Terms and Conditions
TERMS AND CONDITIONS OF USE
These terms of use govern the relationship between you and us when you access and use our SUDEP and Seizure Safety Checklist (Adult or Paediatric version). Any reference to `our` or `us’ in these terms and conditions is to SUDEP Action. Any reference to `Checklist’ is to the SUDEP and Seizure Safety Checklist (Adult or Paediatric version).
By accessing and continuing to use the Checklist you agree to be legally bound by these terms of use. Please read these terms carefully before use.
Please note that we may update and amend these terms of use from time to time and any changes will be posted on the SUDEP Action website. If you do not agree with any of our terms of use then you should not use the Checklist.
AIMS OF THE CHECKLIST
The SUDEP and Seizure Safety Checklist is an evidence based clinical tool for health professionals. It is designed to support risk communication as part of any review of an epilepsy care plan or consultation. The Adult version of the tool is for use with any epilepsy patient over 16+ years (eg: children transitioning to adult services, and those already in adult services). The Paediatric version of the tool is for use with any epilepsy patient under 18 years currently in paediatric services. The SUDEP and Seizure Safety Checklist (Adult or Paediatric version) is derived from work done primarily on Sudden Unexpected Death in Epilepsy (SUDEP) and the major risk factors known to be associated with premature mortality in epilepsy.
INFORMATION ABOUT US
The Checklist is made available through a collaboration between Cornwall Partnership NHS Foundation Trust and SUDEP Action. Our Development Group includes a wide range of local stakeholders as well as international experts. The Paediatric version of the tool is also supported by Young Epilepsy.
CONTENT
The content of our Checklist includes the major risk factors known to be associated with SUDEP and epilepsy-related deaths as at September 2019 (adult version) and August 2024 (paediatric version).
Whilst there is no proven intervention yet, there is a substantial body of work on associated risk factors for SUDEP and for other epilepsy-related deaths. More research is ongoing and the SUDEP and Seizure Safety Checklist will be reviewed by our expert panel regularly (normally every 12 months).
CHANGES TO THE CONTENT OF THE CHECKLIST
We will send you any updated version, but it is your responsibility to keep us updated with any changes to your contact details and to ensure receipt and reading of your emails. If you are using the Checklist for audit or research we encourage you to contact us and make very clear in any research publication or presentation version of the Checklist you have used.
While we make all reasonable endeavours to ensure that the content in the Checklist is correct, we make no promise, warranty or guarantee that the information is accurate, complete or up-to-date. The Checklist is a support tool and is not intended to substitute for your own judgement as a Clinician or your continuing professional development.
COPYRIGHT
You agree that you will not use the Checklist in any way that may lead to the encouragement, procurement or carrying out of any infringement of our copyright of the Checklist and our website by yourself or by any third party (see Intellectual Property Rights).
You agree not to give any indication that you have any commercial relationship with us, or that you are our agent or that we have endorsed any of your activities, unless otherwise expressly permitted by us.
AUTHORISED USE
The Checklist is authorised for use with any patient who has epilepsy. The Adult version of the tool is for use with any epilepsy patient over 16+ years (eg: children transitioning to adult services, and those already in adult services). The Paediatric version of the tool is for use with any epilepsy patient under 18 years currently in paediatric services. The Checklist is an aid and not a substitute for clinical judgement and the lay prompts that are suggested on the questions on alcohol and recreational drugs may need adjustment depending on the patient the risks are being discussed with.
The Checklist is authorised only to be used in its entirety. It is not intended for it or any part of the Checklist to be incorporated or copied into any other tool. We do encourage, however, that it be used in the context of a wider epilepsy review to ensure risk is checked regularly.
The Checklist is authorised for use by health professionals only for the purposes of patient reviews. The Checklist is for use in an individual’s clinical practice with patients and is not authorised for reproduction.
The Checklist is designed for use by Health Professionals working in the UK with an NHS email address and for NHS purposes.
Requests for permission to use the Checklist by people who are not health professionals will not normally be authorised unless there is a clear rationale for doing so. We will discuss this on an individual basis.
It is designed to be used without any additional training. Please discuss any training needs with SUDEP Action. Further free risk information and resources can be found at www.sudep.org.
Request by Clinicians wishing to use the Checklist for other purposes, for example educational / training purposes or for research or audit, need to contact SUDEP Action (checklist@sudep.org). These requests will be considered on an individual basis.
Your permission to use this Checklist will terminate if you do not comply with these terms of use and you must immediately destroy any version of the Checklist on your computer or printed extracts.
DISCLAIMER
You agree that you will not place reliance on the Checklist as a stand-alone tool. The primary responsibility of monitoring epilepsy and seizures and decisions to intervene remain at all times with the Clinician and the medical team and in the context of national clinical guidelines and standards.
While we endeavour to ensure that the content in the Checklist is correct, we make no promise, warranty or guarantee that the information is accurate, complete or up-to-date. We therefore disclaim all liability and responsibility arising from use of our Checklist or any reliance placed on such information, commentary and materials by anyone who may be informed of any of its contents.
INTELLECTUAL PROPERTY RIGHTS
We are the owner or the licensee of all copyright and other intellectual property rights in our Checklist and in the material published on each. Those works are protected by intellectual property laws and treaties around the world. All such rights are reserved.
The names, images and logos identifying us, companies in our group, our partners or third parties and our/their products and services are proprietary marks and may not be reproduced or otherwise used without express permission.
The contents of the Checklist or any imitation may not be copied, reproduced, communicated and/or made available to the public, republished, downloaded, posted, recorded, broadcast or transmitted or used in any other way except for your own clinical and non-commercial use, unless otherwise expressly permitted by us.
You may print off copies of the Checklist for use in patient reviews and for filing in patient medical notes and you may print off one copy for your personal use. You may print additional copies for educational purposes if we have given you explicit permission to do this, but please be advised that any person wishing to use the Checklist in clinical practice must register with us as an individual clinician in the normal way.
You may download extracts, of any page(s) from our website for your personal reference and you may draw the attention of others within your organisation to material posted on our website.
You must not modify the paper or digital copies of any materials you have printed off or downloaded in any way, and you must not use any illustrations, photographs, video or audio sequences or any graphics separately from any accompanying text.
Our status (and that of any identified contributors) as the authors of material in the Checklist must always be acknowledged.
You must not use any part of the materials on the Checklist for commercial or for the purposes of any organisation, commercial or otherwise, without obtaining a licence to do so from us or our licensors.
If you print off, copy or download the Checklist in breach of these terms of use, your right to use our Checklist will cease immediately and you must, at our option, return or destroy any copies of the materials you have made.
You are responsible for making all arrangements necessary for you to have access to an updated Checklist. This includes notifying us if your email/organisational role changes so we can update our records accordingly. Please do so by contacting checklist@sudep.org.
UPDATING THE CHECKLIST
We aim to update the Checklist regularly and may change the content at any time. Any of the material on a downloaded version of the Checklist must be dated. We are under no obligation to update such material for you.
OUR LIABILITY
The material displayed on our Checklist is provided “as is” without any guarantees, conditions or warranties as to its accuracy. To the extent permitted by law, we and third parties connected to us hereby expressly exclude all conditions, warranties and other terms which might otherwise be implied by statute, common law or the law of equity.
INFORMATION ABOUT YOU AND YOUR USE OF THE CHECKLIST
We process information about you for the purposes of sending you updates and engaging with you for feedback and in accordance with our privacy policy. You will be signed up to the SUDEP Action health professional quarterly e-news as part of this process and must contact us if you wish to unsubscribe. By using our Checklist you consent to such processing and you warrant that all data provided by you is accurate.
LINKING TO THE SUDEP ACTION WEBSITE
We encourage you to link to the SUDEP Action home page (www.sudep.org), provided you do so in a way that is fair and legal and does not damage our reputation or take advantage of it, but you must not establish a link in such a way as to suggest any form of association, approval or endorsement on our part where none exists.
If you wish to link to the SUDEP Action home page or make any use of material on our website other than that set out in these terms of use, please address your request to SUDEP Action using the contact details below.
LINKS FROM THE CHECKLIST
Where our Checklist and SUDEP Action website contains links to other websites and resources provided by third parties, these links are provided for your information only. We have no control over the content of those websites or resources, and accept no responsibility for them or for any loss or damage that may arise from your use of them.
SEVERANCE
If any provision of these terms of use shall be found by any court or administrative body of competent jurisdiction to be invalid or unenforceable, such invalidity or unenforceability shall not affect the other provisions of these terms of use which shall remain in full force and effect.
APPLICABLE LAW AND JURISDICTION
The English Courts will have exclusive jurisdiction over any claim arising from, or related to, a visit to the Checklist or our SUDEP Action website and although we retain the right to bring proceedings against you for breach of these terms of use in your country of residence or any other relevant country.
These terms of use and any dispute or claim arising out of or in connection with them or their subject matter or formation (including non-contractual disputes or claims) shall be governed by and construed in accordance with the law of England and Wales.
The Checklist and SUDEP Action website are based in England and both are intended for users in the United Kingdom. We make no representations that the Checklist and the SUDEP Action website are suitable for users outside the United Kingdom, and if you choose to access the Checklist and SUDEP Action website outside of the United Kingdom you are solely responsible for ensuring compliance with all relevant local laws.
VARIATIONS
We may revise these terms of use at any time by amending this page. You are expected to check this page from time to time to take notice of any changes we have made, as they are binding on you. Some of the provisions contained in these terms of use may also be superseded by provisions or notices published elsewhere on our website or Checklist.
YOUR CONCERNS
If you have any concerns about material which appears on our Checklist or SUDEP Action website please contact checklist@sudep.org or call 01235 772850.
CHANGES TO OUR TERMS AND CONDITIONS
Any changes we may make to the Terms and Conditions in the future will be notified to you by email.
These Terms and Conditions were last updated on 3rd September 2024.
OUR CONTACT DETAILS:
Data Controller, Support and Enquires: SUDEP Action, 18 Newbury Street, Wantage, Oxfordshire, OX12 8DA,
Email: checklist@sudep.org
Questions, comments and requests regarding these Terms and Conditions are welcomed and should be addressed to SUDEP Action at the above address.
SUDEP Action is a registered charity 1164250 (England and Wales) and SC047223 (Scotland). Epilepsy Bereaved (founded 1995) is part of SUDEP Action.