As the NHS faces rising demand and increasing complexity in the delivery of care, integrating the authentic voice of patients into improvements in clinical practice is essential. This is particularly pertinent in long-term conditions such as chronic wound care, where treatment adherence, self-management and quality of life are central to outcomes. Involving patients in shaping care services and identifying improvements can help to reduce unnecessary suffering and distress (Lindsay and Tyndale-Biscoe, 2023).

In 2024, Lord Darzi’s summary of the findings of an independent investigation into the state of the NHS in England indicated that the patient voice was not loud enough; inquiry themes highlighted that patients’ concerns were not being heard or acted upon (Department of Health and Social Care, 2024). As patient experience has been shown to be positively associated with patient safety and clinical effectiveness (Doyle et al, 2013), understanding and improving experiences of care is critical for positive health outcomes.

This lack of patient voice and the resulting inequity of care manifest regionally, with the term ‘postcode lottery’ used to describe the variation in care across the UK and the unfair experiences this can create for patients (Lindsay and Tyndale-Biscoe, 2023).

To address this need for inclusivity and change, the NHS 10 Year Plan reinforces patient voice and lived experience as central to service redesign and quality measurement (Department of Health and Social Care, 2025). Listening to patients can highlight blind spots that clinical metrics may miss – confidence, independence, identity and participation in everyday life. There are areas where reasonable adjustments can be made, and shared decision-making can empower patients, influence appropriate prescribing and improve care outcomes overall (Department of Health and Social Care, 2026).

Patient voice in clinical practice

Listening to patients can enable healthcare providers and professionals to understand where they may be able to improve communication styles and introduce tools and resources to make care more person centred. Marie Curie’s 2016 report ‘A Long and Winding Road’ revealed how quality communication between healthcare professionals and patients improves outcomes by ensuring clearer understanding of treatment information. Quality communication can reduce emotional distress and support greater engagement with care plans. The report also highlighted that miscommunication often contributes to lapses in patient safety, creating uncertainty and unrealistic expectations, highlighting the need for clearer, more consistent dialogue across the care pathway (McDonald, 2016).

Within wound care specifically, it is good practice to involve patients actively in care planning, including providing education on self-care and wound prevention (Stephen-Haynes and Toner, 2025). Involving patients in measuring and recording outcomes can improve motivation, and when patients feel empowered, it can improve adherence to care plans, promote better communication and shared decision-making (Anderson, 2012). By encouraging proactive self-management, pressure on nursing caseloads may be reduced through more efficient and sustainable service use, leading to a better patient experience and improved quality of life (Parfitt et al, 2021). In wound care, this may include shared decision-making around compression therapy, dressing selection, pain management or strategies to support self-care between appointments.

The idea of creating materials in consultation with patients is something that has been explored with healthcare professionals to capture quality of life outcomes. Checklists were created in 2018 to encourage patients to disclose to their care team any concerns that extended beyond their specific wound (Green et al, 2018). Incorporating patient feedback into the design ensured the resource was user‑friendly, available in multiple formats for easy access, and enabled more focused and effective consultations.

Capturing lived experiences

The aim of this research project was to capture the lived experiences of patients and carers within the wound care lens and to understand where there is room for healthcare professionals to make improvements in care delivery. In turn, this would give insight into how shared decision-making, self-care or shared care and guidance in communication could improve patient outcomes in real-world practice. When patients are actively involved in their care, they are often provided with printed leaflets and guides that offer additional information about their wound, including how to recognise signs of infection, change their own dressings, and understand the importance of proper wound management. While approaches, processes and materials are frequently developed with input from healthcare professionals, the people who use them are often patients or carers in practice; therefore, a patient leaflet was developed in consultation with the patient group to support wound care patients and professionals.

Methodology

Study design and approach
Two structured, four-hour online panel sessions examined the lived experiences of individuals managing wound care. Discussions focused on the emotional and practical dimensions of wound management, shared care, information needs and the patient-consulted development of a shared care guide.

Participant recruitment
Twelve participants were recruited through the research team at Picker using social media platforms, patient communities and existing networks. Recruitment aimed to include adults with direct and recent (within two years) experience of wound care, either as patients or carers. The aim was to recruit a diverse group of individuals in terms of demographics, as well as those with a range of wound types (e.g. surgical wounds, ulcers and chronic wounds). All participants provided informed consent and were assured that their participation was voluntary and that they could withdraw at any time.

Session structure
Sessions were conducted via Microsoft Teams at a time that best suited the participants, using structured topic guides to explore key themes. The guides incorporated open-ended questions and interactive activities to examine:

• Experiences of wound care and shared care
• Care journey insights, including perceptions of healthcare and attitudes
• Feedback on existing materials and support resources
• Impacts of wound care
• Adherence to treatment and care plans
• Review and feedback on the patient-consulted resource (conducted in the second session only, informed by findings from the first session).

Data collection and analysis
Sessions were video recorded with consent and transcribed via Microsoft Teams. Data were anonymised and supplemented with insights from the live chat contributions, polls and breakout discussions.

Transcripts, recordings and facilitator notes were analysed using Clarke and Braun’s reflexive thematic analysis framework to identify key insights and recurring themes (Clarke and Braun, 2013). Selected participant quotations were lightly edited for clarity whilst retaining their original meaning.

Ethics

The project underwent internal review at Picker, and ethical approval was not required in accordance with the Health Research Authority guidelines. The study was classified as service evaluation and raised no material ethical issues. Nevertheless, all activities adhered to the UK Market Research Society Code of Conduct and UK GDPR.

The project, including all recruitment and chairing of sessions, was conducted by the research team at Picker.

Results

Accessing and navigating wound care
Participants described wound care as confusing and disjointed, with delays in accessing care, referrals and unclear pathways. Poor coordination and communication between hospitals, clinics and community teams led to repeated assessments, inconsistent advice and missed handovers. The absence of joined-up records meant histories were re-explained; some participants were discharged without plans, leading to the need to self-advocate. Consequences included prolonged healing and emotional and financial strain. The following participant described the challenges navigating their wound care:

Participants with limited mobility, transport challenges or those residing in areas without access to specialist wound care services often had to manage their own wound care.

Shared care

Experiences of shared care varied. Some participants reported supportive collaboration with their healthcare professionals who provided consistent support; others said it was not offered, introduced late or presented without adequate explanation or support. Safe shared care depended on three elements:

• Clarity about expectations and risks
• Demonstration of dressing techniques in real time
• Follow-up to ensure correct technique and to identify complications early.

When these elements were present, participants felt confident and engaged, when these elements were absent, anxiety and inconsistent care increased.

One participant noted being adequately informed about recognising and managing their pressure sores:

Adherence
Adherence to wound care was shaped by clarity of instructions, available support and daily life demands. Although most intended to follow guidance, pain, fatigue and competing responsibilities required adaptation. Trust and personalised communication were key; participants reported they adhered more when the rationale was explained and advice tailored to personal needs. When healthcare professionals explained the rationale behind treatment decisions and involved patients in the process, participants reported feeling more confident and engaged in their care.

Written materials
Feedback on design revealed a preference for visually engaging layouts with graphics and colour. Many participants found written information overly clinical or too generic. Some received no written guidance. Participants wanted plain language, clear structure, step-by-step visuals, signs of infection and escalation thresholds, translations, colour-safe, high-contrast design, contact details for healthcare professionals and realistic home-based instructions.

Creation of a patient guide
Feedback from the first workshop informed the development of a draft patient guide, which was reviewed and refined by participants during the second workshop. The workshops revealed substantial variation in preferences for information depth; some participants favoured a concise, high-level guide, whilst others preferred a more detailed resource providing greater explanatory context. In response to these differing needs, two complementary versions of the patient guide were developed: a short summary version and a more detailed version. Following the second workshop, both versions were revised based on feedback from patients and healthcare professionals and reviewed by a Clinician Advisory Group to ensure clinical accuracy and usability.

Discussion

This study highlights the role that patient voice can and should play in shaping equitable, coordinated and person centred wound care. As patient experience has been shown to be positively associated with patient safety and clinical effectiveness (Doyle et al, 2013), understanding and improving experiences of wound care is critical for positive health outcomes.

Across the workshops, participants described wound care as difficult to navigate, fragmented, inconsistent and often dependent on individual clinicians. These experiences reflect broader concerns about variability in NHS care provision and the ongoing challenge of ensuring patients feel heard and supported throughout their care journey (Department of Health and Social Care, 2026).

Participants reported repeated assessments, inconsistent advice and unclear referral routes, which echo the wider issue of ‘postcode lottery’ care provision (Lindsay and Tyndale-Biscoe, 2023). These insights reinforce the importance of designing clear wound care pathways that prioritise continuity, clear communication and timely access to specialist care and advice. Strong communication between NHS services and staff members, ensuring care records are joined-up, will help to improve patients’ experiences of accessing and navigating wound care services.

The results also underline the potential of shared care when implemented well. System pressures, including staff shortages following the COVID-19 pandemic, have intensified the need for patient involvement, requiring clearer communication and higher quality of care.

Participants who received clear expectations and demonstrations of dressing techniques felt more confident and empowered to engage in self-care. Following up with patients ensures continued safety and reassessment of their support needs; this includes evaluating their emerging concerns and how supported, prepared and confident they feel.

Such an approach supports early identification of unmet needs, reinforces patient understanding and promotes self-efficacy, thereby strengthening both patient safety and continuity of care. The absence of shared care caused anxiety for some individuals due to lack of clarity, but those who received step-by-step instructions, visual aids or demonstrations reported greater confidence in managing their wounds. Shared care should not be assumed; it requires structured teaching, realistic appraisal of patient capacity, and having the appropriate mechanisms for ongoing support from healthcare professionals.
Another central theme was the importance of communication and information quality. Written materials were often described as overly clinical, generic or difficult to engage with. Effective communication does not rely solely on clinical expertise but on the ability to translate information into meaningful, usable guidance for people managing wounds. Poor communication can affect adherence to, and confidence in, wound care, whilst personalised, consistent communication is more likely to build trust and to support better engagement with care plans. Using empathetic, person centred conversations to explore factors that may support or hinder patients’ ability to follow recommended care will enable healthcare professionals to tailor care plans collaboratively with patients. Emotional state can affect the ability to process and retain information; therefore, providing written information alongside verbal explanations is essential to support recall, understanding and adherence. The consistent provision of clear and accessible written information is recommended to reinforce verbal communication and support patients in managing wound care independently. Healthcare professionals should seek to adapt their communication style to accommodate individual patient needs, considering language, literacy and processing differences, and should create opportunities for patients to ask questions and express concerns. Inclusive, patient centred communication is essential for providing person centred care and for supporting understanding, adherence and patient confidence.

Patient feedback should be used to shape solutions. In this project, participants contributed practical insights into the layout, language, inclusivity and real-world usability of a guidance document on wound care, elements that healthcare professionals alone may overlook. Their involvement helped refine guidance that is not only clinically accurate but also accessible and engaging to patients. These findings mirror broader calls across the NHS to ensure patient voice is embedded in service design and delivery (Department of Health and Social Care, 2025).

There are limitations to note. The qualitative design means findings are not intended to be representative of all wound care patients – there were only 12 participants in total. Furthermore, participants were self-selecting, which may have introduced bias towards those with stronger or more negative experiences of wound care. The online workshop format may also have limited participation from individuals without digital access, an important consideration for future work. Nevertheless, the findings provided valuable understanding of where communication, guidance and pathway design can be strengthened in wound care.

Conclusion

Overall, this study demonstrates that listening to patients can yield clear, actionable improvements for wound care practice. These insights provide practical guidance for healthcare professionals seeking to make their care and communication with patients more effective. By centring patient voice, designing clearer information, strengthening shared care processes and reducing pathway complexity, clinicians and service leaders can meaningfully improve the experience and outcomes of wound care across the NHS. Engaging patients is pivotal to ensuring health services are designed around people’s experiences, preferences and needs, in accordance with the NHS 10 Year Plan, which places patient voice and lived experience at the centre of service redesign and quality measurement (Department of Health and Social Care, 2025). Providing high-quality and accessible information and communication that is based on patient preferences will enable people to feel more confident and empowered to independently manage their wounds. This is likely to reduce the pressure on healthcare providers by easing workloads as well as improving quality of life for patients.

Further qualitative research may strengthen the findings and highlight additional gaps and areas of good practice in wound care. Quantitative research such as a patient survey may also complement the findings and enable feedback from a larger volume of participants.

The patient leaflet developed in consultation with this patient group will be made available soon to patients and healthcare professionals via the Flen Health website.