Search the hub

Why does joining up health and social care still feel so difficult in practice? And what does that mean for people navigating both systems?  This long read from the King's Fund sheds light on the ‘no man’s land’ many experience at the interface between health and social care, revealing the deeper structural issues behind delays, fragmented support and growing pressure on patients and carers.

Virtual wards, also known as hospital at home, are increasingly being used across the NHS to support people who would otherwise need hospital care to receive treatment and monitoring at home. A new NIHR-funded study led by University of Manchester researchers explored how safe care is delivered in virtual wards, highlighting the often unseen work carried out by patients and carers as they undertake key elements of risk-work previously held by clinicians. The findings show that virtual wards can provide a safe alternative to hospital care for some patients, allowing people to recover at home while still receiving clinical oversight. However, patients and carers often take on more practical and emotional responsibility than may be recognised as they assume duties that would normally be carried out by clinicians in hospital settings. This includes monitoring symptoms, managing equipment and responding to signs of deterioration, especially overnight or outside normal working hours. The researchers suggest that hospital at home services that combine technology with in‑person home visits could help make care safer, more flexible, and accessible for a wider range of patients. Recognising and supporting the work undertaken by patients and carers is essential to ensure virtual wards are safely delivered. As virtual wards expand as a key component of NHS policy to shift acute care from hospital to community settings, practice must ensure there is space for relational and training support for clinicians, patients, and carers so that remote acute care can be safely implemented across health systems.

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?

The Public Services Ombudsman for Wales has powers under the Public Services Ombudsman (Wales) Act 2019 to undertake ‘Own Initiative’ investigations, where evidence suggests that there may be systemic service failure or maladministration. Four local authorities were included in the investigation: Caerphilly County Borough Council, Ceredigion County Council, Flintshire County Council and Neath Port Talbot Council. The investigation considered: Whether the local authorities being investigated were meeting their statutory duties under the Social Services and Well-being (Wales) Act 2014 and its Code of Practice and The Care and Support (Assessment) (Wales) Regulations 2015. Whether those entitled to a carer’s needs assessment were being made aware and understand their right to request a carer’s needs assessment. Where carers’ needs assessments are commissioned, whether those assessment services are being delivered appropriately and whether local authorities appropriately monitor the contracting arrangements. Whether carers’ needs assessments, including those completed by commissioned service providers, are undertaken in accordance with the Social Services and Well being (Wales) Act 2014. The investigation considered evidence provided by each of the Investigated Authorities, in the form of documentary evidence and evidence from staff, evidence from commissioned service providers and their staff, evidence from those with lived experience of having their needs as carers assessed and evidence from other organisations. Advice was also sought from one of the Ombudsman’s professional advisers The investigation found: Between 10% and 12% of the population (over 5 years old) in the Investigated Authorities identified as a carer in the 2021 Census. Only 2.8% of the carer population in the Investigated Authorities had their needs assessed. Only 1.5% of the carer population in the Investigated Authorities had an assessment that led to a support plan. Many carers are not aware of their rights and are unaware of the support that may be available to them. There was evidence of carers not being fully informed of their rights by the Investigated Authorities. In some instances, carers were signposted to commissioned service providers without being informed of their rights. Carers’ needs assessments are referred to by different names, which caused confusion amongst carers and carers were sometimes unaware that their needs had been assessed. There needs to be consistency in the language used. There is lack of clear information about the process of assessment, the role of commissioned service providers (where applicable), what carers may expect from the assessment and how carers may be supported following an assessment. This would enable carers to make an informed decision about whether to have their needs assessed. Where they are undertaken, carers’ needs assessments at the Investigated Authorities are generally being completed appropriately, with the exception of young carers’ needs assessments in Ceredigion and Neath Port Talbot. Some improvements could be made to the recording of carers’ needs assessments, including the involvement of the cared for person (where feasible), the extent the carer is able and willing to provide care and the carer’s wishes in terms of work, education, training and leisure. There is a need to implement quality assurance audit processes for completed carers’ needs assessments in Caerphilly, Ceredigion and Neath Port Talbot council areas. There are discrepancies between the Investigated Authorities in the way that support provided to carers is recorded. Improved, consistent and comparable data collection could enable better analysis to drive improvement, monitor progress and identify areas in which further improvements are necessary. Carers must be offered advocacy – the decision on whether an advocate is needed is not one for the staff completing assessments to make, nor is it appropriate for the staff member to consider themself to be the advocate. The appropriateness of Direct Payments for carers is variable and 3 of the Investigated Authorities need to ensure that Direct Payments are something the carer is able to manage, with this being reviewed if circumstances change. The SSWB Act places a duty on both local authorities and health services in respect of carers. Collaboration and joint working between health services and local authorities in relation to carers and their rights is essential and should be strengthened. The recording of equality data relating to carers is limited and inconsistent at the Investigated Authorities.

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.

This guide is intended for people caring for people living with Alzheimer’s Disease and other forms of dementia, to help facilitate conversations that can help to make health care decisions as the need arises. It has been produced as part of the Conversation Project, a public engagement initiative of the Institute for Healthcare Improvement (IHI). The Project’s goal is to help everyone talk about their wishes for care through the end of life, so those wishes can be understood and respected.

The Safe Care at Home Review is an important reminder that people with care and support needs may experience abuse and neglect, sometimes under the guise of ‘care’. Older people, or people with disabilities, may be particularly vulnerable to harm because of their dependence on others and the complexity of their care needs. They might rely on other people for physical, mental or financial support, and may face difficulties recognising or reporting harm. The review draws on a range of evidence, including the Home Office funded Vulnerability Knowledge and Practice Programme, which has highlighted that one in six domestic homicides involved people who were cared for by, or caring for, the suspect.

An estimated 90,000 people are living with dementia in Scotland, with that number expected to increase to 164,000 by 2036. These national clinical guidelines from Health Improvement Scotland, the first to be published in nearly 20 years, provide recommendations on the assessment, treatment and support of adults living with dementia. It calls for greater awareness of pre-death grief for people with dementia, their carers and their loved ones, as they fear the loss of the person they know. To accompany the guidelines, a podcast has been produced by Health Improvement Scotland speaking to professionals, including Dr Adam Daly, Chair of Healthcare Improvement Scotland’s Guideline Development Group and a Consultant in old age psychiatry, and Jacqueline Thompson, a nurse consultant and the lead on pre-grief death for the guideline. We also hear from Marion Ritchie, a carer who experienced pre-death grief while caring for her husband.

The BMJ’s new “practical prescribing” series aims to improve decision making Prescribing is one of the most fundamental parts of medicine and one of the most common interventions in health care. In the UK, the British National Formulary lists more than 1600 drugs. The number of prescriptions dispensed in the community in England grew by 66% from 686 million prescriptions in 2004 to 1.14 billion prescriptions in 2021-22.34 Polypharmacy has also increased, with around 15% of people in England taking five or more medicines a day and 7% taking eight or more medicines a day. The BMJ in conjunction with the Drug and Therapeutics Bulletin has commissioned a series of articles on practical prescribing. These articles will highlight important issues for prescribers to consider and prompts for shared decision making between prescribers, patients, and their carers. The series—targeted at all medical and non-medical prescribers, particularly doctors in training—will cover medicines commonly prescribed in primary and secondary care. The format is designed to help readers recall their understanding of a medication through a series of questions, exploring up-to-date evidence, and reviewing accessible information not readily found in prescribing texts.

The Care Quality Commission (CQC) State of Care is an annual assessment of health care and social care in England. The report looks at the trends, shares examples of good and outstanding care, and highlights where care needs to improve. Access to care Getting access to services remains a fundamental problem, particularly for people with protected equality characteristics. Along the health and care journey, people are struggling to get the care they need when they need it. Record numbers of people are waiting for planned care and treatment, with over 7 million people on elective care waiting lists in June 2023. But the true number of people could be much higher, as some people who need treatment are struggling to get a referral from their GP. In the community, people are facing ongoing struggles with getting GP and dental appointments. As a result, some people are using urgent and emergency care services as the first point of contact, or not seeking help until their condition has worsened. Once at hospital, people are facing longer delays in getting the care they need. In 2022, over half (51%) of respondents to our urgent and emergency care survey said they waited more than an hour before being examined by a nurse or doctor, up from 28% in 2020. Insufficient capacity in adult social care is continuing to contribute to delays in discharging people from hospital. Ongoing staffing and financial pressures in residential and community services are having an impact on the quality of people’s care, with some at greater risk of not receiving the care they need. Quality of care Increasing demand and pressures on staff are taking a toll on their mental health and wellbeing. Staff have said, without the appropriate support, this is affecting the quality of care they deliver. Many people are still not receiving the safe, good quality maternity care that they deserve, with issues around leadership, staffing and communication. Ingrained inequality and the impact on people from ethnic minority groups remains a key concern. The quality of mental health services is an ongoing area of concern, with recruitment and retention of staff still one of the biggest challenges for this sector. Innovation and improvement varies, but the use of artificial intelligence (AI) in health care has the potential to bring huge improvements for people. Given the speed of growth of AI, it is important to ensure that new innovations do not entrench existing inequalities. Inequalities Midwives from ethnic minority groups say that care for people using maternity services is affected by racial stereotypes and a lack of cultural awareness among staff. They described a ‘normalised’ culture where staff tolerate discrimination from colleagues, and say they are less likely to be represented in leadership and managerial roles. People from ethnic minority groups who have a long-term condition felt they were talked down to about their treatment and were not treated as individuals. They also said a lack of cultural competency was a barrier to receiving good quality care. These people were also more than 2.5 times more likely to say that staff in the emergency department talked as if they were not there, compared with people in White ethnic groups who did not have a long-term condition. Failures in the system and a lack of funding can mean that budgets are prioritised above truly person-centred approaches to support in supported living services. The health and care workforce Staff regularly fed back that they are overworked, exhausted and stressed – sometimes to the point of becoming ill, injured or leaving their job altogether. They say this can affect their ability to provide safe and effective care to people. Just over a quarter (26%) of NHS staff were satisfied with their level of pay. This is 12 percentage points lower than before the pandemic. Dissatisfaction with pay is linked to industrial action by healthcare staff during 2023. In adult social care, some providers are struggling to pay their staff a wage in line with inflation. Over half of the respondents of adult social care providers in England said they were having challenges recruiting new staff, and 31% said they were having challenges in retaining them. Despite this, there has been a steady decrease in staff vacancy rates for care homes, from 11% in January to March 2022 to 7% in April to June 2023. In 2022/23, approximately 70,000 people arriving to work in the UK from overseas started direct care roles in the independent adult social care sector, compared with around 20,000 in 2021/22. Providers of adult social care services have told us that recruiting staff from overseas has enhanced the diversity and skills of their team and helped resolve staffing issues. But there is a growing trend of unethical international recruitment practices. In 2022/23, we made 37 referrals for concerns regarding modern slavery, labour exploitation and international visas – more than 4 times the number made in 2021/22. Deprivation of Liberty Safeguards There are ongoing problems with the current Deprivation of Liberty Safeguards (DoLS) system that have left many people who are in vulnerable circumstances without legal protection for extended periods. Systems The way health and social care works in England has changed significantly over the past year, with new integrated care systems now formalised. Local systems should now implement plans to address unwarranted variations in population health and disparities in people’s access, outcomes, and experience of health and social care. Local authorities are tackling workforce problems in adult social care and trying to address gaps in care as they plan for the future. But they will need to demonstrate an understanding and preparedness for the changing and complex needs of local populations. Assessing carers’ needs is vital. Carers, including many unpaid carers, are a critical part of all local care systems and they are not always getting the support they need – there is variation across the country and many carers are facing financial problems.

Allergic reactions vary in severity. People with food allergy tend to have reactions which affect the skin or gut, but around one third of reactions involve the breathing: these more serious allergic reactions are known as anaphylaxis. Very rarely, anaphylaxis can be severe and therefore life-threatening. This leaflet created by Allergy UK and Anaphylaxis UK explains how you can reduce the risk of this happening. Anaphylaxis is unpredictable and can occur in people who have never had this type of reaction before, but most people will recover fully. 

Unpaid carers provide significant levels of support to family or friends–equivalent to four million paid care workers. Carers often need support with their own health and wellbeing, but they are not always able to access this. Researchers from The King's Fund interviewed commissioners and providers of support to unpaid carers, ran focus groups with unpaid carers in four areas of England, spoke to national stakeholders and reviewed existing literature and national data sets, in order to understand the current picture of local support available for unpaid carers in England. Key findings To better support unpaid carers locally, commissioners and services need to develop and maintain a good understanding of their populations. This can be facilitated by supporting local professionals to identify and point carers to available services, meaningfully measuring the impact of support and engaging with local carers. Local support offers should be built on this understanding. Commissioners and providers of services for unpaid carers need to actively develop awareness of their local support offers among unpaid carers, at the same time ensuring support is appropriate and accessible, as well as inclusive of diverse populations. Carers are a hugely diverse group, both in terms of who they are and who they care for, but policy and services don’t always reflect this diversity. Awareness of carers needs to be embedded in strategic level and commissioning decisions. Professionals who ‘get it’ and advocate consistently are vital. But the work can’t just rely on a few committed individuals—system-level carers’ partnerships and strategies have a key role in advocating and embedding the carers agenda. The impact of wider health and care issues on carers cannot be ignored. The impacts of ongoing funding issues and the health and social care workforce crises on carers and local support services were highlighted multiple times in our research. Workforce shortages in particular are directly impacting on carers health and wellbeing because they are the ones left to fill in the gaps.

This article looks at the experience of Tammy Dobbs, who has cerebral palsy and requires extensive support from home carers to carry out daily tasks. In 2016, Tammy's care needs were reassessed by the state of Arkansas where she lives, and the hours of support she was eligible to receive were cut in half. The change in eligibility was due to a new state-approved algorithm that had calculated her support needs in a new way, in spite of the fact that there was no change to her level of need.  The situation caused Tammy much distress and resulted in drastic life changes. The article highlights the issues associated with the use of algorithms to determine need and allocate resources in health and social care. It also raises questions about what transparency means in an automated age and highlights concerns about people’s ability to contest decisions made by machines.

Unpaid carers play a substantial and vital role in meeting social care needs. The care they provide has enormous value, both for the people they care for and for wider society. Many carers experience great satisfaction from their role, and through the help and support they provide to friends and family members they may also reduce the costs of formal social care provision. At the same time, caring responsibilities can come at a high personal and financial cost, despite the 2014 Care Act giving carers the right to receive support. 1 in 5 carers report feeling socially isolated and 4 in 10 report financial difficulties because of their caring role. This report by The Health Foundation aims to explore national data on the number of unpaid carers and trends over time, as well as which groups are more likely to have caring responsibilities and who they provide care for. It gives an overview of the types of support available to carers, and what we know–and don’t know–about how many carers are accessing support.

Hospital at Home is a short-term, targeted intervention that provides a level of acute hospital care in an individual’s own home, or homely setting that is equivalent to that provided within a hospital. In mid-2020, the ihub within Healthcare Improvement Scotland began working with a number of NHS boards and health and social care partnerships to support the implementation of Hospital at Home services across Scotland. This toolkit was created as part of that work, providing a range of tools and resources to support areas to implement and expand Hospital at Home services.