Twenty-six years ago Howard Leicester was unexpectedly diagnosed with genetic deterioration of his eyes and ears, halfway through taking his first degree. Simple things became difficult; difficult things impossible.
However, with help and guidance from the charity Sense, which supports children and adults who are deaf and blind, Howard has since gained a PhD, run an academic department, and served on various boards in health and social care. Dr Leicester is now an independent consultant supporting change in healthcare planning and delivery.
This year, he had a chance to offer some help in his turn to Sense when he received a grant from the Vodafone World of Difference programme which offers people the chance to donate their time and skills to their chosen charity. Here, he picks up the story in his own words:
“Deafblind myself and working from home as an academic in health information systems (health informatics), I’m well on my way to providing accessible information across Kent from my native village of Otford.
“My progress has been made partly thanks to Headstar’s events and bulletins. Last year’s e-Access 10 conference introduced me to PDF accessibility expert Ted Page of PWS Ltd. Now we’re converting advanced academic textbooks from inaccessible PDFs into usable versions. Many such texts have been standard on MSc courses I’ve taught for years. But it’s only now that I’ve been able to “read” them myself. Moreover, Kent Library Services will get the products for their online library portals throughout the county.
“Then E-Access Bulletin issue 129, September 2010 introduced me to open source accessibility software expert and guiding force Steve Lee. In particular, the EduApps resource range, specially collected by the TechDis Regional Support Centre in North and East Scotland, allows us to generate and convert documents from and to various output formats. Local documents, like menus and newsletters, can thus be made more accessible for Otford residents and visitors.
“IT Can Help, the network of volunteers to help older and disabled people with IT run by the British Computer Society, is also on board. My local ambitions also stand a better chance because I’m now an Otford Parish Councillor.
“In recent months (mid March to mid May) I have also been working with the major deafblind charity Sense, generously supported by Vodafone’s World Of Difference programme which funds people to work for charities.
“I have been working with Sense, fellow academics and other local and national organisations to help promote the charity, and help to identify additional needs of deaf-blind patients in the UK in the modern digital age. Aims include to:
– Develop a standard for including ‘special needs’ in patient records;
– Produce models of local populations for predicting ‘special needs’ for planning and awareness;
– Promote computers for production and sharing of information in formats better suited to those with ‘special communication needs';
– Make Otford a more information-accessible village, and spread these principles across Kent; and
– Gather stories promoting a greater sense of humour on disability issues.
“Currently, patient ‘special needs’ are not formally collected, and data is too limited to estimate national or local needs. Most leaflets, books, mainstream and mobile websites are still inaccessible, and there is a general lack of awareness and understanding of accessibility issues.
“But”, continues Howard, “there’s progress on some of my national aims on top of my Otford activities. The ongoing Life Opportunities Survey (LOS) carried out by ONS/ODI deserves special attention by anyone involved in population modelling. For the first time, it maps up-to-date numbers on disability types to various barriers in society – and I’ve received generous, personal guidance from the official statisticians.
“Recording patients’ accessibility needs is also justified by LOS. I’ve produced a method based on self-completion linked to GP practices. I have received some encouragement for this work from various academics, Department of Health Informatics folk and RADAR, but further development and adoption will depend on receiving further help from other organisations, and I would be keen to hear from anyone interested.
“Please follow my activities in Otford and Kent, as well as my wider activities, via my website:
“The home page has a link to the programme with subsequent links to the specific strands.”