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The King's Fund is pleased to invite you to their moving care closer to home event in October. For years there has been an ambition to move care closer to home – now it’s time to make it a reality. This timely event, now in its second year, moves beyond local implementation to ask a critical question: what will it take to scale community-based care across the entire health and care system? It will bring together policy leaders, operational managers, innovators and practitioners to tackle the entrenched challenges, such as workforce, funding and infrastructure, and to spotlight the real-world innovations already changing care delivery. This in-person event is a perfect opportunity for you to connect with key stakeholders from across the system and clarify the role you can play in making care closer to home a reality. Register

On the 10 April 2025, the Health Services Safety Investigations Body (HSSIB) published a report looking at how care is co-ordinated for people with long-term conditions. In particular, the investigation considered the role of ‘care co-ordinator’ to understand how care is co-ordinated within the existing workforce. In this blog, Patient Safety Learning sets out its reflections on the findings and recommendations in this report. HSSIB investigates patient safety concerns across the NHS in England and in independent healthcare settings where safety learning could also help to improve NHS care. Their latest report looks at primary and community care co-ordination for people with long-term conditions, specifically considering the role of ‘care coordinator’ in this context.[1] While language around the care coordination is varied, the role of care co-ordinated is defined by NHS England as follows: “Care co-ordinators help to co-ordinate and navigate care across the health and care system, helping people make the right connections, with the right teams at the right time. They can support people to become more active in their own health and care and are skilled in assessing people’s changing needs. Care co-ordinators are effective in bringing together multidisciplinary teams to support people’s complex health and care needs.”[2] In this blog we set out our reflections on the findings and recommendations in this HSSIB investigation. Challenges navigating the healthcare system Navigating the healthcare system in the UK can be complex and frustrating for patients, families and carers. At Patient Safety Learning we hear time and time again about the lack of joined up care and communication within and across organisations. Failing to share the right information at the right time can create significant patient safety risks. Poor communications, both with patients and between healthcare professionals, can result in misunderstandings and mistakes resulting in poor outcomes and potentially patient harm. In a recent series of blogs published on the hub, patients and their relatives shared with us the challenges and barriers they have faced when trying to navigate the healthcare system.[3] The concerns and issues raised in this HSSIB investigation echo many of the key themes we identified in our new blog series. Confusing communications HSSIB’s report refers to the case of a child prescribed anti-epileptic medication by a specialist hospital to reduce the number and severity of their seizures. It then details the difficulties the parents subsequently found in getting this medication through their GP or consultant. The parents highlighted concerns about the lack of communication between the separate services, with the report noting: “The parents told the investigation that they were ‘exhausted’ because of the effort they had had to put in over the years to connect services together, having to tell the same story over and over again, while having to provide care for their child.” Delays to treatment The investigation report also highlights the case of a middle-aged professional working man who suffered a stroke. He received hospital care to treat and manage his healthcare needs; however, once discharged he encountered significant difficulties when seeking appropriate support for his additional healthcare needs. HSSIB highlighted how he had told them it required significant effort from him directly to ensure the right level of care was maintained for his needs. Recounting his experience, the report states: “He said that these multiple agencies ‘all operate in their own silos’ and not as a team, and that ‘there was nobody to create that team [a cross-system team aware of all his health and care concerns]’. The way that he and his wife cope with this situation is that they ‘manage the team’ to connect the individual parts of the system and get the care he needs.” Impact on mental health HSSIB also spoke to a man in his late seventies who is the main carer for his wife. She has multiple long-term conditions that require primary, secondary and community care. Reflecting on the impact that coordinating her care had on their lives, the report noted: “The husband explained that his role of care co-ordinator had placed a considerable burden on him, which led him to ‘feel overwhelmed’. He said that because he needing to act as her ‘co-ordinator’ he was unable to spend time with his wife as her husband. He also described having to administer medication and dress his wife’s wound which caused her considerable pain.” HSSIB’s investigation also highlights broader areas of concern relating to the coordination of care in the healthcare system, again mirroring themes raised we heard from patients in our recent blog series. Difficulties sharing information The investigation highlights a recurring concern around problems sharing patient information and the negative impact of this on coordinating a patient’s care. It highlights both issues of digital systems in different organisations not being compatible with one another and other barriers, stating: “Healthcare professionals described the challenges in information sharing. Digital patient records could not be viewed across primary, community, secondary and tertiary care because information technology systems are unable to ‘talk to each other’. They also said that sometimes they were unsure whether patient information could be shared as it was ‘protected information’. This was a particular problem when trying to share information between health and social care.” A complex and confusing system The report also reflects more broadly on how accessing and navigating health and care services can be difficult and complex, and potentially overwhelming for patients. This was highlighted by examples such as this from the investigation: “A GP practice told the investigation that it had tried to put together an easy-to-read document explaining the care pathway for patients with dementia, including contact numbers and ways to access services. The GP practice went on to say that the system was so complex that it was unable to bring together all the information. It stated: ‘We are healthcare professionals and we can’t do this, so how can patients cope?’” Safety recommendations A theme that runs throughout HSSIB’s investigation is that there is a clear need and support for the role of care co-ordination. It highlights that while patients and carers can, and often do, themselves act in this role, when they are unwell or unable to do so a patient’s care can be significantly impacted. The report states that the availability of care co-ordination varies widely across the system. This is a particular issue for those living with multiple long-term conditions as there is no single centralised care co-ordination function to span across primary, secondary and tertiary care. Concluding its investigation, HSSIB recommends that: NHS England/Department of Health and Social Care, working with other relevant organisations, reviews and evaluates the implementation of the care co-ordinator role. This is to ensure that all patients with long-term conditions have their care co-ordinated and that they have a single point of contact 24 hours a day, 7 days a week, to help them with any queries or concerns that they may have. The Department of Health and Social Care works with NHS England and other stakeholders to develop a strategy that ensures that all diseases are given parity and that all people with a long-term condition in primary, secondary, tertiary and community or social care have their care effectively co-ordinated across multiple agencies. This is to ensure that people with long-term health conditions have co-ordinated care plans with effective communication between services and a single point of contact for concerns or questions. Patient Safety Learning agrees that there needs to be greater time and investment into care coordination. On the first recommendation, we would note that seeking to ensure all patients with long-term conditions have a single point of contact 24 hours of day, 7 days a week, would be a significant shift from the status quo. This would require a clear commitment of both financial and workforce resources from NHS England and the Department of Health and Social Care to deliver. In considering how this might be approached, it would also be important to consider: How this can be flexible depending on the long-term condition in question. Different conditions will require different levels and types of coordination. Systemic barriers that result in many of the difficulties navigating the care system would not be addressed by implementing this recommendation. For example: – We would continue to have various digital systems in primary, secondary and tertiary care that lack interoperability (the ability of computer systems or software to exchange and make use of information). – Non-digital communication barriers that prevent cross-organisational sharing of information in the NHS, ranging from data sharing restrictions to cultural attitudes within organisations, would also remain. On the second recommendation we agree with the principle of this, that there needs to be parity for people with a long-term condition and an expectation that their care is effectively co-ordinated across multiple agencies. Poorly coordinated care is not only confusing and frustrating for patients but also creates safety risks that can result in serious avoidable harm. Concluding comments The challenges of navigating the healthcare system discussed in this report are not a new issue, but a long-standing set of problems that do not have a simple solution. Their impact on patient experiences and outcomes is exacerbated in the current environment, when our healthcare system that is under increasing pressure and in a “critical condition”.[4] Patient Safety Learning believes that care co-ordination should form an important area of focus for the UK Government’s forthcoming 10 Year Health Plan. If it is to achieve its strategic ‘shift’ of moving the future of the NHS from "hospital to community" this will require a healthcare system where patients aren’t simply left to "join the dots for patient safety".[5] This will require organisational and leadership commitment to take forward the issues raised in this HSSIB investigation. The needs of patients should be central to improving health and care services, actively listening and acting on their experiences and insights when things go wrong for safety improvement. References HSSIB. Workforce and patient safety: primary and community care co-ordination for people with long-term conditions, 10 April 2025. NHS England. Care co-ordinators, Last accessed 10 April 2025. Patient Safety Learning. The challenges of navigating the healthcare system, 24 February 2025. UK Parliament. NHS: Independent Investigation, Hansard, Volume 753, 12 September 2024. Department of Health and Social Care, Independent report: Review into the operational effectiveness of the Care Quality Commission, 15 October 2024. Related reading Digital-only prescription requests: An elderly woman sent round the houses How the Patients Association helpline can help you navigate your care Lost in the system? NHS referrals Navigating the healthcare system as a university student: My personal experience The challenges of navigating the healthcare system: David's story The challenges of navigating the healthcare system: Sue's story Share your story What has been your experience of navigating the healthcare system? What is and isn’t working? How does it feel as a patient or carer when you hit barriers? Has your health been affected? Share your story in our community forum or contact our editorial team at [email protected].

Following Lord Darzi’s investigation in 2024 and a ‘national conversation’ on how to fix our ‘broken’ NHS, a new 10 Year Health Plan charged with setting out government plans to deliver its three shifts – from hospital to community, analogue to digital and sickness to prevention – will publish in the spring. The spending review, which will set out government spending plans for the next three years, and the publication of a revised long-term workforce plan, are also expected over the coming months. About the event This King's Fund conference will explore how implementation of the three shifts can deliver improved care, outcomes and experience for the public, while ensuring our health and care system is compassionate, equitable and sustainable. Our expert speakers will outline the actions and decisions needed to transform the health service into a prevention-focused service by 2035. Conference sessions will provide practical guidance on: how the 10 Year Health Plan can support the government’s overall health mission the impact of the comprehensive spending review and radical options for how funding is allocated and flows through the system how the plan can only be delivered successfully if there is similar attention and support for adult social care managing the trade-offs, including implementing the changes and shifts over the long term while prioritising resources on current pressures building on the approach in the development of the plan to work differently with people (patients, staff and communities) and ensure services are co-designed to meet needs and deliver care that is truly patient-centred how to achieve a managed shift in resources and power away from the acute sector towards primary, community and preventive services creating digitally enabled services that are inclusive and trusted by engaging with people and communities. Register

This conference focuses on recognising and responding to the deteriorating patient in primary and community care. The conference will include National Developments including the new Sepsis 2024 NICE guidance, the national rollout of Martha’s Rule, and focus on best practice in primary care. The conference will include practical case study based sessions on identifying patients at risk of deterioration, improving practice in patient observations, the role of human factors in responding to the deteriorating patient, improving escalation and understanding success factors in escalation, involving patients and families in recognising deterioration, using clinical judgement, and improving the communication and use of NEWS2 in primary care, the community including care homes, and at the interface of care. For further information and to book your place visit https://www.healthcareconferencesuk.co.uk/virtual-online-courses/deteriorating-patient-summit=primary-care or email [email protected] Follow on Twitter @HCUK_Clare #DeterioratingPatient hub members get a 20% discount. Email [email protected] for discount code.

In this blog, Hope Virgo, author and Secretariat for the All Party Parliamentary Group (APPG) on Eating Disorders, examines the crisis that continues in eating disorder services in the UK and the devastating impact this is having on patients and their families. She highlights how failures in services lead to avoidable deaths. Hope shares the key recommendations from a new report by the APPG and calls for adequate funding and attention to ensure people with eating disorders receive the help they need to recover. Eating disorders are among the most serious and life-threatening mental illnesses but have been overlooked and underfunded for far too long. Because of this, eating disorders have one of the largest treatment gaps in modern healthcare. In the past decade, we have seen an alarming rise in eating disorders, a trend that only worsened during the Covid-19 pandemic.[1] What was already a struggling support system for people affected by eating disorders has collapsed under this pressure. Too many people are waiting for support from treatment services that have been grossly underfunded and neglected for many years. In addition, public perception of eating disorders is still dominated by narrow stereotypes—but eating disorders don't discriminate and affect people of all ages, genders and ethnic backgrounds. Understanding the situation for people with eating disorders in the UK Over the last six months, the All-Party Parliamentary Group (APPG) on Eating Disorders has been meeting with people affected by eating disorders, clinicians, researchers and campaigners to gain an accurate picture of what is going on in the UK. The stories we have heard are harrowing and eye-opening to the epidemic of eating disorders that our healthcare system faces. We have heard stories of people: being denied treatment for not being thin enough. spending nights in A&E being hydrated, only to be discharged out into the community with no follow-up plan or treatment package. people being discharged from inpatient and outpatient treatment at low BMIs. In some cases, this has resulted in organ failure, suicide or repeat admissions to A&E where people have been crying out for support, only to be blamed for their condition. avoidable deaths. These stories have added to the evidence seen in the pre-pandemic survey of adult community eating disorder services, which highlighted significant shortcomings in community services’ capacity to manage risk. Only around 40% of services provided complete medical monitoring and/or had good links with acute hospitals.[2] Unfortunately, as the severity of a patient's illness increases, the likelihood of them seeking and accepting help decreases significantly. This means that the inability of 50% of services to provide follow ups or assertive outreach to patients who do not engage further increases the risk of deterioration these patients in the community. The statistics we have from the Office for National Statistics (ONS) show much lower mortality figures than we believe to be the case, which is likely due to inaccuracies in recording practices. For those with anorexia, deaths are often caused by physical complications such as malnutrition, gastrointestinal issues, metabolic disturbances, cardiovascular events or infections, and recorded as such. Type 1 diabetes with disordered eating (T1DE) significantly increases the risk of premature mortality. These risks can be reduced with improved services and targeted medical training. Several psychiatric conditions can occur alongside eating disorders, including substance misuse, personality disorders and self-harm. This further heightens the risk of a person dying, which is why we need integrated care to bridge gaps between eating disorder and other mental health services. International studies have shown that integrated, timely services can improve outcomes and prevent deaths.[3] Zara had an eating disorder and tragically died from suicide. Zara’s mum, Debs, believes her daughter would still be alive if she had received the support she needed and asked for. “My beautiful daughter, Zara—intelligent, sassy, kind, and compassionate—took her own life on 22 September 2021 after struggling with an eating disorder for nearly 10 years. Zara was diagnosed with Anorexia Nervosa in May 2013 and was admitted to an Eating Disorder Unit almost immediately. Instead of being good news for her recovery, this is when the nightmare began. From May 2013 to June 2021, Zara endured 13 inpatient admissions across seven different units, including three years as a continuous inpatient—nearly two of which she spent without ever leaving one of the units or going outside. With each admission, her eating disorder and mental health deteriorated further. During this time, she was restrained daily, often by a minimum of six people holding her down. She received very little therapy, and instead, there was a culture of patient blaming and shaming. In the last two years of her life, Zara was crying out for help, but no one would listen. The Eating Disorder Unit discharged her completely, handing her over to the community mental health team. I spent nearly every day taking ligatures off her, lifting her down from her wardrobe when I found her near unconscious, and performing CPR when I found her in the shower. There was little to no support from our community psychiatrist; we were left to cope alone. No matter how much we pleaded for help, it was a constant battle, and we never received the support Zara so desperately needed. My beautiful daughter should never have died from this illness. There was a whole world out there for her, and she had so much to give. But ultimately, Zara felt like everyone had given up on her. She was only 24 when she died, but she was exhausted, and didn’t know any other way to keep going without support." Zara's story is one of many similar stories that are unfolding for countless others across the country. Behind these tragedies are systemic failures, often overlooked and hidden behind a lack of national data, questionable legal decision-making and cost-saving agendas. New APPG report—The Right to health: people with eating disorders failed The APPG on eating disorders has released its first report into the state of eating disorder services in the UK. It makes five recommendations for the Government, including the call for a confidential inquiry into all eating disorder deaths. Development of a national strategy for eating disorders. This strategy will encompass adults and young people, with sufficient funding to reform all services. The goal is to provide timely, evidence-based treatment for every individual with an eating disorder. The national strategy will include: - mandatory eating disorder training for all healthcare workers (including GPs, dentists and nurses). - investment in a public health campaign to clarify messaging around obesity and eating disorders. - funding for the implementation and integration of evidence-based treatment practices, including collaboration between services. - mandatory health screening for high-risk groups. - training for carers. Additional funding for eating disorder services. This funding should address the demand for both adult and children's services. Confidential inquiry into all eating disorder deaths. Increased research funding for eating disorders. The aim is to enhance treatment outcomes and ultimately discover a cure for eating disorders. Non-executive director oversight for eating disorder services. This oversight and accountability should be implemented in all NHS Trusts and Health Boards in the UK. James Downs, a Researcher and Campaigner who shared his own lived experience as part of the APPG evidence sessions, told us that, “Patient safety must be at the heart of reform. Transparency and accountability about the failures in eating disorder services are long overdue, and every NHS Trust and Health Board must include non-executive directors focused on eating disorder services to provide ongoing scrutiny and progress.” With integrated, well-resourced, and evidence-based treatment, recovery is possible, even in the most severe cases and after many years of suffering. Despite this, coroners, families and communities continue to see too many lives needlessly lost. This should not be happening. Eating disorders are treatable illnesses. They are dangerous and life-threatening when untreated, undertreated or poorly treated. But this risk to life is preventable, and deaths from eating disorders are not inevitable. Suzanne Baker, Carer Representative at F.E.A.S.T., gave evidence for the APPG and said, “It is a national scandal that this basic treatment expectation is not being met, leading to preventable deaths. Recovery should be the goal for every patient—a goal that is entirely achievable with the right treatment.” A confidential inquiry is urgently needed to identify modifiable factors that contribute to preventable deaths. We need to see targeted interventions, service improvements and enhanced professional training to address gaps in care delivery. Our question for the Government and the NHS is this: Why in the face of crisis is so little being done to support those affected by eating disorders? Join the conversation Do you have an eating disorder or care for someone who does? We'd like to hear about your experience of accessing services and support. Are you a healthcare professional working in eating disorder services? Share your reflections about how care and treatment can be improved and made accessible to all. You can join the conversation by commenting below (you'll need to sign up to join the hub first) or get in touch with us directly by emailing [email protected] References 1 NHS Benchmarking Network. Accessed 12 January 2025 2 Viljoen D, King E, Harris S et al., 'The alarms should no longer be ignored: Survey of the demand, capacity and provision of adult community eating disorder services in England and Scotland before COVID-19'. BJPsych Bull. 2023; 48(4):1-9 3 Castellini G, Caini S, Cassioli E et al, 'Mortality and care of eating disorders'. Acta Psychiatr Scand. 2023; 147(2): 122-133 Related reading In conversation with Hope Virgo: “The withdrawal of treatment from people with eating disorders is a national crisis that’s being ignored.” Your illness worsens – so care is cut off. This is the scandal playing out in eating disorder treatment (Guardian, 25 February 2024) The right to health: People with eating disorders are being failed (22 January 2025)

The health and care system in England is undergoing significant change. With a new government setting its priorities, an ambitious 10-year health plan in development, and ongoing challenges such as workforce shortages and health inequalities, understanding these complexities is more important than ever. This is a two-day event led by The King’s Fund’s policy and leadership experts. Whether you’re navigating integrated care systems, grappling with social care reforms or seeking clarity on the pressures facing health and care, this event offers essential knowledge and balanced insights. Register