On 17 September, World Patient Safety Day 2026 calls for “Safe care for life!”. To mark the occasion, the EHC is releasing a new guide, “I want to talk about my pain today!”, built on a simple principle: accurate pain assessment and patient-clinician communication are fundamental to getting the right care.

World Patient Safety Day, marked every year on 17 September, is the World Health Organization‘s global campaign to raise awareness of patient safety and reduce avoidable harm in health care. This year’s edition centres on safe, ongoing care for long-term conditions: a reminder that patients who live with a condition day in, day out, and who interact with health systems repeatedly over a lifetime are relying on that care to be consistently safe.

Bleeding disorders share this long-term, lifelong nature, and with it, the same underlying safety principle: care can only be as safe as the information it’s built on. Pain is invisible and subjective, but when it is well described, it can be managed effectively.

Living with a bleeding disorder means pain is often a constant companion

Developed by the EHC with input from patients, consultant physiotherapists, a consultant haematologist, and an advanced nurse practitioner, I want to talk about my pain today! equips adults with bleeding disorders with a practical framework to describe what their pain feels like, how intense it is, where it is located, and when it happens. It also covers the difference between acute and chronic pain, specific considerations for women and girls, safe pain management options, questions to prepare before a consultation, and the “red flag” symptoms that mean it’s time to call the clinic immediately.

This guide is designed to empower adults with bleeding disorders to take control of their health conversations. By using the TILT Framework (Type, Intensity, Location, Time), preparing for your consultations, and learning how to describe both the physical sensation and the practical impact on your daily life, you can work in partnership with your care team to find targeted, effective solutions. You do not have to adapt to unnecessary suffering or manage your symptoms alone: describing your pain accurately is the first step toward reclaiming your comfort, mobility, and peace of mind.

Living with a bleeding disorder means pain is often a constant companion, whether it is the sudden, sharp warning of an acute bleed, the daily background ache of chronic joint damage, or pain associated with menstrual bleeding. Explaining confidently what you feel to a healthcare provider is the most powerful tool you have to get the right care.

Built on real, lived experience

Behind the guide are the voices of people with bleeding disorders who agreed to share what living with pain has really been like for them — and how often that pain went dismissed.

Many spoke of pain being normalised, or of not being asked about it at all:

“When I come to a haematologist with pain, they never ask me about it; what they care about is my bleed. I got used to it because I know that when the bleeding stops, my pain will stop, too.”

“Nobody ever asked me about the pain. When I mentioned being in pain, I was ignored, so with time, I just learned to accept it. While others would be rushing to a hospital, I’ve become so used to living with pain that I just ignore it and think, ‘Okay, I’ve survived this before.’ Living with pain has just become a part of who I am.”

“As a kid, I was on-demand treatment, and I had a lot of pain. And being in pain for longer periods of time, I also had trouble falling asleep. No one ever suggested a painkiller to me. It could have made a huge difference for me, and my life would have been much easier if they had. Focusing on pain in bleeding disorders would be really beneficial, as we often normalise it and don’t see how exhausting pain can be.”

Others reflected on how a lack of medication in childhood shaped the way they cope with pain today:

“When I was young, there wasn’t any medication available to treat the bleeds. Children didn’t receive any pain-relief medication either. With time, I’ve learnt my strategies for suppressing pain and memories, so I would not remember how bad the pain was.”

For women and girls, the picture was often one of not being believed:

“As a teenager, I had a lot of ovulation bleeding. The clinicians didn’t believe me; they didn’t think I had stabbing pain. They didn’t believe it was bleeding. With time, you learn how to advocate for yourself. Thanks to advocacy, I’ve recently been getting a physio regularly, but I fought really hard for that.”

“Women have been overlooked for so many years, and in my case, I was ignored, telling people that I bled and I bruised all the time, so a lot of damage was done. I didn’t have an opportunity to describe the pain when it was happening. I’m now left with pain.”

“I couldn’t stand having bleeding every ten days anymore; it was just relentless. By that point, I was actually looking forward to the hysterectomy.”

For some, the damage of unaddressed pain and delayed diagnosis is now a lasting part of daily life:

“I would like to walk without pain, but I don’t think that is going to be possible because of the damage that had been done before I was ever diagnosed at 50 years old.”

“Today, some of my joints are so destroyed. It is an acute pain, a reaction to any activity. Because of it, I started walking less, couldn’t swim, and gained weight. I just became more sedentary. I hope surgery will help me get myself back on track.”

“My goal is to be able to walk without pain. I want to be able to see more than 25% of the British Museum or the Louvre. Because now I start visiting, and at some point, I have to quit.”

And several offered a direct call to action for healthcare professionals (HCPs):

“To HCPs, ask about bleeding and bruising. If someone says, ‘My bruise is too big’ or ‘It’s lasting too long,’ or if a woman talks about periods with intense pain and heavy bleeding — listen to them. It might not be endometriosis; it could be a bleeding disorder. We need to listen to the patient.”

“I would like to tell all HCPs: sit down with people and tell them what to look out for. We, patients, cannot report things if we are not taught to identify them.”

“To dismiss an unquantifiable condition is to diminish the human being enduring it — a clinical oversight that is both painful and dangerous. When data fails to capture the struggle, healthcare must pivot to a patient-centric belief, because sometimes the most obvious answer is the right one, and every patient deserves a voice, not a dismissal.”

Why this matters for patient safety

These testimonies point to a recurring pattern: when pain goes unasked-about or not reported, normalised, or disbelieved, patients can end up carrying preventable harm in silence. They also show what becomes possible when that changes: when pain is named, described, and heard, care becomes safer, more precise, and more responsive to what the patient is actually experiencing. Reporting pain and describing it clearly is a genuine contribution to the partnership between patient and clinician.

I want to talk about my pain today! gives patients a practical, structured way to describe what they feel, and gives clinicians clearer information to act on, helping to close the gap between unspoken pain and safe, effective care.

The EHC thanks all the patients who shared their experiences for this publication, as well as Paul McLaughlin (Royal Free London NHS Foundation Trust), Anna Wells (Hampshire Hospitals NHS Foundation Trust), Prof Jan Blatny (Children’s University Hospital Brno) and Catherine Harrison (Sheffield Teaching Hospitals NHS Foundation Trust) for their expert review.