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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
Scalp condition15 yrs oldJoint pain
20 yrs old Re-occurring
25 yrs old
Ongoing treatment
Intermittent joint pain
Weak skeletal shell
Psoriasis?Joints worse
30 yrs old
Treatment not working
Dermatologist
Joints deteriorating
Rheumatologist
Under General Practitioner’s Care
6
The Dermatologist’s diagnosisQ … 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
The Pearl
Psoriatic Arthropathy Alliance
18
Who are we?Who are we?
The Psoriatic Arthropathy Allianceis a national registered charity
dedicated to raisingawareness and helping people
with psoriasis and psoriatic arthritis
19
Our historyOur 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 PAAThe 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
AudienceSpecialists/GPsPractice NursesClinic NursesHealth VisitorsSocial WorkersRheumatologistsSchoolsTeaching HospitalsPharmacistsOrganisationsCommercial/Industry
DermatologistsPatients/SpousesCarersConsumersDentistsOT’s/PhysiotherapistsComplementary SectorMedia toolsLibrariesHairdressers
23
Our StructureOur Structure
• Management committee
• Medical Advisory Panel
• Independent Advisors
• Full-time staffed office
• Volunteer Helpers
24
How we operateHow 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?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?What help do we provide?
• Information/Help-line
• Contact list - telephone & penpal
• E-mail discussion group
• Local contact groups
• Patient Focus Groups
27
Our publicationsOur publications
•Skin ‘n’ Bones Connection (Oct 1993)
•Information leaflets
•Psoriatic Care Fact File
28
Our publicationsOur publications
29
Psoriatic Care Fact FilePsoriatic 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 diseaseImpact 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 wantOutcomes 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 resultsDesired 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 outcomeImpact and outcome
•The condition also affects
- carers
- spouses
- other family members
- shared feelings
- shared load
- isolation from those you love
38
Team work
Patient
Research
Industry
Medics
Patient support network
?
39
In conclusionIn conclusion
Patient Partnership
IT’S A TWO-WAY STREET!