COPD Community Connectors

November 2023 – March 2025 | Published 31 May 2025

About the programme

The Community Connectors Programme is a volunteering opportunity for people living in Southend who have chronic obstructive pulmonary disease (COPD) or care for someone with COPD. Community Connectors are people who want to help improve care services and reduce health inequalities so that everyone can live well together.

The programme is designed to gain a deeper understanding of the lived experience of those living with COPD when accessing support and living a healthier life. It is also an opportunity to share what works well. Community Connectors engage with members of the public, health services and decision-makers to help shape the future of services that are needed within the local community.

This initiative is delivered through the Community Connectors Programme, a project delivered in partnership with Southend Association of Voluntary Services and Healthwatch Southend, funded by the Mid and South Essex Integrated Care Board and supported by Southend City Council.

The programme’s success was made possible by working with local community-based partners including Breathe Easy.

Living with COPD

Chronic obstructive pulmonary disease (COPD) is where air cannot get in or out of the lungs easily (the airflow is obstructed). COPD is a common condition that mainly affects middle-aged or older adults who smoke or have smoked. Jobs where people are exposed to dust, fumes and chemicals also increase the risk of COPD, as well as having chest trouble or asthma in childhood. COPD includes long-term (chronic) bronchitis and emphysema.

People living with COPD face a range of challenges. Those living with the condition report an impact on their mental health and wellbeing. This leads to a loss of confidence which makes it increasingly difficult to ask for support as they feel that their independence will be significantly impacted. They experience a sense of lost identity due to not being able to live how they once had. People with COPD say that they feel lonely, isolated and embarrassed.

Why Southend, Castle Point and Rochford?

The programme was delivered in these areas because of the poorer outcomes experienced by COPD residents:

• COPD prevalence of 28-30 per 1,000 people in Southend and Castle Point & Rochford, compared to 24 per 1,000 across Mid and South Essex
• 40% of hospital attendances with COPD listed as the diagnosis in Mid and South Essex during August 2022-July 2024 were from Southend and Castle Point & Rochford
• 61.8% mortality rate from COPD in Southend compared to 52.9% in England
• 1,600 patients in Southend were admitted or diagnosed with COPD via A&E attendance from August 2022-July 2024
• 1,392 patients in Castle Point & Rochford were admitted or diagnosed with COPD via A&E attendance from August 2022-July 2024
• 3 of the 6 wards supported by the project are amongst the most deprived in England
• 171 additional deaths from chest diseases in these wards in 2022

When launched in 2022, the project initially focused on 6 wards in Southend: Milton, Kursaal, Victoria, Westborough, Shoeburyness and West Shoebury. The project’s reach was extended in November 2024 to Castle Point and Rochford.

The project in numbers

• 12 active Community Connectors
• 700.5 hours volunteered by Community Connectors
• 45 partners engaged or included in the project
• 29 steering group meetings
• 123 steering group meeting attendances
• 60 drop-in sessions
• 1,162 drop-in session attendances
• 165 Stretch and Breathe classes
• 1,348 Stretch and Breathe attendances
• 50 professional and partnership engagements
• 35 community engagement events or sessions attended

Challenges identified by Community Connectors

Health challenges

• Poor links between relevant health services
• Sharing of medical records
• Services not continuing for long enough
• System is too slow
• Access to medication at all times regardless of circumstances

Environmental challenges

• Services not being local
• Buses not giving you time to sit down
• More disabled parking bays needed
• Lack of places to recuperate – chairs, benches in town and parks

Personal challenges

• Easily accessible information in all formats
• Dietary advice
• Local support groups
• Lack of information about the condition

Key achievements

Working with the Pulmonary Rehabilitation Team

Pulmonary Rehabilitation has long been recognised as a critical component in managing chronic respiratory conditions, but fewer than 20% of eligible patients are currently taking part.

The Community Connectors are now better informed about the service and promote it among patients, the public and other healthcare professionals. A Community Connector now attends sessions to help new patients feel comfortable, provide reassurance, answer basic questions and offer peer support. Their presence helps ease anxiety and encourages patients to engage more confidently in the session.

Jenny Gates, Clinical Lead for Therapy Services, said: “We know that Pulmonary Rehabilitation is essential for chronic respiratory management but we need to understand why patients aren’t taking advantage of it. Talking directly with the Connectors has already added some valuable insight and we are making some headway now. The group have offered a range of ideas, many of which have been integrated into the Pulmonary Rehabilitation Team’s Quality Improvement Plan for 2025.”

Stretch and Breathe Classes

Active Life started to deliver Stretch and Breathe classes at Shoebury Youth Centre in May 2023. The class started with 10 people which quickly grew to 15 people. There are now 2 classes with 14 people in each class. People are coming across the city to attend at Shoebury Youth Centre.

In September 2023 another class was introduced and throughout 2024 two classes were delivered each week supported by funding from ROSCA. In 2025 funding from A Better Care Fund enabled Active Life to start classes in Westcliff and Rochford.

85% of people who attend Stretch and Breathe either maintained or improved their health since leaving Pulmonary Rehabilitation. All patients assessed enjoy the programme and describe it as being a safe place to exercise and continue to share their lived experiences.

Public Health are looking to fund classes across the borough from March 2025 to March 2026 as part of their preventative programme.

An attendee said: “It is so much easier to carry on with the exercises when there is a ‘communal’ experience element of doing them in the company of others! And with the continuing guidance and encouragement of the instructors. Thank you.”

Working with the Community Respiratory Team

The Community Respiratory Team attended the COPD Drop Ins to gain insight from the group to see how they can improve services for patients and healthcare professionals.

Working together led to an idea around improved education which transitioned into RESP, respiratory education and support programme. This has gone from strength to strength and a GP surgery now wishes to trial this pilot once funding has been secured.

The Community Connectors will continue to be involved and will attend the open session to support newly diagnosed COPD patients or those that just require more understanding on managing their condition.

Janis Dunne, Community Respiratory Clinical Lead, said: “I wish to thank all the COPD Community Connectors for your valued input and opinions. I look forward to continuing my visits and I hope by having these get-togethers we can share ideas which can then be turned into reality.”

COPD Drop-In

The COPD Drop-In provides a vital support network for individuals in Southend living with COPD and other respiratory conditions. It offers a safe, welcoming space where participants can speak openly with others who share similar experiences, fostering a strong sense of community and mutual understanding.

Group members report feeling heard and valued, with each person encouraged to contribute to discussions and share useful information. This peer-led approach ensures that lived experience, personal insight, and mutual support are central to every session.

The drop-in regularly covers a wide range of practical and relevant topics, such as:

• Pulmonary rehabilitation
• Fraud and security awareness
• Fire prevention and smoke detector safety
• Breathing and psychological wellbeing
• “Making Every Contact Count” initiatives
• Accessing local support services

The sessions go beyond conversation, actively combating isolation and promoting mental and physical wellbeing. They play a key role in influencing local policy: issues raised during sessions are captured and relayed to senior council officials and decision-makers. This feedback loop has contributed to the ongoing development of more responsive and person-centred services in Southend.

A COPD Drop-In attendee said: “We all have problems in common and don’t feel so alone. The group helps overcome loneliness because it is sociable and we can make friends. We have inspirational talks and share information and help each other.”

Meet the Connectors

Ann – Community Connector

Ann was a community respiratory nurse for 18 years and a regular visitor to the local Breathe Easy group where she offered support, advice and care to individuals living with chronic lung conditions. Her strong relationships with members and deep understanding of respiratory health made her a trusted and familiar face within the group.

When Ann retired, she didn’t want to lose touch with the community she had supported so she joined the Breathe Easy committee bringing with her a wealth of knowledge. It wasn’t long before she became a Community Connector, a role she embraced enthusiastically. Ann could see the benefit of bridging the gap between healthcare services and community-based support and her transition into this new role felt like a natural extension of her nursing career.

As a Community Connector Ann works to improve access to local support networks for people living with respiratory conditions. She helps individuals navigate the healthcare system and empowers people to take more control over their health.

Ann also plays a key role in strengthening partnerships between patients and the pulmonary rehabilitation team by supporting new patients into the programme.

Her lived experience as a nurse combined with her passion for community health makes her an effective and inspiring Community Connector.

Patricia – Community Connector

Patricia is an active and inspiring Community Connector living with chronic obstructive pulmonary disease, so she understands firsthand the challenges faced by individuals with long-term health conditions. This lived experience motivated her to become a Community Connector. Sharing knowledge, offering support, and connecting people to services that can truly make a difference is what Patricia enjoys.

Patricia is deeply embedded in her local area. She founded and chairs Southchurch Hall Inspirational Parkers (SHIP), a community group dedicated to celebrating and improving Southchurch Hall Gardens, a cherished green space in the heart of Southend. She is also an ambassador for Keep Britain Tidy and chairs the Independent Advisory Group to Southend Police, where she advocates for fairness and equality.

Patricia’s work as a Community Connector demonstrates the profound impact one person can have when they combine lived experience, local knowledge, and a commitment to community wellbeing.

Mandy – Community Connector

Mandy is a retired civil servant with over 30 years experience working as a senior policy advisor on key issues such as public health, regeneration, recycling and homelessness. She has always had a strong commitment to improving lives and supporting communities.

Mandy said: “In recent years I’ve cared for family members and friends with chronic conditions such as COPD, cancer and dementia. These experiences gave me a deep understanding of the challenges faced by both patients and carers and a desire to use that insight to help improve services for others. However, being a long-term, full-time carer for elderly relatives also left me increasingly socially isolated and disconnected from the wider community.

Becoming a Community Connector has been a turning point. It has allowed me to re-engage with issues I once advocated for on behalf of loved ones while also giving me a huge sense of purpose. Through the programme I rediscovered skills I can share with others, found a vibrant new social circle and regained the confidence that I had gradually lost. Most importantly I feel that my voice is being heard – I feel valued. Knowing that I’m now helping others navigate their health and wellbeing challenges is incredibly rewarding and deeply motivating.”

Project outcomes

Reduction in health inequalities

The Community Connectors are located in areas with historically high areas of deprivation. A fundamental driver for health inequalities improvement is for residents to ensure they are recognised as partners in our system. The Core20PLUS Connectors inform our understanding of the drivers of inequalities experienced.

Increased community awareness

The Community Connectors have delivered, partnered in and attended a wide range of community-based projects and events to help raise awareness of COPD and the importance of a patient voice.

Improved access to services

Connectors enable people who face barriers in accessing services to obtain information and the support they need.

Increased confidence and skills

Community Connectors have grown the knowledge, skills and confidence to help their communities and influence change.

Deeper understanding of patient issues

Community Connectors share their lived experiences and the challenges faced by their peers, offering valuable insights that go beyond statistics. This firsthand knowledge helps the system gain a deeper, more human understanding of the real issues affecting the community, particularly around long-term conditions like COPD.

Sharing of insights

Conversations shared with partners including:

• Voluntary, Community, Faith and Social Enterprise sector
• Southend City Council departments
• Southend Healthwatch
• South East Essex Alliance
• Mid and South Essex ICB
• Ward councillors

Monthly and quarterly reports sent to stakeholders and partners with more in-depth analysis and insights.

Increased influence through sharing

The rich intelligence gained by sharing of lived experiences means individuals feel they are heard and are able to shape and influence care and wider civic areas.

Partner comments

Krishna Ramkhelawon, Director of Public Health, Southend City Council: “The Public Health team supports the work led by the COPD Connector Steering Group and this partnership and insight continue to shape the future of the programme. I attended the Forward Planning Workshop at the Roslin Hotel, and the great insight helped realise the potential to incorporate the good practice into the Council’s Healthy Lifestyles contract. Following on from this event, Southend City Council funded an extension of the Active Life’s Stretch and Breathe service offer to enhance learning and explore its long-term integration into the Healthy Lifestyles contract.”

Glyn Halksworth, Director of Regeneration, Housing & Regulatory Service, Southend City Council: “We are very aware of the role that houses have in the health of those who call them home. Being part of the Forward Planning Workshop at The Roslin was important and helped further inform us of the impacts the homes which the councils provide and those rental properties which we licence can have. This has helped to inform the work we are bringing forward through our Damp, Mould and Condensation Strategy and our Warm Homes programme.”

Cally Hayes, Delivery and Engagement Manager, South East Essex Alliance: “Working as part of the COPD Community Connectors Steering Group and being involved in the delivery of the programme has helped bring the health inequalities faced by those with respiratory conditions to the fore. Getting to know the Connectors themselves and learn from their experiences and watch them grow in confidence, in their management of their own condition but also in their role as advocates for those within their communities living with COPD has been inspirational and impactful. Facilitating and embedding the Connectors relationships within their neighbourhoods and build relationships with Primary Care Networks, COPD community Teams and their communities has been beneficial in increasing health literacy in the community and increasing professionals awareness of the challenges faced by those with COPD.”

The Health Creation Alliance

The Health Creation Alliance is the only national cross-sector group addressing health inequalities through Health Creation. The mission is to increase the number of years people live in good health in every community and the ambition is to ensure that Health Creation sits alongside treating ill health and prevention of illness, and that it becomes business as usual across the system.

Health Creation is the process through which individuals and communities gain a sense of purpose, hope, mastery and control over their own lives and immediate environment. When this happens their health and wellbeing is enhanced.

In May 2023 all the groups met together to discuss health inequalities, look at challenges within the neighbourhood and help identify solutions to strengthen community engagement and co-production. These meetings created a “Charter” to help embed and support change within the system to enable positive outcomes for people living with COPD.

The Health Creation Alliance Commitments

• We listen with curiosity and the intent to understand
• We use positive body language and make sure people don’t feel rushed
• We provide realistic expectations, even when this is difficult
• We are honest with our feedback to support improvement
• We value lived experience of individuals and communities
• We recognise the skills and talents of local people
• We help others to understand the role of the connectors
• We enhance existing local assets and networks
• We are inclusive in our approach and make shared decisions
• We work to understand each other’s motivations

Working with lived experience

The success of the Community Connectors programme rests on Community Connectors being recognised as partners and influencers within the system. Achieving this requires the wider Integrated Care System to hear and act upon insight.

What the Community Connectors said

“Clear information communicated in a timely manner is essential.”

“I’d like to feel that my contribution has made a difference and receive feedback from the powers that be.”

“That the ideas and suggestions are followed up and we have tangible documents to evidence this.”

“There needs to be a follow up to this process so that it’s not a waste of time.”

“We need to think about what people need as well as what they want to improve their quality of life.”

“To be able to share information and educate younger people.”

“To be able to meet and help educate people at the beginning of their diagnosis.”

“To improve our digital skills.”

Actions to work towards positive outcomes for COPD patients

Improve pathways and service delivery:

• Accessible information about Pulmonary Rehabilitation
• Guidance on how to use a rescue pack and inhalers

Patient-centred care:

• Make it common practice to share lived experience
• Recognise people’s skills, knowledge and experience
• Allow patient to take the lead
• Base support around individuals’ lives and what is important to them
• Embed co-production

Partnerships and multi-agency working:

• Create named champions within different teams and organisations
• Hold networking and information sessions more regularly
• Establish or build upon multi-agency forums
• Include service users and families in meetings

What next?

With programme funding concluding in summer 2025, preparations were made to ensure a smooth transition and sustained impact.

Future funding and sustainability

The Steering Group partners explored potential future funding streams, particularly those aligned with themes such as digital exclusion and community participation in research. However, despite the best efforts of the group, funding couldn’t be secured to continue the project.

Despite not being able to acquire additional funding, the Community Connectors are in discussion with SAVS to become a constituted group to independently apply for funding in the future. The funding will be used to ensure the continuation of their activities.

The Community Connectors will also join SAVS’ internal volunteer network to ensure that their contact details and information are retained, whilst they explore becoming a constituted group.

Exit strategy implementation

A structured and supportive exit strategy was executed to ensure both Community Connectors and partner organisations were well-supported during the transition:

Strengthening connections: Consolidation of Community Connectors’ relationships with key system and partner agency contacts to maintain pathways of support beyond the programme.

Knowledge capture: Compilation of all qualitative evidence into a single comprehensive document to be stored and made accessible on the Mid and South Essex Virtual Views platform.

Programme wind-down: A gradual reduction was made in Programme Coordinator hours, with the role concluding in December 2025.

Sustained activities:

• Ongoing delivery of COPD Drop-In sessions
• A final presentation was made to the Breathe Easy Group, showcasing key achievements and programme impact
• Stretch and Breathe sessions were embedded within the community, and plans were put in place to ensure they continued independently as a stand-alone initiative

Research engagement: The Research Engagement Network (REN) Phase 2 activities were completed.

Challenges

Engaging younger people: It has been difficult to engage younger people living with COPD, who often don’t identify with traditional community health models or have other competing priorities.

Connecting with coordinators: Contacting and collaborating with other coordinators has sometimes been inconsistent, limiting opportunities for joint working and shared learning.

Digital exclusion: Many residents face barriers around digital and IT skills, making it harder for them to access online support, participate in surveys, or attend virtual sessions.

Accessibility of venues: Some meeting spaces were not fully accessible – with limited disabled parking or step-free access – which reduced participation for some residents.

Connector health: Many Connectors live with long-term health issues themselves, which can affect their ability to consistently engage or attend sessions. They may also be carers, which can affect their ability to engage or attend sessions.

Organisational change: Changes within key project partner organisations, including staff turnover and restructuring, have sometimes disrupted relationships and slowed progress.

Co-design in practice: While co-design is widely supported in principle, there are questions about how consistently it is applied or acted upon across the public sector.

Navigating the ICB: The evolving role of the Integrated Care Board has created some uncertainty around decision-making, making it harder to know where to direct insights for maximum impact.

Short-term funding: Short-term funding cycles have made it difficult to build long-lasting relationships or embed the programme more deeply in the community.

Promoting prevention: Encouraging a preventative approach to managing health is still a challenge, requiring a cultural shift in both service delivery and community expectations.

VCSE-ICS collaboration: There is still work to be done to strengthen collaboration between the Voluntary, Community and Social Enterprise sector and the Integrated Care System to ensure community voices are better integrated into system decisions.

Feedback loops: Residents and Connectors have asked for clearer feedback on how their insights are used, as poor follow-up can reduce trust and perceived impact.

Patient Participation Groups: A lack of local Patient Participation Group structure has potentially led to less patient voices and experiences to be heard.

Contact

Sara Hadden, Community Connectors Coordinator
Email: [email protected]