When the System Forgets You’re Human: Our Journey Through the NHS Maze

Over the past few years, I’ve learned that life isn’t just about the goals we set, but the challenges we never asked for. My partner has been battling a recurrent medical condition, and while it’s not life-threatening, it is life-altering — painful flare-ups, missed work, loss of income, emotional strain, and the constant feeling of living life on pause.

And recently, that private, exhausting battle became tangled with another one:

Trying to get help from the very system meant to support us.

I have immense respect for the NHS.

I genuinely do.

There are wonderful professionals within it — kind, exhausted, doing their best in a system stretched beyond capacity. I’ll never overlook them, because they’re the reason the NHS still stands.

But there’s another side too.

One that’s harder to talk about.

One that I’ve now seen up close.

When "Care" Gets Lost in the System

Over the course of this journey we’ve:

• Waited months for a surgery that keeps being pushed further away

• Been told referrals were sent… only for departments to insist they never arrived

• Resent urgent letters multiple times because they “weren’t visible on the system”

• Chased updates like we were reminding someone to return a borrowed pen

• Been given the wrong fit note multiple times

• Had requests ignored

• Been spoken to like we were inconveniences not patients

• And dealt with staff who seemed more determined to gate-keep than help

  
  

All while my partner suffers through flare-ups that stop him working, living normally, and yes — even impact our journey trying to start a family.

These aren't small frustrations.

They’re the kind that quietly drain your hope, your patience, your trust.

And the hardest part?

You realise the system often only moves if you push hard enough — and not everyone has the strength or the voice to push.

That terrified me.

Because if this is what it’s like for us, with a long-term condition and time to advocate…

…what happens to someone with a life-threatening illness?

To someone elderly, alone, overwhelmed, or too unwell to fight their corner?

People Make the System — For Better or Worse

I believe many NHS staff are heroes.

But systems aren’t judged by their heroes — they’re judged by their weakest points.

There are people who have clearly lost the caring spark that should be at the heart of healthcare.

People who see forms instead of families.

Policies instead of people.

And moments where empathy simply… switches off.

When you’re in healthcare long enough, compassion fatigue can be real.

Some people become hardened by pressure.

Some maybe shouldn’t be in patient-facing roles anymore.

Some never belonged there to begin with.

And when you're the patient — or the partner — you feel it.

You feel the difference between someone who wants to help and someone who just wants you gone from their desk.

The Emotional Cost

We haven’t just faced medical delays.

We've faced:

• Financial uncertainty

• Work stress

• Emotional strain

• Feeling invisible

• Feeling like we have to prove suffering

• And watching hope become something you have to actively protect

  
  

There’s nothing worse than seeing someone you love in pain, physically and emotionally, while you fight systems instead of healing.

This Isn't a Blame Story — It's a Wake-Up Call

I’m not writing this to complain.

I’m writing this because our story isn’t unique.

And while this is our long-term journey, we are painfully aware that others face this system while fighting cancers, heart conditions, emergencies, grief, fear.

If it's this hard for us…

…what happens to them?

Healthcare shouldn’t depend on how loud you can advocate.

It shouldn’t drain you more than the illness itself.

It shouldn’t make you feel like you’re slipping through cracks you never created.

To the Good Ones — We See You

To the tired ones — We understand you.

To the ones who’ve lost their empathy — It's time to reflect.

To the the system — Something has to change.

And to anyone going through something similar:

You’re not dramatic, you’re not difficult, and you’re not alone.

Fighting for care isn’t rude — it’s survival.

We will keep pushing.

We will keep speaking.

We will keep holding the system accountable — while still holding gratitude for the ones who truly care.

Because every patient deserves to feel seen.

And every human deserves dignity — not a battle — when they’re already struggling.