Rare Disease Patients Should Not Be the System’s Safety Net.

For people living with a rare disease, the most exhausting part is often not the illness. It is the system that is supposed to support them.

When a patient needs a specific brand of medication, any breakdown in communication between primary care and secondary care becomes more than an inconvenience. It becomes a threat to their stability and safety.

Too many patients are forced into the role of the octopus, holding every tentacle of their care pathway together. They chase prescriptions that should have been issued correctly. They correct misunderstandings about brand requirements that should have been documented. They repeat the same information to teams that should already know it. They carry the consequences of every gap that professionals leave behind.

This is not patient centred care. It is system centred care that relies on the patient to compensate for its weaknesses.
Rare disease patients should not be the coordinators, the messengers or the safety net. They should not be the ones preventing avoidable harm.

It is time for healthcare teams to take responsibility for the communication they expect patients to manage.

If you work in healthcare, choose one action today that removes pressure from the patient rather than adding to it; Confirm the brand, share the information, close the loop.

Do not leave the patient to hold the tentacles alone.

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