Ms Sarah O'Connell:

That is a good question. I think we, and other patients, had envisaged a lot more thorough investigation. Patients report to us that, at best, they receive blood tests. Unfortunately, no clinics are currently offering remote appointments, yet there is rarely a physical examination during the appointment. In one case a patient had blood tests that were more than six months old and the doctor was happy that they were relevant enough. There is a lack of investigation and obviously we do not want patients to be over-tested and money to be spent for no reason but one patient in her 20s was told she was too young. She had palpitations and tachycardia and was told she was too young to warrant investigation. Then later she was privately diagnosed with myocarditis and pericarditis, which are life-threatening conditions.

What we had envisaged was more investigations and the provision of symptom management. We know there is no one cure or medication but there is a lot that can be done to improve quality of life.