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, you can find all our other support services here.

Facilitators may be Lymphoma Action staff or 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 attended by either an adult with lymphoma or the parents of a child with a diagnosis of lymphoma.  This means that they 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 enquire to services.managers@lymphoma-action.org.uk before registering.  We reserve the right to refuse service to anyone registering from a non-UK mail 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 or use 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. 

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

People seeking a diagnosis of lymphoma or concerned that they might have lymphoma are not able register for or use our support meetings.  If you are in this situation, please read the information about getting a diagnosis here and consult your doctor about any symptoms or concerns. 

Anyone who registers for or attends support meetings for reasons other than that of support for their lymphoma or that of someone close to them, will be asked to leave the meeting and will be de-registered.  Unacceptable reasons include personal learning, such understanding how to run a support meeting, general curiosity about lymphoma and how it affects others, and 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 and how to register for each can be found here.  We may change the support meetings we run, according to the needs of the service.

General Online Support Meetings are offered for each of the UK nations and can be joined by anyone eligible for the service (see Who can register and attend, above), including carers.  

Specialised 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.  

Registration for Online Support Meetings is via the online registration form and means registration to the Support Meetings Service as a whole.  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.  

At registration, you can choose to join one General Online Support Meeting and any specialised support meeting for which you are eligible.  If you are not eligible for a specialised support meeting you have joined, we will ask you to leave the meeting and join one more appropriate for your needs. 

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

Only registered service users can join support meetings.  Email invitations and the Zoom meeting details they contain are intended only for use of the individual they are sent to.  You must not forward them to anyone else.  If your partner, family member or close friend would like to join your support meeting with you, even if this is on the same device, they must register in the same way as any other participant, if they are eligible to do so, and will be sent their own invitations.

Once registered for an on-going Online Support Meeting (not Special Focus Online Support Meetings), you can request a change to any other support meeting for which you are eligible by emailing the Services Manager who runs your current meeting.

If you decide not to attend Online Support Meetings anymore, you can de-register by contacting the Services Manager who runs the meeting.  

Attendance is on a drop-in basis, so you can join your meeting(s) as and when you want, for as long as you need this type of support. However, if you have not attended your support meeting for an extended period, 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 de-register you by default.  After de-registration, if you need support again, you are welcome to register by completing another online form.  

• For general support meetings and the specialised meetings Active Monitoring, Family, Friends & Carers, Rare Lymphomas, and Young Adults, the period of non-attendance is six consecutive months.
• For the specialised support meetings Cutaneous Lymphoma and Advanced and Refractory Lymphoma, the period is 12 months.

Confidentiality

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

• You do not repeat or discuss with others what other participants talk about or express in a support meeting outside of that meeting
• You do not identify any participant as 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; if you are unable to move away so that others cannot hear audio from the meeting, you must wear earphones and you must also shield the screen of your device from view.

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.

However, 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.

Privacy notice for support meetings

A privacy notice covers your registration for our support meetings.  This is different from consent to receive information from Lymphoma Action about things like events and services or fundraising, for which you have to ‘opt in’ separately.  You can read Lymphoma Action’s general privacy notice here and sign-up to hear from us here, if you choose.

When registering for our support meetings, you are required to provide your name, address, telephone and email details, and agree to receive information about our support meetings and your use of them for as long as you are registered for the service.

Contact about support meetings covers email invitations and reminders for meetings, email updates covering information provided at support 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 information about support meetings, we will need to de-register you from the service.

Code of conduct

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

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 to other participants.  Meetings are locked 20 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.

We will not tolerate bullying of any kind.  We can exclude from a support meeting and/or end registration for the service of anyone who uses abusive, threatening, discriminatory, inappropriate 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 must not make allegations of negligence or malpractice against 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.  This is not intended to prevent participants talking about their own experience of diagnosis and treatment, good or bad.

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

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