PSC is a rare and complex disease, and many patients understandably seek out PSC specialists for their care. Because PSC specialists are also rare, people with PSC travel hundreds of miles to find expert healthcare management.
Is that really necessary or practical, especially when the disease is in its early stages? The UK-PSC Guidelines for PSC recommend that 'early, stable disease' can be managed in general clinics. However, patients need to be assured that they are getting expert care and monitoring of PSC progression, regardless of the stage of disease.
This week, PSC Support's Digital Trustee, Gary Taylor, presented at the East Midlands and West Midlands Clinical Senates about NHS Digital Services From A Patient Perspective.
As well as being on the Q&A panel alongside some of the most senior stakeholders within NHS Digital, Gary heavily advocated the use of platforms like MyHealth Hub to reduce travel time and costs for patients who could utilise video conference for their consultant appointments.