GAMIAN-Europe produced the Schizophrenia Companion Guide in 2016 as a 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.
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 potentialeffects on the physical health of patients. Life expectancy ofpeople 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 of building on our work in the area of schizophrenia, GAMIAN-Europe proposes the production and launch of a complement to the Schizophrenia Companion Guide. The present guide is an excellent tool to inform and educate patients, carers and practitioners about the signs and treatment opportunities of schizophrenia. We now plan to develop a second guide that will inform on best evidence of:
• Health promotion and prevention addressing risk factors relevant to the lifestyles of people with schizophrenia
• Early detection and treatment of physical diseases associated with people with schizophrenia.
GAMIAN-Europe acknowledges that a big part of the problem with the health care system is its inadequacy to address the needs of mental health patients.
They face several obstacles to receive comprehensive care in health care systems:
1. People with schizophrenia and their families have often not been well informed about health risk of treatments, early warning signs and personalised beneficiary health promotion activities.
2. Patients only receive treatment for their mental health condition by mental health services, and early stages of physical diseases are ignored, due to a combination of: an inability of mental health professionals to recognise, refer or treat medical conditions; and symptom overshadowing, i.e. physical symptoms are not recognised but explained as an expression of the mental health problems.
3. If physical health care is accessed, patients with schizophrenia can be faced by ignorance, stigma and discrimination, not always receiving the highest quality care.
4. Once patients recover from mental health conditions, health care assistance will be discontinued, ignoring their longterm health risks and need for integrated mental and physical follow up.
The GAMIAN-Europe is committed to address these priorities in the second Guide, and by organising a set of activities to raise awareness of the importance of its recommendations. The guide will therefore aim to:
• Provide 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.
• Empower 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. GAMIANEurope’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.
• Work 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.
• Connect 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.
If you are interested in supporting this project, please contact us at email@example.com