Patient Involvement

Written by Franco Scarpa, Patient Involvement Coordinator of the COST Action and, Psychiatrist and Director of  Unità Operativa Complessa of USL 11 in Tuscany.

A key recommendation of our COST Action is the involvement of patients in the activities of the Action. This involvement may come from patients and their relatives individually, or from patient boards, where such boards exist. The aim of Patient Involvement here is to provide users of long term forensic psychiatric care services a platform for input, where they can express their ideas and opinions on our two objectives, 1) reducing the length of treatment for long term forensic psychiatric patients and 2) improving the in-care life experience for long term forensic psychiatric patients, measured through the use of Quality of Life (QoL) indicators. To begin with, we will be collecting written contributions from patients, their families, industry experts, and others with ties to long term forensic psychiatric patients. This will provide foundations for continued patient involvement.

Our prior research shows that the increasing length of treatment time for long term forensic psychiatric patients may be caused by either insufficient beds in facilities with lower levels of care and security, preventing a transfer, or an inability to reduce sufficiently reduce the risk of recidivism. Regardless of the cause, patients are staying longer in long term forensic psychiatric care – we have now seen patients live out their lives within such facilities. And our attention, as forensic psychiatrists, has shifted to include the patient experience: At the least, we need to ensure the basic human rights of long term forensic psychiatric patients’ are maintained inside these facilities. To do this, our forum will consider a broad spectrum of rights, drawing on concepts such as Needs and Quality of Life (QoL).

The usefulness of patient involvement was demonstrated to me, as a forensic psychiatrist, during the time I was employed as the Director of a Forensic Prison Hospital in Italy. Based on this experience, which I will share in the following paragraph, we intend to collect stories of treatment pathways that have achieved a positive outcome – stories of patients that have achieved full recovery, recovering their health as well as their job and former friendships, for example. The positive stories of former long-term forensic psychiatric care patients will be used to facilitate a dialogue about ´best practice´, inspiring professionals in the field and giving hope to current patients.

In my career as a forensic psychiatrist, as the Director of a Forensic Prison Hospital in Italy, I met patients of all ages and backgrounds. Many of them were young, which makes it more difficult for the reader to accept the restrictions of institutional treatment and the reduction of perspective of opportunities in their life. I recall many faces of patients who, in my judgment, would have been better off living under the care of family, or in an outpatient environment. Offering former long-term forensic psychiatric care patients the opportunity to share their stories will assist in our understanding of the circumstances patients live in; their perspectives on it, and their ideas about the right live a normal life. To bring my experience to life for the reader, what follows is a transcription of part of an interview with an Italian patient; an interview in which we touched on some aspects of Quality of Life (QoL), as a result of discussing his involvement in decision making within the long term forensic psychiatric care environment in which he lived.

What are your most important needs?

“I never ask for something because I’m afraid they can say no. The relationship with the staff is very important because I can ask them for advices about everything. I can confide in them.”

How are you involved in the decision making about the planning of your care and treatment?

“I don’t remember. They don’t ask me about that. They told me I am dismissed from the hospital and then I’ll go to a new facility. It’s more beautiful when I decide and together with the others. That we both decide.”

This patient’s responses (above) demonstrate the value of patient involvement in the dialogue.

We call for written contributions from former long-term forensic psychiatric care patients, their family members, friends, and others with ties to patient treatment, especially personal stories, which will help us influence policy development for better patient outcomes. We also call upon long term forensic psychiatric care experts, regardless of their affiliation with the Action, to contribute written accounts of their experiences and share their opinions regarding patients’ participation in their treatment plan.

The final goal of the Action, which we aim to achieve by 2017, is the foundation of institutional boards, comprised of patients and/or their relatives, with an ongoing influence on continuous improvement of the treatment and the quality of life of long term forensic care patients and long term forensic care facilities. An excellent outcome of patient involvement would be a “Manifesto”, or similar – a text that details the needs of patients, and their relatives. Such a text could be provided to represent patient interests in the development of European guidelines that govern standards of treatment and facilities in long term psychiatric care.

If you are able to make a written contribution to this forum, please click here. Might be that you still have to register, but you can also email your contribution to isch1302@gmail.com