Search the hub

A learning disability is a neurodevelopmental condition that affects how individuals process information, often impacting skills such as reading, communication, and memory. While many people with learning disabilities have average or above-average intelligence, they may require tailored support to navigate healthcare effectively. 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. Consider these safety prompts: How does your service record that a woman has a learning disability and how it affects her day-to-day care needs? What are the barriers to offering every woman with a learning disability the opportunity to complete a health and care passport? Could tools such as the health and care passport be used more routinely to capture communication preferences, concerns and support needs? How does your service ensure key information about learning needs and social complexities are consistently shared in discharge summaries? Have your staff been supported to undertake the government approved Oliver McGowan mandatory training on Learning Disability and Autism?

This Health Services Safety Investigation Body (HSSIB) report is the second in a series considering the self-administration of insulin by people with diabetes mellitus (diabetes) in community settings. 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. HSSIB identified incidents where a person with diabetes or their family/carer had administered insulin incorrectly (the patient safety issue of focus). In these incidents, a disability – such as a visual or memory problem – had influenced how someone had administered insulin. The investigation explored 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. Findings People with diabetes (who require insulin) are at risk of harm through the administration of insulin when pre-existing or new disabilities/impairments have not been recognised or adjusted for. People are not always empowered to become competent to manage their insulin, with assumptions made that a person is not competent to do so because of a disability/impairment. Supporting people to safely self-manage their health, including insulin, requires integrated working across community services. Where this is limited, such as due to resource challenges or limited collaboration, people are put at risk. Efforts to empower and enable people to self-manage insulin are affected by the competing demands on, and the capacity and accessibility of the community services that provide this type of support. Designated and protected resource aimed at supporting the development of insulin self-management skills have shown benefits for patient experience and have reduced demand on community services. There is no national competency framework for the management of insulin by patients and families that supports community services to identify and make reasonable adjustments for a disability/impairment. Administration of insulin by staff in care homes (delegated administration) may reduce demand on community teams but is limited by barriers to implementation, including high turnover of care home staff. Some people with type 2 diabetes may be prescribed insulin without first optimising other diabetes treatments and/or exploring preferences. This means a person may be exposed to the risks of insulin unnecessarily. There are people with diabetes (who require insulin) whose circumstances mean they are not monitored for changes in a disability/impairment, including via long-term condition reviews in general practice. People may not engage with healthcare services to enable the regular monitoring of their condition. Engagement is affected by the ability of services to meet patient needs but may also represent other situations that require a response, such as in relation to patient safeguarding. Electronic systems in general practice may not alert users when people have not requested repeat prescriptions of insulin, removing a potential opportunity to identify patients who need support. Diabetes technology, such as insulin pen devices, are not always designed in a way that supports people to administer insulin when they have a disability/impairment, such as visual impairment or problems with dexterity. There are concerns about the future competence of the healthcare workforce to support the increasing numbers of people with hybrid closed loop systems. Healthcare workers may not identify when a patient’s mental capacity to make decisions in relation to their insulin may be compromised, meaning a more in-depth assessment in line with the Mental Capacity Act (2005) may not occur. Limited education and practical support for application of the Mental Capacity Act (2005) by healthcare staff means its principles are sometimes misunderstood. Patients with diabetes (who require insulin) and who experience fluctuations in their mental capacity, are at risk of harm when services do not proactively plan for a time when the patient may lose the ability to manage their insulin safely. HSSIB makes the following safety recommendations HSSIB recommends that NHS England/Department of Health and Social Care provides guidance to integrated care boards and community providers setting out expectations for service models that empower and support people to manage and administer insulin in community settings. This is to support recognition of models that have safely, effectively and equitably engaged patients, their families and carers, including through the use of modern diabetes technology for self-management. HSSIB recommends that NHS England/Department of Health and Social Care develops a tool for use in community settings to support the assessment of competency of patients, their families and carers to manage and administer insulin and care for people with diabetes. This should include recognition of a person’s circumstances, the impact of disabilities and impairments, and potential adjustments to support administration where safe to do so. This is to support consistency in how competency is assessed for the safe management of insulin within the context of modern diabetes care. HSSIB makes the following safety observation National bodies can improve patient safety by providing clarity on expectations around 1) how staff recognise that a patient’s mental capacity may be compromised in relation to decisions about their self-management of insulin, and 2) the undertaking of a mental capacity assessment by the most appropriate person. This should include clarification on the practical application of the Mental Capacity Act (2005) to situations where a patient’s capacity may fluctuate and where sharing confidential information to support patient safety may be appropriate. HSSIB suggests safety learning for integrated care boards HSSIB investigations include safety learning for integrated care boards where this may help organisations think about how to respond to a patient safety issue that relates to integrated care across a geographical footprint. Informed by the findings in this report, the investigation proposes the following safety learning. HSSIB suggests that integrated care boards develop data-driven approaches to effectively identify the diversity of their populations’ characteristics and social circumstances, and use this data to support community providers to design services that empower and enable people to be involved in a patient’s care, including through supporting self-management of medications and conditions. HSSIB suggests that integrated care boards, through future planning for neighbourhood health services, include consideration of how patients who may be at greater risk of harm from insulin administration due to their specific circumstances – for example co-existing disabilities, social isolation or receiving home-delivered medications – are proactively monitored to identify changes in their circumstances. This may include using technology such as remote monitoring. Local-level learning HSSIB investigations include local-level learning where this may help providers/organisations respond to a patient safety issue at the local level. Informed by the findings in this report, the investigation shares the following local-level learning. How does your organisation create the conditions for staff to empower and enable patients, their families and carers – through a person-centred approach – to self-manage insulin where appropriate? How does your organisation proactively identify the varying needs of people with diabetes in its local population, and ensure these are met to enable their management of insulin? How does your organisation promote patient-centred care and facilitate self-care models that empower and enable patients, such as those with diabetes? Does your organisation allocate specific resources to support patients, families and carers to develop competency to self-manage insulin, and ensure those resources are protected to empower and enable people? How does your organisation ensure that staff supporting the development of a person’s competency have the required knowledge and skills to provide that training and education in relation to diabetes and insulin? How does your organisation support staff to identify and code a person’s disabilities/impairments that may influence their competency to self-manage insulin, and ensure these are considered and adjusted for when deciding whether a person is competent? Does your organisation have systems and processes to identify where patients have not requested their repeat medication prescription, or the frequency of the requests have changed, which may indicate changes in their circumstances? How does your organisation ensure long-term condition reviews reliably take place for patients who may be at a higher risk of deterioration due to their circumstances, for example those with multiple long-term conditions? How does your organisation identify and code patients – who may be more vulnerable to harm from insulin due to their circumstances – for increased monitoring? This may include patients who have their medications delivered to their home, who do not have family nearby, or who are housebound. Does your organisation provide practical training and guidance to support staff to consider the mental capacity of patients to make decisions around their insulin when there are concerns capacity may be compromised? Does your organisation provide practical guidance to staff to help identify when it is lawful, ethical and appropriate to share confidential information about a patient to mitigate risks to their safety, including with family members? Does your organisation have accessible routes via which staff can seek urgent support when they are concerned a patient’s mental capacity to make decisions about their self-care may be compromised, particularly in high-risk situations? How does your organisation support staff to develop ‘crisis plans’ for patients who self-manage insulin to protect their safety at a later point when their capacity to make decisions in relation to their care may change?

Prioritising patient safety is a blog series from the Parliamentary and Health Service Ombudsman (PHSO). Each month, PHSO publish between 70 to 100 of their casework decisions as a way to share learning that will help organisations improve their service and prevent mistakes happening again. This blog shares two cases involving patients with disabilities and the improvements one Trust has made, highlights key themes emerging from PHSO casework and provide updates on patient safety work from NHS Resolution, the Freedom to Speak Up Guardian and the Health Services Safety Investigations Body (HSSIB). 

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.

This report presents the findings of Healthcare Inspectorate Wales (HIW) from inspections of mental health and learning disability services across Wales between April 2024 and March 2025. During this period, HIW undertook 25 onsite inspections across NHS and independent hospitals, as well as community mental health teams (CMHTs), to assess the quality, safety, and effectiveness of care provided. Of the 25 inspections conducted, 14 were of NHS hospitals and 11 were of independent providers. This total includes two separate inspections of the same independent provider.

This briefing paper summarises the main points of the national guidance on Learning from Deaths, published in March 2017, and how it relates to the LeDeR programme. The national guidance provides a framework for NHS Trusts and NHS Foundation Trusts to identify, report, investigate and learn from deaths that occur in their care.

This is a 2013 progress report that follows up on the Parliamentary and Health Service Ombudsman and Local Government Ombudsman’s 2009 ‘Six Lives’ report which investigated the deaths of six people with learning disabilities, first highlighted by Mencap in their 2007 report ‘Death by Indifference’. The report covers: what has happened since the publication of the report in October 2010 in the areas the Department of Health said it would give immediate priority to. These areas include early learning from the Learning Disabilities Public Health Observatory, monitoring progress in the Confidential Inquiry into the premature deaths of people with learning disabilities, supporting improvements in the take-up of annual health checks for people with learning disabilities and promoting good practice. what the regulators – CQC, Monitor and the Equality and Human Rights Commission – have reported at the Ombudsmen’s request on what has happened in this area since 2010. progress and key developments in other areas since the 2010 report, which we believe will be very important in continuing to improve the healthcare of people with learning disabilities. These include new responsibilities for improving the healthcare of people with learning disabilities following changes to the health system since 2010. The report then looks at three other developments that will help to improve the health and wellbeing of people with a learning disability: work on identifying the determinants of good healthcare, addressed in the Health Equalities Framework for People with Learning Disabilities 2013. the development of Personal Health Budgets, including the commitment that everyone receiving Continuing Health Care will be offered a Personal Health Budget by 2014 developments on safeguarding in the Care Bill, crucial for this vulnerable group. The report includes an easy read summary.

An NHS Trust in Yorkshire is leading the way on work to narrow inequalities in waiting lists, including clearing the backlog of people with a learning disability waiting for elective care. Evidence shows that people with a learning disability have poorer health and experience greater and persistent healthcare inequalities including premature mortality. The 2021 review, Learning from lives and deaths – people with a learning disability and autistic people (LeDeR), reported disparities in avoidable medical causes of deaths between those with a learning disability and the general population. LeDeR reports have also highlighted that a third of deaths of people with a learning disability were from treatable medical causes. To help address this gap, senior leadership at CHFT made a commitment to improving the lives of people with a learning disability and have embedded a range of initiatives to ensure equitable access, experience and outcomes for this under-served group. Dedicated sessions on all aspects of living with a learning disability were delivered to the board and an enhanced task and finish group was established to take forward learning disability priorities within the Trust with support from those with lived experience. Adopting a data driven approach, the trust developed and implemented a range of tools to identify those with a learning disability, understand their experiences and monitor the difference being made. This included a flagging system within patient records, a learning disabilities data dashboard and a data model offering comparisons against the general population. A deep dive into patient journeys, from point of referral to treatment, was also undertaken as were audits on the reasonable adjustments made by the trust, cancer data and missed appointments. The trust also looked at information on readmissions, length of stay and mortality for people with a learning disability. This enabled them to identify areas for targeted action which included prioritising people with a learning disability who were waiting for surgery. Part of this involved partnership work with a private special needs dental service to restart theatre sessions and increase capacity to reduce the backlog on waiting lists.

In this report, Carer's UK examine the benefits of moving to paid Carer’s Leave, including the positive impact it would have for women and lower paid workers. They also outline the anticipated costs and savings this would result in for HM Treasury.

The Independent Inquiry into Access to Healthcare for People with Learning Disabilities reported in July 2008. Based on a public consultation, a review of research and evidence and the views of witnesses and stakeholders, the Michael Inquiry concluded that there are risks inherent in the care system for people with learning disabilities and that they are largely due to a failure to make ‘reasonable adjustments’ to services, as required under the Disability Discrimination Act. The Inquiry found evidence of a significant level of avoidable suffering due to untreated ill‐health, and a high likelihood that avoidable deaths are occurring. Although the report highlights examples of good practice there are some appalling examples of discrimination, abuse and neglect. This article makes ten essential recommendations for urgent change across the whole health system and the Inquiry team report contains practical illustrations of how to implement them.

Rebecca Bauers, Interim Director for People with a Learning Disability and Autistic People, and Chris Dzikiti, Director for Mental Health, talk about CQC’s new cross-sector policy position statement on restrictive practice, what it means for providers, and what people receiving healthcare services have the right to expect. As well as sharing the new policy, they discuss what forms restrictive practices can take, and explain how the use of blanket restrictions diminishes the therapeutic power of person-centred, trauma-informed care.

In her first blog as Interim Director of People with a Learning Disability and Autistic People, Rebecca Bauers talks about the importance of listening to the voices of people with lived experience; about how we have been gathering insight to shape our priorities, and how we intend to use our new powers to assess integrated care systems and local authorities.

This policy sets out a framework describing how the Trust and its staff will respond to and learn from deaths that occur under their care.It will provide guidance for all staff involved in the mortality review process ensuring clarity on roles, responsibilities and expectations. Reviewing mortality can help make improvements to the quality of care received by patients at the Trust by identifying care related issues. This enables the identification of learning themes and provides evidence of a high standard of care. Mortality is a fundamental component of clinical effectiveness, one of the three dimensions of quality described by Lord Darzi in High Quality Care for all (2008). The Trusts aims are to: Have continuous improvement of our Hospital Standardised Mortality Ratios (HSMR) and the Trusts Standardised Hospital-Level Mortality Index (SHMI) Achieve a year-on-year reduction in avoidable mortality  Improve learning from mortality reviews Ensure robust and timely governance processes regarding mortality outcomes and reviews Provide assurance of mortality processes in the Trust.

Rizwana Dudhia shares in the Pharmaceutical Journal how a project she initiated to prevent the prescribing of inappropriate medication improved the quality of life for patients with learning disabilities and autism.