We reviewed the implementation and impact of a chronic pain Patient Advisory Group (PAG). The study looked at how the PAG facilitated improvements in patient experiences and outcomes. It also investigated the role of such advisory groups in fostering greater community involvement and transparency in health service governance.
Methodology
Centric partnered with the Neighbourhood and Wellbeing Delivery Alliance (NWDA) to engage with Lambeth residents who experience chronic pain. Their aim was to better include their voices in decisions that we make for people with such conditions. The project involved:
- Online focus groups – two introductory and six quarterly focus groups took place, to provide the space to connect participants
- Case studies – two case studies from the patient group were examined to explore the participants experiences, current needs and areas for improvement
- Data analysis – ‘thematic analysis’ was used to analyse the focus group and case study insights
Successes
A key success of the project was the Patient’s Advisory Group’s contribution to the creation of a new chronic pain register for Lambeth GPs.
Key research findings
Key insights from the PAG sessions are highlighted below.
Conversations about managing chronic pain need to be improved
- Patients have reported negative interactions with healthcare services, including feeling neglected, dismissed and a lack of empathy, especially those with invisible chronic pain conditions. The briefness of appointments and absence of follow-up care have further exacerbated their distress.
- Despite the availability of pain control medications, many patients feel unsupported in managing side effects, medication discontinuation and exploring alternative pain management options, leaving them unsure of where to seek guidance
Online apps could improve how we share data, speed up referrals and help more patients access support – but they need to be more accessible
- There are significant challenges in the way information is recorded and shared across the healthcare system. Each service often relies on different, incompatible systems, making it difficult for healthcare professionals to access and update patient records efficiently. This leads to gaps in communication, delays and frustration for patients as well as GPs. Despite this, new tools like the My Charts app (which allows patients to see their medical and appointment history at Guys and St Thomas Hospital) show promise in improving communication.
- The PAG identified challenges for people using the Leva app, designed to support people to manage musculoskeletal conditions. Improvements in accessibility and usability could make the app a valuable resource for patients.
Good mental health is important to keep people motivated, resilient and engaged with support services
- Chronic pain significantly affects mental health and wellbeing, leading to difficulties in communication with healthcare professionals and a grieving process as individuals come to terms with their condition. Financial constraints also force patients to prioritise basic needs over activities that could benefit their health and could lead to negative health consequences
- Patients recognise that while they may not be able to engage in certain activities as before, there are alternative ways to enjoy life despite chronic pain. A SWOT analysis was used to help them identify strengths, weaknesses, threats and opportunities, encouraging a focus on maintaining a good quality of life.
The PAG model creates a platform for shared wisdom and support
- The PAG has created a supportive and empowered environment by actively listening to and understanding each other’s experiences, enhancing group dynamics.
- Together they have created a comprehensive resource pack for individuals with chronic pain, addressing challenges such as managing long waiting times, medication options, and improving quality of life through accessible activities and online support groups.
Discussion and conclusion
Key recommendations from the research are summarised below:
Recommendation 1: Keep the Patient Advisory Group going
Involving healthcare professionals specialising in pain management will bring valuable expertise, addressing questions and providing informed advice to help the group’s initiatives and support network.
Both in-person sessions and online platforms will be included to accommodate diverse preferences and encourage broader participation.
Recommendation 2: Enhance patient-centred care
Collaborating with Lambeth Together Neighbourhood and Wellbeing Alliance and stakeholders to prioritise patient-centred care initiatives for chronic pain management, focusing on cultural competence and sensitivity training for healthcare providers.
Training will emphasise the importance of language, encouraging more inclusive phrasing such as ‘we would like to work with you’ rather than ‘we want to use you’ to better address the needs of diverse populations.
Recommendation 3: Maintain a comprehensive resource pack
A resource pack for chronic pain patients in Lambeth has been created to share collective wisdom, available during GP appointments and online to help empower patients in managing their pain effectively.
Recommendation 4: Support digital literacy and access
Investment in digital literacy programs for community members is essential, alongside making health management platforms accessible and user-friendly, particularly for the elderly and those with disabilities
Recommendation 5: Improve resources on medications and alternatives
Provide better quality information on pain medications and alternative treatments, addressing concerns about medication weaning, especially for pregnant and breastfeeding mothers and other issues related to pharmaceutical options.
Recommendation 6: Improve engagement methods
Utilise social media outreach and collaborate with the NHS to establish online support groups moderated by skilled organisers, offering consistent support sessions.
Increase the frequency and depth of meetings to ensure comprehensive discussions on pain management strategies and effectively address patient needs.
Recommendation 7: Provide complimentary exercise programmes
Offer suitable classes for chronic pain patients, including hydrotherapy, swimming, yoga and Pilates with flexible eligibility criteria.
Provide these options both in-person and online to cater to diverse preferences and needs.