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This article* is an update from Dr Henrietta Hughes, Patient Safety Commissioner for England. This week I had the pleasure of meeting with Janet Williams MBE who with EMMA M. and INFACT have done so much to provide information and support to patients taking Sodium Valproate. Women are still not getting the information needed to make the choices that are right for them at different stages of their lives. Despite regulators advice patients continue to be dispensed sodium valproate in plain white boxes with no warning labels or patient information leaflets. Janet shared a devastating story with me about a patient who was only told about the harmful effects of sodium valproate after she had conceived. There are many complex and interdependent factors and a huge amount of work needed to get this right. So I was very pleased to meet with David Webb Chief Pharmacist and Aidan Fowler to get a deeper understanding of the barriers and how I can help to overcome them. It can be done - national safety systems have led to rapid identification and remediation of problems such as with ventilators during the pandemic. When information is available and people work collaboratively the system can respond swiftly , compassionately and in a joined up way. Information and data was central to my discussion with Scott Pryde and the Outcomes and Registries team at NHS England. When we have access to outcomes data including patient reported outcomes and experience (also known as PROMS and PREMS) then it will be possible to have more meaningful conversations about choosing the right treatment, possible side effects and other treatment options. It also relies on high quality and complete data and we discussed barriers to sharing data and helpful innovations to overcome this. Patient voice and how this is heard and acted on was the theme of my meeting with Helen Hughes. I met Sean O’Kelly, Chief Inspector of Hospitals at Care Quality Commission and talked about Safe and Well Led organisations. Leaders who actively listen and join the dots between safety, culture, patient and worker voice know more, know sooner and can take remedial action to keep people safe. My question to healthcare providers is ‘Who is the voice of patients at Board?’ Meeting the needs of all patients is key and in my call with Dr Habib Naqvi MBE of the NHS Race & Health Observatory we discussed the risks to patients when medical devices such as pulse oximeters work less effectively on patients from black or minority ethnic backgrounds. Let’s make sure that patients views are central to design and delivery - that’s how we will get it right for everyone. I’m pleased to see the NHS England Operating Framework has a key objective to ‘Strengthen the hands of the people we serve’ Mark Cubbon. For this to become a reality we need to have meaningful conversations with people, patients and everyone who works in the healthcare system to lift these words off the page and into our everyday experience. #patientsafetycommissioner #patientvoice #data #sodiumvalproate This article was first published on LinkedIn.

Authors of this report conclude that: "...patient-reported experience measures (PREMs) offer great insights into what is happening on the ground. The chances of any intentional/ unintentional bias are minimal as it comes directly from the patients. If appropriately implemented, PREMs can be a great proactive tool to ensure good quality of service rather than depending on near misses or incidents to happen and be reported. PREMs offer a unique opportunity to directly involve the patients in their care as they are essential stakeholders in the quality of care."