The founders of Arthur’s Place, a social network and website for young adults with arthritis, are involved in a research project that is hoping to find out if it would be possible to bring teenagers and young adults with various long-term conditions together into one, online space, to provide information, support and connections during the period of transition from paediatric to adult services.

The project takes the form of an online survey, with 10 questions which should take between five and 10 minutes to complete. Your survey answers will be anonymous, so that nobody will be able to identify you from what you say. You can fill in as many or as few answers as you like before clicking submit at the end of the survey too. There are two surveys: one for young people, and one for parents and carers.

Young people

If you are aged 13 to 25, and have been diagnosed with one or more of the following long-term conditions:

  • Diabetes
  • Inflammatory bowel disease (e.g. Crohn’s disease and ulcerative colitis);
  • Rheumatic and musculoskeletal diseases (e.g. arthritis and lupus);

Please consider taking part – your opinion really matters! Click the following link to take part: https://www.surveymonkey.co.uk/r/2CZF2WF

Parents and carers

If you are the parent or carer of a young person with a long-term condition, the team would be very grateful if you could complete the survey for parents and also pass on the young person’s survey link to your child, or complete it with them: https://www.surveymonkey.co.uk/r/2JHGS2J

Please feel free to share this post with other young people and families in your network!

 

Written by simonrstones

Simon R. Stones BSc (Hons) is an award-winning patient advocate, consultant and researcher from Manchester in the UK, who was the winner of the international WEGO Health Award for Patient Healthcare Collaborator in 2017. He is a passionate advocate and ambassador for people living with invisible illnesses, inspired and empowered by his own journey with juvenile arthritis, fibromyalgia, and inflammatory bowel disease since childhood. He is currently an Associate Fellow of the Royal Commonwealth Society, a trustee of Fibromyalgia Action UK and RAiISE, and board member of the European Network for Children with Arthritis (ENCA) and the European Network of Fibromyalgia Associations (ENFA).

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