Mike Hughes has congenital Nystagmus and Ocular Albinism. He’s been a member of Nystagmus Network since 2010 and is a patient at Leicester Royal Infirmary where he had a Kestenbaum Tenotomy in 2011. He produces the Nystagmus Network “DLA, PIP and Nystagmus” guide, which we think is the only one of its kind in the UK. He has made regular appearances at the Open Day running workshops on DLA and PIP for the past 5 years on behalf of Greater Manchester Welfare Rights Advisers Group (GMWRAG) for whom he runs a web site and Twitter account.
He has worked in advice work, especially benefits advice work, as a volunteer; paid employee and manager in both the voluntary and local authority sectors in North Wales, Chester and Salford for the past 31 years. He’s an experienced adviser; trainer and public speaker and has represented clients at hundreds of appeal tribunals and beyond. He has been responsible for establishing several social security case law precedents and is currently pursuing a potential test case on DLA mobility component for a child with a visual impairment.
He chaired his employers staff disability group for eight years and is a member of the award winning Transport for Greater Manchester DDRG group, which advises on accessibility across the transport network in Greater Manchester. He also works with medical students in the University of Manchester talking about significant illness; his eyes and his patient history. He has recently been working closely with staff from the Manchester Centre for Genomic Medicine and Health Education England in order to publicise the 100,000 Genome Project, in which he is a participant awaiting confirmation as to whether his Ocular Albinism is in fact Albinism.
Outside of work Mike supports Wrexham AFC and is an active member of their Disabled Supporters Association, which is more currently successful than the team! He plays guitar and drums; listens to far too much music; has a significant backlog of books to read and likes the cinema and eating his way around the restaurants of Greater Manchester. Mike lives on Twitter @mikehughescq where he can often be found talking Nystagmus, accessibility, buses, music and benefits