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Connect North is an innovative, integrated and co-designed social prescribing service operating across the Northern Health and Social Care Trust (NHSCT) area in Northern Ireland. Finalist in two Picker Experience Network (PEN) Awards categories both in 2024 and 2025, Connect North demonstrates how integrated, person-centred approaches can improve access to care, reduce system complexity and patient safety risks associated with fragmented services and delayed support. We spoke to Claire Ramsey, Health and Wellbeing Manager at Connect North, to find out more about the service.  Hi Claire. Can you tell me about Connect North and why was it set up? Connect North was established in response to system-wide challenges highlighting a fragmented and confusing system. Signposting information was available, but only by referral, and services held varying referral criteria—individuals could be known to multiple services for similar supports while others in need were left unsupported. This fragmentation created clear risks to clients, including delays in accessing support, increased likelihood of deterioration while waiting for help and the potential for vulnerable people to fall through gaps between services. In response, Connect North was created to integrate and streamline services into one coordinated model, reduce duplication, improve access to community-based support and empower individuals to access support earlier through better information and self-service options. We support adults to address social, practical or emotional issues through a publicly available online directory of services, accessible signposting or via referral to our link worker service for more tailored support. How did you involve patients in co-designing Connect North? Connect North actively engaged with clients and carers at every stage; from review of services to identifying problems, shaping the service model and co-producing resources, to ongoing evaluation. Their needs form the anchoring principles of the Connect North model, service and improvements. What is social prescribing and what are the benefits to patients? Social prescribing is a holistic, person-centred and community‑based approach, which recognises that non-medical health-related social needs—for example, work, money, housing problems, the challenges of managing long-term conditions or feeling lonely or isolated—are just as important to our health and wellbeing as our physical health needs. Social prescribing connects people to activities, groups and services in their community to meet the practical, social and emotional needs affecting their health and wellbeing. It can lead to better mental wellbeing, stronger social connections, improved self‑management of long‑term conditions, greater empowerment and control, and reduced reliance on traditional healthcare services. You mention long-term conditions; can you give an example of how Connect North can help a patient with a long-term condition? I’ll use a diagnosis of dementia as an example here. The impact of this diagnosis on the person and their care circle can be overwhelming, leaving many unsure where to turn for help or feeling alone. Without timely and coordinated support, this uncertainty can lead to increased carer stress, social isolation, delayed access to services and a higher risk of crisis situations developing. Connect North provides personalised, early support to guide people through this difficult time. Clients are offered a one-to-one appointment with a dedicated link worker who takes time to assess and understand their needs, concerns and what matters most to them, before connecting them to services and activities to improve their wellbeing. To speed up connection and reduce misconnections between those who need help and support to those who provide it, we set-up our Community Appointment Days (CADs). CADs enable clients with dementia and their carers to connect directly with a wide range of support within a single appointment. Can you tell me more about the Community Appointment Day? The aim of our Community Appointment Day (CAD) is to make things simpler, faster and less stressful, helping people with dementia and their care circle feel informed, supported and more confident about the future. Immediately following a personalised assessment and care planning appointment with their link worker, clients and their carers are directly introduced to services who can support their needs, within the same appointment. Delays and misconnections to these services are completely eliminated and we use our own service data to ensure relevant statutory, community and voluntary sector organisations are represented for maximum impact. Support services invited typically include those who provide carer support, dementia-specific information, benefits advice, personal and home safety information, and those hosting local groups and activities to improve social connectivity. Another important feature of our CADs is that they are hosted in accessible, non-clinical community venues. At each event we create a relaxed and warm environment enabling positive engagements. Every conversation is purposeful and led by the pace of each client and their carer. Clients and carers can attend together or separately as they require, and we encourage regular breaks throughout with refreshments provided. At the end of the appointment, each client/carer is provided with a clear, easy to understand record of their conversations and connections made on the day supporting recall and follow-up. What were the outcomes and how has it benefited the community? Our CADs make dementia support for our clients and their carers timelier and more effective while also improving how local services work together as an integrated system. Providing multi-agency care and support via a single appointment reduces referral administration and delays/misconnection to care provision. Evidence indicates increased uptake of support at an earlier stage, improved coordination between services and reduced duplication of referrals, contributing to a more responsive system. It also alleviates the burden of responsibility experienced by clients and their carers to navigate complex systems, connect with services and coordinate multiple appointments. We consistently find that more people are accessing and taking up support earlier. This earlier engagement is critical in preventing deterioration and reducing the likelihood of crisis developing. From a system where people frequently felt on their own with no help and support, to our CADs which offer direct and coordinated care within a single appointment, the client experience is far improved: “This has completely changed our whole outlook, we are so much more positive about the future.” “We had no idea so much help and support was available.” “I can’t believe the tenderness of it all—it’s been wonderful.” Co-delivery partners find the CAD and our targeted approach to service delivery around the client to be a more effective use of their time, generating appropriate referrals more efficiently. They also enjoy the opportunity to network, share learning and connect meaningfully with clients and carers to make a positive impact to their health and wellbeing following a diagnosis of dementia. What advice would you give others wanting to set up something similar in their community or region? Bring the system to the person, not the person to the system. A CAD requires targeted planning based on needs. While strong partnerships and continuous improvement are essential for any event, a CAD specifically requires data-driven planning and effective organisation to deliver a streamlined and personalised appointment with a clear focus on the reality of client and carer needs and experiences. Application of good health literacy principles in practice is essential at all stages and support needs to be timely, coordinated and always centred around the needs of the individual. What are your next goals and plans for the future? The future focus for Connect North is on sustaining and refining our CAD model, ensuring it remains efficient, person-centred and adaptable, while extending its benefits to more people and, potentially, other areas of care through sharing learning, resources and good practice. In the NHSCT, we are particularly interested in how this model can be adapted to support other population groups and conditions. We will continue to collect and share our own service data and outcomes with partners and stakeholders to support further improvements, ensuring our service remains targeted, efficient and responsive to need. Are you doing something similar in your community? We would love to hear about it and share on the hub. Email [email protected] or comment below (you need to be a hub member and signed in).

Julie Storr is an expert in the field of patient safety, quality and infection prevention and control (IPC), and a Topic leader for the hub.  In this blog, Julie explores how IPC guidance can inadvertently lead to psychological harm, when it is not applied through a person-centred lens. Drawing on literature and reflecting on the COVID-19 pandemic, she questions whether guidance supports both compassion and safety when applied in practice.  Infection prevention and control guidance Healthcare guidance is designed to support the delivery of safe, high quality care by providing clear and consistent recommended best practices based on available evidence. In infection prevention and control (IPC), guidance typically focuses on: transmission routes precautions clinical interventions isolation and a range of environmental controls. At the point of care, guidance is interpreted by health care workers, in context and often under pressure. IPC is widely described as fundamental to patient safety and quality of care. Its foundations in microbiology and epidemiology have saved countless lives and it has deep roots in the biomedical model. From Louis Pasteur to Florence Nightingale, its legacy is grounded in germ theory, surveillance, and control. This has resulted in highly effective, evidence-based systems and has also shaped guidance that is often highly technical, precaution-focused, and written in absolutes. The cost to human connection During COVID-19 the gap between guidance and practice was brought to the forefront. Preventing the transmission of a single infection became the dominant goal, sometimes at the expense of human connection. Stories of people dying without loved ones, or families waving through windows, are reminders that safety without humanity can equally result in harm. This gap between policy and practice became highly visible and caught the attention of many working in the field of IPC and beyond, including myself. Elements of this story have been told many times now, including in a previous blog for Patient Safety Learning. When ‘technically safe’ risks psychologically harm In reviewing a sample of international and national IPC guidelines recently, a few things stood out. Many run to hundreds of pages, detailing precautions in depth. The language is directive, one guideline from the English NHS used the word “must” close to 100 times, reinforcing certainty and compliance. By contrast, words like person-centred, compassion, loneliness, or humanity were rarely, if ever, used. Even anxiety appears only occasionally, often without guidance on how to allay fear. What is less visible in much IPC guidance is the person. This has been described by colleagues as the grey space, where the human dimension is under-specified and staff are left to navigate complexity themselves often under pressure. In those conditions, guidance can quickly become black and white. This can lead to decisions that are technically safe but that may contribute to psychological harms. As one reflection from the period of the pandemic put it, in the case of some loved ones “we protected them to death.” The implementation gap This tension between IPC guidance as written and as experienced in practice reflects a wider challenge, long recognised in patient safety: the implementation gap. As highlighted by Patient Safety Learning, this is the disconnect between patient safety guidance working in theory, but not in practice. Actions that may appear to address patient safety issues failing to account for a wide variety of organisational context, culture and capacities. In the context of IPC, guidance may be evidence-based and technically robust, but if it does not account for the realities of care delivery or the human needs of patients, it risks being applied in ways that are rigid, inconsistent or inadvertently harmful. Patient Safety Learning have emphasised that this gap persists where there is a lack of joined-up approaches, weak systems for sharing learning, limited oversight, and unclear leadership. Building on existing learning There are examples to learn from. Some guidance now acknowledges the psychological impact of isolation on people and a recent IPC guideline from Ireland is strong on person centredness. Frameworks from America and Canada have been developed that support ethical decision-making. But certainly within the guidelines I reviewed, in the majority, these elements are often brief, dare I say tokenistic, a sentence or at most a paragraph in documents of hundreds of pages, rather than embedded. Patient safety literature is increasingly recognising the importance of compassion as a core mechanism for safer care. As one review puts it, “compassionate interactions… can help to identify and address potential risks… that could endanger patient safety”. If IPC guidance is to be truly fit for purpose and for all people, it must move beyond acknowledging person-centredness to embedding it as a core element of patient safety. That means supporting staff to communicate risk in ways that inform rather than alarm, creating space for proportionate discretion, and treating patients and families as partners in prevention rather than passive recipients of rules. IPC can be person-centred. Some are already leading the way. But there is some way to go for this to be fully considered the norm across our health care systems. So where do we go from here? When IPC practitioners were asked on a recent webinar what person-centred IPC looks like, the answers were strikingly human: compassion, empathy, dignity, connection. For those designing, leading and delivering healthcare, a simple question may therefore be useful: Does our guidance support not only the prevention of infection, but the experience of safe, compassionate care? If the answer is not yet fully yes, then there is an opportunity for improvement.

Join the Patients Association for the second in their Patient Partnership Week series as they dig deeper into patient experiences which are being used to inform NHS Online's build and contribute to the discussion. Speakers Chair: Rachel Power - Chief Executive, the Patients Association Jonny Brown: Programme Director, NHS England Jacob Lant: Chief Executive, National Voices Gillian Richards, patient Register

Imagine Citizens Network believes meaningful change in healthcare begins by listening to the people at the centre of it. This webinar will bring together health leaders, advocates, and community voices for an inspiring conversation about strengthening the patient voice in health care and exploring how stories and lived experiences can help drive real system improvement. Hosted by the Institute of Health Economics, the session will highlight best practices in increasing the patient voice in health care, featuring the internationally recognized Care Opinion program and the growing work happening in Alberta to gather feedback from Albertans receiving health services across the province. Together, we’ll explore how creating safe, accessible ways for people to share their experiences can build trust, improve care, strengthen accountability, and shape a more responsive health system for everyone. Featured speakers include: • Catherine Douglas, Health Advocate, Alberta • James Munro, Director, Research & Development, Care Opinion UK • Don McLeod, Executive Director, Imagine Citizens Network • Mollie Cole, Executive Director, Health System Improvement, Health Quality Alberta Moderator: John Sproule, Senior Policy Director, Institute of Health Economics Register

Too many patients move through a health and care system that is fragmented, complex and hard to navigate. Services are designed around organisations, not people. But what would it look like if we put the patient at the centre - not as a policy ambition, but as a lived reality? This session from the Patients Association brings together a GP with national experience in neighbourhood health, a patient, the National Academy for Social Prescribing, and a Consultant Surgeon to explore what genuine person-centred care looks and feels like - and what needs to change to make it the norm, rather than the exception. Register

The rapid development and use of artificial intelligence (AI) in health and social care raises professional, ethical and legal questions. In February, the Professional Standards Authority for Health and Social Care hosted a participatory workshop in collaboration with academics from the University of Bristol, Dr Helen Smith and Professor Jonathan Ives to explore how we can guide and regulate health and care professionals who use AI. The workshop brought together professional regulators and Accredited Registers, as well as patients, service users and members of the public. Through group discussions and a series of real-world scenarios, participants explored themes such as AI safety, bias, transparency and accountability. In this blog, Patrick Murphy, Policy Advisor, reflects on the messages that came out of the workshop. The value of lived experience The workshop reinforced a key message, that the future of AI in health and care cannot be shaped by technical expertise alone. Creating spaces where patients and service users work alongside regulators and Accredited Registers supports safer innovation. Lived experience brings vital insight into how systems work in practice, where risks can emerge, what the public want and need from regulation, and how to build trust. It also helps support the safe and reliable integration of AI. The workshop was designed with participation in mind. Patients and service users took part alongside regulators and accredited registers on an equal footing. In a space that can sometimes feel highly technical, the workshop showed that meaningful public involvement is both possible and necessary. Participants with lived experience engaged confidently with topics such as assurance, transparency and accountability. Discussions also covered how regulation, standards and guidance are experienced by the people they are meant to serve. A consistent message throughout the day was that patients and service users are not just observers of AI policy and regulation, they are essential partners in getting it right. Their contributions raised practical questions and real-world examples, and kept the focus on how AI-enabled decisions can affect people’s lives, access to services and confidence in care. Equity, transparency and trust Patients, service users and members of the public highlighted several issues that deserve particular attention as AI becomes more common across health and care. If engagement only reaches the most confident, connected or well-resourced groups, AI tools and the rules around them risk being shaped by a narrow range of experience. True inclusion means actively involving people who are often overlooked, so innovation serves everyone and not just those who are easiest to reach. To support safe and fair innovation, tackling inequality needs to be built into every stage, from development, to procurement and service design, to long-term monitoring after deployment. Fairness and equity must be central, not an afterthought. Avoiding harm requires more than technical fixes. It also needs careful scrutiny of the data that feeds AI systems. That includes the data used to train models and the data used in designing health and care services. It is also essential to be clear about which outcomes are being measured and how success is defined. Trust depends on clarity, and it is important to give consideration to how AI is integrated in health and social care. Patients and service users should not feel like they are interacting with a 'black box'. It should be clear when AI is being used, what role it is playing in someone’s care and what options are available if something feels wrong. Empowering people helps them remain partners in their own health and care journey. The workshop highlighted challenges but also the opportunities for health and social care improvement presented by AI. As we navigate this technological transformation, patients and service users should remain empowered through co-production, helping to shape the standards, guidance and regulation that govern how AI is designed, deployed and monitored in practice. To find out more about the workshop and read the report, visit: Artificial intelligence - how to guide and regulate for health and social care professionals using AI

In this fireside chat, Habib and Rachel will explore the root causes of health inequalities and why building trust with communities is essential to improving outcomes. Reflecting on lessons from the pandemic, they will consider what has changed—and what still needs to. The conversation will also look ahead to the growing role of AI in healthcare, alongside the important work of addressing bias in clinical trials, drawing on RHO’s work to create more inclusive and representative research. Chair: Rachel Power, Chief Executive, the Patients Association Professor Habib Naqvi MBE FFPH, Chief Executive, NHS Race and Health Observatory Register

A good night’s sleep is essential for healing, yet, for many patients, it can feel almost impossible to be able to sleep or get rest during an inpatient stay. The Noise at night sleep pack project at Nottingham University Hospitals was a finalist at the Picker Experience Network 2025 Awards. In this blog, project lead Kelly Morley tells us why this initiative and a renewed focus on reducing noise at night was so important. Despite the dedication of staff and the comfort measures provided on our wards, night‑time noise remains one of the most common concerns raised through patient feedback and it was quickly identified as one of the top three patient experience priorities within our trust. At Nottingham University Hospitals (NUH), we know that sleep isn’t a luxury it’s a vital part of the fundamentals of patient care. Why night-time noise matters Hospitals are naturally busy environments. Even after lights dim, clinical activity continues as staff carry out observations, respond to emergencies, check medications and support patients who are awake or unwell. For patients, though, these unavoidable sounds can lead to: Interrupted sleep or the inability to fall asleep. Increased anxiety and stress. Decreased mental awareness. Higher pain sensitivity. Slower recovery times. Lower patient satisfaction. Complaints. Decreased uptake in rehabilitation exercises. Deconditioning. Longer patient stays. Many patients tell us that a noise is one of the most challenging aspects of their stay. Sleep is not just a comfort—it’s a critical part of recovery. Even as far back as in 1859, Florence Nightingale published her book 'Notes on Nursing', which contains lots of good advice about sleep in patients and these are still actions we would do well to take into consideration in modern nursing. “Unnecessary noise, then is the most cruel absence of care that can be inflicted on either the sick or well” (Florence Nightingale) What our patients were saying Through patient surveys, ward feedback and conversations with patients and staff, we regularly heard that noise from equipment, conversations, staff, bins, alarms and other patients would significantly affect their sleep. When asked the question: Do you have any suggestions as to how we can improve the quality of sleep for in-patients or any comments you would like to make? Patients responded: “Would be willing to try anything.” “I think the sleep pack should be mandatory and given to inpatients.” “Ask staff to speak quietly and answer the buzzers quicker—it sounded like they were moving furniture last night.” When we asked staff what they thought prevented patients from sleeping they reported: “Noise from other patients.” “Lighting.” “Observations/medications/investigations/turns.” "Noise from staff.” This feedback drove our improvement work. Sleep packs: small items, big impact To help patients rest better, many wards at NUH now offer sleep packs. These typically include: A sleeping well in hospital leaflet—this was designed by clinical staff with an interest in sleep and why it matters. The leaflet pulls together all literature that has been written in the Trust to date in regard to sleep and amalgamates this into one simple evidence-based leaflet. Earplugs—to soften unavoidable environmental noise. These are in singular packs and can be replaced as and when needed. Eye masks—to reduce disruption from lighting on the wards, particularly when nurses tend to other patients. Slipper socks—these ensure patients are not looking around for slippers in the night, opening lockers, looking under beds and, best of all, they are a simple measure that can also reduce slips, trips and falls. Sleep packs may seem like a small intervention, but patients consistently tell us they make a real difference—especially for those who struggle to settle in unfamiliar surroundings. The items are always used with the aid of clinical judgement, and it is reiterated that these items are not always suitable for everyone. Our aim is to ensure these packs are readily available and consistently offered, particularly to patients most likely to benefit. Post implementation, the feedback was very different: “Thank you for supplying the sleep pack. They have definitely made a difference.” “The mask was comfy and helped.” “Sleep packs, very beneficial. Sleep interrupted a lot as observations being taken regularly, but this is to be expected and not a criticism.” How our staff are supporting quieter nights Staff play a crucial role in creating a calmer night‑time environment. Across NUH a quieter hospitals group was formed to work on the problems that were identified during this project, including: Reducing unnecessary noise on wards: Lowering voices during night rounds. Limiting equipment noise where safe to do so. Closing doors softly. Using soft close bins/ doors. Having top tips poster for staff—reiterating the sleep leaflet guidance and making staff more aware. Planning care to avoid multiple disturbances during the night: Grouping non‑urgent tasks together (cluster care). Using soft‑close bins and quieter equipment where possible. Responding to patient needs: Offering sleep packs. Adjusting lighting levels where safe to do so. Addressing concerns quickly. This work is guided by patient experience feedback and in collaboration with ward teams who see first‑hand how important sleep is for recovery. Below is the feedback from the ward manager of one of our pilot wards, and they continue to see the benefits of these packs. “The ward can be noisy at night, and I think we had all just accepted that disturbed sleep is to be expected when you are in hospital, but this trial has changed that outlook. The sleep packs are really simple but very effective, they contain an eye mask, slipper socks, ear plugs and a leaflet with hints and tips of how to get a good night’s rest. Staff have been offering them to patients in the evening, feedback has been great with a few patients claiming ‘it’s the best night’s sleep they have had in years'. We will carry on with them after the study finishes.” (Amy, ward manager on sample ward for pilot – PDSA 2) How the community can help Support from families and visitors also plays a part in creating a restful environment. Simple actions can make a difference: Being mindful of noise during visiting times and remembering people are often sicker than they look and often need more rest. Avoiding phone calls late at night. Encouraging relatives to use call bells instead of raised voices. Bringing in comfort items that help patients relax. Sharing feedback so we can continue improving. Together, we can support better sleep in our hospitals for everyone. So what’s next? Improving sleep in hospital isn’t solved by one intervention alone—it’s a combination of thoughtful design, staff awareness, helpful tools like sleep packs, and ongoing feedback from patients and families. Our commitment at NUH is to continue: Listening to patient experiences. Reacting to feedback. Supporting clinical teams. Introducing practical solutions. Creating calming, quiet environments. Because a quieter night isn’t just about comfort—it’s about better care and better patient outcomes. Noise at night sleep pack presentation: Poster in wards:

The Cheshire and Merseyside Cancer Alliance (CMCA) were finalists in the 'Partnership Working to Improve the Experience' category at the Patient Experience Network 2025 Awards. In this blog, CMCA explain how patient stories are deliberately integrated into their governance, learning and pathway redesign, and how this approach transforms storytelling from passive listening into active improvement. Beyond data—listening to lived experience Modern healthcare systems are built on measurement. We track waiting times, referral-to-treatment targets, survival rates and performance indicators. These metrics are essential and tell us whether services are efficient, timely and clinically effective. Yet some of the most powerful drivers of improvement do not originate from a dashboard—they begin with a story. Cancer care is one of the most complex, emotionally charged and high-risk areas of healthcare delivery. A single cancer journey may span primary care, diagnostic services, multidisciplinary team (MDT) discussions, surgery, treatment, supportive services and palliative or end-of-life care. Along the way, patients navigate multiple appointments, handovers between teams and often life-altering decisions. Delays in diagnosis, unclear communication, fragmented pathways and missed escalation opportunities can have profound consequences. A cancer patient’s story does more than recount a sequence of clinical events. It reveals what mattered most to them in moments of uncertainty. It highlights where systems worked well—and where they did not. It brings into focus inequalities, access barriers and communication gaps. The question is no longer whether patient stories matter. It is how we use them responsibly, consistently and systematically to improve care. From patient story to structured improvement To create measurable impact, storytelling must move beyond powerful listening sessions. It must be embedded into structured quality improvement and safety culture. At CMCA, patient stories are deliberately integrated into governance, learning and pathway redesign. Stories are shared across meetings, events, training sessions and improvement programmes. Rather than treating stories as standalone testimonies, they are used to strengthen systems thinking. Each story prompts structured reflection: where were the faults in the pathway? what safety nets failed or were absent? how did workload pressures or process design contribute? were there missed opportunities to escalate concerns and could this scenario happen in our service today? This approach transforms storytelling from passive listening into active improvement. When patients see that their lived experience leads to tangible change, storytelling becomes partnership—not performance. On 23 May 2022, CMCA invited its first patient storyteller to a team away day. Hearing a personal cancer journey directly from someone with lived experience had a profound effect. It shifted conversations from abstract targets to real human impact. Since then, colleagues across the Alliance have increasingly invited patients to share their experiences to inform pathway redesign and programme development. Between 2022 and 2025, 73 patient stories have been shared. As a result, six significant changes have been implemented. These include improvements to the accessibility of diagnostic testing and the development of a patient engagement checklist for the pathology transformation programme. Other impacts are less immediately measurable but equally meaningful. Stories often leave a lasting impression, influencing how leaders think about service design long after the meeting ends. Empowerment through partnership For many patients, sharing their story is both courageous and empowering. Storytellers remain fully in control of what they share and how they share it. CMCA offers multiple formats—written narratives, audio recordings, video submissions or in-person presentations—ensuring that individuals can choose what feels safest and most authentic. One storyteller reflected: “Oh my word, it's always so amazing to know people hear what I say and take it in.” Another, a CMCA Patient Representative, shared: “Sharing a patient journey can feel daunting at first, but the team at CMCA have been empathetic, kind and supported me every step of the way. Knowing that my words can help others in some way gives me hope and helps me to heal.” Storytelling has also opened further opportunities for patient involvement. Some storytellers have joined project groups, contributed to service redesign or been connected to additional support services. What begins as a story can evolve into ongoing collaboration. Embedding the patient voice in leadership and education The influence of storytelling at CMCA has expanded beyond frontline teams. Patient stories are now a standing agenda item at Board and Diagnostics Board meetings, ensuring that strategic decisions remain grounded in lived reality. At one recent Board meeting, a storyteller who is both a wheelchair user and a cancer patient described the physical and systemic barriers they encountered across their pathway. The account was powerful and specific. It prompted Board members to commission a system-wide accessibility review—a direct example of lived experience shaping strategic action. Patient stories have also informed education. They became the foundation of the 123 Health Inequalities training programme, a CPD-accredited e-learning course developed by the CMCA Health Inequalities and Patient Experience team. Built from both staff and patient voice, the programme uses real experiences to illustrate how inequality manifests in everyday practice—and what professionals can do differently. As Jenny Brazier, Patient Engagement Senior Project Officer at CMCA, explains: “Listening to and acting on lived experience teaches us how to deliver better care and improve services for others. When we truly understand what matters most to patients and their loved ones, we create more equitable, person-centred care.” Conclusion: listening as a safety intervention In cancer care, success is often measured through survival rates, treatment standards and clinical outcomes. These are vital—but they do not tell the whole story. Safety is also about how patients experience their care. Did they feel heard? Were things explained clearly? Were they treated with dignity and supported during an incredibly vulnerable time? Patient stories are not just emotional accounts. They are practical tools for improvement. They help uncover risks that data may miss, reveal gaps in communication or coordination, and highlight where systems create barriers or inequalities. When listening is built into leadership and improvement work, it becomes a powerful safety intervention—helping ensure cancer care is not only effective, but truly centred on those who receive it. The Cheshire and Merseyside Cancer Alliance (CMCA) team. Further reading on the hub: How authentic patient stories can shift systems thinking and improve care Digital storytelling: Learning opportunity or reputational risk? Catching cancer early: what more can we do as GPs?

Lichen sclerosus is a skin condition that causes itchy white patches, most commonly on the genitals. There's no cure, but treatment can help relieve the symptoms. It is though to affect 1 in 100 women. The Lichen Sclerosus Guide was awarded first place in the 'Communicating effectively with patients and families' category of the 2025 Picker Experience Network (PEN) Awards. The guide has been written by people with vulval lichen sclerosus and expert healthcare professionals and researchers from the University of Bristol, University of Nottingham, East Lancashire Hospitals NHS Trust, and Nottingham University Hospitals NHS Trust. Since its launch earlier this year, the guide has been viewed by over 25,000 people in more than 50 countries. The Lichen Sclerosus Guide led by Dr Sophie Rees and Dr Caroline Owen combines clinical expertise with lived experience of vulval lichen sclerosus, offering clear, accessible information through written content, videos, animations, and downloadable tools. It contains information about symptoms, diagnosis, treatment, and support, and includes videos explaining what happens to the skin in lichen sclerosus, vulval anatomy and self-examination, and how to apply treatment to the vulva. The judging panel praised the guide for its inclusive, evidence-based approach to tackling stigma and improving health literacy. They commented that: “It empowers patients, supports clinicians and bridges gaps in care, making it a model for effective communication and partnership in healthcare.”

Across the healthcare sector, evidence of patient involvement leading to positive outcomes is ever-growing; however, little movement seems to have been made. Oxleas NHS Foundation Trust have been working to increase involvement across all aspects of their Trust, not only in patient facing services but also within Corporate services. Find out more from the presentation slides and poster presentation attached. Oxleas were finalists in the 2025 Picker Experience Network Awards (PEN Awards). In 2021, Oxleas’ Quality Management Team (QMT) implemented the 'Improving Lives' internal assurance programme, which included training staff to use frameworks and tools to support the assessment of services and prepare clinical teams for CQC inspections. In 2023, the Quality team identified that feedback from patients and families was not being prioritised for collection during reviews. Following discussion with the Involvement Team and reviewing current involvement opportunities, Quality Team recognised how lived experience can improve outcomes and user satisfaction across services. They decided to develop and introduce the concept of 'Lived Experience Reviewers' into quality systems. This method was not based on principles or research but has been based on feedback and population need. This is an innovative approach to enabling those with lived experience to have a say in how their services are running.

Picker published its first State of Person Centred Care report on 29th January 2026, which brings together the findings from the nine national experience surveys they are commissioned to deliver on behalf of the Care Quality Commission (CQC) and NHS England and mapped them against their eight Principles of Person Centred Care. Their report also includes examples of existing best practice and a set of recommendations to strengthen patient voice in the NHS of today and tomorrow. This webinar will explore the report and its findings in more detail, with presentations from members of the Picker team, and an opportunity for audience questions. Register here.

Steph O'Donohue is the Founder of TIGER UK—a social enterprise set up to help improve patient experiences of gynaecological care through collaboration. In this blog, Steph says that Cervical Cancer Prevention Week is an opportunity to validate and help improve patient experiences. She calls for more information to be shared with both patients and doctors that helps to increase compassion, understanding and accessibility. It's Cervical Cancer Prevention Week and the drive to increase screening uptake has been visible through online posts and campaigns. This is critical work, but I can't help but notice the lack of emphasis on patient experience. The statistics, clinical explanations and even comedic memes have been plentiful this year, but what about the reassurance? What about the acknowledgement that it's not as simple as 'make sure you go — it could save your life' for many people? These procedures are really important but they can also feel exposing, embarrassing, triggering and distressing for some people. It's important that we not only acknowledge these valid experiences, but that proactive support from providers is abundant. Patients need to know they will be met with compassion and kindness. I came across a wonderful post by Dr Valerie Ademisoye on Instagram. She acknowledged the worry some people have in attending, and shared four tips for making smear tests easier. It was the most patient-centred post I had seen during this campaign week. It was empowering and empathetic. It offered practical advice. Dr Aziza Sesay has since posted with similar helpful and trusted advice. These messages are important. In an ideal world though patients shouldn't have to be empowered to know how to ask for adjustments that would make cervical screenings easier. Instead, every service provider would ask the right questions, and put the right things in place to make sure that person feels safe and comfortable. Otherwise there is an unfair burden on patients, and those who are less informed (through no fault of their own) are potentially less likely to have positive experiences. Next year I would love to see more of an emphasis on support and reassurance, including: Practical examples from healthcare professionals who have worked in partnership with patients to understand how to improve experiences of cervical screening, so others can learn from this. Leaders highlighting the importance of trauma informed training (especially for anyone performing vaginal access procedures). Sharing of resources to help healthcare professionals support survivors of sexual violence and abuse who may be feeling particularly anxious about their appointment. Local service providers proactively inviting people who feel unsure about attending to call and have an informal, no pressure chat to see how/if they can support. More information for doctors and patients to support accessibility needs. For example, how to request translation services, or how people with a learning disability or physical disability can be better supported before, during and after a smear test. Information about how trans men and non-binary people assigned female at birth who are registered with a GP as male can opt-in for screening. Information about who is eligible for at-home testing. Preventing cervical cancer isn't just about explaining the risks of not being screened and encouraging people to book an appointment. It is about making sure that every patient considering having a cervical screening is supported throughout to have the most positive and dignified experience possible. Further reading on the hub: Top picks: 10 resources about improving access to cervical screening Have your say Are you a healthcare professional who works in women’s health or cancer services? Share your practical examples of how you have improved cervical screening. Are you a patient? Perhaps you have an experience of cervical screening or cervical cancer that you would like to share? We would love to hear from you! Comment below (register as a hub member for free first) Get in touch with us directly to share your insights

The Parkinson’s UK Excellence Network has launched a new tool to support people with Parkinson's who are going into hospital: the Parkinson's Away-From-Home Kit.  The kit comes from 3 years of collaboration with people with Parkinson’s and carers to understand the challenges they face when going into hospital and how we can help. People with Parkinson’s can choose from a range of tools to create a kit that works for them. Every item is designed to support them, and those who care for them, to advocate for their Parkinson's medications to be administered on time, every time. This is a wonderful new resource to share with your patients with Parkinson’s to support them to be prepared for every day.  Read about the kit and order the tools from the link below. Further reading on the hub: Keeping patients with Parkinson’s safe in hospital: 4 key actions for staff Preparing to go into hospital – tips for people with Parkinson's and their carers Top picks: 16 resources about Parkinson’s