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  1. Content Article
    When considering the persistence of unsafe care, a recurring theme that emerges is a failure to involve patients in their own care. Patient safety concerns raised by patients and family members are too often not acted on and, when harm occurs, they are often left out of the investigation process. As set out in Patient Safety Learning’s A Blueprint for Action, we share the view that patient engagement is key to improving patient safety, with this forming one of our six foundations of safer care.[1] The NHS Patient Safety Strategy identifies the involvement of patients in patient safety “throughout the whole system” as a key part of achieving its future patient safety vision.[2] The strategy includes plans to create a patient safety partners framework; earlier this year, the NHS published a consultation on its draft Framework for involving patients in patient safety.[3] In this blog, we will provide a summary of our feedback to the consultation. You can find our full submission at the end of this blog. Involving patients in their own safety The NHS Framework is divided into two parts, the first of which sets out the broad approach that should be taken to involving patients in their own healthcare and safety. We particularly welcome its emphasis on: encouraging patients to ask questions; if problems occur, the importance of providing information and help to maintain patients’ safety; the role of patient incident reports and complaints as a source of learning. In our response, we fed back with our thoughts on improvements in two specific areas - complaints and patient safety incident reporting. Complaints We share the view set out in the Framework that patient complaints should be viewed as “a valuable resource for monitoring and improving patient safety”.[3] We believe it’s important the Framework is joined up with the ongoing work of the Parliamentary and Health Service Ombudsman (PHSO), who have recently completed a consultation on a new Complaints Standard Framework for the NHS.[4] We believe that this presents an opportunity to embed patient safety into these processes and we responded to the PHSO consultation highlighting this. Patient safety incident reporting The Framework highlights the importance of patients reporting patient safety incidents, noting that the future introduction of a new Patient Safety Incident Management System will create “new tools to more easily participate in the recording of patient safety incidents and to support national learning”.[3] We believe more needs to be to be done to address the cultural barriers that deter patients from reporting concerns. Patients, carers and families need to feel assured that their stories and testimonies are welcome. Alongside this, it is crucial that, when concerns are reported, they are used to inform the assessment of risk and patient safety. As noted in the Cumberlege Review, not only are incidents not being reported but the existing systems “cannot be relied upon to identify promptly significant adverse outcomes arising from a medication or device because it lacks the means to do so”.[5] Patient Safety Partners The second part of the Framework is concerned with the newly proposed role of Patient Safety Partners (PSPs) in NHS organisations. PSPs would formally participate in safety and quality committees, patient safety improvement projects and investigation oversight groups. In our consultation response, we highlighted several areas where we feel these proposals require strengthening if they are to be successful. Training and guidance for staff The Framework rightly acknowledges the importance of having appropriate training and guidance for staff to help support the new PSP roles, pointing towards the new National patient safety syllabus as a key source. We have concerns that the National patient safety syllabus, in its current form, does not have a strong enough focus on patient involvement to provide this support. We highlighted the need for a greater emphasis on the skills and knowledge required to understand why and how patients can be actively involved in patient safety in our response to the consultation on the draft syllabus earlier this year.[6] We believe the syllabus could be significantly strengthened by drawing on further research and resources available in this area, such as the World Health Organization (WHO) Patient Safety Curriculum Guide.[7] Support and peer networks for PSPs We believe there needs to be more clarity about the induction and training that would be made available to PSPs. We also make the case that PSPs need access to networks with their peers PSPs in other organisations, enabling them to share good practice for safety improvement and receive support from others. We believe that it would be beneficial to create these networks alongside the new PSP roles. We suggest it would be helpful to draw on experiences of other programmes involving patients in patient safety, such as the WHO Patients for Patient Safety programme in the UK and the Canadian Patients for Patient Safety programme.[8] [9] Patient Safety Specialists The Framework makes brief reference to the relationship between future PSPs and the newly proposed Patient Safety Specialists, which all trusts and CCGs have been asked to put in place by the end of November.[10] We believe that if Patient Safety Specialists are to work effectively in organisations then these roles will need to be filled by leaders with expertise in patient engagement. Responding to a consultation earlier this year, we commented that those filling these roles will need strong skills and experience.[11] We also believe the Framework should place a great emphasis on the role of Patient Safety Specialists in supporting the work of PSPs. Co-production In our feedback, we also argue that there should be a strong emphasis on co-production with PSPs and more broadly throughout this Framework. ‘Co-production’ is an activity, an approach and an ethos which involves members of staff, patients and the public working together, sharing power and responsibility across the entirety of a project.[12] In our view, projects and patient safety programmes should always be co-produced with patients where possible. What needs to be included in the Framework As well as commenting on the specific proposals of the Framework, we identified two additional areas which we believe should be added to it: 1. Measuring and monitoring performance Patient Safety Learning believes that, to make improvements in the involvement of patients in patient safety, we need to be able to clearly measure and monitor our progress. Publicly reporting on changes and improvements made through patient involvement and patient safety allows for sharing examples of good practice. It would also mitigate against concerns that the role of PSP could become tokenistic in some organisations, resulting in little real impact. 2. Restorative Justice Many national healthcare systems and organisations are actively listening to, and engaging with, patients for learning through restorative justice. Restorative justice in healthcare allows patients to be heard, listened to, and respected. By patients, clinicians, healthcare leaders and policy makers engaging with one another on patient safety, it can help to establish trust with the patient. This can also provide the impetus for learning and action to be taken to prevent future harm. We commend the approach adopted by New Zealand’s Ministry of Health in how it responded to harm from surgical mesh and the impact this has had on improvements in patient safety.[13] Closer to home, there are some beacons of good practice within the NHS, such as the Mersey Care NHS Foundation Trust.[14] We believe that the NHS should do more to share and promote a just and learning culture, asking organisations to develop and publish goals on their progress. Only one piece of the puzzle We welcome and recognise the positive steps being set out in the Framework to improve patient involvement in patient safety within the NHS. Our comments and suggestions for improvement are mainly centred around the need to ensure other key pieces are in place. Significant change is still needed. The Framework focuses on increasing patient involvement in governance and decision-making. This wider need for change in how we engage patients in patient safety is outlined in the recently published WHO Global Patient Safety Action Plan 2021-2030.[15] It promotes a range of actions for governments and healthcare organisations to help engage patients and their families in patient safety; we would expect to see this reflected in the work of NHS England and NHS Improvement. Strengthened as we suggest, we believe that the Framework could make a big difference to improving patient involvement with patient safety. References Patient Safety Learning. The Patient-Safe Future: A Blueprint for Action, 2019. NHS England and NHS Improvement. The NHS Patient Safety Strategy: Safer culture, safe systems, safer patients, July 2019. NHS England and NHS Improvement. Framework for involving patients in patient safety, 10 March 2020. PHSO. Making Complaints Count: Supporting complaints handling in the NHS and UK Government Departments, July 2020. The Independent Medicines and Medical Devices Safety Review. First Do No Harm, 8 July 2020. Patient Safety Learning. Patient Safety Learning’s response to the National patient safety syllabus 1.0, 28 February 2020. World Health Organization. Patient Safety Curriculum Guide, 2011. Action Against Medical Accidents. Patients for Patient Safety, Last Accessed 15 October 2020. Canadian Patient Safety Institute, Patients for Patient Safety Canada, Last Accessed 16 October 2020. NHS England and NHS Improvement. Patient Safety Specialists, Last Accessed 15 October 2020. Patient Safety Learning. Response to the Patient Safety Specialists consultation, 12 March 2020. Dr Erin Walker, What should co-production look like?, 1 April 2019; National Institute for Health Research, Guidance on co-producing a research project, March 2018. Jo Wailling, Chris Marshall & Jill Wilkinson. Hearing and responding to the stories of survivors of surgical mesh: Ngā kōrero a ngā mōrehu – he urupare (A report for the Ministry of Health). Wellington: The Diana Unwin Chair in Restorative Justice, Victoria University of Wellington, 2019. Mersey Care NHS Foundation Trust. Just and Learning Culture – What it Means for Mersey Care, Last Accessed 16 October 2020. World Health Organization. Global Patient Safety Action Plan 2021-2030: Towards Zero Patient Harm in Health Care, 28 August 2020.
  2. Content Article
    CAHPS surveys CAHPS surveys ask patients to report on their experiences with a range of health care services at multiple levels of the delivery system. Some CAHPS surveys ask about patients' experiences with providers, such as medical, groups, practice sites, and surgical centers, or with care for specific health conditions. Other surveys ask enrollees about their experiences with health plans and related programs. Finally, several surveys ask about experiences with care delivered in facilities, including hospitals, dialysis centers, and nursing homes. CAHPS databases For each survey, you can download formatted survey instruments, guidance for administering them, and information on analysing and using the results. Information in the guidance documents is based on the survey developers' extensive research into best practices in survey design and administration as well as analyses of data collected during the field testing of each instrument. AHRQ does not require the use of any surveys or the use of a specific methodology for sampling or survey administration. CAHPS Ambulatory Care Improvement Guide The CAHPS Ambulatory Care Improvement Guide is a comprehensive resource for health plans, medical groups, and other providers seeking to improve their performance in the domains of patient experience measured by CAHPS surveys of ambulatory care. Use this guide to help your organization: Cultivate an environment that encourages and sustains improvements in patient-centered care. Analyze the results of CAHPS surveys and other forms of patient feedback to identify strengths and weaknesses. Develop strategies for improving performance.
  3. Content Article
    The tools include: Seven health literacy tools for pharmacy: Pharmacy Health Literacy Assessment Tool & User's Guide. Training Program for Pharmacy Staff on Communication. Guide on How To Create a Pill Card. Telephone Reminder Tool To Help Refill Medicines On Time. Explicit and Standardized Prescription Medicine Instructions. How to Conduct a Postdischarge Followup Phone Call Health literacy tools to improve communication for providers of medication therapy management Curricular modules for pharmacy faculty. Resources for pharmacists interested in understanding more about health literacy. Health literacy tools to improve communication for providers of medication therapy management.
  4. Content Article
    In March 2020, the pandemic hit. They needed to take the approach online and find an engaging way to keep the conversations going, whilst maintaining the quality and integrity of the Whose Shoes? approach which is known for promoting energy and action, tapping into passion for quality improvement. How could the best ideas emerging during the pandemic, be nurtured and grown? This report Keeping the conversations alive during the pandemic to build the future of health and social care looks at how they have managed to maintain the momentum of their work at such an important but challenging time.
  5. Content Article
    This AHRQ toolkit provides evidence-based guidance to adult and paediatric practices to ensure that systems are in place to promote better understanding by all patients, not just those you think need extra assistance. The toolkit is divided into manageable chunks so that its implementation can fit into the busy day of a practice. It contains: - 21 tools (3-5 pages each) that address improving: spoken communication. written communication. self-management and empowerment. supportive systems. - Appendices (over 25 resources such as sample forms, PowerPoint presentations, and worksheets). - Quick start guide.
  6. Content Article
    LATEST Patient Safety Weekly Update #5 (15 October 2020) Patient Safety Weekly Update #4 (8 October 2020) Patient Safety Weekly Update #3 (1 October 2020) Patient Safety Weekly Update #2 (23 September 2020) Patient Safety Weekly Update #1 (17 September 2020)
  7. Content Article
    A dangerous silence Historically, the combination of being a common symptom but also a massive taboo has meant that incontinence has sometimes slipped through the cracks, so to speak. A group of UK charities, working for conditions where the disease or treatment can cause incontinence issues, found that stigma had a negative effect on research funding and investment.[3] There is also a lack of appropriate recognition in policy forums and political public health discussion. Some things are changing, and the NHS recognises continence and pelvic health in its five-year plan, but the stigma is still creating barriers to safe, quality care. We’ve known for some time that incontinence can negatively impact physical and mental health and overall quality of life. A significant percentage of patients with urinary incontinence suffer from depression.[4,5] The situation gets more worrying the deeper the dive into the murky worlds of faecal incontinence, which is perhaps the most smothered in embarrassment, discomfort and taboo. We know faecal incontinence is often under-reported, even amongst communities such as older women where it is relatively common.[6] The condition causes psychological distress in patients and can sometimes have a potentially devastating impact on sexual function. Some studies have suggested healthcare professionals can be reluctant to start investigations and enquiries about faecal incontinence as it can be a complex area to assess and they may not necessarily know a lot about current management.[7] That, combined with patients’ understandable sense of shame and reluctance, means silence wins, again. And when it does, it provides the perfect breeding ground for insidious inequalities and poor quality of life for the incontinent patient. Active screening could surely prevent actual lived misery. Also, ‘urge’ urinary incontinence (when urine leaks as you feel a sudden, intense urge to pee, or soon afterwards) is significantly associated with falls in older patients,[8] depression, urinary tract infections, increased BMI, diabetes and death. So, the safety implications for patients are clear. The most common forms of urinary incontinence can often be cured – sometimes with surgery, but far more often with short, cheap interventions like pelvic floor physiotherapy. However, a society-wide unwillingness to talk about it badly hampers patient-doctor conversations. In the UK, patients take an average of seven years to seek medical help for post-birth incontinence.[9] A long time to suffer the effects in silence. If patients don’t feel able to seek help, their continence issues could potentially worsen or they could develop related conditions and comorbidities. We know that comorbidity is associated with worse health outcomes, more complex clinical management and increased health care costs. When incontinence is a side effect of something more ‘serious’ – part of a neurological disorder, a cancer treatment, the reason for a fall or infection – it never seems to be at the ‘top of the list’ of things to talk about, despite the huge impact it has on a person’s daily life.[10] We have to ensure that incontinence is spoken about in settings beyond those dedicated to maternity, postnatal and pelvic healthcare. If patients with conditions linked to a higher prevalence of incontinence (e.g. COPD in women) are not asked about it, the silence and stigma will continue.[11] I’m a writer, a patient and a lay contributor to healthcare initiatives. I’m not a researcher or a clinician. But I do have insight into incontinence after writing and speaking widely about it. This year I launched my book, an intimate memoir and wider take on being an incontinent woman, PMSL: Or How I Literally Pissed Myself Laughing & Survived The Last Taboo to Tell The Tale. Anecdata from this work has revealed that many women who experienced urine leaking post-birth were brushed off by practitioners or labelled as ‘normal’. Some were told that they were making a fuss or complaining. Sadly, these experiences are not uncommon. The recent Cumberlege Review highlighted similar attitudes towards women who underwent surgical mesh implants. Adopting a safer approach We really have to change the way we approach incontinence. We have to avoid dismissing, ignoring or trivialising it. If incontinent men and women are told their leaking is ‘just’ anything, ‘just’ an oops moment, ‘just’ a brief side effect, ‘just’ an inevitability after a vaginal delivery, ‘just’ a problem for their male partner in sex, ‘just’ a part of aging, then they are less likely to speak up or feel able to get help. They are already conditioned to put up and shut up. And that can make them more susceptible to further harm, both physically and mentally. By speaking about incontinence widely, clinicians will help it to become recognised as a legitimate and non-taboo healthcare conversation. This will mean more patients will be referred for help if incontinence is part of the full burden of their other conditions. It will also set a tone for stepping away from the harmful silence of the past. Good practitioners are also mindful of the safety issue posed by not ensuring that the incontinent patient’s mental health is taken care of. They are prepared to create space for some of the most embarrassing or uncomfortable issues incontinent patient might face – such as sexual dysfunction or leaking during sex. Ignoring incontinence may be less awkward or allow people to avoid difficult conversations. However, like all taboos in medicine, this comes at a cost to patients – leaving them prone to worse health outcomes. We can all do better than that. Get 20% off Luce Brett's book Members of the hub can receive a 20% discount on Luce’s best-selling book, PMSL Or How I Literally Pissed Myself Laughing & Survived The Last Taboo to Tell The Tale. To access the discount, please sign up to the hub and request the code by emailing us at content@pslhub.org. References 1. European Guidelines on Urinary Incontinence. World Federation of Incontinence and Pelvic Problems. 2. Excellence in Continence Care. NHS England. 2018. 3. “My bladder and bowel own my life.” A collaborative workshop addressing the need for continence research. 2018. 4. Steers WD, Lee K-S. Depression and incontinence. World J Urol 2001; 9: 351–357. 5. Incontinence, anxiety and depression. Beyond Blue and the Continence Foundation of Australia. 6. Meyer I, Richter HE. Impact of Fecal Incontinence and Its Treatment on Quality of Life in Women. Womens Health (Lond) 2005; 11(2): 225–238 7. Meyer I, Richter HE. Impact of Fecal Incontinence and Its Treatment on Quality of Life in Women. Womens Health (Lond) 2005; 11(2): 225–238 8. Brown JS, Vittinghoff E, Wyman JF. Urge urinary incontinence was associated with increased risk of falls and non-spinal, non-traumatic fractures in older women. Evidence-Based Nursing 2001; 4 (1): 26. 9. Breaking the taboo of incontinence after childbirth. National Childcare Trust. 2016. 10. “My bladder and bowel own my life.” A collaborative workshop addressing the need for continence research. 2018. 11. Button BM, Holland AE, Sherburn MS et al. Prevalence, impact and specialised treatment of urinary incontinence in women with chronic lung disease. Physiotherapy J 2019 105 (1): 114-119.
  8. Event
    UCL has been working on developing their Centre for co-production as a mixed group of members of the public, researchers, patients, carers, healthcare practitioners, charities, local authorities and students (really anyone who wants to get involved or is interested in co-production!), since back in October 2017. After almost exactly 3 years they are officially launching it This event will be a celebration of all things co-production, highlighting the importance of this approach to research, policy-making and service development/improvement. It will include short snippets from UCL's ’Share your Co-pro Story’ campaign, the unveiling of their new strategy and new name, logo, and identity, and a chance to meet other likeminded people and have a chat... Find out more and register
  9. Event
    This virtual conference will focus on measuring, understanding and acting on patient experience insight, and demonstrating responsiveness to ensure Patient Feedback is translated into quality improvement and assurance. Through national updates and case study presentations the conference will support you to measure, monitor and improve patient experience in your service, and ensure that insight leads to quality improvement. Book your place or email kerry@hc-uk.org.uk hub members can receive a 20% discount by quoting HCUK20psl when booking Follow the conference on Twitter ##PatientExp
  10. Content Article
    A sequential qualitative method study was conducted and integrated with the quantitative study performed by Matos, Weits, and van Hunsel to complete a mixed method study. The qualitative phase expands the understanding of the quantitative results from a previous study by broadening the knowledge on external barriers and internal barriers that patient organizations face when implementing PV activities. The strategies to stimulate patient-organisation participation are the creation of more awareness campaigns, more research that creates awareness, education for patient organisations, communication of real PV examples, creation of a targeted PV system, creation of a PV communication network that provides feedback to patients, improvement of understanding of all stakeholders, and a more proactive approach from national competent authorities. Both study phases show congruent results regarding patients’ involvement and the activities patient organisations perform to promote drug safety. Patient organisations progressively position themselves as stakeholders in PV, carrying out many activities that stimulate awareness and participation of their members in drug safety, but still face internal and external barriers that can hamper their involvement.