Impact

At RAiISE, it’s important that our work is actually making a difference. All of our work is directly led by the young people we work with.

From the design of our logo to the content of our information pack. As our work continues, we want to measure the impact of the work we are doing, as well as continually look at the overall state of invisible illnesses in the UK.

Publications

Please find links to any published RAiISE collaborations.

Ainsworth S. (2021). Hidden illness: one patient’s story. Archives of Disease in Childhood 106:617–618. Available from: https://dx.doi.org/10.1136/archdischild-2019-318568

Ainsworth, S., Ainsworth, J., Challinor, R., Preston, J., Clapham, M., Whitty, L., & Stones, S. (2020). 9: RAiISE: advocating for young people with invisible illnesses. In Embedding Young People’s Participation in Health Services, Bristol, UK: Bristol University Press. Available from: https://doi.org/10.51952/9781447351214.ch009

Stones, S.R., Ainsworth, S., Ainsworth, J.S., Preston, J., Challinor, R. & Rowe, M. (2019). Identifying items for consideration under the remit of the National Institute for Health and Care Excellence (NICE) guideline on social and emotional wellbeing in primary and secondary education. Online poster presentation at: NICE Guideline Stakeholder Workshop for Social and Emotional Wellbeing in Primary and Secondary Education, 26 March 2019, London, England, United Kingdom. Available from: https://doi.org/10.13140/RG.2.2.21966.31044

Ainsworth S. (2018). SP0038 Raiising awareness of invisible illnesses in schools and education. Annals of the Rheumatic Diseases 77:10. Available from: https://dx.doi.org/10.1136/annrheumdis-2018-eular.7794

Ainsworth, J.S., Ainsworth, S., Challinor, R., Rowe, M., Preston, J. & Stones, S.R. (2018). Things get solved when you become involved: A case study of RAiISE, a young person and family-led research initiative to improve education support for young people with chronic conditions. Poster presentation at: 14th Annual UK Clinical Research Facilities Network Conference, 12–13 July 2018, Leeds, England, United Kingdom. Available from: https://doi.org/10.13140/RG.2.2.28269.69608

Ainsworth, S., Ainsworth, J., Preston, J., Stones, S., Challinor, R. & Rowe, M. (2017). P113 Introducing RAiISE – raising awareness of invisible illnesses in schools and education. Pediatric Rheumatology 15(Suppl 2): P113. Available from: https://doi.org/10.1186/s12969-017-0185-x

Preston, J., Ainsworth, S., Challinor, R. & Stones, S.R. (2017). RAiISE: Raising awareness of invisible illnesses in schools and education. Poster presentation at: 3rd International Children’s Advisory Network Research and Advocacy Summit, 10–14 July 2017, Orlando, FL, United States of America. Available from: https://doi.org/10.13140/RG.2.2.11713.04964

External Media

Please find links to external media coverage and contributions

CICRA. (2023). Useful links for help with school and college. Available from: https://www.cicra.org/how-we-can-help/schools-and-colleges/education-useful-links/

Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard. (2022). Advancing international pediatric clinical research time to listen: Hearing from young people in clinical research. Available from: https://mrctcenter.org/wp-content/uploads/2022/02/MRCT-CENTER-R13.2-Biobook.pdf

The LUNA Project. (2022). Links to other organisations. Available from: https://www.thelunaproject.org.uk/from-me-and-my-friends-resources

NIHR Manchester Biomedical Research Centre. (2021). Juvenile idiopathic arthritis and the world of work – Dr Janet McDonagh speaks to Arthritis Digest. Available from: https://www.manchesterbrc.nihr.ac.uk/news-and-events/juvenile-idiopathic-arthritis-and-work-dr-janet-mcdonagh-arthritis-digest/

Bristol University Press Digital. (2020). 9: RAiISE: advocating for young people with invisible illnesses. Available from: https://bristoluniversitypressdigital.com/display/book/9781447351214/ch009.xml

CCAA. (2020). Coronavirus support and resources. Available from: https://www.ccaa.org.uk/coronavirus-support-resources/

Dr Simon R Stones. (2020). Chronic illness, young people, and COVID-19. Available from: https://simonstones.com/2020/06/29/chronic-illness-young-people-and-covid-19/

Your Rheum. (2020). Additional resources. Available from: https://yourrheum.org/additional-resources/

GenerationR. (2019). Members of YPAG KSS speak at INVOLVE children and young people’s showcasing event. Available from: https://generationr.org.uk/members-of-ypag-kss-speak-at-involve-children-and-young-peoples-showcasing-event/

Durham University. (2018). Student health campaigner honoured by Prime Minister. Available from: https://www.dur.ac.uk/news/newsitem/?itemno=35953

Fixers. (2018). Sophie Ainsworth. Available from: https://www.fixers.org.uk/fixers/17743-11312/sophie-ainsworth.php

GenerationR. (2018). A parent’s view of attending the International Children’s Advisory Network (iCAN) Summit – Edinburgh 2018. Available from: https://generationr.org.uk/a-parents-view-of-attending-the-international-childrens-advisory-network-ican-summit-edinburgh-2018/

Nesta. (2018). New Radicals 2018 – Sophie Ainsworth. Available from: https://www.nesta.org.uk/feature/new-radicals-2018/sophie-ainsworth/

Prime Minister’s Office 10 Downing Street – Points of Light. (2018). Raising awareness of invisible illnesses in schools and education – 1014. Sophie Ainsworth. Available from: https://www.pointsoflight.gov.uk/raising-awareness-of-invisible-illnesses-in-schools-and-education/

The Northern Echo. (2018). Lupus campaigner honoured by Prime Minister for work. Available from: https://www.thenorthernecho.co.uk/news/local/northdurham/16984693.lupus-campaigner-honoured-prime-minister-work/

We Are The City. (2018). Sophie Ainsworth | RAiISE (Raising Awareness of invisible Illnesses in Schools and Education). Available from: https://wearethecity-risingstars.com/sophie-ainsworth-raiise-raising-awareness-of-invisible-illnesses-in-schools-and-education/

Alder Hey Children’s NHS Foundation Trust. (2017). Trio of research and innovation awards for Alder Hey. Available from: https://alderhey.nhs.uk/contact-us/press-office/latest-news/trio-research-and-innovation-awards-alder-hey

European Patients’ Forum. (2017). EPF Youth Group: New members, new ideas! https://www.eu-patient.eu/news/latest-epf-news/2017/epf-youth-group-new-members-new-ideas/

GenerationR. (2016). Young person led project – Living with an invisible illness. Available from: https://generationr.org.uk/young-person-led-project-living-with-an-invisible-illness/

GenerationR. (2016). Living with an invisible illness – Part 2. Available from: https://generationr.org.uk/living-with-an-invisible-illness-part-2/

GenerationR. (2016). Living with an invisible illness – Part 3. Available from: https://generationr.org.uk/living-with-an-invisible-illness-part-3/

GenerationR. (2016). Living with an invisible illness – Part 4. Available from: https://generationr.org.uk/living-with-an-invisible-illness-part-4/

GenerationR. (2017). Living with an invisible illness – Part 5. Available from: https://generationr.org.uk/living-with-an-invisible-illness-part-5/

Lancashire Telegraph. (2017). Teen battles chronic illness to achieve top grades. Available from: https://www.lancashiretelegraph.co.uk/news/15481822.teen-battles-chronic-illness-achieve-top-grades/

Nelson & Colne College. (2017). Sophie’s stellar A Level results land her coveted place at Durham. Available from: https://www.nelson.ac.uk/latest-news/sophies-stellar-level-results-land-coveted-place-durham/

NIHR Applied Research Collaboration ARC NWC. (2017). North West Coast Research and Innovation Awards 2017. Available from: https://www.youtube.com/watch?v=n1Nrz0D-6fU

Alder Hey Children’s NHS Foundation Trust. (2016). Lupus and you: Workshop for young people with lupus and their families. Available from: https://www.lupusuk.org.uk/wp-content/uploads/2015/08/Lupus-and-You-Report-Shortened-sept-2016-final.pdf