Under the auspices of the International Myeloma Foundation and The Royal Marsden Hospital Myeloma Unit, a group of 123 patients, carers and Health care workers met at the Royal College of Physicians in London on the 17th of June 2003 to discuss the place of Hope and Trust in the modern management of patients with Myeloma. Prof Ray Powles (Royal Marsden Hospital, UK) said that "this was the first time such a meeting was held and it was designed as a research orientated interactive recording session to see if we could find whether Hope and Trust is important to patients, if so, what influences it and how might we optimize it in the future." Prof. Ray Powles and Ms. Susie Novis (President, IMF) acted as facilitators for a patient-driven meeting with active input from all present.

The format of the meeting started with a morning session dedicated to the current state of the art treatment options and was opened with Dr. Bob Kyle (Mayo Clinic Rochester, USA) talking about the success of induction treatments followed by Dr. Philippe Moreau (Service d'Hèmatologie, Nantes, France) giving an updated account of high-dose treatment which now puts up to 50% of patients into complete remission. Prof Brian Durie (Cedars-Sinai, USA) then spoke about bone disease and the importance of remineralisation of bones followed by a broad outline of the state of new treatments given by Dr. Bhawna Sirohi (Royal Marsden Hospital, UK), with a short exciting review of the 9th International Myeloma Workshop presentations on Velcade and Revimid.

The afternoon session then coned down on the Hope and Trust issues starting with Prof Ray Tallis (Geriatric medicine, Manchester) giving a talk on the nature of Trust in Medicine followed by Dr. Mike Shooter (President of the Royal College of Psychiatrists) talking in general terms on Hope.

Then, followed the interactive session run by Prof Ray Powles which started with the responses defining the individuals in the audience i.e. patients, carers etc. answering a series of questions that told us about their demography for example, 64 were patients, 28 spouses, 5 caregivers and 6 friends; 55% of the patients were >50 years of age and 34% had been diagnosed at least 5 years ago; 41% patients had relapsed disease. Hence, this demography meant that we had a nice spectrum of different aspects of this disease which we could relate in an interactive session to the degree of Hope and Trust present. We asked a total of 52 questions relating to the influence of healthcare workers, the environment and the treatment and its responses, in altering Hope and Trust, and we plan to post these questions on the IMF website. In no instance was the response to a question unanimous and unambiguous in its answer and thus the immediate take home message of the meeting was that it is impossible to proscribe recommendations for all patients that will not always be inappropriate to a minority. For example, we asked patients that had entered a trial and were randomized between treatment options - "did this erode your Hope and Trust" and 9% said yes. Concerning the doctor, 87% felt that if the doctor was upbeat and positive , this would increase Trust. Another intriguing observation was that in the UK, we found only 2% of patients recorded their consultation with doctors in contrast to the US where about 50% patients would record the interview.

One of the patients said that "perversely and with hind-sight I would not have wanted to know how arduous the journey to control my Myeloma might be" and he took enormous strength from being told by his doctor "don't give up your job, I will return you to work." Another of the patients who is a 47 year old Professor of Medicine in Oxford said "when I was diagnosed I did not go anywhere near the textbooks for about 6 months, complete trust was a replacement for knowledge, you have also given me hope for the future in enormous quantities, I also agree that Hope is bolstered by Trust."

Also, another patient felt that being on first name terms with the doctor "aids in the beneficial rapport between the medical team and the patients; it inspires an openness which may be difficult with a more formal approach so that, feeling more at ease, essential trust is engendered." However, only 40% said that being on first name terms increases Hope and Trust, the rest said it made no difference. Over 97% of those present said that Trust and Hope increase their sense of well-being, allows them to get on with their lives and improves their relationship with those close to them.

The meeting was summarized and closed by Prof Carol Black (President of the Royal College of Physicians).

In conclusion, over 95% of the people attending the meeting found the day useful and would attend similar meeting in the future and felt that Hope and Trust are areas of research and practice that should in the future be shaped by patients.