Community Asset Mapping: Chronic Obstructive Pulmonary Disease

Healthwatch Essex worked with C360 and CVST to undertake asset mapping in Colchester and Tendring on the issue of COPD. The report looks at:

• Primary Prevention 
•  Early Accurate and Complete Diagnosis of Respiratory Symptoms
• Treatment and Management of COPD in Acute and Stable Phases 
• Complex/Severe Disease Treatment 
• High Cost/High Need Patients 
• End of Life Care

They spoke to 40 patients and over 10 frontline workers.

The following key challenges were identified:

Although phone consultations offer convenience for routine check-ins, in-person annual assessments by respiratory nurses remain essential for effective COPD management. Key aspects like lung health, oxygen levels and inhaler technique cannot be adequately assessed over the phone. While most GP surgeries in Colchester seem to have resumed in-person reviews, the majority of consultations with the respiratory nurse in Jaywick & West Clacton are reportedly still being conducted by phone.

Participants frequently faced difficulties booking GP appointments. The unpredictable nature of their symptoms makes it difficult for those living with COPD to join the morning queue for same-day appointments, leaving them at a significant disadvantage in the current ‘first come, first served’ booking system. In some cases, patients were instead directed to emergency departments at their local hospital, which are already under strain due to increasing patient numbers, resulting in longer wait times and delays in care. With few alternatives, many are forced to seek emergency care when their symptoms escalate. Frontline hospital staff noted a rise in COPD diagnoses during hospital admissions.

Many participants delayed seeking treatment for symptoms of COPD such as breathlessness and persistent coughs, attributing these to aging, lifestyle choices, or minor respiratory issues. This often led to advanced-stage diagnosis.

Due to the unpredictable and debilitating nature of moderate to severe COPD symptoms, several participants reported being unable to visit their GP surgery, yet struggled to arrange home visits as they were not classified as housebound. This results in an unnecessary workload increase for emergency services and hospital staff who are then picking up responsibility of care for these patients.

Participants in Jaywick & West Clacton frequently reported poor interactions with GP reception staff, leading to feelings of disrespect, frustration and discouragement from seeking further care. Some turn to instead local pharmacies, 111 services and Clacton Urgent Care Centre for medical support.

Participants voiced frustration over the difficulties in obtaining standby rescue packs, which has resulted in more emergency call outs and hospital admissions due to unpredictability of chest infections and limited GP access outside of working hours.

Some participants reported receiving little advice or guidance on their condition after initial diagnosis, while some healthcare professionals highlighted the challenge of providing sufficient information and answering questions within the limited consultation time allotted. As a result of the compartmentalisation of practical support, it becomes difficult for patients to know what they can access, with patient knowledge varying. Online resources also often do not contain localised knowledge, with most being national resources.

Refugees and asylum seekers with COPD face difficulties registering at GP surgeries and accessing healthcare due to language barriers and lack of recognised ID.

Long waiting lists and strict eligibility criteria (e.g. MRC breathlessness score) limit access to pulmonary rehabilitation for COPD patients who might have otherwise benefited from attendance at an earlier stage.

Many participants expressed feeling disconnected from their former selves due to a loss of independence, mobility, and identity, which contributed to mental health challenges such as depression and anxiety. Patients reported that societal judgment and stigma—especially the assumption that COPD is self-inflicted through smoking— intensified feelings of shame and led them to withdraw from social interactions. This isolation further exacerbated mental health issues. For some, the unpredictability of COPD symptoms, particularly severe breathlessness, triggered anxiety and panic attacks, resulting in unnecessary hospitalisations and the use of healthcare resources.

Patients prescribed oxygen are entitled to a Home Safety Check. However, because it is an opt-in service, many checks are not completed, leaving the ECFRS unaware of the safety conditions in these homes, which can pose potential fire risks. At present, these checks are not mandatory.

Smoking cessation was difficult goal for many participants, even after receiving a COPD diagnosis, with some feeling that the damage was already done or that quitting wouldn’t improve their condition. Emotional dependence on smoking was a coping mechanism for stress, anxiety, and depression which makes quitting even harder. Smoking cessation services are mostly limited to phone consultations in North East Essex, which may not be as effective for many patients.

An increasing number of younger people are developing COPD as a result of repeated drug use, particularly from smoking cannabis and crack cocaine. These substances burn at significantly higher temperatures than cigarettes, causing greater damage to the lungs.

The dissolution of the Asthma & Lung Breathe Easy group and the St. Helena Breathlessness group means that there is no accessible peer-to-peer support group that acts as an easily accessible space where people with COPD can access different kinds of practical support. While there is a clear clinical pathway for medical support, there is a clear compartmentalisation of practical support which means that patients are often not aware of what support they can access. Support is often accessed through ad hoc referrals from clinicians or nurse.

People who are older or from less economically advantaged backgrounds often lack digital skills. As a result, this means that a lot of patients with COPD experience health inequalities in the form of digital exclusionary barriers to accessing the wealth of online information support that may be available to help them manage their condition - leading to worse health outcomes. In some cases, patients may also experience challenges accessing some phone-based assets, such as Therapy For You or EWS Smoking Cessation, as their condition means that they struggle to talk on or hold a phone for prolonged periods of time. If they cannot access these assets, then it leads to worse health outcomes, as patients may continue smoking - thereby worsening their condition - or experience mental health conditions as a result of their condition, such as anxiety or depression, which has been documented to negatively affect respiratory conditions.

Participants highlighted the importance of reliable transportation for maintaining independence and accessing care, especially in underserved areas. Without access to a car, patients living with COPD in St. Anne’s & St. John’s or Jaywick & West Clacton may struggle to reach local assets, as most of these journeys would require extended periods of walking. In Jaywick & West Clacton, buses are often reported as unreliable and subject to cancellations, while taxis remain a costly alternative.