Kit email subscriptions and marketing messages.
Clarity Consultations and paid standalone one-to-one sessions.
The MOGAD Navigator Programme and related onboarding, coaching and follow-up.
Testimonials, case studies and voluntary references.
Research interviews, audience surveys and patient-insight conversations.
Support groups, Discord or other community activity, if offered.
YouTube comments, content suggestions and messages on social-media platforms.
3. Personal information we may collect
The information collected depends on how you interact with MyMyelitis and what you choose to share. It may include:
Identity and contact information, such as your name and email address.
General location, country and time zone for scheduling and service delivery.
Booking, attendance, programme and payment history. Stripe processes full payment-card details; MyMyelitis generally receives payment status, amount and limited card information rather than your full card number.
Health information you choose to provide, including whether you live with MOGAD or support someone who does, symptoms, relapses, medication, treatment, healthcare experiences and relationships with clinicians.
Information about employment, family life, emotional wellbeing, lifestyle, goals, challenges and coaching discussions that you choose to share.
Copies or details of insurer letters, clinician correspondence or other documents when you choose to share them and they are genuinely relevant.
Session notes and, where separately agreed, a written transcript.
Feedback, survey answers, testimonials, photographs and permissions relating to case studies or acting as a reference.
Messages, comments and content suggestions submitted by email, forms, YouTube, Discord or social media.
Technical information such as IP address, browser or device type, approximate location, requested pages, timestamps, server logs and cookie information collected by hosting, website or embedded-content providers.
Please minimise medical documentsDo not send full medical records, MRI images, blood results or clinician letters unless MyMyelitis has specifically asked for a document and it is genuinely necessary. If you do share a document, remove information that is not relevant wherever possible. Email and community platforms may not be appropriate for highly sensitive records. |
4. Where the information comes from
Most information comes directly from you through forms, email, bookings, payments, calls, sessions, surveys, communities and social-media interactions. We may also receive limited information from service providers such as Calendly and Stripe, from a family member or professional you have asked to contact us, or from public posts and messages directed to MyMyelitis.
5. Why we use information and our lawful bases
UK data-protection law requires a lawful basis for using personal information. Health information is special-category data and requires an additional condition. The main purposes and bases used by MyMyelitis are set out below.
Activity | What we do | Lawful basis / health-data condition |
Enquiries, bookings and suitability | Respond, understand what you are seeking, arrange a consultation and manually assess whether a service is appropriate and within scope. | Steps at your request before a contract; legitimate interests in operating a safe, relevant service. Health information: explicit consent. |
Coaching and programmes | Deliver and personalise one-to-one sessions, the Navigator Programme, resources, roadmaps, session preparation and follow-up summaries. | Contract. Health information: explicit consent. Legal claims condition may apply if needed to establish, exercise or defend a claim. |
Scheduling and payments | Manage appointments, attendance, invoices, payments, refunds and service administration. | Contract; legal obligation for tax and accounting records; legitimate interests in preventing fraud and resolving payment issues. |
Requested resources | Send downloads, guides or information you have requested. | Steps at your request before a contract, contract, or legitimate interests depending on the request. |
Email marketing | Send newsletters, programme information and other marketing where you have opted in. | Consent. We keep a minimal suppression record to respect an unsubscribe request. |
Research and service improvement | Run interviews and surveys, understand needs, improve services and identify content themes. | Consent or legitimate interests for non-sensitive operational feedback. Health information or identifiable research: explicit consent. Truly anonymised insights are no longer personal information. |
Testimonials and references | Publish an agreed testimonial or case study, or introduce you as a voluntary reference. | Consent. Where health information is identifiable: explicit consent. Each reference introduction will be confirmed separately. |
Website and security | Operate, protect and troubleshoot the website, services, accounts and communications. | Legitimate interests in secure and effective service operation; legal obligation where applicable. Non-essential cookies or similar technologies require consent. |
Complaints, safety and legal matters | Respond to complaints, manage serious safety concerns, comply with law, and establish or defend legal rights. | Legal obligation, legitimate interests, or vital interests in a genuine emergency. Health information: legal-claims condition, vital interests where the person cannot consent, or explicit consent as appropriate. |
Where processing is based on consent, you may withdraw that consent at any time by emailing info@mymyelitis.com. Withdrawal does not make earlier processing unlawful. If health information is objectively necessary to provide a personalised service, withdrawing consent may mean that the service can no longer be provided safely or effectively.
6. Suitability and safety decisions
MyMyelitis services are non-clinical and are not suitable for assessing or treating a possible relapse, medical emergency or acute mental-health crisis. Scott may make a human decision to decline, cancel or pause a consultation or programme where the request falls outside the service scope, appears unsuitable, or indicates that medical or emergency support may be more appropriate. This is not a medical diagnosis and is not an automated decision.
Not an emergency serviceMyMyelitis messages and forms are not continuously monitored. If you believe you may be experiencing a relapse, a medical emergency or an immediate risk to life, contact your treating team, local urgent-care service or emergency services. |
7. Calls, transcripts and AI-assisted tools
Audio and video recording
MyMyelitis does not routinely audio- or video-record calls. If recording is proposed for a particular call, you will be told in advance and asked for separate, explicit agreement. You may decline without being recorded.
Optional written transcripts
A written transcript may be offered to help prepare a session summary or follow-up. A transcript will only be created with separate, explicit agreement. You can still receive the underlying service if you decline transcription, although the follow-up may be based on ordinary session notes instead. Raw transcripts are normally deleted within 90 days after the agreed summary has been produced, unless a longer period is specifically agreed or the transcript is needed for a complaint or legal matter.
AI-assisted processing
MyMyelitis may use approved transcription or artificial-intelligence tools to help organise notes, draft summaries or follow-up messages, identify anonymised themes, or review service quality. Before external AI processing, we will limit the information to what is necessary and remove direct identifiers where reasonably possible. If identifiable health information or a transcript would be processed by an external AI provider, we will obtain separate explicit agreement and explain the purpose.
AI is used as an administrative drafting aid, not to diagnose, assess a relapse, recommend treatment or replace professional judgment.
Scott reviews AI-assisted outputs before using or sending them.
MyMyelitis does not make solely automated decisions that produce legal or similarly significant effects.
A new call-review or AI provider will not be introduced for identifiable health information without appropriate privacy checks, contractual safeguards and any required consent.
8. Email marketing
Kit is used to manage email subscriptions, forms and marketing messages. Marketing is sent only where you have opted in or another lawful permission applies. You can unsubscribe using the link in any marketing email or by contacting info@mymyelitis.com. Service messages about a booking, payment or active programme are not marketing and may still be sent where necessary.
9. Website, cookies and embedded content
The website is hosted using WPX and WordPress. Hosting and website systems may process server-log and device information needed to deliver, secure and troubleshoot the site. At the date of this notice, MyMyelitis does not intentionally use Google Analytics, Meta Pixel or similar advertising pixels.
Some pages include embedded YouTube videos. When an embedded video loads or you interact with it, Google/YouTube may receive information such as your IP address, device information, the page visited and viewing activity, and may use cookies or similar technologies under its own privacy terms. MyMyelitis is reviewing consent controls for embedded content. You can avoid interacting with an embedded video and instead choose whether to visit YouTube directly.
Other third-party links or embedded services may have their own privacy notices and cookie practices. A separate Cookie Notice or cookie-control tool may provide more detail as the website develops.
10. Communities, YouTube and social media
Information posted in a Discord channel, support group, YouTube comment or social-media space may be visible to other users and processed by the platform under its own terms. These spaces should not be treated as private medical channels. Avoid posting information you do not want others to see. MyMyelitis may retain moderation records or copies of messages where necessary to manage the community, respond to a request or address safety, misuse or legal concerns.
11. Who we share information with
We share only what is reasonably necessary. Recipients may include:
Service providers supporting hosting, website operation, forms, email, bookings, video calls, payments, surveys, documents, transcription, AI assistance, communities and social media. Current or contemplated services include WPX/WordPress, Kit, Calendly, Stripe, Carrd, Zoom, Zoho Mail, Google/YouTube/Google Forms, OpenAI/ChatGPT, Discord and the relevant social-media platforms.
Professional advisers such as an accountant, bookkeeper, solicitor or insurance provider where engaged and where information is necessary.
Carefully selected contractors or future coaches who need access to provide the service and are subject to confidentiality and data-protection requirements.
Research organisations or charities, normally using anonymised information. Identifiable information will be shared only with separate consent or another clear legal basis.
A family member, clinician or employer only where you specifically ask or agree, or exceptionally where disclosure is necessary to protect life or comply with law.
A prospective client who asks to speak with a reference only where the volunteer has separately agreed to that specific introduction and the contact details to be shared.
Courts, regulators, emergency services, law enforcement or other authorities where required or permitted by law.
A buyer or successor if the business is reorganised, transferred or sold, subject to appropriate confidentiality and notice where required.
MyMyelitis does not sell personal information.
12. International transfers
Some service providers or their subcontractors may store or access information outside the United Kingdom, including in the United States or other countries. Where UK transfer rules apply, MyMyelitis will use a lawful transfer mechanism, such as UK adequacy regulations, the UK International Data Transfer Agreement, the UK Addendum to approved contractual clauses, or another permitted safeguard or exception. Appropriate risk checks and supplementary measures will be used where required. You may contact info@mymyelitis.com for more information about safeguards relevant to your information.
13. How long we keep information
Record | Normal retention period |
General enquiries that do not progress | Normally 12 months after the last meaningful contact. |
Clarity Consultation booking information and notes | Normally 24 months after the consultation. |
Routine coaching and programme session notes | Normally 24 months after the client relationship ends, unless a longer period is needed for an active complaint, legal claim or agreed continuity purpose. |
Client agreements, key correspondence and legal records | Normally six years after the client relationship ends. |
Financial, invoice, payment and tax records | Normally six years, or longer if required by law. |
Audio or video recording, if exceptionally agreed | Normally deleted within 30 days unless a different specific purpose and period were agreed. |
Raw transcript | Normally deleted within 90 days after producing the agreed summary, unless longer retention is specifically agreed or needed for a complaint or legal matter. |
Email subscriber record | Until you unsubscribe; then a minimal suppression record is kept for as long as needed to respect the opt-out. |
Testimonials, case studies and consent | While in use, reviewed at least every two years. Related consent records may be kept after last use where needed to demonstrate permission. |
Research interviews and identifiable insight records | Normally 24 months, unless a different period is explained and agreed for a particular project. |
Unsuccessful or abandoned payment information | Normally 12 months, subject to the payment provider's own retention obligations. |
Community and social-media records | For as long as available on the platform and reasonably necessary for the interaction, moderation, safety or legal purpose. |
Truly anonymised insights | May be kept indefinitely because they no longer identify an individual. |
These are normal periods rather than guarantees. Information may be deleted sooner when no longer needed or kept longer where required by law, a dispute, a safeguarding concern or a legal hold. Providers may keep limited records under their own legal obligations.
14. Security
MyMyelitis uses proportionate technical and organisational measures designed to protect personal information, including limiting access, password and account controls, careful selection of service providers, secure device practices, data minimisation and deletion routines. No method of transmission or storage is completely secure, so absolute security cannot be guaranteed. If a personal-data breach creates a legal duty to notify you or the Information Commissioner's Office, MyMyelitis will do so.
15. Your data-protection rights
Depending on the circumstances, you may have the right to:
Be informed about how your information is used.
Ask for access to your personal information.
Ask for inaccurate or incomplete information to be corrected.
Ask for information to be erased in certain circumstances.
Ask for processing to be restricted in certain circumstances.
Object to processing based on legitimate interests or to direct marketing.
Receive certain information in a portable format where the right applies.
Withdraw consent at any time where processing relies on consent.
Complain to the Information Commissioner's Office.
Rights are not absolute and legal exceptions may apply. To exercise a right, email info@mymyelitis.com. We may need proportionate information to verify identity. We normally respond within one month.
16. Adults only
MyMyelitis services covered by this notice are intended for adults aged 18 or over. If information about a child is received unexpectedly, we will limit its use and delete it where appropriate, unless there is a legal or vital reason to retain or disclose it.
17. Complaints
Please contact MyMyelitis first at info@mymyelitis.com so we can try to resolve your concern. You also have the right to complain to the UK Information Commissioner's Office.
Information Commissioner's Office | Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF, United Kingdom
18. Changes to this notice
This notice may be updated as MyMyelitis services, providers or legal requirements change. The latest version will be published on www.mymyelitis.com with a new 'last updated' date. Where a change materially affects an active client or a consent-based activity, we will provide additional notice or seek fresh consent where required.