LUpus Patients Understanding & Support (LUPUS): Aims

Aims of the LUpus Patients Understanding & Support ( LUPUS) Websites

LUpus Patients Understanding & Support ( LUPUS) is a non-profit organisation providing free information and free psychological support for individuals-affected-by-systemic lupus erythematosus, lupus variant conditions and the antiphospholipid antibody (Hughes') syndrome. LUpus Patients Understanding & Support (LUPUS) offer free information and free online psychological support to patients, carers, families and health care professionals including doctors, nurses, physiotherapists, occupational therapists and to other lupus organisations.

In 1998, this website, formerly called the St Thomas' Lupus Trust website, was established with the support of Dr Graham RV Hughes MD FRCP, Head of the Lupus Unit at St Thomas' Hospital, London, with the intention of promoting these aims:

(i) to FREELY provide up to date, medical information for patients with systemic lupus, lupus variant conditions and Hughes' (APS) Syndrome. The LUpus Patients Understanding & Support (LUPUS)websites maintain that knowledge and information about disease, illness and their treatments, should be freely accessible at: LUpus Patients Understanding & Support (LUPUS);

(ii) to promote the work of the Lupus Unit at St Thomas' Hospital, along with other centres of excellence in the clinical treatment and research of SLE in the UK. Professor Graham RV Hughes is now at the London Bridge Hospital, the first private Lupus Clinic in Europe.

(iii) to FREELY provide online psychological support (through emails and the LuPUS Message Board with the future provision of a professional counselling service for patients: The Lupus Counselling Service.

(iv) LUpus Patients Understanding & Support (LUPUS) subscribes to the medical principles set out by the Health on the Net Code of Conduct as well as ethical guidelines from the International Society for Mental Health Online (ISMHO), the guidelines for online therapy from the British Association for Counselling and Psychotherapy (BACP).

As an Individual Member of BACP I am bound by the Ethical Framework for Good Practice in Counselling and Psychotherapy and subject to the Professional Conduct Procedure therein.

As a registrant (retired) and Member of the FiP (Member Organisation within the UKCP) with the UKCP, I am bound their Code of Ethics set out by the United Kingdom Council for Psychotherapy.

(v) LUpus Patients Understanding & Support (LUPUS) receives no external funding nor does it advertise any products or services. We may recommend articles, books or journals, which may be helpful to those affected by lupus or who wish to find out about lupus, such as carers or health care professionals, but we do not receive any financial remuneration. We rely solely on donations. LUpus Patients Understanding & Support (LUPUS) make no endorsements of any products or services.

(vi) LUpus Patients Understanding & Support (LUPUS) includes the LuPUS Message Board, providing a free online psychological support, which requires registration. The LuPUS Message Board will remain a free service. However, we allow members to donate monies to a fund to ensure this service can continue. Indeed, without donations, we could not continue our work. Neither myself nor the Moderators of the LuPUS MB receive any salary for providing the services offered. In addition, as Director of LUpus Patients Understanding & Support (LUPUS), I do not have any connection with this fund or have any knowledge of the donations. Donations are handled by our Financial Director, who is able to make available the accounts showing monies donated and used for maintaining these websites. Any monies used require the signatures of two of the Moderators, who are independent of me. Further information can be found at the LuPUS Message Board by contacting one of the Moderators for further information.

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