Making it Better Together

Making it Better Together: Living with lung conditions

It’s more than listening… working with people to make a difference together

The workshop brings people together to look collectively at what we can do to support the independence and well-being of people with lung conditions.

The first workshop held in February 2018 was the first of its kind and included everyone involved in the respiratory care pathway, – including SASH clinical staff, GPs, ambulance crews, charities, and local authority representatives. Most importantly, people with COPD and other lung conditions and their families were involved in the conversation and dialogue with professionals as equal partners, not as passive recipients.

The workshop was designed to give all participants a chance to hold meaningful conversations with others, listening to different perspectives and building a collective understanding of what matters to people living with lung conditions.

We hope to learn from the event and continue with the work that we have started. Keep reading below to see the work we have done as group and what you can do to get involved.

February 2018 workshop

People with COPD (chronic obstructive pulmonary disease), carers, voluntary sector, local authority and healthcare professionals came together to discuss what we can do together to support the independence and well-being of people with lung conditions. Participants allocated yellow stickers to topics and themes they agreed with, could relate to, or what they felt was most important.

Top themes identified

At the point of diagnosis

• I’ve been diagnosed… now what? What does it mean to live with the condition?

Living and adapting to the condition

• Negative emotions accompany when living with COPD
• Desire to remain independent
• Living with other medical conditions as well as COPD
• How are treatments recommended to me?
• What are the options to help me cope at home?
• Getting an appointment is difficult
• Why don’t healthcare professionals talk to each other?

Living well

• Building confidence by pushing myself and achieving goals
• Sharing experiences with others similar to me
• Keeping up general well-being

Dealing with crisis

• Fear of next ‘attack’ or ‘flare-up’
• Prefer to stay at home if possible
• What are rescue packs? (Not having back-up antibiotics or steroids)
• To use the rescue pack or not, that is the question…

• Click each heading below for more information about the workshop sessions.

• Listening and learning from each other

  Storytelling and listening pairs

  To set the tone to the event, we heard from four participants (Dr Martin Mueller, Ron Coleman, Tom Pullen and Colin Archer – two citizens and two professionals) about what mattered to them, why they were here and what they hoped to see from the workshop.

  Then we got into pairs with someone that we hadn’t met before and listened to each other’s experiences of care. Each person talked for three minutes without interruptions, followed by three minutes for each pair to discuss and reflect what they learnt from each other.

• Brainstorming session

  World café conversations

  We started our brainstorming session in groups of 5-6 people to explore possibilities of what we can do.

  We started our conversation on the following questions:

  • What does being well and independent look like to people living with lung conditions?
  • What keeps people living with lung conditions and the families well and independent?
  • What can I do and whom can I work within this room to make this happen?

  There was a lot of energy in the room – everyone was engaged in dialogues with a lot of scribbling going on!

  After two rounds of conversations, we came back together as a group to discuss  the common themes that had emerged through conversations.

• Action planning session

  Open space

  After the break, we had the action planning session using Open Space agenda. The group was asked if anyone wanted to do something about the conversations that they have had in the previous session.

  After moments of silence, five participants volunteered on topics that they were passionate about and these volunteers became the team leaders in these topics.

  Then we created a marketplace-like setting, where other participants were asked to roam around and window-shop on the projects.

  Participants were asked to join in whichever group conversation they were interested in or energised by.

  As it was getting late in the day, many participants had to leave early. We discussed connecting with participants that had left earlier in the workshop to further generate interest and energy for the projects.

  Team leaders were also asked to produce reports at the end of the session to consolidate plans to meet up. Then, at the end of the session, each team leader announced to the group about the interest they have gained from other participants and what their plans were.

  We agreed that these individual projects will be followed up with Bonnie (Darzi Fellow) in 4-6 weeks’ time, who will be there to provide support.

What is next?

We want to continue this work in the same collaborative spirit as the recent workshop.  We cannot do it alone and we need your input so we have a few ways for you to get involved.

Network with other participants

Participants from a wide range of organisations are involved in Making it Better Together. Please contact Bonnie Koo if you would like to network directly with one of the workshop participants.

Organisations include:

• Altogether Better
• Caterham Valley Medical Practice
• East Surrey CCG
• First Community Health and Care
• IAPT psychological therapies
• IC24 (out of hours service)
• Local Pharmaceutical Committee (LPC)
• Moat House Surgery
• Quit 51
• Reigate & Banstead Borough Council
• Richmond Fellowshop
• SASH@Home
• Smallfied Surgery
• South East Coast Ambulance Service NHS Foundation Trust (SECAmb)
• Surrey and Sussex Healthcare NHS Trust (SASH)
• Tandridge District Council
• YMCA East Surrey

Get advice or tools for your improvement work

Contact Bonnie Koo for more information. You can also contact Sue Jenkins, director of kaizen, or Lucy Beach, programme manager for Altogether Better.

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