Care co-ordination for people with long-term conditions: Patient Safety Learning’s response to HSSIB investigation

Summary

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.

Content

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

1. HSSIB. Workforce and patient safety: primary and community care co-ordination for people with long-term conditions, 10 April 2025.
2. NHS England. Care co-ordinators, Last accessed 10 April 2025.
3. Patient Safety Learning. The challenges of navigating the healthcare system, 24 February 2025.
4. UK Parliament. NHS: Independent Investigation, Hansard, Volume 753, 12 September 2024.
5. 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].