Schizophrenia Companion Guide II – Continuity of Care
BACKGROUND
GAMIAN-Europe produced the Schizophrenia Companion Guide in 2016 asa tool for mental health patients, their families and their carers to understand schizophrenia, its symptoms and treatments. The guide is an essential document that explains the condition in a clear and understandable language.
The 60-page document is currently available on the GAMIAN-Europe website. It was developed through the collaboration and arduous work of some GAMIAN-Europe members and professionals in the mental health area.
The Guide was introduced during the ECNP Congress in Vienna in 2016 and was shared during the Schizophrenia Patient Organisation Advisory Board Meeting held on 8-9 of June 2017 in Leuven, Belgium.
We have distributed the guide through our social media platform with great results: there were more than one thousand impressions on Twitter during the 2017 Schizophrenia Day.
Need for a health guide for people with schizophrenia
Many guides on schizophrenia are already available in many countries and in many languages, a few developed in partnership with patient organizations. An overview prepared for Otsuka and Lundbeck by Havas Just (April 2018), Schizophrenia and Psychosis Care and Treatment Planning Resource, identifies resources in 5 countries. Many of these identified resources offer excellent information on early signs, symptoms and treatments for patients and carers, treatment guidelines for clinicians, and quality standards for services.
Absent are guides that focus on the broader health consequences of schizophrenia, particularly the potential effects on the physical health of patients. Life expectancy of people with schizophrenia is severely shortened as compared to the general population, by as much as 20 years. The main cause of early death is not the mental disorder, but physical conditions such as cardio-vascular disease, cancers and diabetes. This can be attributed to lifestyle challenges such as high levels of smoking, poor diet, obesity and lack of exercise, interacting with the effects of psycho-tropic medication. Many of these deaths would be preventable by a combination of indicated health promotion and the detection of early symptoms, and the provision of good quality care by the health system, respecting the right to parity of care.
With the aim to build on our work in the area of schizophrenia, GAMIAN-Europe proposes the production and launch of a complement to the Schizophrenia Companion Guide.
OBJECTIVES
GAMIAN-Europe is committed to address these priorities in a second Guide by organising a set of activities to raise awareness of the importance of its recommendations. The guide will therefore aim to:
- Providing accessible information
Evidence-based information to patients and families regarding schizophrenia and the promotion of healthy lifestyles that can reduce risk of poor physical health and reduce early preventable death. The second schizophrenia companion guide will seek to provide guidelines on how patients can improve and maintain their health and how families and friends can support them.
- Empowering patients
Patients should be able to recognise the challenges of their recovery process and learn the early signs of mental or physical health problems, being active and assertive partners in their care. They need to keep updated on the best practice related to their health challenges. GAMIAN-Europe’s project will seek to encourage patients who have schizophrenia and their families to be actively involved in the design of care plans taking a holistic perspective of their health.
- Working in partnership with practitioners
Patient centred care and empowerment requires a partnership of equals between patients and practitioners. The guide will be developed together with professional stakeholders, aiming to provide information and recommendation about good inclusive mental health and physical care.
- Connecting patients across Europe
Learning from other patients’ experience will be beneficial as it will help patients to understand that a large number of people around Europe are facing the same challenges. It will be beneficial to families and carers to exchange experience of applying health promotion activities and gaining the benefits from improved access to good quality health care.
The guide will be developed under the coordination of GAMIAN-Europe and in cooperation with EUFAMI, in partnership with organizations including the European Psychiatric Association (EPA), European Federation of Psychological Associations, and HORATIO, the European Nursing Association. A steering group will be formed that will supervise the content of the guide.
It is expected that the production of the guide will take approximately 12 months.