Forgotten Conditions: misdiagnosed and unsupported, how patients are being let down.

Mark Weston & Julia Manning

This paper is a report on a roundtable held by 2020health on 12 June 2012 in Portcullis House, London, on “Forgotten Conditions”. These are health conditions and diseases that due to their low prevalence mean patients often get neglected or overlooked. The event, hosted by Andrew George MP and chaired by Lord Clement-Jones, brought together 15 health policy-makers, GPs, academics, public relations professionals and representatives of third sector organisations to discuss how to ensure that the rarer conditions that have traditionally been neglected by the NHS are allocated the investment and attention necessary to ensure prompt diagnosis and appropriate treatment for the many individuals they affect.

This publication is a short report of proceedings with the background context for the discussion. A list of participants, the agenda, and a further reading list are provided in appendices.

Impact:

• All those who attended the round-table, including Lord Tim Clement-Jones and Andrew George MP, were determined not to let the subject drop.
• We are currently working with the NASS to highlight the need for diagnosis, and we worked with the Anthony Nolan Trust to highlight issues of survivorship.