Paola Kruger The role of a patient expert haloperidol 5 mg in a medical team – The BMJ

The journey into patient advocacy usually starts with a diagnosis; in my case of multiple sclerosis. After this, each of us reacts in different ways. For me, the curiosity and need to know more about the new haloperidol 5 mg world that suddenly opened in front of me took me haloperidol 5 mg on a path of education and training, starting with undergoing the EUPATI course (european patient’s academy on therapeutic intervention) which made me realize the importance of patient involvement in haloperidol 5 mg the research and development of medicines. But along with pursuing my interest in research I have haloperidol 5 mg had the opportunity to work in and support the multiple haloperidol 5 mg sclerosis centre of the san camillo hospital in rome.

This has given me the opportunity to work side by haloperidol 5 mg side with doctors and nurses in my role as a haloperidol 5 mg patient expert attached to the unit. It has taken time and it has sometimes been a haloperidol 5 mg difficult role to take because although the medical staff acknowledged haloperidol 5 mg the benefits of having a patient expert as part of haloperidol 5 mg the team, establishing the boundaries of this innovative position and building trust haloperidol 5 mg has not been easy.

Firstly, let me make it clear that it’s not a patient expert’s job to be a substitute health professional: we each have our own area of expertise and they haloperidol 5 mg complement each other. A patient expert in the clinical centre I work in haloperidol 5 mg has two main roles: to support patients to adhere to their treatment and give haloperidol 5 mg them reliable information on living as well as they can haloperidol 5 mg with their disease. Providing face-to-face interaction with someone living with the same condition is haloperidol 5 mg something that most patients value highly. The added value (in my case) of having a solid scientific background is that I can haloperidol 5 mg explain the details and reassure patients that the medicine they haloperidol 5 mg are taking has gone through rigorous testing and care has haloperidol 5 mg been taken to reduce side effects to a minimum. Patients often need to be reassured about the small details, because everything is new for them and the doctors’ busy schedule doesn’t always allow them to adjust to requests for more haloperidol 5 mg information, or longer time to understand and take up new routines.

I am the first patient expert officially recognised by the haloperidol 5 mg director general of my hospital, which makes it particularly hard to establish a set path. Everything is new and we have to negotiate different views haloperidol 5 mg and habits. However, our aim is to disseminate this concept among the hospital’s chronic disease units so they might follow our example. There is much value in having trained patients and healthcare haloperidol 5 mg professionals collaborating together. So far no other patient expert has been officially involved haloperidol 5 mg in the hospital’s activities as a single expert with specific training, just patient organisations providing general information and support in a haloperidol 5 mg more traditional role.

Working hours vary from week to week and it is haloperidol 5 mg all voluntary work, but it is a great learning experience and, above all, I feel that I am opening up new opportunities for haloperidol 5 mg patients and I feel very motivated. I have always believed that if you want to change haloperidol 5 mg something you have to be the first one to give haloperidol 5 mg the good example.

I don’t support patients in shared decision making as it is haloperidol 5 mg too close to the doctors’ job and I prefer to avoid any possible hint of haloperidol 5 mg interference, however, what I do is to try to explain to patients haloperidol 5 mg how important it is to take responsibility for your own haloperidol 5 mg care and not leave everything in the doctor’s hands. I can also reassure them if they are scared about haloperidol 5 mg coping with side effects of treatment, but only if they ask me. I follow the principle that it must be a patient’s choice to want to speak to me rather than haloperidol 5 mg proactively looking for them and offering help. Patients need to adjust in their own time. F or doctors, and nurses, it means less time spent on answering questions that are haloperidol 5 mg not strictly medical, but more about patients adapting to a new way of haloperidol 5 mg life.

Patient experts in the clinical centre can also support research haloperidol 5 mg activities: for example by being available on recruiting days to give haloperidol 5 mg patients the opportunity to discuss their fears about taking part haloperidol 5 mg in a clinical trial (it is easier to open up with a fellow patient), help them to understand the intricacies and importance of informed haloperidol 5 mg consent, explain in patient friendly terms the different stages of the haloperidol 5 mg trial, and the requirements put on trial participants, such as the commitment to long term follow-up. Most patients are not told about the statistical value of haloperidol 5 mg their individual commitment to a trial and many drop out haloperidol 5 mg thinking ( incorrectly) that someone else can replace them.

What I really like about my role is to see haloperidol 5 mg how my help can support other patients and make coping haloperidol 5 mg with illness more bearable. To hear them say how my support has been crucial haloperidol 5 mg in some very negative moments makes all my efforts worthwhile. Sometimes the doctor I work with warns me about patients haloperidol 5 mg becoming very demanding, but I tell him that I only accompany them for haloperidol 5 mg part of their journey, then they adjust, get some confidence back, and carry on without my help.

One of the difficulties I face with doctors is trying haloperidol 5 mg to make them understand that knowing everything about a disease haloperidol 5 mg doesn’t mean they know what it is like to live haloperidol 5 mg with it. Their role is vital, but living with the disease is not part of their haloperidol 5 mg expertise, so they are not best placed to advise patients on haloperidol 5 mg this issue, that’s why having a patient expert in the team helps haloperidol 5 mg and results in a better service to patients.

I am not specifically trained to work in a medical haloperidol 5 mg team, my involvement stepped up gradually after I started to support haloperidol 5 mg the clinical centre with EU projects. Working together has helped me build trust and understand different haloperidol 5 mg points of views. It has been a long, but steady journey. What has made it hard for me at times is haloperidol 5 mg the fact that doctors end up seeing you like another haloperidol 5 mg healthcare professional and it is difficult to explain that we haloperidol 5 mg use a different language and have different habits and expectations. We need to develop a common language that makes everybody haloperidol 5 mg feel comfortable, and create a new team spirit where all the skills haloperidol 5 mg of all members of the team are valued.

It’s not common to have a patient expert in a haloperidol 5 mg clinical centre, but I hope it will become more so in the haloperidol 5 mg future. In italy, where there is a growing lack of specialists, having a patient expert on the team can be a haloperidol 5 mg real help, as well as providing a strong element of personal growth haloperidol 5 mg to all.

Paola kruger has been involved in patient advocacy since her haloperidol 5 mg diagnosis with a chronic disease in 2010 and has been haloperidol 5 mg working with the MS centre of a large hospital in haloperidol 5 mg rome developing patient-centric healthcare models. She graduated from the IMI-funded project EUPATI project in 2016. In april 2019 she was appointed patient expert of the haloperidol 5 mg MS centre by the director general. Sh e is a listed EMA expert and speaks at haloperidol 5 mg numerous national and international events. She is a member of the ISPOR patient roundtable and haloperidol 5 mg represents patients on several boards and scientific committees.