Media

www.YouthHealthTalk.org launches ‘Living life with greater challenges.’

29 October 2007

Young people with chronic or long-term medical conditions can read about, or listen to, other teenagers and young adults who have experienced living with illness at www.youthhealthtalk.org, part of the award winning DIPEx patient website based on Oxford University research.

The new section of YouthHealthTalk, ‘Living life with greater challenges,’ is to be launched on 29 October 2007, and is funded by the Expert Patient’s Programme. It’s a website where young people talk; in video, audio clips, and transcripts, backed up by first class medical information and high quality research carried out by Maria Salinas at the department of primary care at Oxford University.

YouthHealthTalk is part of the DIPEx website, (www.dipex.org), number one on a Google search under patient experiences. It has become one of the UK’s top health resources for young people, health professionals, and those in training, as well as a resource for schools and PHSE. It’s a site where young people can find out what it’s going to be like from others who’ve been there too; much more than their doctor, parents, or friends could ever tell them.

Having a chronic condition can, and does, increase the complexity of young people’s lives. On the new site 31 young people from different social and ethnic backgrounds, all with chronic conditions, diagnosed as children, teens, or as young adults, describe the challenges they face dealing with illnesses including asthma, chronic eczema, chronic pain, congenital heart problems, cystic fibrosis, epilepsy, HIV/AIDS, juvenile arthritis, kidney disease, chronic fatigue syndrome, (CFS/ME), morphea (a skin disease), muscular dystrophy, sickle cell disease, scoliosis, and type 1 diabetes.

Dr Ann McPherson, Medical Director of the DIPEx research group, said: ‘As ‘YouthHealthTalk’ is the direct voice of young people, it provides healthcare professionals with information they will not be able to get elsewhere. It tells them that young people want information about sex, contraception and drugs, they want to know how their medicine might affect alcohol and their weight, and that more must be done by schools and services to help when the going gets tough.’

The issues explored on the site include discussions of symptoms and diagnosis, staying in hospital, information needs, patient-doctor relationship and communication with the healthcare team, physical problems, medication and managing a chronic condition, feelings and emotions, life style, school, university and work, contraception and pregnancy, family support, friends and relationships.

The site has received support from Jon Snow, Jenny Agutter, John Humphreys, Phillip Pullman, Polly Toynbee, Thom York from Radiohead, and Jacqueline Wilson, the Children’s Laureate. Ian McEwan’s praises the YouthHealthTalk initiative ‘Share the burden-take the talking cure,’ and Thom Yorke states ‘YouthHealthTalk is a valuable asset to those who get lost and pulled under. There must be nothing worse than to be ill and alone with no real understanding of your situation. Other people’s stories are the way that we cope.’

The launch on Monday evening at Delfina, London Bridge, includes guest speaker Dr Sheila Shribman (National Clinical Director for Children and Young People), Ann Keen, Parliamentary under-secretary for Health, and young people who have shared their stories for the website.

For more information please contact the Press Office on (01865) 280528, or at press.office@admin.ox.ac.uk.

For more information please contact the Press Office on (01865) 280528, or at press.office@admin.ox.ac.uk.

Notes to editors

 

  • The DIPEx Research Group is based within the Department of Primary Care, University of Oxford, and was set up by Dr Ann McPherson CBE, University Lecturer in General Practice, and Dr Andrew Herxheimer, after their own personal experiences of illness. The website was launched in July 2001 to provide access to personal accounts of health and illness. The site - which receives almost 2 million hits a month - currently has 34 modules, including ones on cancers, heart attack, depression, and leukaemia. Ultimately the group aims to publish 100 collections on its website. Each collection contains analyses of what everyone who was interviewed said was important to them about their condition or illness, illustrated by video, audio and written excerpts chosen from the interviews. DIPEx collections also contain links to evidence-based information about each illness/condition and FAQs and answers, as well as links to other sources of information and patient support groups.
  • As well as being a resource for patients, DIPEx collections are also being used to help medical students and GPs in training look at issues of choice, better consultations, breaking bad news and the impact on the family. Over 3,000 organisations have links to the DIPEx website, including NHS Direct Online, Macmillan Cancer Relief, Cancer Research UK, British Heart Foundation and CancerBACUP.
  • As funding becomes available future sites on www.youthhealthtalk.org will include arthritis, mental health issues, obesity, transition, eating disorders, drugs, alcohol and substance abuse, self harm, young people as carers, sexual abuse, children of parents with serious illness, bullying, parenting (fathers), termination of pregnancy and adoption.
  • March 2007 saw DIPEx rated in the top 5 favourite, trusted sites for patients in The Times. DIPEx was also voted by The Times as one of the top three patient sites in 2006, and received the BMA Patient Information Award (Highly Commended) for the Young People’s Sexual Health Site in 2005.

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