Rare Disease Day 26 February 2014

Political Intelligence attended Rare Disease UK (RDUK)s parliamentary reception marking Rare Disease Day, which is officially 29th February, a rare day, but as this is not a leap year was held on the 26th. Elizabeth Kendall MP hosted, and emphasised that a rare disease is not just a health condition, but also a social, emotional, and mental health condition too, and highlighted the importance of families working together.

Health Minister Earl Howe addressed the importance of patient involvement and collaboration, and the crucial role the NIHR has in funding research. He announced that: Public Health England is considering converting the current congenital abnormalities register into a rare diseases register. More needs to be done with NHS workforce training to ensure the possibility of a rare condition is considered when a patient has an undiagnosed condition. Deputy Chief Medical Officer, Professor David Walker, at the Department of Health, will be the national lead for implementing the UK Rare Disease Strategy in England. The rare disease stakeholder forum will be reconvened, to be chaired by RDUKs Chair Alastair Kent OBE, and report to Government on implementation of the strategy. NHS England had just published its statement of intent which sets out how it plans to deliver the 51 commitments outlined in the strategy.

James Palmer, NHS Englands Clinical Director for specialised services, added that as rare diseases are commissioned under specialised services, people should think of NHS England as the 212th CCG, whose job it is to help CCGs understand the NHSs commitment to improving outcomes for people with rare diseases, through better diagnostics and earlier identification. He spoke also of improving patient empowerment so patients can better manage their own conditions. Finally, Dr Beverly Searle, CEO of patient charity Unique, described how her daughter Jenny died aged 21 of a rare and severe chromosomal disorder. She spoke movingly of the abyss in transition services. Her ask list for service improvements included: (1) improved patient centric services; (2) rapid and accurate diagnosis, and an avoidance of the diagnostics odyssey that many go through, squandering time and money; (3) equity of access to information, and the ability to sign up to databases; (3) a clear personal integrated care plan including health, social, and education services; (4) expert clinical centres (including virtual centres); (5) empowerment of patient organisations; and (6) better education and training so health care professionals do at least think could this be a rare disease? For more info contact: Daniel Gooch on 0203 397 33 00 or danielg@political-intelligence.com
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