This guest blog is by John Saunders from EUFAMI - an international non-profit organisation dedicated to ensuring the rights of family members of people suffering severe mental ill health are protected at a European level. John takes us through the challenges of balancing familial support for those suffering severe mental ill health while maintaining patient confidentiality.
Understanding the patient group
The process of recovery from severe mental ill health is by nature complicated. Like with severe physical ill health, there are often multiple and unknown causes, meaning the process of treatment is rarely straightforward. Typically, it involves professionals from a range of specialisms delivering multiple complementary interventions. Sometimes there can be significant improvement quickly, but more commonly it takes a long time – in some cases it is lifelong. In light of that, the question of how to care for an individual while they are suffering severe mental ill health is key: this is not a short-term recovery that can be managed alone.
Information ‘from’
Family members often take up a caring role for mentally unwell individuals, and in so doing become experts in their own right. EUFAMI advocate that they are recognised as such.
One way of doing this is allowing their formal inclusion in the admission, assessment and diagnostic process for their loved one. Additionally, policymakers and health and social care professionals can and should utilise the key health information and data familial carers can give them in order to formulate realistic care plans.
Information ‘to’
It is equally important that information can be given back to carers by professionals. This includes the sharing of information on treatment options, lifestyle management and on the value of medical and psychological therapies and social and emotional support. Families also deserve affirmation and feedback from service providers and an appropriate level of support and advice.
The bottom line is that to be able to obtain the knowledge and skills necessary to provide good care, families need to have access to information and data about their loved one’s condition.
What about patient confidentiality?
It is of course important that systems are in place to protect patient confidentiality. For instance, we accept its crucial role in cases where it is not in the best interests of the person living with mental ill health to have their family involved in their care.
Equally, it is important for systems to allow for agreed-upon, positive carers to fulfil their role properly. After all, it is the experience of many individuals that the support of a family member is a significant factor in the outcome of mental illness. Without the correct information, the correct care cannot be given.
In summary, EUFAMI advocates that there should be a protected flow of informal and formal data, which is securely accessed and shared between service providers, mental health professionals, individuals with mental ill health, and their caring family members.
