Patient Representative, British Heart Valve Society (BHVS)
Patients should be equipped with the right resources and connections to advocate for their heart health and feel empowered to make decisions that work for them.
It’s every patient’s right to be involved in their own healthcare decisions. That means being as clued up as possible about their condition, notes Pat Khan, a Patient Representative with British Heart Valve Society (BHVS).
Thorough education on the disease
“Healthcare is increasingly virtual and, after Covid, getting access to GPs isn’t easy,” she says. “To close the widening gap between patients and healthcare teams, it’s vital that patients do their homework properly. They must understand the best pathway and timeline through their disease, including the pros and cons of various treatments. Patients should know all the options to ensure that clinicians listen to their concerns and preferences.”
Naturally, this isn’t easy, particularly when it comes to heart valve disease — so being directed to the right resources and support is crucial. “The internet is an unreliable resource,” says Pat. “It’s why I refer patients to the BHVS website where they will find information about their condition, what to expect and their rights to treatment.”
Patients should know all the options to ensure that clinicians listen to their concerns and preferences.
Positive connections via patient-to-patient support groups
Thanks to social media, some patients can connect during and after treatment through patient-to-patient support groups to discuss their own experiences and concerns.
Charities such as the Ticker Club — an association of ex-heart surgery and cardiac procedure patients from Wythenshawe Hospital, Manchester — operate nearly daily visits to cardiac wards to offer patients emotional support.
“Patients can be in an extremely vulnerable mental state,” says Pat, who is part of the Ticker Club team. “They want to talk to someone who knows what they are going through, so they need well-informed volunteers to support patients with valve disease or other cardiac conditions.”
Pat believes that apps should be available to make it easy for patients to connect; while helplines should directly connect patients to specialist clinics and dedicated nurses; and forums allow patients and volunteers to meet and discuss how to optimise patient pathways.
“There are pockets of expertise, interest and passion in this field,” she says. “But a more joined-up approach is needed.”
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