To the Doctors Who Titled Me “Too Complex". By Dusty Wentworth

 

There is a particular kind of exhaustion that does not come from illness alone, but from being sent in a circle.

Not treated.
Not resolved.
Simply redirected.

It starts with a referral that promises progress and ends with a letter explaining why progress is not possible. Each appointment points elsewhere. Each service draws a boundary around its remit. Somewhere between departments, responsibility quietly disappears, and the patient is left holding the consequences.

Being labelled “too complex” is not a diagnosis.
It is an administrative decision.
It is how care ends without anyone having to say so plainly.

Living with PTSD, fibromyalgia, Functional Neurological Disorder, and acquired brain damage following a ruptured brain aneurysm is not an abstract challenge. These conditions do not exist neatly side by side. They compound each other. Pain intensifies neurological symptoms. Neurological symptoms drain energy and cognitive capacity. PTSD keeps the nervous system permanently primed for threat, amplifying everything else.

There is no rotation.
No recovery window.
No baseline.

While the body deteriorates, the instruction remains consistent.
Just get on with it.

It is often delivered without malice, but its impact is profound. It assumes deterioration is a failure of attitude rather than a consequence of unmanaged illness. It ignores the physical cost of chronic pain, tremors, seizures, muscle spasms, sensory overload, and relentless fatigue. It overlooks the reality that for many people, simply existing already requires extraordinary effort.

What is framed as encouragement often functions as abandonment.

Within the NHS, “too complex” has become a convenient exit clause. It is what happens when multimorbidity collides with siloed services. Mental health refers to neurology. Neurology refers to pain management. Pain management points back to mental health. Each department treats a fragment, while the whole person remains untreated.

Eventually, the referrals stop.

Discharge is not recovery.
It is the withdrawal of responsibility.

This experience is not rare. NHS England estimates that around one in four adults in the UK live with two or more long term health conditions. People with complex needs account for a significant proportion of GP appointments and hospital use, yet consistently report poorer continuity of care. The National Audit Office has repeatedly warned that fragmented services for patients with multiple conditions lead to worse outcomes and higher long term costs.

Once clinical pathways close, the burden shifts elsewhere.

Social services become the next battleground. Every assessment demands the same explanations, the same evidence, the same justification of disability. Impairment is treated as something that must be continually proven, as though it might have quietly resolved itself between forms.

Support is not offered as a right.
It is negotiated as a concession.

For people with neurological conditions, cognitive impairment, or severe fatigue, this process is particularly punishing. The very conditions that create the need for support also make navigating bureaucracy harder. Self advocacy becomes a full time task performed with depleted resources.

Mobility aids expose the inequity most starkly. A wheelchair is not a luxury. It is the difference between confinement and participation. Yet access to NHS wheelchair services depends heavily on where you live. Scope has documented wide regional variation in eligibility criteria, waiting times, and funding. Some people wait over a year for assessment. Others are deemed ineligible altogether.

When NHS provision fails, the cost is transferred to the individual.

A suitable wheelchair can cost several thousand pounds. Powered chairs, often essential for people with neurological conditions or limited strength, can exceed £10,000. Grants are limited and competitive. Fundraising becomes the only route to basic mobility.

This is not independence.
It is survival by attrition.

The cumulative impact is not only physical decline. It is psychological erosion. Repeated dismissal teaches people that their suffering is inconvenient. That complexity is a flaw. That needing help is something to apologise for.

Yet complexity is not exceptional. It is increasingly common in an ageing population and among those living with trauma, disability, and chronic illness. A healthcare system that cannot accommodate complexity will continue to fail precisely those who rely on it most.

This is not a demand for limitless resources. It is a call for ownership, coordination, and honesty. For acknowledging that “too complex” often means “we do not have a pathway”. For recognising that discharging a patient does not make the problem disappear.

To the clinicians who still listen, who still advocate, who still see the whole person rather than isolated symptoms, your work matters.

To those trapped in the referral loop, you are not failing the system.

The system is failing you.

If this reflects your experience, consider sharing it, discussing it, or using it as a starting point to push for better coordinated care. Change does not always begin loudly. Sometimes, it begins with refusing to quietly accept the label “too complex”.

#Dustywentworth

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