Online Support Meetings Terms of Use

About Online Support Meetings

Lymphoma Action online support meetings aim to provide a safe, confidential place where you can express your thoughts and feelings, gain insight from connecting with others living with lymphoma, and access support and information. 

Our online support meetings are facilitated peer support meetings, which means that people affected by lymphoma get and give support to each other, helped and supported by our facilitators.  If this isn’t the type of support you are looking for, please explore our other support services.

Facilitators are Lymphoma Action staff and trained volunteer Online Support Facilitators. Their role is to ensure that meetings run in accordance with our service standards and provide a safe, inclusive and confidential environment for participants.  They will listen, seek to understand your experience and help address any questions or worries you have, but they are not counsellors, are not medically trained and cannot give advice.

Meetings are hosted on one of the charity’s official Zoom accounts. They run on a monthly basis and last for an hour, following a common structure.

Online support meetings won’t meet your needs if you are looking for one-to-one support, counselling or therapy, befriending, a social club or community group, bereavement support, medical or other advice.  If you are looking for these types of support, please call the Lymphoma Action Helpline or contact your medical team about services near you.

Who can register and attend

Only people aged 18 years and over can register for or use our support meetings.  Children and young people under the age of 18 are not allowed to be present during any support meeting, including meetings attended by the parent or guardian of a child with a diagnosis of lymphoma.  This means that the child or young person must not be in the same room as the adult attending the support meeting.  

Only people resident in the United Kingdom, Channel Islands or Isle of Man can register for or use our support meetings.  UK residents temporarily working, studying or living abroad may be eligible. If this applies to you, please contact services.managers@lymphoma-action.org.uk for advice before registering.  We reserve the right to refuse service to anyone registering from a non-UK telephone number, postal or email address or who joins a meeting from outside the UK, Channel Islands or Isle of Man.

Only people who are personally affected by lymphoma are able to register for our support meetings.  Being personally affected means you either have a diagnosis of lymphoma yourself or are the partner, family member or close friend of someone living with a diagnosis. Individual support meetings have additional eligibility criteria; there is more information about this under the next heading.

You can only register for yourself, using your own contact details, not on someone else’s behalf.  This is because people have to want this type of support for themselves for it to be helpful and, also, because anyone using the service is agreeing to these Terms of Use and the privacy notice.  

People seeking a diagnosis or concerned that they might have lymphoma are not eligible to register for our support meetings. If you are in this situation, please read the information about getting a diagnosis and consult your doctor about any symptoms or concerns. Once a diagnosis is confirmed, you are welcome to register.

You must be in need of support around your own lymphoma or that of someone you care for to register. Registering for reasons other than that of getting peer support will result in being asked to leave a support meeting and closure of your registration. Unacceptable reasons include personal learning, such understanding how to run a support meeting, understanding more about lymphoma and how it affects others, or deciding whether to apply for employment or a volunteering role with Lymphoma Action.

Types of online support meetings and how to register

We offer a range of online support meetings at various days and times throughout the month. The full list, along with eligibility for each and how to register, can be found at Online Support Meetings. If you are unsure which support meeting is right for you, please contact services.managers@lymphoma-action.org.uk. We may change the support meetings we offer according to the needs of the service or service users.  

General support meetings can be accessed by anyone who has a diagnosis of lymphoma and is generally eligible for the service (see Who can register and attend, above). At least one support meeting is offered for each of the UK nations but any of them may be accessed by someone living in another part of the UK. 

Specialised support meetings are all UK-wide and eligibility for them is limited to people who are personally affected by that particular type or experience of lymphoma. Please see the information about each type of support meeting for their eligibility criteria. If there is no specialised support meeting for your type, treatment or experience of lymphoma, please join a general support meeting. 

Carers (the partner, family member or close friend of someone with a diagnosis) are eligible to join one of our Family, Friends & Carers support meetings, to get support for themselves and understand how best to support the person they care for. 

Any service user who needs a carer to join a support meeting with them to enable their participation is asked to contact the Services Managers at services.managers@lymphoma-action.org.uk, so we can facilitate this.

If you join a support meeting for which you are not eligible, we will ask you to leave that meeting and join one appropriate to your needs.

Registration for support meetings is via the online registration form.  By submitting the form, you are agreeing to these Terms of Use and our Privacy notice for support meetings (see below) covering use of your personal data.  

Registration is to the Support Meetings Service as a whole and you are asked to choose only one support meeting to join.  This is because there is usually more demand for places than we can provide as a relatively small charity, and we want to offer support to as many people as possible. If further registration forms are submitted, we will usually take the first one submitted and disregard the other(s).

After registration, if your needs change and you would like to change to a different support meeting, please email to services.managers@lymphoma-action.org.uk with your new choice of meeting or for advice about which is the best meeting for your needs. Please do not submit a further registration form.

Attendance

After registration, you will be sent an email invitation for your chosen meeting each month for as long as you are registered for the service. 

Lymphoma Action understands that people affected by lymphoma may have medical appointments or be unwell on the day, so attendance at support meetings is on a drop-in basis. This means you can join your meeting as and when you need or are able to, for as long as you need this type of support. 

Only registered service users can join support meetings.  Email invitations and the Zoom meeting details they contain are intended only for use by the person they are sent to.  You must not forward them to anyone else.  

If you decide not to attend your support meeting anymore for whatever reason, you can de-register by emailing to services.managers@lymphoma-action.org.uk.  

If you have not attended for six consecutive meetings, we will get in touch to ask if you want to change to a different meeting or de-register from the service, after which we may close your registration by default.  After this, if you need this type of support in the future, you are welcome to register again by completing the online form.  

Confidentiality

By registering for our support meetings, you agree to keep confidentiality, which means:

• You do not repeat or discuss with anyone outside of that meeting what other participants talk about or express
• You do not identify any participant as a user of the service or someone who is affected by lymphoma
• You ensure that no one else can see or hear any support meeting on your device.  You are asked to join meetings from a quiet, private space, but if you are unable to do this, you must wear earphones, so no one can overhear other participants, and you must shield the screen of your device from the view of others.

To protect your identity, safety and confidentiality, as far as possible, we display only the first or personal name of participants on screen in online support meetings.  Meeting facilitators usually change the name displayed on-screen, if necessary, before admitting participants to the meeting.  Please do not ask other participants for their full name or contact details.

There are limits to the level of confidentiality we can offer, which you need to be aware of and consider when deciding what you feel comfortable disclosing at support meetings. 

• Although all service users agree to keep confidentiality as a condition of registration, we cannot guarantee that they will do this.
• We may need to break confidentiality and report your identity and what you say or do at a support meeting in a limited number of circumstances, which are listed below.  Wherever possible, we will seek your consent to disclose this information or tell you that we are going to do so, but that would not be appropriate in some of these situations. 

Lymphoma Action may break confidentiality because of a legal duty or duty of care to our service users, volunteers and staff in the following circumstances:

• We have a concern that you or someone else is at risk of harm or of harming someone, including yourself.
• We have a concern that you or someone else may be involved in terrorism or other serious crime.
• We have a concern about the health or safety of you or someone else and you are not able to call for help yourself or refuse to do so.
• Your words or actions appear to break the law in relation to equality and discrimination (see Code of Conduct, below).
• A court order requires the charity to do this.

Code of Conduct

We welcome everyone to our support meetings, regardless of background, heritage, identity, belief, ability, means or status.  

By registering for our support meetings, you agree to treat everyone using or providing the service with respect and courtesy, and have the right to expect to be treated in this way by others.

Treating others with respect and courtesy includes arriving promptly for support meetings.  Anyone joining after a support meeting has started will remain in the virtual waiting room until they can be admitted with minimal disruption.  Meetings are locked 10 minutes after the scheduled start time, after which no one will be admitted other than in exceptional circumstances and with prior agreement of the Services Manager.

Lymphoma Action does not tolerate bullying of any kind.  We may exclude from a support meeting and/or end the registration of anyone who uses abusive, threatening, discriminatory, inappropriately sexually explicit or intentionally offensive language or exhibits hostile or aggressive behaviour or behaves in a way that prevents the service being accessed or used effectively by others. 

Service users are free to talk about their own experience of diagnosis and treatment, good and bad, but must not make allegations of negligence or malpractice against named healthcare professionals or organisations at our support meetings.  Facilitators will intervene to prevent this and may ask anyone making such an allegation to leave the meeting. 

Language or behaviour that contravenes the law may be reported to the police. 

Privacy notice for support meetings

A privacy notice covers your registration for our support meetings. 

When registering for our support meetings, you are required to provide personal data (name, address, telephone and email details) to enable Lymphoma Action to provide the service to you. The legal basis for collecting and processing this information is legitimate interest. We will use it only to send you information about the support meetings and your use of the service, for as long as you are registered.  We will not send you marketing or fundraising information and will never pass your details to any other organisation. 

Information about support meetings covers email invitations and reminders for meetings, information about changes to the service or your use of it, and occasional contact about urgent situations such as last-minute cancellation of a meeting or a situation arising at a meeting.  If you decide you do not want to receive this information, we will need to close your registration.

This privacy notice is different from opting in to receive information from Lymphoma Action about things like events and services or fundraising, to which you have to give consent separately.  You can read Lymphoma Action’s general privacy notice here and sign-up to hear from us here, if you choose.

Further information 

If you would like more information about online support meetings or have any questions about these Terms of Use, please contact the Services Managers at services.managers@lymphoma-action.org.uk.