The origins of PAPAA

The PAA was founded by David and Julie Chandler in 1993, as an organisation specifically for people with psoriatic arthritis. David, who has both psoriasis and psoriatic arthritis, was forced to retire from commercial business at the age of 36 through ill-health caused by the conditions.

David and Julie soon discovered that the amount of information and knowledge regarding the disease was minimal, and it was Julie, David’s wife, who decided that she could best help David by forming an active group of fellow sufferers to provide much-needed help and support to her husband and also those in a similar situation.

The PAA, although primarily set up for psoriatic arthropathy, moved into psoriasis as a consequence of demand by its members. It quickly became well established and respected amongst the medical profession and patients.

The PAA was supported by a team of unpaid volunteers, to help people with psoriasis and psoriatic arthritis. The team included clinical specialists from the fields of dermatology, rheumatology, immunology, physiotherapy, nursing, scientific and pharmaceutical experts, together with input from the world of business and public relations.

Its main activity was an education and information programme, which included the Skin ‘n’ Bones Connection journal, Psoriatic Care Fact File, various information leaflets and booklets. Eleven national and two regional conferences were held over a ten-year period, with internationally recognized speakers providing educational talks to both those with psoriasis and psoriatic arthritis and the healthcare providers who support them. 

The Psoriasis Support Trust (PST)

The PST was set up in March 2001 by Charles Peel to assist people with psoriasis. Since that time, with the assistance of medical advice, the trustees reviewed the various treatments available to people with psoriasis. The trustees decided to concentrate on the effects of stress on psoriasis and how one can deal with the psychological effects the condition has on individuals. The Trust supported via a grant the development work of a team, headed by Prof Christopher Griffiths, at the Department of Medicine (Dermatology) at Hope Hospital, University of Manchester. This work led to the development of a programme that assists people with psoriasis to deal with their condition in a more effective and positive manner. In addition, the Trust also provided the Psoriatic Arthropathy Alliance (PAA) with some financial assistance to consolidate its work with patients.

The Psoriasis and Psoriatic Arthritis Alliance (PAPAA)

David and Julie Chandler article April 1993

PAA & PST merged into PAPAA

The essence and thrust of both original charities continues within PAPAA and is a combination of the strengths and activities that have been the success stories for both charities.

PAPAA knows only too well the day-to-day struggles of living with a long-term medical condition and problems that are faced by people with psoriasis and psoriatic arthritis, and as an organisation is working to keep the patient-centred voice alive.

This continuity and link offers the focus and understanding that is needed in order to provide services that patients in the 21st century need, whether information, a listening ear or a disease management programme. PAPAA aims to provide traditional patient support as well as new innovative approaches that a changing healthcare environment requires.

• PAPAA is advised and supported by interested individuals from all areas of the medical profession.
• PAPAA provides educational support to those affected by psoriasis and psoriatic arthritis.
• PAPAA supports the medical profession by providing access to up-to-date patient literature and management programmes which are evidence based and backed by research. Good science is the key to providing support to people with psoriasis and psoriatic arthritis.

Achievements

PAPAA has become a widely respected organisation both in the UK and internationally. The expansion of the education and training material has included an increase in patient information, which is circulated widely free of charge. An online accredited professional training programme called Psoriasis In Practice has been accessed by numerous HCPs. 

We have funded and supported niche research projects and continue to promote and report the outcomes of projects that are relevant to people with psoriasis and psoriatic arthritis. 

PAPAA prides itself on being a patient-centred organisation, which provides positive solutions and support to people with and affected by psoriasis and psoriatic arthritis.