The challenges of navigating the healthcare system

Summary

Navigating the healthcare system in the UK can be complex and frustrating for patients, families and carers. We hear time and time again on the hub 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 series of blogs on the hub, patients and their relatives describe the challenges and barriers they have faced when trying to navigate the healthcare system. 

Content

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 [email protected].

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