“Whose Problem Is It Anyway?”: Why We Desperately Need a Safety Net for Complex and Undiagnosed Patients

By Toni, writer, professional lip-reader, medical maze-runner, and reluctant NHS ninja

Picture this: You’ve bounced around the NHS for years. You’ve seen so many specialists that your medical history could double as a BBC mini-series. Yet, here you are—still undiagnosed, still untreated, and still stuck playing an endlessly depressing round of “Whose Problem Is It Anyway?” with your GP.

Welcome to the reality of navigating complex or undiagnosed conditions like Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS)—a world where being chronically ill feels less like being cared for and more like being perpetually passed around like a cursed parcel.

But what if it didn’t have to be this way? What if there were a system actually designed for people like us—the medical misfits, the outliers, the ones who always break the algorithm?

Let’s explore what a real safety net could look like, why we need it, and whether anything close to it already exists.

The Ideal Safety Net System

Think of it as the healthcare equivalent of your favourite local pub: warm lighting, people who know your name, and—crucially—staff who actually know what they’re doing.

Here’s what that system could look like:

1. Centralised Diagnostic Clinics

Imagine a clinic that combines the brains of Holmes, House, and half the cast of Grey’s Anatomy, minus the unnecessary drama and questionable dating ethics. These would bring together rheumatologists, cardiologists, neurologists, geneticists, and more to collaboratively solve medical mysteries.

NHS England is trialling Multidisciplinary Diagnostic Centres (MDCs) to speed up diagnoses for vague but serious symptoms, mainly for cancer, but the model could be expanded for chronic and rare conditions.Learn more: NHS England MDCs

2. Patient Advocate Teams

Navigating the NHS can feel like trying to assemble IKEA furniture blindfolded and without the allen key. That’s where patient advocates come in: professionals who streamline referrals, manage follow-ups, translate medicalese into English, and maybe even remind you to drink water.

They’d also provide emotional support, because let’s face it—chronic illness is hard enough without feeling like you’ve been emotionally ghosted by the healthcare system.

3. Flexible Care Pathways

The current NHS model tries to jam everyone into rigid, pre-set care pathways. But complex patients don’t fit. So instead, let’s build individualised plans. Got a rare condition that no one in the UK has treated since 1973? Great—let’s approve international referrals. Need to trial a treatment outside standard NICE guidelines? If it’s safe and you’re informed, why not?

Let’s stop treating flexibility like a luxury.

4. Holistic Care Hubs

A system that sees you as more than a collection of broken parts. These hubs would integrate physiotherapy, pain management, counselling, occupational therapy, and even things like sleep support and trauma-informed care.

Imagine leaving an appointment without needing to write a war-and-peace style update for every other provider because none of them talk to each other.

5. A National Database for “Unresolved Cases”

Think of it like a matchmaking app, but for rare diseases. This national tool would track patients with mysterious symptoms, using AI and pattern recognition to connect the dots that isolated doctors might miss.

A similar idea already exists in research models like the Genomics England Rare Disease program, but it’s not yet a real-time diagnostic support tool for the NHS.

6. Streamlined Access to External Resources

When the NHS can’t provide something, it shouldn’t mean the end of the road. A true safety net would help patients access private care, charity-funded treatments, or global expertise—without leaving them to crowdfund their lives on social media.

Does Anything Like This Exist?

Sort of—but not really.

Here are a few initiatives that nibble at the edges of what we need:

• Multidisciplinary Diagnostic Centres (MDCs): Great for certain types of complex diagnostic cases (especially cancer), but they’re not scaled for broader chronic or rare conditions.

• Highly Specialised Services (HSS): Virtual clinics exist for some rare diseases, but they’re limited and often require a confirmed diagnosis first—exactly what many patients can’t get.

• Genetic Alliance UK & SWAN UK: Excellent for genetic and undiagnosed children, but adults often fall through the cracks.

• The UK Rare Diseases Framework: It lays out noble goals like faster diagnosis and better coordination, but remains a work in progress.See the latest update here: UK Rare Diseases Framework – NHS England

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Why We Need This Now

The current system isn’t just inefficient—it’s actively harmful. Patients with EDS, POTS, MCAS, and similar conditions are often labelled as anxious, attention-seeking, or "too complex to help". We fall between departments. We get sent home from A&E with a leaflet and the subtle suggestion that it might all be in our heads.

The result? A tidal wave of burnout—not just for patients, but for doctors too. We’re clogging up emergency services, stretching GP capacity, and suffering alone in the process.

A dedicated system would reduce misdiagnosis, avoid duplication, and restore dignity to people who’ve been forced to become their own care coordinators, researchers, and therapists just to survive.

My Story: Just Trying to Be Seen

When I was diagnosed with EDS, it wasn’t because a doctor connected the dots—it was because my partner noticed things a doctor didn’t, and we did our own research. I’ve lost count of how many times I’ve been told to “wait and see” or passed off like a mildly inconvenient parcel of problems. One doctor even admitted, “You have too many symptoms for me to know where to start.”

Cool. Good to know I broke the matrix.

We shouldn’t have to become amateur geneticists or medical detectives just to be taken seriously.

The Heart of It

At the core, this isn’t about funding the next shiny project or inventing a futuristic hospital pod that speaks Latin and dispenses diagnostics like vending machine crisps.

It’s about hope.

It’s about ensuring people with complex, overlapping, or invisible conditions are not forgotten—by the system, by doctors, or by society. Chronic illness already takes away enough. Let’s not let it steal our hope too.

Because when we’re lost in the wilderness of the NHS, hope is what keeps us fighting. But hope alone doesn’t chase referrals, book MRIs, or challenge the system. That takes people. That takes policy. That takes will.

Let’s build the damn safety net already.

If you’ve ever felt invisible in the healthcare system, know this: you are not alone, and you are not the problem stay strong my chronically ill friends.