The most recent HSSIB learning report on patient safety across regional care pathways offers an important, if uncomfortable, insight into the realities of delivering care across organisational boundaries. While framed as learning, the findings expose fundamental gaps in oversight, clarity and system leadership, which pose significant risks to patient safety.

A care pathway is a structured, evidence-based framework that describes the sequence of care and interventions a patient should receive for a particular condition, population group or healthcare need. It sets out how different services and professionals work together to deliver coordinated, high-quality care across the patient's journey.

The HSSIB investigation examined a redesigned regional pathway involving multiple organisations and a centralised specialist service. However, the report deliberately omits specific details of the pathway, organisations and patient group involved.

While this is understandable from a confidentiality perspective, it creates a key limitation: without a clear understanding of the full patient journey, it becomes much harder to articulate where risks emerge, accumulate and, ultimately, result in harm.

The invisible patient journey

One of the most striking issues raised by the report is the system’s inability to fully understand or monitor patient harm across the pathway. This is perhaps unsurprising. Care pathways that span multiple organisations are non-linear, dynamic systems, where risks rarely arise at a single point. Instead, harm often reflects latent system failures, decisions, constraints or assumptions made early in the pathway that only manifest much later.

The investigation highlights several critical system weaknesses:

• Differences between how the pathway was designed and how it actually operated.
• A lack of shared understanding between organisations about what the pathway could realistically deliver.
• Limitations in the technology and digital systems used to support the pathway.
• Limited data sharing and inconsistent performance insight across providers.

These issues are particularly evident in the technology underpinning the pathway, where a lack of interoperability between organisational digital systems means critical patient information is not consistently shared or visible across services. In practice, this results in manual workarounds, duplication and reliance on incomplete data. The safety implications are significant: clinicians are often making decisions without a full understanding of a patient’s history, delays occur in accessing or transferring information and opportunities for proactive intervention are reduced.

Collectively, this creates a scenario where no single organisation holds a complete picture of the patient journey, meaning emerging harm cannot be reliably identified.

From a patient perspective, it is reasonable to expect far greater visibility of the pathway they are moving through—not just who is providing their care, but how that care is organised end-to-end. This includes clarity on what the pathway looks like, the key decision points that may affect their treatment, and how and when care may escalate if their condition changes.

They might also reasonably expect to know how risks to their safety are being identified, shared and actively managed across organisations. Without this transparency, patients are effectively navigating a system that is opaque, fragmented and difficult to understand.

In such circumstances, meaningful collaboration becomes extremely challenging. Shared decision making depends on a shared understanding of both the clinical situation and the system through which care is delivered. Similarly, where risks are not visible to patients, there can be no clear line of accountability for how those risks are mitigated.

If care pathways are to function safely across organisational boundaries, they must be understandable not only to professionals within the system but also to the patients who rely on them.

The accountability gap

A consistent theme throughout the HSSIB report is the absence of sustained oversight.

Although a cross-organisational implementation board initially existed, oversight from the Integrated Care Board (ICB) reduced before the pathway was fully embedded.

The consequences were predictable:

• No shared governance framework post-implementation.
• No agreed evaluation plan.
• Limited escalation of risks.
• Disconnected data and performance monitoring.

This reflects a classic system failure: accountability without ownership.

If no organisation or system leader maintains end-to-end ownership of a pathway, then:

• Risks fall between organisational boundaries.
• Mitigations are inconsistent or absent.
• Learning is localised rather than system wide.

As highlighted by another HSSIB report last year, there is a lack of clarity about how patient safety is managed between ICBs other healthcare providers, including lines of safety accountability. This leads directly to gaps in oversight of cross-organisational safety risks.

Implementation versus reality: the risk of 'work as imagined'

Another critical safety issue is the mismatch between the pathway as designed ('work as imagined') and its real-world operation ('work as done').

The report highlights:

• A business case that was not fully realised.
• Resource assumptions (e.g. bed capacity) that did not materialise.
• Divergent expectations among organisations about pathway capability. 

This is not a minor operational issue, it is a core patient safety risk.

When services are designed based on assumptions that are not delivered in practice:

• Demand exceeds capacity.
• Access thresholds shift informally.
• ·Staff are forced into workarounds.
• Clinical decision-making becomes inconsistent.

Over time, this creates unstandardised care and inequity of access, both of which were flagged as concerns in the investigation.

Culture, communication and friction

The report also surfaces issues that are often underplayed in pathway redesign, relationships and behaviours between teams.

Findings include:

• Differences in risk perception between organisations.
• Disagreements affecting clinical decisions.
• Examples of incivility.
• Barriers to shared learning.
• Lack of interoperability between organisation digital systems.

These are not 'soft issues', they are direct contributors to patient harm. Where communication breaks down:

• Information is lost or misinterpreted.
• Decisions are delayed.
• Trust erodes across organisational boundaries.

In cross-system pathways, psychological safety and collaboration are as critical as infrastructure and process design.

What could strengthen learning?

While the report provides valuable system-level insights, there is an opportunity to go further in translating findings into practical improvement. Two approaches could add depth:

1. After Action Review (AAR) at system level

A structured, multi-agency AAR could:

• Reconstruct the pathway end-to-end.
• Identify where assumptions diverged from reality.
• Surface latent conditions contributing to risk.
• Build shared understanding across organisations.

This would move learning from 'what happened' to 'why it made sense at the time'.

2. Transformative (tabletop) simulation

Given the complexity of regional pathways, simulation offers a powerful way to:

• Test proposed improvements in a safe environment.
• Explore system stress points (capacity, transfers, escalation).
• Identify unintended consequences before implementation.

In effect, simulation allows systems to experience the pathway as patients do across boundaries, not within silos.

The role of integrated care boards: a system risk?

Perhaps the most significant implication of this report is what it reveals about the current maturity of system oversight.

ICBs are expected to:

• Commission across pathways.
• Ensure safety across organisational boundaries.
• Use data to drive improvement.

However, the report evidences:

• Limited access to consistent safety data.
• Reduced capacity following structural changes.
• Difficulty maintaining ongoing oversight of complex pathways.

Again this is not an new issue and is a theme that we have seen in previous HSSIB investigations, including a report last year looking at the implementation of the Patient Safety Incident Response Framework.

This raises a critical question: do current system structures have the capability and capacity to oversee patient safety at pathway level?

If the answer is uncertain, then this is itself is patient safety risk, one that is largely invisible to the public.

How might the emerging quality strategy address this?

The forthcoming NHS Quality Strategy presents a critical opportunity to address many of the systemic issues highlighted in this report, particularly the fragmentation of safety across organisational boundaries. The 10 Year Health Plan stated that alongside the National Quality Board its aim would be to address a crowded and unclear quality landscape and provide a single and authoritative determination of quality. This aligns directly with the need identified here: clearer expectations, better measurement and more coherent oversight across systems.

However, emerging national discussion suggests there are still important gaps to resolve, including concerns about whether patient safety will be given sufficient prominence, and whether expectations for providers and system leaders will be clear enough to drive meaningful change.

If the Strategy is to respond effectively to the risks identified in this HSSIB investigation, it must move beyond treating safety as one dimension of quality and instead position it as a central organising principle of system design.

This creates a significant opportunity to design cross-system safety into:

• service planning
• service delivery
• accountability frameworks
• performance management
• data capture and intelligence.

Without this, there is a real risk that existing fragmentation is reinforced: where metrics are numerous but unaligned, accountability remains diffuse, and no single entity holds responsibility for understanding risk across the whole patient journey.

Conversely, a coherent and safety-led strategy could provide the support needed for ICBs and providers to jointly own pathway outcomes, supported by shared data, stronger governance and clearer system leadership. The absence of prescriptive targets may offer flexibility but it also increases the importance of how strongly patient safety is prioritised and operationalised in practice.

Final reflection

This HSSIB report highlights a fundamental truth: patient safety does not solely reside within organisations; it resides within pathways.

The 10 Year Health Plan for England envisions a significant shift in the coming years towards more neighbourhood and system-based models. As this transition takes place, the risks identified in this report will only become more pronounced.

Without clear end-to-end ownership, shared data and intelligence, robust evaluation, and strong cross-system leadership, we risk designing pathways that look coherent on paper but are fragile in practice, and where safety is too often an afterthought. The forthcoming NHS Quality Strategy could potentially present a opportunity to tackle these issues, designing for safety, to ensure safe outcomes, processes and behaviours.

The challenge now is not simply to learn from this report but to recognise that these issues are unlikely to be isolated. They are systemic and they demand a system-level response.

• Two thirds (66%) of patients and carers who used NHS services in the past 12 months experienced at least one administrative problem. There has been no improvement since the same polling was conducted the previous year.   
• While the number of people experiencing admin issues has remained unchanged, what has shifted is wider public awareness: administrative failings are increasingly recognised as a frequent and persistent problem across the NHS. 
• In 2025 less than half (43%) of the public said that the NHS is good at communicating with patients about things like appointments and test results, down from 52% in 2024.  
• The percentage of the public who said the NHS was good at keeping people informed about what is happening with their care and treatment has fallen from 42% in 2024 to 32% in 2025.
• 33% of people who had used NHS services in the previous 12 months said they had not been kept updated about how long they would have to wait for care or treatment. 
• Almost 1 in 4 people who had used NHS services in the previous 12 months (23%) reported being invited to an appointment after the date of the appointment – a 3 percentage point increase since 2024. 
• 3 in 5 people who had experienced admin issues (60%) said it made them think that NHS money is being wasted.  
• People living with a long-term health condition are more likely to say the NHS is poor at keeping people informed about what is happening with their care and treatment (45%), compared with 36% of people who do not have a long-term condition. 
• 4 in 5 patients and carers (81%) who report they are struggling financially have experienced an issue with NHS admin, compared with 63% of those who are comfortable financially. 

Related reading on the hub:

• The challenges of navigating the healthcare system

Carers spent between 6 and 220 hours on ‘indirect’ care tasks over the 12 weeks:

• At the lower end of the range, carers who reported low amounts of indirect care often lacked external support – there was no project management to perform because they were alone and unsupported.
• At the higher end, tasks included supervising and liaising with paid care providers; administrative tasks, including those pertaining to medication, equipment, appointments and benefits; and engaging with their loved ones’ medical professionals.
• A substantial proportion of these activities was necessitated or intensified by poor system design, including poorly implemented digitisation, reactive (instead of proactive) medication and equipment supply processes, and circuitous bureaucratic systems. All these were underpinned by under-staffing at the institutions with which they engaged.

The research reveals a potential misunderstanding about how care functions for family/friends once paid care workers are in place. For some carers, receipt of paid workers marked a transition from hands-on ‘direct’ care to managing the direct care. Others were also providing high amounts of direct care alongside paid workers. Thus, policy-makers and the public should not assume that care provided by workers will remove care provided by unpaid loved ones.

Carers’ long-term knowledge of the care receivers enabled them to ensure:

• appropriate medical treatment by acting as living repositories of their loved ones’ medical histories
• person-centred care by supporting paid care workers to understand their loved ones’ needs and preferences where care receivers were less able to do that themselves.

Carers plugged the gaps in the paid care system by:

• supporting paid care workers when there were too few, or under-trained, staff, particularly when care receivers required 2 people or during staff absences
• stepping in when their loved one’s condition fluctuated in ways which planned services could not accommodate
• providing entertainment and engagement, ensuring quality care beyond the basics.

Overall, the redesigned patient-centred discharge process was perceived positively by ED physicians and advanced practice providers, ED nurses, and patients. All three groups identified work system facilitators regarding the intervention, in particular the usability of the AVS. Work system barriers pointed to areas for future improvement of the intervention, such as adding prepopulated information to the AVS.

Using a human-centred design process, the authors improved ED discharge for older adults. The SEIPS-based research and evaluation fit with the learning health system concept as it provides input for future work system and patient safety improvement.

• Clinical care should, by default, consider that people may be presenting with multiple long-term conditions. There are now more and more people living with multiple long-term conditions, and people’s health conditions rarely fall neatly into separate clinical categories. Current models of care based on isolated care plans and siloed service pathways lead to poorer experiences and outcomes for people and inefficiencies for service providers.
• Co-ordinating clinical care is vital for getting the right support for people with multiple long-term conditions. This requires changes in how clinicians work, and how commissioners support them.
• IT systems, information governance and physical infrastructure are all key enablers of clinical co-ordination. It is essential that clinicians understand why and how changes will benefit them and their patients, and that patients and carers are able to access the information they need for their own agency and control.
• Whatever configuration they work in, clinicians need to ensure that they have clearly defined roles and responsibilities, and should develop their understanding of each other’s roles to support more joined-up thinking. Training – including continuing education – is important to support this.
• Removing financial system constraints, such as changing incentives to align with effective care for people with multiple long-term conditions, is an essential part of future-proofing the system against poor-quality provision for the increasing numbers of people living with such conditions.
• Local service design needs to be co-produced based on deep population knowledge as well as drawing on clinician and patient perspectives; there is no one model for caring for people with multiple long-term conditions, but there should be shared principles such as good communication, holistic care and access to information.
• Prioritising the development of outcome-based metrics – in particular those metrics that consider the impact of care co-ordination across conditions – in partnership with patients will help to improve understanding of the approach to care that can best address the needs of people with multiple long-term conditions and enhance the overall quality of that care.

Drawing on extensive engagement with patients, clinicians and NHS England, Prescription for outpatients: reimagining planned specialist care outlines five key ambitions to reshape the outpatient model:

1. provide timely care by the right person, in the right setting,
2. empower patients through personalised care and self-management,
3. improve communication across professionals and with patients,
4. use innovative models of care to avoid unnecessary appointments,
5. harness data and technology to reduce inequalities and prioritise need. 

The report also proposes eight transformational shifts to how care is delivered, supported by five key enablers including digital infrastructure, workforce investment, and improved commissioning models. Collectively, these changes aim to ensure outpatient services are more efficient, equitable and centred around patients' needs.

The Patients Association is a UK-wide charity dedicated to amplifying patient voices and improving healthcare experiences. We provide support, guidance, and advocacy to help people navigate the complex world of health and social care.

Our free helpline offers specialist information and guidance to anyone, across all four UK nations. Whether you’re struggling to understand your healthcare options, need help resolving a concern, or just want to share your experience, our team is here to listen and assist. While we are not medically trained and cannot offer clinical or legal advice, we can help you make sense of the system and connect you with the right resources.

What can you contact us about?

The healthcare system can be overwhelming, and it’s not always clear where to turn for help. Our helpline is here to support you with a wide range of concerns, including:

• Care navigation – understanding how to access the right healthcare services, from GP appointments to specialist referrals.
• Your healthcare rights – how to get a second opinion, changing your GP or dentist, or accessing your medical records.
• Making a complaint – guidance on raising concerns about NHS or social care experiences, including who to contact and how to escalate issues.
• Accessibility and patient safety – ensuring you receive the support you need, such as interpreters or disability accommodations, and knowing what to do when care falls short.

How the helpline has helped patients

Ramona*, a concerned relative, reached out to our helpline after her Deaf family member faced barriers at their GP surgery. Despite requesting a British Sign Language (BSL) interpreter well in advance, the patient arrived at their appointment to find no interpreter arranged. The situation left them struggling to communicate effectively, leading to frustration and a lack of clarity about their care.

When Ramona later contacted the GP practice, she was told there was "no budget" for BSL interpreters. Feeling this was unfair, she contacted us to speak to someone about it. Our helpline team explained that GP surgeries have a responsibility to provide accessible communication support. We guided her to contact the local Integrated Care Board (ICB) for clarity on funding policies and directed her to the Equality Advice and Support Service (EASS) for further support in raising a formal complaint. With this information, Ramona felt empowered to challenge the decision and advocate for her relative’s rights.

Another caller, Arman*, contacted us after facing difficulties in managing their ADHD treatment. Following discharge from a specialist clinic, their GP continued prescribing their medication, but when it became less effective, they were told that only a specialist could approve a change. This meant starting the referral process again, leading to long delays and uncertainty.

Feeling stuck, Arman contacted our helpline for guidance. We suggested asking their GP to clarify why specialist input was needed and whether any alternative medications could be prescribed in the meantime. We also explored ways to speed up the referral process, including requesting a referral back to their previous clinic or finding another specialist with a shorter wait time. With these options in mind, Arman felt more confident in approaching their GP and taking control of their care.

Call or email the helpline

You can call our helpline on 0800 345 7115 (freephone) between Monday to Friday, 9:30am to 5pm. You can also send us an email at: helpline@patients-association.org.uk.

Your voice matters

Calling the helpline doesn’t just help you, with your permission, your experiences contribute to wider improvements in patient care. Our partnership with the Care Quality Commission (CQC) means that your feedback can help inform changes in healthcare services, ensuring others don’t face the same challenges.

If you have concerns about your healthcare, need help understanding your rights, or just need guidance on where to turn next, our helpline is here for you. You don’t have to navigate the system alone, speak to one of our friendly team members and we can help you find the answers you need.

* Names have been changed.

Related reading

• Lost in the system? NHS referrals
• "I love the NHS, BUT..." Preventing needless harms caused by poor communication in the NHS (DEMOS, November 2023)
• Robust collaborative practice must become the bedrock of modern healthcare
• Robbie: A homeless patient’s struggles with the system
• Digital-only prescription requests: An elderly woman sent round the houses
• Lost in the system: the need for better admin
• Digital-only prescription requests: An elderly woman sent round the houses

Although every experience of navigating the healthcare system is different, the blogs in this series highlight some clear themes:

• Confusing communications and correspondence.
• Information not accessible across departments.
• Disjointed electronic systems, often not talking to each other.
• Concerns around the impact of delays to treatment and diagnostic tests.
• Near misses managed by patients and family members.
• Concerns for more vulnerable patients and those without advocates.
• The negative impact on mental health and stress levels.
• Not knowing who to contact to chase referrals, appointments or results.

Read Sue’s story  Sue’s husband Neil has a very rare chronic condition and is under the care of many different specialties. In this blog, Sue shares her and Neil’s experiences of trying to coordinate the healthcare system and highlights the challenges and frustrations they continuously face. 

Read David’s story  In this blog, David shares his story about his elderly sister who has dementia, and a mix up with an urgent referral which led to a near miss.

Read Margaret’s story  Margaret’s father has dementia and a complex set of health issues. In this blog, Margaret shares her experience of trying to coordinate their elderly father's upcoming surgery.

Read a university student’s story  Moving to university is a big transition for many. In this anonymous blog, a student describes how persistent health issues led to a frustrating journey through the healthcare system.

These stories illustrate how disjointed systems can affect patient and carer experiences and have a negative impact on health outcomes.

Commenting on the issues highlighted in the series, Chief Executive of Patient Safety Learning, Helen Hughes says:

“Poorly coordinated care is not only confusing and frustrating for patients but also creates safety risks that can result in serious avoidable harm. We hear many examples, such those covered in this blog series, of patients and their families facing a complex and fragmented healthcare environment. When they raise concerns about care and treatment, in too many cases they encounter an unresponsive system where they are left to ‘join the dots for patient safety’. 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.”

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 content@pslhub.org.

Related reading

• Lost in the system? NHS referrals
• "I love the NHS, BUT..." Preventing needless harms caused by poor communication in the NHS (DEMOS, November 2023)
• Robust collaborative practice must become the bedrock of modern healthcare
• Robbie: A homeless patient’s struggles with the system
• Digital-only prescription requests: An elderly woman sent round the houses
• Lost in the system: the need for better admin
• Digital-only prescription requests: An elderly woman sent round the houses

• It was identified that action could be taken at all points of the patient pathway to improve the quality of care, with a particular call to alert patients’ ‘usual’ epilepsy team when they present with a seizure.
• There is a need to improve documentation as, for example, 26.1% patients did not have their anti-seizure medication (ASM) written in their notes.
• In 38.5% hospitals, specific information or education regarding epilepsy was not routinely provided to patients until their first clinic appointment, which may be many weeks after discharge.

• Establish a three-way dialogue between the patient, GP, and the specialist to ensure patient partnership and shared decision making.
• Streamline the referral process for GPs to get the advice.
• Include pharmacists into the advice and guidance process.

The group also suggested ways to better engage patients in the service:

• Consider the individual’s care and communication needs.
• Allow patients to add information to the e-referral system and increase patient access to their medical records.
• What matters most to the patient should guide the referral
• Provide information to patients on how to manage their health while they wait for the referral or outcome of the advice and guidance request.

To raise awareness of the service among patients, the group suggested that two type of resources: one to raise awareness, and one to provide guidance about the actual service and how it works.

The group also said that since it’s patients who benefit from the specialist advice and guidance service, any evaluation of the service should be patient-focused and provide information on how the service is working for patients and opportunities for making improvements.

The group’s suggestions for evaluating the service are:

• Impact of specialist advice on patient experience, access, and patient journey.
• Impact of specialist advice on supporting greater patient engagement, shared decision making, patient choice, and self-care.
• Patient awareness and knowledge of specialist advice.
• Effective communication and information-sharing during the specialist advice/referral process.
• Impact of specialist advice on equality and health inequalities and ensuring ease and equity of access to care.
• Availability and access to advocacy and assistance services during the specialist advice process.

• Prevention campaigns are badly targeted and referral rates for those who do develop a health condition are inconsistent.
• At every stage marginalised communities face barriers to accessing high-quality recovery and rehabilitation services, including through societal discrimination, lack of cultural competence or communication barriers.
• A lack of consistent data is damaging the ability of health services to provide rehabilitation that meets needs.
• Without high-quality rehabilitation a patient experiences a downward spiral, and the prevalence of one LTC can often lead to multiple conditions.

• Comprehensive search tools to risk stratify patients – built for EMIS and SystmOne.
• Pathways that prioritise patients for follow up, support remote delivery of care, and identify what elements of long-term condition care can be delivered by staff such as Health Care Assistants and link workers.
• Scripts and protocols to guide Health Care Assistants and others in their consultations.
• Training for staff to deliver education, self-management support and brief interventions. Training includes health coaching and motivational interviewing.
• Digital and other resources that support remote management and self-management.

The frameworks are being implemented by GPs across the country, helping practices to identify who needs priority care, and those whose care can safely be delayed.

These frameworks are designed to be adapted to local context and preferences. 

• NHS 111
• 999
• Integrated Urgent Care Clinical Assessment Services
• NHS 111 Online
• To assist in the management of patients presenting to urgent care or emergency departments (Reception Point).

The system is owned by the Department for Health and Social Care, commissioned by NHSx and delivered by NHS Digital.