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David Chandler

Co-founder

Psoriatic Arthropathy Alliance

UK

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Who am I, Why am I here?

• Psoriasis for nearly 30 years

• Psoriatic arthritis for more than 25 years

• Co-founder Psoriatic Arthropathy Alliance

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My history

• Psoriasis at 15 – undiagnosed

• Psoriatic Arthritis at 20 - undiagnosed

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Forced to change career

at 36 yrs of age due to ill health

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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

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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.

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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

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The reaction

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

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What happened next?

Julie said…

“ this is ruining our life…

we need to take control of it

and not be controlled by it..”

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What did we do?

• Looked for information

• Wrote letters

• Bought books

• Researched

• Contacted support groups

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What did we find?

Absolutely nothing!

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What do we do next?

• Spoke to our consultant rheumatologist

• Good idea – might help

• Wrote to– Newspapers– Radio stations– Pharmaceutical companies– Professional associations

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What happened?

7th April 1993

Julie was interviewedlive on local radio about our plans

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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”

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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

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“…the grit in the oyster…”

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The Pearl

Psoriatic Arthropathy Alliance

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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

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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

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www.paalliance.org

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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.

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AudienceSpecialists/GPsPractice NursesClinic NursesHealth VisitorsSocial WorkersRheumatologistsSchoolsTeaching HospitalsPharmacistsOrganisationsCommercial/Industry

DermatologistsPatients/SpousesCarersConsumersDentistsOT’s/PhysiotherapistsComplementary SectorMedia toolsLibrariesHairdressers

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Our StructureOur Structure

• Management committee

• Medical Advisory Panel

• Independent Advisors

• Full-time staffed office

• Volunteer Helpers

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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.

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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

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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

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Our publicationsOur publications

•Skin ‘n’ Bones Connection (Oct 1993)

•Information leaflets

•Psoriatic Care Fact File

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Our publicationsOur publications

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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.

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Conference•Patients

•Spouses

•Professionals

•Corporate

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The Patients Perspective

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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

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Un-met needs

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A Cure

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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

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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

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Impact and outcomeImpact and outcome

•The condition also affects

- carers

- spouses

- other family members

- shared feelings

- shared load

- isolation from those you love

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Team work

Patient

Research

Industry

Medics

Patient support network

?

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In conclusionIn conclusion

Patient Partnership

IT’S A TWO-WAY STREET!