Starting a support group

Introduction to Asthma + Lung UK’s Support Groups

Support groups provide a listening ear and a sense of community. They provide an opportunity to meet local people who have similar experiences with their lung health. A support group can be a community hub and foster friendships and connections.

Support groups are also good for your lungs. Studies show that attending just one of our support groups leads to a reduction in unplanned hospital admissions. Feedback shows almost 100% of attendees report health improvements. A University of Kent study showed a 42% reduction in GP appointments and a 57% reduction in unplanned hospital admissions.

How to be a representative of Asthma + Lung UK

• Session leaders should aim to create a warm and welcoming environment, whether delivering a session online or face to face. Remember you are representing Asthma + Lung UK, and will often be the first contact people have with the charity.
• Distinguish between your own opinions and Asthma + Lung UK’s views. For
  example, use phrases like “Asthma + Lung UK say…”
• Make sure that your own views aren't coming across too strongly. As an Asthma + Lung UK representative, people will be unsure if you are speaking on your own behalf or as an Asthma + Lung UK representative, so be careful to differentiate.
• Be particularly careful not to give out medical advice. Even if you feel that you are just giving your opinion, you have to be very careful that it is not taken as Asthma + Lung UK’s position on something. For example, if someone asks for advice on their medication, make sure not to offer your opinion. Instead, say something like: “You should check with your GP or asthma nurse.” Please also signpost to our helpline when appropriate.
• If you are unsure of Asthma + Lung UK’s position on something, tell the group you will find out and get back to them, then ask your Community Network Coordinator. You can reach us at supportgroups@asthmaandlung.org.uk.
• You may want to wear an Asthma + Lung UK t-shirt or pin while leading sessions.

Why are our groups volunteer led?

It’s important to us that our support groups are peer led and run by people with lived experience. This could be experience from living with a lung condition or from caring for someone with a lung condition, either personally or in a professional capacity – for example, respiratory healthcare professionals.

Also, we need people who know their communities. You know your local GP surgeries, walk-in clinics and community centres. You know how to reach people in your local area, and we are on hand to support you in your journey.

Finding a meeting space

Your local pubs and supermarkets often have cheap or free rooms for local groups to use. You can also try your local community hubs and centres, as well as religious organisations such as church halls or mosques. You should ensure that the meeting space is easily accessible and has good transport links and/or parking.

Finding members

We will initially provide you with posters and flyers to help you get your group established. You can use these to advertise the group in your local area. 

Places to advertise include:

• supermarkets
• community centres
• GP surgeries and walk-in clinics – ask GPs if they will distribute leaflets to patients and do referrals on your behalf
• voluntary and faith organisations
• Citizens Advice
• local Age UKs
• social media
• local press and radio – see our press guide.

Connecting with healthcare professionals

Connecting with your local GP surgeries and clinics will be invaluable to you in finding members. Healthcare professionals will provide you with referrals, but they can also be a great resource for making connections and looking for speakers for your group. It is important that you connect with your local healthcare practitioners regularly, for introductions and to provide updates about the group.

Types of healthcare practitioners you could contact include:

• GPs
• walk-in clinicians
• respiratory nurses
• pulmonary rehabilitation specialists
• pharmacists.

Finding other volunteers to help

You might want to look for one or two more volunteers to help share the work. You can contact your local voluntary services and GP surgeries to ask them to distribute our ‘Looking for volunteers’ flyers. Just contact us and let us know you would like some and we’ll send some over to you!

Holding meetings

Social meetings are encouraged, but most of your meetings should have a speaker or an activity session leader. We ask that, on average, 8 of 12 meetings should focus on lung health.

We recommend the following format:

• 20 minutes introductions/tea, coffee and chats time
• 45 minute speaker or activity leader, e.g.
• 20 minute post-speaker/activity session chat.

Speakers/session leaders

We can provide your first speakers, either face to face or online depending on location. However, we recommend that you make strong links with your local respiratory healthcare professionals, who will be able to signpost you to more speakers and pulmonary rehabilitation specialists. You can also fundraise or request donations to have a paid session leader come to your group. Please contact us if you need any promotional material to support your fundraising activity.

Ideas for sessions:

• healthcare professional presentation or talk
• pulmonary rehabilitation group session
• chair-based exercise session
• Singing for Lung Health session – contact us to find out more
• mental wellbeing session.

Chairing a group session

You should ensure that people understand ‘Chatham house rules’, i.e. what is said in the meeting, stays in the meeting.

We can provide training on leading and moderating a group session. You should ensure that everyone is encouraged to speak, but no one is pressured to speak. Remember that some people might just want to listen and might not be ready to share their experiences yet.

You might find some people naturally dominate conversations. You should encourage them to let others share by asking to hear from anyone new, or asking to hear from anyone who hasn’t yet shared.

For more information on our confidentiality policy and volunteer guidance, please get in touch at supportgroups@asthmaandlung.org.uk

Chairing an online session

We recommend using Zoom for your online platform. We hold regular Zoom training sessions, so please get in touch at supportgroups@asthmaandlung.org.uk if you are interested.

You should familiarise yourself with muting and unmuting people, as well as letting people into the meeting from the waiting room.

We recommend that you limit the number of sign-ups to your group. We usually find that about 50% of people who sign up attend on a regular basis, so we recommend capping session sign-ups at a maximum of 100. That way you’ll have about 50 people join. You might feel comfortable with fewer attendees, which is fine too.

Put five to ten minutes aside at the beginning of the first session to introduce
yourself and to make sure everyone knows to put themselves on mute when they’re not talking. You should also make sure everyone knows how to use reactions, how to raise hands, how to use breakout rooms and how to access the chat. Remember that this might be different depending on which devices members are using (e.g. phones, tablets or laptops).

Welcoming new people – including newly diagnosed people

When people attend their first meeting, welcome them to the group, and introduce them to the other members. You should keep a secure record of attendees, including names, phone numbers, email addresses and lung conditions. If you would like more information about data protection, please contact us at supportgroups@asthmaandlung.org.uk.

You should be mindful that newcomers might also be newly diagnosed and might still be coming to terms with their condition and may be upset by talk of end of life. Please signpost newly diagnosed people to our helpline for further support.

Membership template

Here is an example of a membership template you could use to keep your records. You can also find a membership template in your starter pack.

• Names
• Phone number
• Email address
• Lung condition
• Gender
• Age
• Emergency contact name and phone number

Remember that you must get permission from an individual before you collect,
store or use any data that refers to them. Please familiarise yourself with our data protection regulations, including how to hold information securely, and only share it with those who need it as part of their role with Asthma + Lung UK. Remember to shred or delete any information that is no longer in use.

Dealing with difficult situations

You might get people who attend your group who are disruptive. However,
remember that Asthma + Lung UK Support Groups must remain accessible and
open to all. We can provide coaching and training for handling difficult members, and we can help you manage the situation and provide problem solving andcommunication strategies.

If you have concerns about a group member, you can call us to discuss your
concerns. However, if you have any concerns for anyone’s safety, you should report your concerns to the police. You can reach the non-emergency police on 101. In an emergency, call 999. In the event that you have had to call the police, please let us know so we can help.

For more information on safeguarding people, please contact us at supportgroups@asthmaandlung.org.uk. Details will also be discussed during your Volunteer Induction.

Looking after yourself

Being a volunteer can be incredibly rewarding. You most likely are volunteering
because you want to help people and provide support.

However, it is important that you look after your own wellbeing too. You might want to limit the hours that you take calls and emails about the group, or the days of the week. We recommend that you share the admin with another volunteer in case youare unwell or want to go on holiday, or just need some time off!

Remember, you can use some of your group start-up fund to purchase a mobile to act as the group phone line. We recommend this as a way to keep your personal life separate from the group, and should you want to take a break or retire, you can hand the phone over to the next volunteer. We also recommend that you set up a separate email address for the group. You might want to use something along the lines of your_location_supportgroup@gmail.com.

Handling complaints and grievances

If anyone wished to make a complaint about your support group to Asthma + Lung UK, you must pass our details along to them. You should then contact us and let us know what has happened. We will work with you to resolve the issue.

Support and training

We offer a range of training for new volunteers, as well as refresher sessions for
long-term volunteers. This includes mental health first aid training, volunteer
inductions, lung health awareness sessions, training on leading a meeting and
mediation upskilling. Please get in touch if there is anything specific you are looking
for, we might be able to help.

Dealing with bereavement

Bereavement can affect the whole group, and bring up a lot of difficult emotions,
especially if attendees have the same lung condition that affected the deceased
member. As group leader, it is important to signpost to organisations that can help.

Data protection tips for support group leaders

Here are the government guidelines on Data Protection.

When emailing group members, always be sure to BCC, so that members’ email
addresses are kept private and secure. Always ask for permission before giving out
someone’s details, even to Asthma + Lung UK.

Only store necessary information, e.g., names and contact details. Make sure to
store email addresses on a password-protected spreadsheet, on a locked device.
Be sure to contact everyone on your spreadsheet on a two-year basis to confirm
they still wish to be included. You may wish to set an annual reminder on your phone
to help you remember.

When managing personal data, you should:

• take care not to share contact details when emailing multiple people
• be careful when sharing usernames and other personal data for access to online
  resources
• provide or make available sufficient information to data subjects, pupils, student,
  parents and carers to raise awareness about the personal data captured during
  online session recordings, particularly where cameras are switched on.

Funding the group through fundraising

We provide a start-up grant of £200. This is a one-off, and you will be expected to
fundraise for your group to keep it going. Our fundraising team are on hand to help
you with helpful tips and hints - see our fundraising guide for more information.