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In this blog, Jean Almond and Sam Freeman Carney from Parkinson’s UK explain how their new time critical medication dashboard is: exposing the cost of missed and delayed medication encouraging renewed focus on improvements reducing avoidable harm. This blog is part of a series on noncommunicable diseases, in support of World Patient Safety Day 2026. People with Parkinson’s rely on their medication, and need to take it on time. A delay of as little as 30 minutes can mean the difference between functioning well and being unable to move, walk, talk or swallow. Missing doses can lead to severe and irreversible harm to their health. People with Parkinson’s need to get their medication on time, every time. It is deeply concerning, then, that less than half (42%) of people with Parkinson’s admitted to hospital last year received their medication on time, every time. To help support the NHS in addressing this issue, Parkinson's UK worked with The Public Service Consultants (The PSC) to develop a ground-breaking new data dashboard, which shows the health economic benefits of improving time critical medication management for people with Parkinson's in hospitals. What does the time critical medication dashboard do? The time critical medication dashboard estimates the direct cost for hospitals and the impact on patient outcomes of time critical Parkinson’s medication delays and omissions. It does so at national, Integrated Care Board (ICB), NHS Trust and health board levels across England, Scotland, and Wales. The model considers impacts on key measures, including length of stay, staff time, mortality, re-admissions, and associated costs. The dashboard helps organisations evaluate different approaches to improve the timely administration of time critical medications — such as self-administration, staff training, or e-prescribing — by modelling the cost savings gained from implementing improvements. Real-world success and traction The dashboard has already: achieved over 3,500 views, primarily from healthcare professionals been shared through the NHS England’s three-year medicines safety improvement programme focused on time critical medication been promoted by the Royal College of Emergency Medicine (RCEM) through their time critical medication quality improvement programme in Emergency Departments. Frontline teams are already utilising the tool to build local business cases for time critical medication quality improvement projects to improve patient safety. As one NHS Trust shared: "When we found the Dashboard, it helped us to show in real terms, financial terms, the impact missed and delayed doses of [Parkinson’s] medications were going to have on our Trust. We were able to use this to gain traction and benchmark our starting position. We hope to see a significant improvement in the dashboard as we work on our [Quality Improvement Programme]." The dashboard has supercharged our work at Parkinson's UK, opening doors with previously unengaged hospitals and shifting conversations from abstract risks to concrete, localised numbers. Award winning Our dashboard won the award for the ‘Most effective contribution to improving care for those with long term conditions’ at the HSJ Partnership Awards in March 2026. This is further recognition that our tool is helping address an avoidable, recurring patient safety issue and supporting the NHS in making the urgent improvements needed across the system. How to find out more and take action Alongside the dashboard, we provide a comprehensive suite of free resources to help health systems improve how they manage time critical Parkinson’s medication: Our 'Time critical medication: 10 recommendations for your hospital', developed by NHS health professionals living with Parkinson's, enable NHS organisations to support timely, safe and appropriate medicine management for people with Parkinson's. Our suite of resources and learning supports hospital teams to deliver time critical medication to people with Parkinson's. No one with Parkinson’s should fear going into hospital because they can’t get the medication they rely on. Our dashboard is a critical new resource to show how hospitals can and need to go further. We urge health professionals, NHS Trusts, Health Boards and Integrated Care Boards to use this tool and transform their management of time critical Parkinson’s medication. Share your insights What is your experience of time critical medication? As a patient or a clinician? You can comment below (sign up first for free) or get in touch with the Patient Safety Learning hub team at [email protected].

On Thursday 17 September 2026 the seventh annual World Patient Safety Day takes place, focused on the theme of “Safe care for noncommunicable diseases”. In this blog we explain what noncommunicable diseases are, and why they are a patient safety priority. World Patient Safety Day encourages us to reflect on some of the most persistent and complex challenges facing health systems globally. Some of the most significant of these relate to noncommunicable diseases (NCDs). What are NCDs? NCDs, simply put, are long-term diseases that are not passed from person to person. These account for a significant proportion of illness, disability and premature mortality. NCDs include: cardiovascular diseases (such as heart attacks and hypertension) cancer chronic respiratory diseases (including COPD and asthma) diabetes neurological conditions genetic conditions. Unlike infectious diseases, which are caused by pathogens and can spread between individuals, NCDs are typically the result of a combination of genetic, physiological, environmental and behavioural factors.[1] Common risk factors include tobacco use, unhealthy diets, physical inactivity and harmful use of alcohol. Impact of NCDs NCDs are one of the leading causes of death worldwide. Global health estimates from the World Health Organization (WHO) indicate that over 43 million people were killed by NCDs in 2021.[2] More than 18 million NCD deaths were among people younger than 70 years of age. A recently published report from the Organisation for Economic Co-operation and Development (OECD) assessed the health and economic benefits of tackling NCDs.[3] It highlighted that: Despite decades of national efforts, NCD rates have continued to rise between 1990 and 2023. Among members of the OECD (high-income and middle-income countries), if there were no NCDs, health expenditure would be about 40% lower. Tackling and reducing the rate of NCDs is one of the biggest global health challenges we face. NCDs and patient safety While much of the discourse around NCDs focuses on prevention and public health interventions, there is an equally important patient safety dimension that warrants attention. One of the core objectives of this year’s World Patient Safety Day is to raise awareness of the patient safety challenges associated with NCDs throughout the course of a patient’s care and treatment.[4] People living with NCDs often require long-term care, multiple medications and interactions with different parts of the healthcare system. This complexity increases the risk of safety incidents such as medication errors, delayed diagnoses or fragmented care. From a patient safety perspective, NCDs highlight the need for coordinated, person-centred care. Patients with multiple conditions may see several specialists, each with their own treatment plans, which can sometimes conflict or lead to unintended consequences. Ensuring clear communication across healthcare teams, and with patients themselves, is critical to reducing harm. Health inequalities also play a significant role. In the UK and globally, NCDs disproportionately affect people in more deprived communities. These groups may face barriers to accessing care, lower health literacy and increased exposure to risk factors. Addressing these disparities is not only a matter of public health, but of patient safety and equity.[5] Role of patients and families Raising awareness of and tackling the patient safety issues associated with NCDs also requires recognition of the important role that patients and families can play. The promotion of meaningful engagement of people living with NCDs and their communities is a key objective of this year’s World Patient Safety Day.[4] People living with NCDs often develop a deep understanding of their conditions and can be valuable partners in identifying risks and preventing harm. Encouraging shared decision-making and supporting patients to speak up about concerns are key components of safer care. Looking ahead to World Patient Safety Day, it is clear that tackling NCDs is not just about managing long-term conditions—it is about designing systems that are safer, more integrated and more responsive to the needs of those who use them. This requires collaboration across sectors, sustained investment and a commitment to learning from both success and failure. By placing patient safety at the heart of NCD care, we can move towards a healthcare system that not only treats illness and reduces healthcare expenditure but actively works to prevent harm and improve quality of life for millions of people. Share your views and experience on the hub Do you have experiences or views around the theme of this year’s World Patient Safety Day that you would like to share? You can share your thoughts with us by commenting below (sign up here for free first), submitting a blog, or by emailing us at [email protected]. References 1. WHO. Noncommunicable diseases. 25 December 2025. 2. WHO. The Global Health Observatory – Noncommunicable diseases: Mortality. Last accessed 11 May 2026. 3. OECD. The Health and Economic Benefits of Tackling Non-Communicable Diseases. 15 April 2026. 4. Patient Safety Learning. World Patient Safety Day 2026. 30 March 2026. 5. Department of Health and Social Care. 10 Year Health Plan for England: fit for the future. 3 July 2025.

It is estimated that around 1 in 4 people with Myalgic Encephalomyelitis (ME) are severely or very severely affected. In this briefing paper (attached), campaign group #ThereForMe explain that due to a lack of specialist care, patients and their carers are facing immense challenges. The briefing outlines several patient safety risks, the Government response, recent changes, and a set of clear recommendations for safer care.

Over 6,000 rare diseases are characterised by a wide range of conditions and symptoms that can vary not only between diseases but also among individuals with the same condition. 72% of rare diseases are genetic, and nearly one in five cancers is classified as rare. Some common symptoms may overlap with those of rare diseases, which can make diagnosis challenging and delay access to appropriate care. These conditions can impact daily life due to their long-term, evolving nature. At Patient Safety Learning we believe that sharing insights and learning is vital to improving outcomes and reducing harm. That's why we created the hub; to provide a space for people to come together and share their experiences, resources and good practice examples. To support Rare Disease Day, we have pulled together 16 resources, including reports, guidelines and blogs, to raise awareness of the challenges faced by people with a rare disease, and to support healthcare professionals and patients and their carers. 1 England Rare Diseases Action Plan 2025 The UK Rare Diseases Framework, published in January 2021, set out a shared vision for addressing health inequalities and improving the lives of people living with rare diseases across the UK. This is the fourth action plan setting out how the Department of Health and Social Care and delivery partners will implement the UK Rare Diseases Framework in England. 2 How one woman’s missed referrals exposed a systemic gap in hereditary cancer care: Why I'm campaigning for Rachel's Rule When Stuart Ball's wife Rachel passed away in August 2025, she was just 47 years old. Her death was not inevitable. It was the result of years of missed opportunities—signs that were there in plain sight but never joined together. What happened to Rachel should never happen to another family. Stuart shares Rachel's story and tells us why he is campaigning for Rachel's Rule—a call for a system safeguard that ensures hereditary risks are not missed. 3 National Organization for Rare Disorders: Rare Disease Database for patients and families The National Organization for Rare Disorders (NORD)’s Rare Disease Database provides brief introductions for patients and caregivers to specific rare diseases. 4 OrphanAnesthesia: Patient Safety Card OrphanAnesthesia offers a Patient Safety Card for all hospitals, patients, and support groups. The patient or the physician fills in the name of the rare disease to notify the anaesthesiologist/ emergency personnel of the rare disease, and of the recommendation for the anaesthetic management. The card should be given to the anaesthesiologist before anaesthesia. It should be carried by the holder in case of emergency. 5 Highlighting Loeys-Dietz syndrome and the need for awareness Loeys-Dietz syndrome (LDS) is a genetic disorder affecting connective tissue, which supports, protects and gives structure to various tissues and organs. This article tells the story of Sharon, a 53-year-old woman from Bristol, who died in December 2022. Her family now advocates for greater awareness of LDS to prevent similar tragedies. Sharon’s death, attributed to natural causes compounded by neglect, highlights systemic failures in promptly recognising and treating her aortic dissection. 6 Rare care matters: The struggle to access diagnosis and care for rare autoimmune rheumatic disease patients The Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) has launched a report revealing that individuals living with rare autoimmune rheumatic diseases (RAIRDs) experience stark variations in their care and treatment. The report paints a concerning picture: nearly one in three respondents waited more than five years for a diagnosis, with the average wait time standing at two and a half years. 7 “No one would believe me”: A common feeling for people living with a rare disease Having a diagnosis can be very important, not only in order to consider medical needs, but sometimes it can also come as proof that something is happening to the body, proof to others that there is something going on. Several people across the globe, with different rare diseases, have shared their story, telling us about needing to be heard and understood. 8 GIRFT - Spinal surgery: National suspected cauda equina syndrome (CES) pathway Cauda Equina Syndrome (CES) is a rare but serious spinal condition and if not diagnosed and treated swiftly, it can result in lifechanging injury. Nearly a quarter of compensation claims for spinal surgery in England relate to CES. This CES pathway and accompanying guidance by the Getting It Right First Time (GIRFT) programme, aims to provide healthcare professionals working in all care settings with the ability to effectively diagnose and care for patients presenting with suspected Cauda Equina Syndrome. 9 Sickle Cell Society: Standards for the clinical care of adults with sickle cell disease in the UK These standards for the clinical care of adults with sickle cell disease were produced by the Sickle Cell Society in collaboration with a broad multi-disciplinary group of healthcare providers, patients and support groups. 10 HSIB: Management of sickle cell crisis In this investigation, the Health Services Safety Investigation Body (HSSIB) used a real patient safety incident to explore how sickle cell crises are managed within hospital settings. In particular, the investigation considered: the knowledge nursing staff may have about the care of patients in sickle cell crisis how patient-controlled analgesia (PCA) – where a patient can use a device to give themself doses of pain relief medication – is considered holistically, such as monitoring the patient and staff workload. 11 Medication supply issues: Mast cell activation syndrome (MCAS) Joy Mason is the Director of Operations, Services and Engagement at Mast Cell Action. In this blog, Joy tells us more about Mast Cell Activation Syndrome and how medication supply issues are impacting people’s lives and causing avoidable harm. 12 Neonatal herpes – more common than you think? Neonatal herpes is a rare, and potentially fatal, disease which usually occurs in the first four weeks of a baby's life. It is caused by the same virus that causes cold sores and genital infections – the herpes simplex virus (HSV). Early recognition and treatment has been shown to significantly improve babies' chances of making a full recovery. Sarah de Malplaquet, Chief Executive and Founder of the Kit Tarka Foundation, explains why they are joint-funding new research into neonatal herpes, and how the findings could help save many lives. 13 What can I do to prevent my baby getting neonatal herpes? (Kit Tarka Foundation) There are some simple things you can do to help prevent babies from catching herpes infections. These include regular hand washing, covering cold sores and not kissing babies who are not your own. The Kit Tarka Foundation provide information on neonatal herpes and how to keep your baby safe. 14 Creon shortages: “It’s just another thing patients with cystic fibrosis could do without” There is a current shortage of Creon, a pancreatic enzyme replacement therapy. Sophie, a patient with cystic fibrosis, tells us about her experience of trying to get hold of Creon and the challenges she has faced. 15 From diagnosis to system change: what rare disease is teaching us about safety, bias and AI Professor Rob Galloway is an Emergency Medicine Consultant and Founder of the charity Rare People. In this article, Rob talks about his daughter’s recent diagnosis of a rare genetic condition. He describes the barriers to safe and equitable care for people with rare diseases, and his hopes for future treatment development, supported by AI. 16 Equity for Rare: Delivering fair healthcare systems for people affected by rare conditions The Genetic Alliance UK 'Equity for Rare' report highlights the inequities the rare conditions community experiences, and found that equity broadly means ensuring that people with rare conditions can navigate the healthcare system with the same dignity and efficacy as those with common conditions. It's gives five recommendations for the Government. For more resources, take a look at our Rare diseases area of the hub. Do you have a resource or story to share about rare diseases? Could your insights or experiences help improve patient safety? Leave a comment below (join the hub for free first) or contact us at [email protected].

This is letter from #ThereForME calls for an inquiry into the persistent and historical gaps in care for those with ME and Long Covid. It is co-signed by 28 organisations and smaller initiatives and has been sent to the Chair of the Select Committee, Layla Moran MP. Patient Safety Learning are one of the signatories of this letter.  The letter recommends that an inquiry is undertaken by the Health and Social Care Committee with a remit to investigate: Current gaps in care for ME and Long Covid, and their connections to historic approaches to infection-associated chronic conditions (including NHS care and research funding). Economic impacts, including the relationship between growing economic inactivity in the UK’s working age population and the lack of meaningful service provision for people with ME and Long Covid. Recommendations to strengthen future care and research for people with ME, Long Covid and other infection-associated chronic conditions - and how this can inform wider pandemic preparedness (including public health prevention strategies to mitigate the future health burden of infection-associated chronic conditions). Attitudes towards and assistance for patients with ME and Long Covid in society, including benefits provision, disability assistance, social care and guidance for settings including workplaces and education.

Decades of research has shown that the health of the population in England is unequal, with people who live in more deprived areas experiencing illness earlier in life and dying younger. Previous Health Foundation analysis has projected that 9.3 million people could be living with major illness by 2040, which is 2.6 million, or 39%, more people than in 2019. In April, the Health Foundation’s REAL Centre published its second report in their ‘Health in 2040’ series, this time exploring how current patterns of ill health vary with deprivation across England, and to what extent this is projected to change by 2040. The findings have important implications for health inequality among the working age population and how it poses a challenge to labour supply and economic growth. This webinar will convene experts to explore what the findings mean for how we might need to change as a society, and what can we do to better prepare for the future. Register

The Patients Association is running a webinar to support Future Health’s campaign, The Forgotten Majority. This campaign aims to raise awareness among policy representatives from Government and other political parties, as well as other key stakeholders, about the real life every day challenges faced by people with long-term health conditions and advocate for meaningful policy change as we approach the General Election. This webinar will provide patient experience to bring to life policies and initiatives aimed at addressing gaps in care for people with long-term health conditions. We hope this will raise awareness among policymakers and key stakeholders about the challenges faced by the ‘forgotten majority’ and the urgency of addressing their treatment and care. Rachel Power, Chief Executive of the Patients Association, will be chairing this webinar. The panel will share their insights on the importance of addressing the needs of people with long-term health conditions, and will advocate for improved care and support services. Hopefully this will increase awareness and understanding among policymakers and key stakeholders about the challenges faced by individuals with long-term health conditions, and drive systemic change. Register for the webinar

The Child Health Clinical Outcome Review Programme has produced this review of the barriers and facilitators in transitioning children and young people with complex chronic health conditions into adult health services. Based on data on children and young people with one of 12 complex conditions identified from a sample period between 1st October 2019 and 31st March 2021, the report concludes that there is no clear pathway for the transition from healthcare services for children and young people to adult healthcare services. The report finds that the process of transition and subsequent transfer is often fragmented, both within and across specialties, and that adult services often sit only with primary care. It argues that developmentally appropriate healthcare should be everyone’s responsibility, with adequate resources needed to allow this to happen. The Inbetweeners also calls for services to: involve young people and parent/carers in transition planning and transition to adult services improve communication and coordination between all specialties be organised to enable young people to transfer to adult services effectively, and provide strong leadership at Board and specialty level at all stages of transition and transfer. The report’s recommendations highlight areas that are suitable for regular local clinical audit and quality improvement initiatives by those providing care to this group of patients. It suggests that the results of such work should be presented at quality or governance meetings, and action plans to improve care should be shared with executive boards.