What are the benefits of patients’ groups? What difference does it make to you personally, in your daily consultations, to have a well-informed or empowered patient?

I think these patients tend to be more involved in their ongoing care. They come to the consultation with information and it makes the consultation flow much easier. They know what they want out of their management, they know what they want for their long-term care. It just makes the consultation easier when you need to discuss the diagnosis, the prognosis, etc.

Are there any drawbacks to having a patient who is “over-informed”?

It always good for patients to be informed. But we sometimes encounter difficulties when a patient becomes disappointed when a new drug, for example, is not available to them in their centre. With MDS there are new drugs coming out, most of them available in clinical trial studies only. So, if a study is not available at their centre or somewhere that is easily accessible, it’s disappointing for the patient. That’s one difficulty.

One topic that comes up very often in our patients’ calls is second, or what we call 'additional', opinions. What are your views on patients who request an additional opinion? Does it offend you if a patient asks for an additional opinion when he is seen by you?

One of the reasons that I went into haematology is that we work as a team - there is no individualised treatment, the treatment is all evidence based and we work as a team managing our patients. I welcome a second opinion, it’s always good to have fresh eyes, bringing a new perspective on how to manage a patient. It involves someone else’s expertise.

What is the difference for patients between being discussed in an MDT¹ and going for an additional opinion somewhere else, as you have just explained?

An MDT involves decision making within a local team, or a local network in some situations. So obviously that will take into account the local guidelines, which are evidence based, but it will be tailored to that local environment. It looks at the local resources available and the local expertise as well - so the clinical experience within that centre. A second opinion will be outside of that local setting, taking into account someone else’s experience and expertise, and probably it would have a perspective based on a lot more information and more resources.

¹ A Multidisciplinary Team (MDT) is a group of health care workers and social care professionals who are experts in different areas with different professional backgrounds, united as a team for planning and implementing treatment programs for complex medical conditions.