News & Events
Website shares personal perspectives on living with MND
31 March 2008
A new website featuring personal experiences of carers and people with MND has gone live today.Receiving a diagnosis of motor neurone disease (MND) can be shocking, bewildering and frightening. It is often followed by prolonged uncertainty about how the condition will progress and how quickly.
Now there is a medical website which is designed to help. DIPEx, the award-winning website about people’s personal experiences of health and illness, has launched a new section on MND www.dipex.org/motorneuronedisease
Louise Locock and Carol Dumelow, researchers at DIPEx, travelled all over the country interviewing over 40 people with MND and carers in their own homes.
Talking about the experience Louise 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 help raise awareness about MND and the need for more services, as well as providing support for other people living with MND.”
On the DIPEx site you can watch, listen or read clips from people talking about their experiences of MND. You can also find reliable information about different conditions, links to other resources such as support groups, publications, other websites, and answers to patients frequently asked questions.
Sarah Ezekiel (pictured) is one of the patients featuring on the DIPEx site. Talking about her experience Sarah said: “I was diagnosed with MND in April 2000 whilst pregnant. I wasn't given any written information about the disease or told where to access any. I felt very isolated and ignorant.
“Therefore, I was delighted when DIPEx asked to interview me for their website. I hope that my experiences and positive attitude will help others dealing with MND. I think DIPEx is a very informative website and I'm happy that MND is now featured there.”
Tricia Holmes, Director of Care Development at the MND Association said: “The DIPEx website enables people living with MND to learn from and share the experience of living with the disease.
“In answering the questions that matter feelings of isolation can be overcome, and informed decision making about health and social care can be supported. In addition the site 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.”
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Notes to editors
The MND Association joint-funded this study alongside the NHS Service Delivery and Organisation research programme. The research was carried out by the University of Oxford and formed the content of the site.
