Patients & Families Forum House Rules 

INTRODUCTION

Hello and welcome to the Anthony Nolan Patients and Families Forum (“the Community”). This Community gives you the opportunity to connect with others who have experience of a stem cell or bone marrow transplant (“Transplant”). 

To ensure the Community is a safe, friendly and respectful space, we’ve put together the following house rules (the “House Rules”), which we require you to keep to when you make contributions (“Contributions”) to the Community and to any interactive services associated with the Community.  

Please read and agree to the House Rules before you sign up, as breaking these rules may lead to your content being removed or account cancelled.  

You are welcome to discuss and share tips and ideas in the Community, but please remember that any content posted here should never be considered professional medical advice. If you have any questions or concerns regarding your health, you must seek medical advice from your GP or Transplant team.  

Please remember all the information posted here, including images, is in the public domain and we don’t have control over their use once posted.   

Community members must be aged 18 or above on the date of registration for the Community. If you are under this age and need support, we recommend Teenage Cancer Trust or Young Lives Vs Cancer.  

CONTRIBUTIONS 

You are responsible for the content of any messages you post on the site or privately. 

DO 

• Do ensure Contributions are accurate (where facts are stated) or genuinely held (where opinions are stated): while we welcome and encourage you to express your opinions – this will help the Community grow and provide a richer experience for all members – due to the sensitive nature of the topics covered by the Community, it is important that Contributions do not mislead other members. Remember that when you are posting, you are posting on a public forum and your messages will be read by other members. 
• Do comply with applicable laws of the UK and in any country from which Contributions are posted.  

DON’T 

• Don’t try to contact your donor, or your recipient if you are a donor: communications between donor and recipient cannot take place in the first two years following a Transplant. After this time, any communications should be made through our Donor Follow Up Team only. You can find out more about anonymous and direct contact on our website here. Anthony Nolan takes any breaches of this rule very seriously – any Contributions which are in breach will be removed and the relevant account cancelled.  
• Don’t provide any identifying details about a Transplant or stem cell collection:  in particular, if you refer to the hospital at which it took place, please don’t mention the specific date when it was received or, in the case of a donation, collected.  
• Don’t swear or use obscene, offensive, hateful, inflammatory, or abusive language. 
• Don’t spam and do not promote or advertise services or products: the Community is not a space to sell or promote services or products. Anyone doing so may have their post removed and account cancelled.    
• Don’t promote alternative therapies (treatment outside current medical convention): feel free to share your views about alternative therapies, but do not promote them or make claims that they can cure any blood cancer or disorder. Be aware that following alternative therapies can adversely affect any medications you may have been prescribed by your medical teams. Do not encourage anyone to ignore medical experts’ advice on treatment in any way.  

• Don't impersonate any person or misrepresent your identity or affiliation with any person or give the impression that a Contribution emanates from us: posting in such a manner will affect other members' confidence in the Community and could leave both you and Anthony Nolan open to potential liability. 
• Don’t infringe copyright or third-party rights: this may put you or Anthony Nolan at risk of prosecution.  

SUPPORTIVE ATMOSPHERE  

DO 

• Do be supportive and respectful: encourage open discussions. Please be especially nice to new members and welcome them into the Community. 

• Do celebrate differences and disagree respectfully. 

DON’T 

• Don’t discriminate against, bully, threaten, harass, or intimidate, embarrass, alarm or annoy any member: personal attacks are never justified and will not be tolerated on the forum or in private messaging.  
• Don’t create multiple accounts or pretend to be someone else. We may remove any content, delete accounts, and ban members who do this or whom we suspect of doing this. 
• Don’t use this space to be critical of individuals (including health professionals), organisations or treatments: any such Contributions will be as deemed inappropriate by Anthony Nolan.   
• Do not name individuals, including health care professionals, or organisations, as this could leave both you and Anthony Nolan open to prosecution if your comments are interpreted as libellous or defamatory. 

STAYING SAFE

If you are going through or recovering from a Transplant or supporting a family member going through or recovering from a Transplant, there are times when you may feel profound lows which are emotionally and physically draining. We encourage you to share these feelings openly, as well as offer others advice about how you got through these difficult times. However, all mention of intention to commit suicide, assisted suicide, or self-harm will be removed from the site while we investigate the matter and offer direct support to the person involved.  

If while you are using the Community you are concerned about the wellbeing of a fellow member, for example if someone seems to be displaying severe emotional distress, encourage that user to contact the Samaritans (116 123).  

We respect your confidentiality. However, if you ask us to or if we believe that you or someone else might be hurt, in danger, or being exploited by someone in a position of authority over you, or if we have safeguarding concerns, we may contact someone else, for example by calling 999 or contacting other appropriate authorities.  

• If we do contact the emergency services, we will only share the relevant information needed to help you or someone else stay safe. Unless it would put someone else in danger, we will always tell you if we’ve contacted the emergency services or other authorities.  

We advise you to exercise caution if you want to meet another Community member. If you do choose to meet another Community member you do so at your own risk and should take common sense precautions.  

RESPECT FOR PRIVACY 

This Community exists in the public domain and your posts will appear in internet searches. 

DO 

• Do be very careful with your personal information which can identify you. We strongly advise against using your full name and we also advise you not to include personal details such as your home address, telephone number or email address in your posts.  

DON’T 

• Do not share your profile on any social networking site as other people could find out a great deal of personal information about you from it which could constitute a security risk. Please be aware that any piece of personally identifiable information can be matched together with other information on the internet which could potentially identify you. 

• Do not post another person’s personal information. We will remove any posts which reveal confidential or personally identifiable information about patients or any of our donors (including donors of blood stem cells, bone marrow or umbilical cord blood). 

You can find out more about data protection and privacy on the Information Commissioner’s (the supervisory authority in the UK) website: https://ico.org.uk/your-data-matters  

For more information about how Anthony Nolan protects your data, read our privacy policy.  

PARENTS AND LEGAL GUARDIANS OF INDIVIDUALS UNDER 18

DO 

• Keep personal information about any individual(s) under 18 in your care to a minimum for their protection and to ensure they cannot be identified outside of the Community. 
• Please remember that this Community is a public forum and once you post something, it can be copied, shared, and re-posted.  

DON’T 

• Do not supply the full name(s) of any individual(s) under 18 in your care.  

MODERATING THE COMMUNITY 

We moderate the Community reactively. This means your posts or private messages will appear almost immediately because we do not screen them before they go live. If you’re trying to post a message which contains an email address, it will fail to post and we’ll remove it.  

The Community is only moderated by our staff Monday to Friday, from 9am to 5pm. It will not be formally moderated over the weekends or during UK public holidays.  

If you find anything in this Community offensive, inappropriate, or in breach of these House Rules, please tell us using the ‘flag’ button which is on every message. You can also reach us using the 'contact us' button at the top of every page or by emailing us on patientinfo@anthonynolan.org We will take appropriate action as soon as we reasonably can. 

The Patients and Families Manager (and in their absence, the Head of Patient Involvement) will help you share your experiences and direct people to additional support and information.  

We also have a small team of dedicated Online Community Champions who act as volunteer moderators. They will endeavour to ensure all discussions within the Community are inclusive and supportive, and will also make sure people are welcomed into the Community and can find the information they need. 

Our Online Community Champions each have personal experience of Transplant, either as a patient, parent or family member. 

Please post in English only as we cannot moderate in other languages. Posts in other languages will be removed.  

If your account is cancelled and you would like to create another, please contact Anthony Nolan for permission by emailing patientinfo@anthonynolan.org.