POOR NHS DECISION-MAKING PART I

When the NHS Erases Your Past: The Hidden Danger of Destroyed Medical Records, and the Life I’m Forced to Live Without Mine

How losing my childhood brain tumour records left me fighting not just disability, but disbelief

Image created by the author with the help of Co-pilot AI

🔥 The Silence That Follows “There’s No Record of That”

Way back in the dim and distant year of 1972, surgeons removed a tumour from my brainstem. I was a child, given my** Last Rights… I survived. Today, at 56, I can no longer walk. I live with[ tremors](https://www.nhs.uk/symptoms/tremor-or-shaking-hands/)/ focal seizures / [cognitive declin](https://www.ncbi.nlm.nih.gov/books/NBK559052/)**e / breathing issues / **dyspnoea/ fatigue, / [right eye problems](https://eyewiki.org/Ophthalmologic_Manifestations_of_Brainstem_Stroke_Syndromes#:~:text=Strokes%20involving%20the%20arteries%20supplying,are%20involved%20in%20visual%20pathways.), and [auditory decline](https://publications.aap.org/pediatrics/article-abstract/119/6/e1351/70743/Auditory-Brainstem-Response-Abnormalities-and?redirectedFrom=fulltext)**.

My wife, now my registered carer, can no longer sleep beside me because my body shakes violently through the night.

And yet, when I sit in front of doctors now, many don’t believe I ever had cancer.

Not because the symptoms don’t make sense. Not because the long‑term effects of brainstem surgery are unknown. But because the NHS destroyed the records.

There is a particular kind of silence that fills a consulting room when a doctor says, “There’s no record of that.”

It is not loud. It is not dramatic.

It is a quiet erasure, a soft rewriting of your own history.

The Systemic Problem: NHS Records Are Not Kept for Life

Most people assume medical records, especially surgical records, are preserved indefinitely. They are not. NHS retention schedules allow for the destruction of many hospital records after eight years. Older records, especially from the 1970s, were routinely destroyed long before digital archiving existed.

Which means:

• childhood cancer records
• neurosurgical notes
• anaesthetic charts
• early imaging
• post‑operative complications

… MAY NO LONGER EXIST.

My records were not selected for permanent preservation. So they were destroyed. And with them, the evidence of what happened to me.

***Jonathan Townend, RMN - Editor *25.03.25

⚠️ When Records Disappear, Patients Pay The Price

The NHS itself warns that missing records create “gaps in clinical knowledge.” But the consequences are far more personal and far more devastating than policy language suggests.

• Misdiagnosis and delayed diagnosis. Without my surgical notes, doctors would be unable to identify which nerves were severed accidentally or necessarily, and which viscera were damaged.
• Repeated investigations. I’ve undergone tests that would have been unnecessary if my history were known.
• Loss of clinical credibility. When doctors cannot see evidence of past treatment, they sometimes doubt the patient.
• Inability to link past trauma to present disability. My symptoms are not random. They are the long shadow of a childhood surgery.
• Emotional harm. There is a particular cruelty in being forced to prove your own suffering.

💔 The Human Cost:

A happy marriage reshaped by missing records. My wife, Carol Townend, my partner of decades, can no longer sleep beside me. The tremors, the pain, the seizures make it impossible. This is not the life either of us imagined. And yet, when we seek help, we are met with doubt because the paper trail that explains everything has been shredded.

The NHS did not just destroy documents. It destroyed continuity. It destroyed context. It destroyed future clinicians' ability to understand the full story of my body.

Why Were These Records Destroyed?

The destruction of medical records is not an accident. It is policy. The typical retention schedules of most adult hospital records are kept for** eight years, and a child’s records are retained until the patient’s [25th or 26th birthday](https://www.bma.org.uk/advice-and-support/ethics/confidentiality-and-health-records/retention-of-health-records)**

Pre‑digital era: paper records were bulky, expensive, and prone to loss.

No foresight: survivorship and long‑term effects were poorly understood in the 1970s.

No protection for rare or complex cases: even childhood neurosurgery could be destroyed.

Brain surgery on a child should never be treated as disposable paperwork.

📚 Even the NHS Warns of the Risks

NHS England’s own policies emphasise that records must always include:

• “integrity and authenticity.”
• Those missing records create “gaps in clinical knowledge”
• Organisations must investigate lost files
• Destruction is expected once the minimum retention periods expire

The system knows the risks.

It accepts them.

And patients have little choice but to live with the consequences.

🧠 The Long Shadow of Childhood Surgery

The brainstem controls all these functions:

• Breathing
• Balance
• Eye movement
• Muscle tone
• Coordination
• Vocal function

Every symptom I live with today can be traced back to that operation. But without records, clinicians must guess.

And guesswork is not medicine.

🏥 This Is Not Just My Story, It’s a National Problem

Across the UK, thousands of people treated decades ago, especially as children, now face long-term complications with no surviving documentation. This is not a rare failure. It is a systemic one.

🛠️ What Needs to Change, Now

• Extend retention periods for surgical and complex cases Lifelong conditions require lifelong records.
• Mandatory digitisation of legacy records Paper is fragile. Digital archives are not
• A national patient‑held archive Patients should be able to store and access their own medical history
• Automatic preservation of rare, complex, or high‑risk cases Childhood neurosurgery should never be destroyed
• Transparency and accountability Patients deserve to know when and why their records were destroyed

🔚 Closing: When the System Forgets, the Body Remembers

The NHS may have destroyed the records of my childhood cancer, but my body has kept every one of them.

Every tremor. Every seizure. Every breath that catches. Every night, my wife sleeps alone because my body will not let her rest beside me.

Medical records are not just documents. They are the memory of the healthcare system. When those memories are erased, patients are forced to carry the burden alone.

I survived a brainstem tumour. But surviving the loss of my medical history has been far harder.

“Unless the system changes, more people will face the same fate.”

***Jonathan Townend, RMN - Editor *25.03.25

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