From Silly Rules to Sensible Care

How the Pernicious Anaemia Society is leading the charge for a more responsive, patient-centred NHS.

In the middle of last week, I received a notification on my NHS App of an upcoming appointment three months in the future. It worked perfectly, a notification saying there was a message. A link to open the message, an option to change the date, a click to put it directly in my electronic diary.

Later that day I came home to a message on my answerphone from the NHS confirming the same appointment in three months’ time. Two days later a letter arrived in the post. Each time I doubled checked that the information was the same. It was. By the time I got the “snail mail” letter I was beginning to wonder if this was really the best use of technology and my taxes.

The National Health Service was born from a specific kind of Welsh defiance—a belief that health is a right, not a privilege. When Aneurin Bevan launched the NHS in 1948, he famously drew inspiration from the Tredegar Medical Aid Society in his home constituency. It was a system built on collective care and local listening.

This legacy of Welsh advocacy is woven into the very fabric of modern patient support. Take, for example, the roots of the Pernicious Anaemia Society. Founded by Martyn Hooper in Wales, it began because the system wasn’t listening to the lived experience of patients suffering from a debilitating, often misunderstood condition. Like Bevan’s original vision, it was born out of a necessity to bridge the gap between clinical bureaucracy and the human reality of illness.

Today, as we look at the state of healthcare, we face a new challenge. It isn’t just about funding or structures; it is about the “Silly Rules” that have quietly accumulated over decades, stifling the very care Bevan sought to protect.

The Weight of “Silly Rules”

A recent national report by the Bevan Commission, Silly Rules: Breaking the Rules for Better Care, reveals that unnecessary bureaucracy is not a minor inconvenience. It is a system-wide challenge that wastes time, fragments care and undermines the morale of the very people we rely on.

Consider the “Bicycle Book” anecdote from the report: for decades, staff at one hospital were required to sign a ledger every time they cycled to work. The rule originated during WWII to track extra food rations. Decades after rationing ended, the ritual continued—a ghost of a policy haunting the modern ward, wasting time and physical space simply because “that’s the way it’s always been done.”

Why Listening is a Prudent Investment

If we are to improve the NHS for the patient, the staff, and the country, we must treat listening as a strategic investment. The report found that when you actually ask the frontline and the patients what is broken, the answers are strikingly practical:

• The “Ill Enough” Barrier: We often see rules that prevent patients from accessing preventive wellbeing groups until they have deteriorated significantly. This is the opposite of prudent care; it forces the system to wait for a crisis rather than investing in early advocacy.
• The Duplicate Burden: Patients frequently have to provide the same personal information to multiple departments within the same building because digital systems don’t talk to one another.
• The Cost of Silence: A single ward manager might spend six hours on a report for a minor incident. Scaled across the country, this administrative friction costs millions of pounds and thousands of clinical hours.

A Moral Imperative for Change

Addressing these barriers is both a prudent and a moral imperative. Transformation doesn’t always require a multi-billion pound restructure; often, it requires “clearing the path” so people can do their best work.

• For Patients: It means a system that values your time and your experience, making care simpler to access and navigate.
• For the Workforce: It means feeling empowered to challenge outdated routines without fear of blame. It’s about restoring the “joy in work” by removing low-value tasks and helping patients.
• For Policymakers: It means designing frameworks that offer flexibility rather than rigidity, ensuring that national consistency never comes at the expense of local common sense.

The Path Forward: Advocacy in Action

The Pernicious Anaemia Society, like Aneurin Bevan, can prove that the best healthcare comes from observing what isn’t working on the ground and have the courage to change it.

The Bevan Commission has now developed a Silly Rules Toolkit to help health boards identify and strip away these invisible barriers. This isn’t about criticising the hard-working professionals within the NHS; it is about working together to ensure that the rules we live by continue to serve their original purpose without adding unnecessary burden.

By simplifying the “silly” and investing in the “sensible,” we honour the heritage of Welsh healthcare advocacy. We move closer to a system that doesn’t just treat patients but truly hears them.

This September, the Pernicious Anaemia Society is taking our findings from 20 years of support, education and research to a parliamentary reception to demonstrate that the path from “silly” to “sensible” is within reach. Through our membership of the B-12 Alliance, we are urging the government and NHS policymakers to adopt three practical steps that would transform the lives of those living with this condition. First, we must simplify access to treatment by supporting subcutaneous self-administration and utilising community pharmacies to deliver care. Second, we can drastically reduce unnecessary GP appointments, referrals and repeat testing through better professional education and more rigorous application of the NICE Guideline especially with regard to access to better testing including MMA. Finally, we must embrace digital pathways to empower patients with symptom tracking and remote monitoring, creating a rich data source to fuel the research of tomorrow. To help us make this vision a reality, we need your support.

Please consider donating to our JustGiving campaign so we can produce the high-impact materials and evidence needed to ensure our voice—and your experience—is heard at the very heart of government.

Wherever you are in the UK, please also consider writing to your Member of Parliament with your own personal story about PA or B12 deficiency to encourage them to attend the event. We have provided details of how to access and write to your parliamentarian and suggested a template letter which you can adapt for your own circumstances.
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