09 Apr 08

Personal experiences of people with Motor Neurone Disease (MND) and their carers can now be heard online on DIPEx, the award-winning patient website based on Oxford University research.

DIPEx is an online resource for the general public, health professionals and researchers, based on one-to-one interviews with people about their experiences of specific health issues.

It has now launched a new section on MND where visitors can watch, listen to, or read clips from people describing their experiences of MND. Testaments come from 35 people living with MND and 11 carers who spoke honestly about their experiences to DIPEx researchers Louise Locock and Carol Dumelow.

The website provides reliable information about different conditions, links to other resources such as support groups, publications and other websites and answers to patients’ frequently asked questions.

The DIPEx Research Group, based at Oxford’s Department of Primary Health Care, conducted the research and one-on-one interviews.

Researcher Louise Locock said: ‘It has been a real privilege to meet so many extraordinary people and hear about their experiences. It has been sad at times but also very inspiring. We hope the website will raise awareness about MND and the need for more services, as well as providing support for other people living with MND.’

The project was conceived after patients diagnosed with MND commented that they had no written information or support about the disease.

Sarah Ezekiel, one of the patients featured on the website, was diagnosed in April 2000 while pregnant. ‘I felt very isolated and ignorant,’ she says. ‘I hope my experiences and positive attitude will help others dealing with MND.’

Tricia Holmes, Director of Care Development at the MND Association, says: “The DIPEx website enables people living with MND to learn from and share the experience. In answering the questions that matter, feelings of isolation can be overcome and informed decision-making about health and social care can be supported.

‘The site also provides a unique and powerful teaching resource for health and social care professionals. The quality of the research and the site will be an invaluable resource for people living with this devastating condition.’