Lost Between Departments: What to Do When the NHS Cannot Decide Who Is Responsible for Your Care

The NHS is, by any measure, one of the most complex healthcare systems in the world. Its scale, its specialisms, and its commissioning structures are designed to deliver targeted, expert care to tens of millions of people. But complexity has a cost. For a significant number of patients—particularly those whose conditions do not fit neatly into a single specialty, or whose symptoms straddle the boundary between physical and mental health—that complexity can become a barrier rather than a benefit.

If you have ever been referred back to your GP by a specialist who concluded your condition was not within their remit, only for your GP to refer you back to the same or another specialist, you will recognise this experience. It has a name in healthcare policy circles: the service gap. And it is far more widespread than the NHS publicly acknowledges.

Understanding Why Gaps Exist

The NHS is structured around specialisms. Cardiology, neurology, gastroenterology, psychiatry—each department has defined criteria for the patients it accepts and treats. This model works well for conditions that are straightforward to categorise. It works considerably less well for patients whose presentations are multifactorial, whose symptoms evolve over time, or whose conditions sit at the intersection of two or more specialties.

Common scenarios in which patients fall through the gaps include:

Medically unexplained symptoms. Conditions such as fibromyalgia, chronic fatigue syndrome (ME/CFS), and functional neurological disorder are frequently passed between departments because they lack definitive biomarkers and do not fit cleanly into established diagnostic frameworks.

Dual diagnosis situations. Patients experiencing both mental health difficulties and physical health conditions often find that each service focuses on one aspect of their presentation whilst deferring the other. A patient with depression and chronic pain, for example, may find that their mental health team considers the pain beyond their remit, whilst their GP feels the mental health component requires specialist input.

Complex multi-organ conditions. Conditions such as lupus, Ehlers-Danlos syndrome, or long COVID can affect multiple body systems simultaneously. Without a designated coordinating clinician, patients may accumulate referrals to multiple specialists, none of whom takes overall responsibility for their care.

Transitional gaps. Young people moving from paediatric to adult services, or patients discharged from hospital without adequate community follow-up, frequently find themselves in a period of clinical limbo that can have serious consequences.

Recognising That You Are in a Gap

Some patients spend months—or years—in a service gap without recognising it as such. They assume that the absence of a diagnosis means nothing is wrong, or that the repeated referrals are a normal part of the investigative process.

There are signs that suggest your care has become uncoordinated rather than thorough:

• You have been referred to three or more specialists without a unifying clinical opinion.
• Appointments with different departments are not resulting in any shared documentation or care plan.
• You are consistently asked to repeat your full history at each new appointment, indicating that records are not being shared.
• Your GP has expressed uncertainty about who is leading your care.
• You have been discharged from a specialist service without a clear explanation of what comes next.

If several of these apply to your situation, it is likely that you are experiencing a systemic coordination failure rather than a straightforward diagnostic delay.

Building Your Own Case File

In the absence of coordinated clinical oversight, the most effective thing a patient can do is become their own case manager. This is not a role you should have to play—but in practical terms, it can make a substantial difference to your outcomes.

Begin by requesting copies of all relevant letters, referral notes, test results, and discharge summaries. You are legally entitled to access your NHS medical records, and your GP surgery or hospital trust must respond to a subject access request within one month. Organise these documents chronologically and identify any inconsistencies, gaps in testing, or instances where a concern was raised but not followed up.

Keep a symptom diary that is specific and dated. Note not only what you experience, but also what you have tried, what has helped, and what has not. This record serves two purposes: it provides clinical evidence, and it demonstrates to any reviewing clinician that your concerns are sustained, documented, and serious.

Who to Contact When the System Fails

Once you have established that your care is fragmented, there are several routes available to you.

Your GP. In many cases, the GP remains the most powerful advocate for a patient who has become lost in the system. Request a dedicated appointment—not a routine ten-minute slot—to discuss care coordination specifically. Ask your GP to write formally to the relevant specialists requesting a multi-disciplinary team (MDT) review, or to identify a named clinician who will take overall responsibility for your case.

Patient Advice and Liaison Service (PALS). Every NHS trust has a PALS office. Its role is to help patients resolve concerns about their care informally and quickly. PALS can facilitate communication between departments, escalate concerns to clinical leads, and help you understand your options. They are not an investigatory body, but they can be a useful first port of call.

Integrated Care Boards (ICBs). Since the 2022 NHS reforms, Integrated Care Boards have assumed responsibility for commissioning and coordinating health services across their areas. If your care gap appears to be a systemic issue—for example, if there is no commissioned pathway for your condition in your area—your ICB is the appropriate body to contact. ICB contact details are available on the NHS website.

NHS England. For patients who have exhausted local routes, NHS England's national patient experience team can be contacted directly. In cases involving serious harm or risk, the Parliamentary and Health Service Ombudsman has the authority to investigate complaints that have not been resolved at a local level.

Specialist charities and patient organisations. For many complex conditions, condition-specific charities have extensive experience navigating NHS pathways and can provide guidance, template letters, and direct support. Organisations such as Lupus UK, the ME Association, and the Chronic Pain Coalition have developed detailed knowledge of the gaps their patient communities most commonly encounter.

Pushing for a Named Coordinator

One of the most effective structural solutions to fragmented care is the appointment of a named care coordinator—a single clinician or healthcare professional who takes responsibility for ensuring that all aspects of your care are joined up. This may be a GP with a special interest, a specialist nurse, or a key worker within a community team.

You can request this formally. Write to your GP and, if appropriate, to the relevant specialist, asking explicitly for a named coordinator to be identified. Reference the NHS Constitution, which states that patients have the right to receive care that is coordinated around their individual needs. This is not a privilege—it is a commitment the NHS has made to the people it serves.

You Are Not the Problem

Patients who find themselves in service gaps frequently internalise the failure as a reflection of their own credibility. They begin to doubt whether their symptoms are real, whether they are being too demanding, or whether they have somehow caused the confusion in their own care. This is an understandable response to a demoralising experience—but it is not accurate.

Service gaps are structural. They arise from the way healthcare systems are designed and funded, not from the patients who fall into them. Recognising this distinction is not merely a matter of self-esteem; it is the foundation of effective advocacy. When you understand that you are navigating a systemic failure, you can approach the problem with the clarity and persistence it requires.

Doctors for Patients UK is committed to supporting patients who find themselves in exactly this position—providing the information, the language, and the encouragement needed to demand the coordinated, dignified care that every person in this country deserves.