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Sebastian Gonzalez, hub topic lead and learning disability lead nurse at Barts Health NHS Trust, reflects on the lack of progress made in reducing health inequalities for people with a learning disability despite a number of reports and recommendations over the last few years. He highlights the new reasonable adjustment digital flag that is being implemented across the NHS, which allows the sharing of detailed information across the healthcare system about the reasonable adjustments individuals require. Sebastian asks you to explore what your organisation is doing to implement the reasonable adjustment digital flag to help identify and support patients with a learning disability. Since the publication of the Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD),[1] we have been aware of the profound health inequalities across the country. Currently, it is estimated that 1.5 million people with a learning disability live in the UK,[2] and more recent data show that, on average, adults with a learning disability die 19.5 years earlier than the general population and that 40.2% of their deaths are considered avoidable.[3] The National Confidential Enquiry into Patient Outcome and Death report The National Confidential Enquiry into Patient Outcome and Death (NCEPOD) is a UK based charity that reviews the quality of healthcare in order to improve patient safety and outcomes. In 2026 they published a study report: Learning Together: A Review of the Quality of Care Provided to Adults with a Learning Disability When Admitted to Hospital Acutely Unwell (NCEPOD).[4] More than a decade after CIPOLD first exposed the health inequalities experienced by people with a learning disability, the findings of this report demonstrate that significant challenges remain and that further action is needed to improve patient safety and healthcare outcomes. The study focused on adults aged 18 years and over with a learning disability who were admitted to hospital as an emergency between 1 July and 30 September 2024. Data were gathered from a range of sources, including clinician questionnaires, primary care questionnaires, organisational questionnaires, surveys completed by healthcare professionals, patients and carers, and detailed reviews of patient case notes. Key findings: Incorrect use of the terms learning disability and learning difficulty. Underuse of flagging and alert systems. Failure to consistently implement reasonable adjustments. Poor adherence to the Mental Capacity Act. Limited involvement of people with a learning disability in their own care decisions. Unequal access to specialist learning disability services. A focus on flagging and alert systems The study found that hospital services often failed to accurately identify and flag people with a learning disability. One of the key expectations introduced in 2018 through the Learning Disability Improvement Standards for NHS Trusts was that organisations should have mechanisms in place to identify and flag patients with a learning disability, autism, or both, from the point of admission through to discharge. Yet, the report highlighted that while 89.7% of the organisations reported having flagging or alert systems in place, only 52.2% of patients had these alerts. The issues were compounded by the incorrect use of the term learning difficulty, an issue well known to people with a learning disability and those that support them.[5] Furthermore, the report identified a key link between the use of flags and the provision of reasonable adjustments, highlighting how adjustments were more likely to be made when patients had been accurately identified and flagged. Moving forward Throughout the years, several reports have provided evidence of the poorer outcomes experienced by people with a learning disability and have made recommendations on how to improve their care. Despite this, it remains clear that there is still a long way to go in reducing the health inequalities experienced by this patient group. While the process of identifying and flagging patients may seem administrative in nature, it represents an essential patient safety mechanism that helps ensure individuals receive healthcare that is reasonably adjusted to meet their needs. In addition, an effective flagging system enables organisations to monitor outcomes closely, including incidents involving this group of patients. This, in turn, can support more effective service planning and ultimately contribute to improved patient outcomes. The reasonable adjustment digital flag[6] being implemented across the NHS represents an opportunity to go beyond simply identifying and flagging patients. Not only does it allow for detailed information about the reasonable adjustments individuals require, but it also promotes the sharing of this information across the healthcare system. If your role involves improving patient safety, consider exploring what your organisation is doing to implement the reasonable adjustment digital flag, and how it identifies patients with a learning disability and ensures they receive the support they need. Small changes in these areas have the potential to make a significant difference to patient experience and outcomes. References Heslop P, et al. Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) Final report. Norah Fry Research Centre, 2013. Mencap. Learning Disability Research and Statistics. Last accessed 5 July 2026. White SA, et al. LeDeR Annual Report Learning from Lives and Deaths: People with a Learning Disability and Autistic People. The Institute of Psychiatry, Psychology and Neuroscience (IoPPN), King's College London. Last update June 2026. Tavaré A. Learning Together A review of the quality of care provided to adults with a learning disability when admitted to hospital acutely unwell. NCEPOD, 2026. Mencap. Learning Difficulties: Types, Causes and Symptoms. Last accessed 5 July 2026). NHS England. The reasonable adjustment digital flag action checklist: what you need to do to achieve compliance. 25 March 2024.

On the 23 June 2025 the Secretary of State for Health and Social Care (DHSC) announced a rapid, national, independent investigation into NHS maternity and neonatal services. This final report highlights key areas of concern, identifies barriers to delivering change and sets out a robust package of eight recommendations aimed at delivering long-term systemic and cultural transformation in maternity and neonatal care. It builds on an interim report published in February 2026. The report makes eight recommendations aimed to address the systemic problems identified in this report: The Department of Health and Social Care (DHSC) must create a statutory Maternity and Neonatal Commissioner, introducing legislation into the Health Bill at the earliest possible opportunity, and appointing a Commissioner within six months of Royal Assent. DHSC, NHS England (NHSE), Integrated Care Boards (ICBs) and NHS trusts must take action to listen to the voices of women, birthing people and families within 12 months. DHSC, NHSE and CQC must drive improvement, within 12 months, of the quality, transparency, oversight and accountability of investigations and ensure learning is captured and acted upon when things go wrong. DHSC/NHSE must design a Modern Service Framework for maternity and neonatal services within 12 months and begin rollout within 18 months. DHSC, NHSE, ICBs, NHS trusts, the General Medical Council (GMC) and the Nursing and Midwifery Council (NMC) must treat racism, discrimination and inequality as a critical maternity safety issue – within 12 months, with work starting immediately. DHSC/NHSE must clarify existing system governance, oversight and accountability structures and improve the effectiveness of regulatory oversight within nine months. DHSC, NHSE, ICBs and NHS trusts must work with colleges, universities, post graduate educators and others to improve culture and teamworking, and strengthen leadership at all levels of the system and across professions within 12 months. DHSC/NHSE must deliver estates and digital systems that are fit for modern maternity and neonatal care with 12-month, five-year and 10-year investment commitments and implementation deadlines.

Sickle cell disease can affect people of all backgrounds but is more common in African and Caribbean communities. It has become one of the fastest growing genetic conditions in England, with 250 new cases every year. People living with sickle cell disease may experience painful crises, fatigue and an increased risk of serious health complications. Despite this, the condition is often not well understood.  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. We have pulled together 8 useful resources about sickle cell disease that have been shared on the hub. They include recommendations on tackling inequalities, recognising and managing sickle cell disease in hospital, and managing pain.   1 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. 2 The King's Fund: The implicit bias of sickle cell disease Although health outcomes have improved, evidence shows that people with sickle cell still feel marginalised. Their frustrations largely stem from a perceived lack of empathy in a healthcare system that does not fully recognise their struggles. When compounded with limited treatment pathways, these poor experiences leave many feeling neglected and unsupported. This blog from CJ Nwasike discusses sickle cell health inequalities. 3 Sickle cell comparative review to inform policy report: Providing evidence-based recommendations to tackle inequalities This study analysed data across a wide range of indicators and revealed striking inequalities, which were often reflected in the experiences of patients living with sickle cell across the country. The report adds further to the urgent need to address the underlying problems affecting the quality of care for patients with sickle cell. Importantly, this comparative research shows that improvements are also needed for other severe chronic conditions, such as cystic fibrosis and haemophilia, and that lessons can be learned from successes achieved in other specialties. This report includes a set of recommendations that aim to help tackle inequalities associated with sickle cell in the UK. 4 HSSIB: Invasive procedures for patients with sickle cell disease This investigation from the Health Services Safety Investigations Body sets out to review the care of patients with sickle cell disease who need to have an invasive procedure. Invasive procedures involve accessing the inside of a patient’s body, either through an incision (cut) or one of the body’s orifices. Specifically, the investigation focused on: how haematology teams – the specialists who treat people with blood disorders – are involved and informed when a patient with sickle cell disease is treated in another area of healthcare how patients with sickle cell disease are prepared for invasive procedures how and where clinical information relevant to the patient is shared. 5 HSSIB: Management of sickle cell crisis In this investigation, 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. 6 Sickle Cell Society: 'The difference between life and death' Following on from the care failures highlighted in the 2021 report, 'No one's listening', this Sickle Cell Society report takes a deeper look at sickle cell nursing care. The findings show the need for vastly more resources, training and support in this critical area of care. The report highlights that not only is no-one listening, but that lives are still being put at risk. 7 Treating chronic pain in sickle cell disease — The need for a biopsychosocial model Clinicians are often unsuccessful at addressing chronic pain in sickle cell disease. In this perspective article in the New England Journal of Medicine, Childerhose et al. discuss how a biopsychosocial model can help capture people’s experience of chronic pain by affirming that biologic, neuropsychological, and socioenvironmental elements play a role in pain-related processes. 8 Sickle cell digital discovery report: Designing better acute painful sickle cell care The report explores the range of technology that is in place for accident and emergency clinicians, red-cell specialists, and ambulance care, to aid timely support to patients with sickle cell on their emergency hospital arrival. A number of focus groups and interviews were carried out with those that have lived experience of the disease, including patients who have suffered acute, painful sickle cell episodes during NHS A&E admissions. Research found a lack of individual care plans in place and, more broadly, no clear definition of what constitutes an actual care plan. A number of recommendations are set out in the report for the NHS and the wider healthcare system. Do you have a resource on sickle cell disease to share? We’d love to hear about it - leave a comment below or join the hub to share your own post.

Learning Disability Week is the third week of June every year. The event, organised by the charity Mencap, is an opportunity to raise awareness about different learning disabilities and challenge some of the barriers people who have learning disabilities face. According to Mencap, a learning disability is a person's reduced intellectual ability, meaning they can face difficulty with everyday activities. People with a learning disability can sometimes need extra support to learn new skills, understand complicated information or interact with other people. It can be particularly challenging for people with learning disabilities and their families when accessing healthcare services. To mark Learning Disability Week, we are sharing 18 resources, blogs and reports from the hub for patients, their families and healthcare professionals on breaking down these barriers. 1 Exploring the inequalities of women with learning disabilities deciding to attend and then accessing cervical and breast cancer screening, using the Social Ecological Model Women with learning disabilities are less likely to access cervical and breast cancer screening when compared to the general population. In this study, the Social Ecological Model was used to examine the inequalities faced by women with learning disabilities in accessing cervical and breast cancer screening in England. The authors suggest that multiple methods to reduce the inequalities faced by women with learning disabilities are needed, and that these can be achieved through reasonable adjustments. 2 Pharmacists can do more to bridge the safety gaps for people with learning disabilities People with learning disabilities are more likely to be taking multiple medicines, but labels are not designed with them in mind. This article in the Pharmaceutical Journal looks at a project run by a team at Leeds and York Partnership NHS Foundation Trust. The team ran exploratory workshops to listen to how people with learning disabilities engaged with information on medicines at home, at the doctors and at the pharmacy. The project highlighted that it is time to move away from standard labels and look towards more personalised medicine labels, actively promoting ways to support people with learning disabilities in taking their medicines. 3 Exploring deep sedation at home to support people with learning disabilities to access medical investigations with minimal distress In this blog, Mandy Anderton, a Clinical Nurse specialising in learning disability, explains how they are using shared decision making and reasonable adjustments to implement a new care pathway, where patients with a learning disability needing to undergo a medical investigation can receive deep sedation within their own home. Working with patients, carers, relatives, anaesthetists and others, the aim is to improve access to important medical investigations with minimal distress, where other avenues have been exhausted. 4 NHS England: Ask Listen Do – feedback, concerns and complaints Ask Listen Do resources are designed to support organisations to listen, learn from and improve the experiences of children and adults who are autistic or have a learning disability, their families and carers, and make it easier for people, families and paid carers to give feedback, raise concerns and complain. 5 NHS England: Guidance to support implementation of the Mental Capacity Act in acute trusts for adults with a learning disability This guidance supports trusts and community providers in enabling frontline staff to fulfil their legal requirements under the Mental Capacity Act (MCA) 2005, specifically when supporting people with a learning disability. Leadership within Trusts have been asked to ensure they understand the guidance, take the actions indicated and make these resources available to all frontline staff. 6 Tommy Jessop: Why I investigated hospital care for people like me People with a learning disability are more than twice as likely to die from avoidable causes than the rest of the population. Actor Tommy Jessop and BBC Panorama investigated some of the stories of families who say they were let down by their medical care. 7 How can GP practices help improve health outcomes for people with learning disabilities? In this Patient Safety Learning interview, Mandy Anderton explains some of the barriers people with a learning disability face in accessing safe care and how adjustments can be made within GP practices to improve outcomes. Mandy lists national improvements that she believes would reduce health inequalities in this area. 8 Making reasonable adjustments for patients with a learning disability is G.R.E.A.T. Developed by David Havard, this poster shows a number of ways in which reasonable adjustments can easily be made for patients with a learning disability. 9 How the reasonable adjustment digital flag can help identify and support people with a learning disability Sebastian Gonzalez, hub topic lead and learning disability lead nurse at Barts Health NHS Trust, reflects on the lack of progress made in reducing health inequalities for people with a learning disability despite a number of reports and recommendations over the last few years. He highlights the new reasonable adjustment digital flag that is being implemented across the NHS, which allows the sharing of detailed information across the healthcare system about the reasonable adjustments individuals require. 10 HSSIB: Caring for adults with a learning disability in acute hospitals The aim of this investigation and report is to help improve the inpatient care of adults with a known learning disability in acute hospital settings. It focuses on people referred urgently for hospital admission from a community setting, such as a person’s home or residential home. 11 Video: The Oliver McGowan Mandatory Training on Learning Disability and Autism This animation aims to help staff and employers across health and social care understand Oliver's Training and why it is so vitally important. It was co-designed and co-produced with autistic people and people with a learning disability. Oliver McGowan died aged 18 in 2017 after being given antipsychotic medication to which he had a fatal reaction. He was given the medication despite his own and his family's assertions that he could not be given antipsychotics, and the fact that this was recorded in his medical records. The animation tells his story and highlights the increased risks facing people with learning disabilities and autism when accessing healthcare. 12 Palliative Care for People with Learning Disabilities The Palliative Care for People with Learning Disabilities (PCPLD) is a charity created to ensure that patients with learning disabilities receive the coordinated support they need throughout their life. The PCPLD Network brings together service providers, people with a learning disability and carers working for the benefit of individuals with learning disabilities who have palliative care needs. 13 Nobody left behind: Improving the health of people with learning disabilities and reducing inequalities across primary care Mandy Anderton talks in depth about the cross-system programme they launched in Salford to improve the health of people with learning disabilities and reduce inequalities across primary care. Mandy shares their award-winning poster, summarising the programme’s activities and outcomes, and gives her top tips for delivering a successful patient safety improvement project. 14 Reasonable adjustments and designing services for patients and people with learning disabilities Caring for people with learning disabilities in an acute hospital setting can be challenging, especially if that patient has transitioned from children’s services to adult services. The experience in children’s acute care differs to adult acute care; this difference in processes of care can cause great anxiety for the patient and their family and carers. The reasonable adjustments that were perhaps made and sustained in children’s services may now not exist. The purpose of this blog is to demonstrate the importance for services to be designed around patients’ needs with patients, families and carers. If we get this right, the quality of care given will be improved, patient satisfaction increases and, in turn, a reduction in patient harm. 15 Cervical screening for people with learning disabilities: Learning resource for sample takers (NHS Wessex Cancer Alliance) Cervical cancer is preventable. By 2040 the NHS in England is aiming for a cervical cancer incidence rate of below 4 per 100,000 women (elimination status). To achieve this, we need to increase HPV vaccination rates and improve attendance for routine cervical screening particularly in younger people and underserved communities including patients with learning disabilities. This learning resource from the NHS Wessex Cancer Alliance explains the misconceptions and barriers to cervical screening, the consent and best interest decisions, and the role of the sample taker and the reasonable adjustments that can be made. 16 Safety spotlight: Mothers with a learning disability - Maternity and Newborn Safety Investigations (MNSI) Maternity care should be responsive to every woman’s needs. This Maternity and Newborn Safety Investigation (MNSI) safety spotlight focuses on mothers with a learning disability. 17 HSSIB investigation. Insulin: supporting safe self-administration for patients in the community with a disability Many people with diabetes manage and administer their own insulin, either by injection or using a combined monitor/pump device (a hybrid closed loop system). However, a disability or impairment may affect their ability to safely manage their own insulin if they are not supported. This can lead to short-term and long-term health problems, which can be life threatening. This Health Services Safety Investigation Body (HSSIB) investigation explored the the following areas in relation to the patient safety issue: supporting the development of people’s competency – that is, their skills, experience, knowledge and ability – to manage insulin recognising and responding when people’s circumstances change, such as deterioration in a disability assessment of people’s mental capacity to make decisions in relation to insulin. 18 Learning Together - A review of the quality of care provided to adults with a learning disability who were admitted to hospital acutely unwell The National Confidential Enquiry into Patient Outcome and Death (NCEPOD) reviewed the care of adults with a diagnosed learning disability who attended/were admitted to hospital as an emergency between 1 July and 30 September 2024. The recommendations highlight areas that are suitable for regular local clinical audit and quality improvement initiatives by those providing care to this group of patients. 19 Voices for Safety podcast: Unequal cancer care for people with a learning disability in the UK This episode of Voices for Safety explores a critical patient safety issue: the inequalities people with a learning disability face when accessing cancer care. Host Dr Louise Gorman and Dr Oliver Kennedy explains how they are less likely to be referred for specialist tests, more likely to be diagnosed at a later stage, and around half as likely to receive treatment, resulting in much shorter survival times. They explore why these gaps exist – from communication challenges and diagnostic overshadowing to systemic barriers in screening and treatment – and discuss what needs to change across prevention, diagnosis, and care to create a more equitable system. Do you have a resource or story to share about learning disabilities? 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 webinar for Patients Association Patient Partnership Week will explore the inequities that shape patients’ access to treatment and care, and why many people still face barriers to receiving timely, effective support. The discussion will examine the structural challenges within the health system that affect uptake and adoption of treatments, including why innovations can take so long to reach patients in practice. Panellists will also consider the significant regional variation in access to care, and the impact this has on outcomes and patient experience. Importantly, the session will focus not only on identifying the problems, but on exploring practical solutions to create a fairer, more equitable system for all patients. Speakers Will Pett, Interim Director of Policy & External Affairs at Healthwatch England Giles Lomax, CEO, Spinal Muscular Atrophy UK Kirstin Spencer, patient Register

Equity and access are central to safe, fair, and people-centred healthcare. Yet many patients continue to face financial, geographic, cultural, and system-level barriers that limit their ability to receive timely and quality care. This webinar, organised by the WPA Asia Pacific Region Steering Committee, will bring together experts, patient advocates, and health leaders to explore how patient organizations can help identify barriers, generate evidence, influence policy, and improve access to services, medicines, and diagnostics. Through expert presentations and a focused panel discussion, the session will highlight regional experiences from the Asia Pacific region while offering insights relevant to a global audience. Speakers will share practical examples of patient-led action, collaboration with health authorities, and approaches that strengthen fairness, accountability, and sustainable system improvement. Learn about the main equity and access challenges experienced by patients, with emphasis on the Asia Pacific region. Hear expert insights on how patient organizations can drive policy and service improvement. Discover practical examples of patient-led initiatives that strengthen fairness, accountability, and access to care. Gain understanding of how patients and patient organizations can work with health authorities to improve health system performance. Register