Rare Disease UK report reveals that:
– Living with a rare condition can have a huge impact including anxiety, stress, low mood, emotional exhaustion and suicidal thoughts.
– Many of the drivers of poor mental health reflect issues that are specific to managing a condition that is rare, and that patients/carers face challenges at many points during their journey from the onset of symptoms onwards.
– Patients and carers can experience not being taken seriously by healthcare professionals, sometimes being misdiagnosed with psychiatric illness, when trying to access support for their physical condition. This can have both physical and mental health implications.
This work evolved out of an inquiry conducted by the All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions, which identified mental health as a key issue facing rare disease patients and carers. Attendees shared the significant impact rare disease can have on mental health, and described the unmet mental health needs of patients and carers who frequently struggle to access support around these issues. These experiences echoed anecdotes from members of Rare Disease UK, Genetic Alliance UK, and SWAN UK; including those within Rare Disease UK’s recent Patient Experience Report.