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. In 2000, this website changed its name to LUpus Patients Understanding & Support (LUPUS). We are independent from the STLT. We are a non-profit organisation and a Member of the National Council of Voluntary Organisations. LUpus Patients Understanding & Support (LUPUS) promote the following 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 theirLUpus Patients Understanding & Support (LUPUS) treatments, should be freely accessible at: LUpus Patients Understanding & Support (LUPUS). All information is properly souced and dated, so that the reader will know where the information has come from, the author, whether a health professional or not and dated. The information provided either at http://www.lupus-support.org.uk or http://www.lupus-forums.org.uk (this website points to our new server at http://www.lupus-support.org) is designed to complement, not replace, the relationship between a patient and his/her own physician. We also state that any user should be over the age of 18 years. Those under 18 years should always refer to a parent or caregiver for advice;

(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. We are unique in offering online psychological support with an attending qualified psychotherapist and counsellor.

(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 a UKCP registrant (retired) and a current Full Member of the FiP, a Member Organisation of 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. Sometimes, a product may be offered to you by a vendour which you may find helpful. When this occurs, there is a statement explaining what is being offered and whether any donations will be given to LUpus Patients Understanding & Support (LUPUS) including the LuPUS Message Board.

(vi) LUpus Patients Understanding & Support (LUPUS) includes the LuPUS Message Board, providing a free online psychological support, which requires registration. The LuPUS Message Board is located on a separate website. 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.

(vii) LUpus Patients Understanding & Support (LUPUS) including the LuPUS Message Board take your privacy and confidentiality seriously. When you register at http://www.lupus-support.org.uk your details are used so we can reply giving you information. Your email details are then deleted and not stored. When you register at the LuPUS Message Board, your details are stored on the server's database which can only be accessed by the webmaster. While every care is taken to ensure our website is safe, the internet is such that it is impossible to guarantee there will be no security breaches. We do not use cookies to track your behaviour. No information is given to third parties. In terms of the LuPUS Message, we do not allow bots or search engines entering private forums. This is to ensure that the LuPUS Message Board is a safe-enough place to talk. We advise you, however, to adopt a display name so you cannot be identified. Further information can be found by reading the Terms & Conditions and Privacy Statement for the LuPUS MB. By clicking on the LuPUS MB, a new window will open which will take you away from this website, to the LuPUS MB.

You are welcome to email with comments and suggestions or email me for help here: Webmaster

Rosalind M. Share MA(Ed),MA(Psych),AdDip(Psych),MIAPP
Director
LUpus Patients Understanding & Support (LUPUS)


Updated 30 December, 2010

© Copyright RMS 2010

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