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Introductions Experience as a Patient / Service User LTC for over 30 years Family Diagnosis

Introductions Experience as a Patient / Service User LTC for over 30 years Family Diagnosis Why I got involved Benefit future patients and service development Many other benefactors, not just Leeds University Life Changing – helped me to work closer with my health professional team.

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Introductions Experience as a Patient / Service User LTC for over 30 years Family Diagnosis

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  1. Introductions • Experience as a Patient / Service User • LTC for over 30 years • Family Diagnosis • Why I got involved • Benefit future patients and service development • Many other benefactors, not just Leeds University • Life Changing – helped me to work closer with my health professional team.

  2. Voluntary Sector • AC & CwC • Zurich • EULAR – academic posters • Trustee of Local Groups • User Representation on National Committees • CSG, H&S, NASS • Bradford Uni • Module Delivery – Living with Pain • Student interviews

  3. Leeds University • Home Visits • Conferences: Vancouver – Cambridge • Co production – sharing ideas of how to live with long term condition – designs and gadgets etc. leading to a form of knowledge transfer. • Tele-care – Research Project input • Leading Transformation - Service User involvement meeting not forgetting patients need to know about NHS too. • Patient Mentor • Class room facilitation • Advise and guidance • Reports • Individual sessions

  4. Future Plans and Aspirations • Greater involvement through the university – design / industry – knowledge transfer • Leading to Better relationships with Health Professionals – changing over time • Two way process - learning on both sides. • greater control of LTC • Joint decision making on treatment • Putting something back

  5. Making a real difference in Health Care Thank you

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