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Psoriatic Care Fact File: Empowering Individuals with Psoriatic Arthritis and Psoriasis

Learn about the journey of David Chandler, co-founder of the Psoriatic Arthropathy Alliance UK, and his mission to raise awareness and provide support for those living with psoriatic arthritis and psoriasis. Discover the challenges faced, the importance of early diagnosis, and how the Psoriatic Arthropathy Alliance is making a difference. Join the patient partnership and take control of your condition with valuable information and resources.

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Psoriatic Care Fact File: Empowering Individuals with Psoriatic Arthritis and Psoriasis

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  1. David Chandler Co-founder Psoriatic Arthropathy Alliance UK

  2. Who am I, Why am I here? • Psoriasis for nearly 30 years • Psoriatic arthritis for more than 25 years • Co-founder Psoriatic Arthropathy Alliance

  3. My history • Psoriasis at 15 – undiagnosed • Psoriatic Arthritis at 20 - undiagnosed

  4. Forced to change career at 36 yrs of age due to ill health

  5. Under General Practitioner’s Care 15 yrs old Scalp condition Joint pain Re-occurring 20 yrs old Intermittent joint pain Ongoing treatment Weak skeletal shell 25 yrs old Psoriasis? Joints worse Treatment not working Joints deteriorating 30 yrs old Dermatologist Rheumatologist

  6. The Dermatologist’s diagnosis Q … how is your arthritis? A … what arthritis? Q … you do know you have psoriatic arthritis, don’t you? A … No. Q … it’s a classic case. I’ll refer you to a Rheumatologist.

  7. The referral A Classic case of psoriatic arthritis Q..What is it? A..Milder version of RA Q..What will happen? A..I Can’t tell you as can be unpredictable… …You could be in a wheel chair by 40 yrs old

  8. The reaction • Despaired for 2 years • Got depressed • Got angry • Decided it wasn’t good enough • Needed to know more

  9. What happened next? Julie said… “ this is ruining our life… we need to take control of it and not be controlled by it..”

  10. What did we do? • Looked for information • Wrote letters • Bought books • Researched • Contacted support groups

  11. What did we find? Absolutely nothing!

  12. What do we do next? • Spoke to our consultant rheumatologist • Good idea – might help • Wrote to • Newspapers • Radio stations • Pharmaceutical companies • Professional associations

  13. What happened? 7th April 1993 Julie was interviewedlive on local radio about our plans

  14. Then what happened? • The telephone rang and rang and continued to ring Typical response “ I thought I was the only person with psoriatic arthritis. I now, don’t feel like a fraud”

  15. The PAA was born • No experience • Based on instinct • Personal views and needs • What did we need to know • What do carers or spouses need to know • Basic questions

  16. “…the grit in the oyster…”

  17. Psoriatic Arthropathy Alliance The Pearl

  18. Who are we? The Psoriatic Arthropathy Allianceis a national registered charity dedicated to raisingawareness and helping people with psoriasis and psoriatic arthritis

  19. Our history • Founded by David and Julie Chandler in 1993 • Gained Charity status in 1995 • Launched as a charity in 1996 • Launched own internet page 1996 • Held annual conference every year since 1995 • Launched Psoriatic Care Fact File 1998 • Launched European initiative InterPSO 2001 • 10th Anniversary 2003

  20. www.paalliance.org

  21. The thrust of the PAA • To make a difference for those most in need • efficiently and resourcefully • Using our acquired knowledge in ways that gives maximum benefit.

  22. Audience Specialists/GPs Practice NursesClinic NursesHealth VisitorsSocial WorkersRheumatologistsSchoolsTeaching HospitalsPharmacistsOrganisationsCommercial/Industry DermatologistsPatients/SpousesCarersConsumersDentistsOT’s/PhysiotherapistsComplementary SectorMedia toolsLibrariesHairdressers

  23. Our Structure • Management committee • Medical Advisory Panel • Independent Advisors • Full-time staffed office • Volunteer Helpers

  24. How we operate A low-profile highly motivated organisation, which has established a great deal of respect from those, involved in the care of people with psoriatic arthritis and psoriasis.

  25. What do we do? • Raise awareness • Offer support and information • Campaign for earlier/correct diagnosis • Hold a conference annually • Produce publications

  26. What help do we provide? • Information/Help-line • Contact list - telephone & penpal • E-mail discussion group • Local contact groups • Patient Focus Groups

  27. Our publications • Skin ‘n’ Bones Connection (Oct 1993) • Information leaflets • Psoriatic Care Fact File

  28. Our publications

  29. Psoriatic Care Fact File • 26 photocopyable fact sheets • Designed to aid secondary care patients • Officially launched in London1998 • Every Dermatologist and Rheumatologist in UK sent a copy • Updates already underway.

  30. Conference • Patients • Spouses • Professionals • Corporate

  31. The Patients Perspective

  32. Impact of a chronic disease • Relentless • 365 days-a-year • Also affects partners and carers • Personal financial cost • - loss of earnings • - medication/prescriptions • - job discrimination

  33. Un-met needs

  34. A Cure

  35. Outcomes patient’s want • Seamless service between therapeutic areas • Treated as a person and not a medical condition • Accessible treatment options • Full explanation of the long-term affects • - Potential disability • - Side-effects of medication etc. • - Questions answered

  36. Desired outcome results • Tailored treatment to fit with lifestyle • - treatments may not be convenient • Active part in the conditions management • - joint decisions • Agreed treatment plan • - with all options discussed

  37. Impact and outcome • The condition also affects • - carers • - spouses • - other family members • - shared feelings • - shared load • - isolation from those you love

  38. ? Team work Medics Patient support network Patient Industry Research

  39. In conclusion Patient Partnership IT’S A TWO-WAY STREET!

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