16 January 2007
Bipolar disorder: Improving patient–family–doctor communication
In response to this need, several initiatives have been put in place by the Global Alliance of Mental Illness Advocacy Networks-Europe (GAMIAN) 1 and other organizations to improve communication between patients, their families, carers and healthcare professionals. These include training workshops for both patients and carers, and the encouragement of greater openness on the part of the physician to discuss the different treatment options available.
Improving communication may also help to confirm a diagnosis, as carers may be better placed to describe patients’ behavior than the patients themselves, particularly during the manic or severely depressive phases that are characteristic of the disease. Carers may also be able to help with treatment plans, ensuring that patients adhere as closely as possible to their doctor’s or nurse’s advice.
Talking openly to your doctor can help diagnose bipolar disorder
Lack of communication adds to stress of diagnosis
“Coming to terms with a mental illness is extremely difficult,” said bipolar sufferer Michael Grinter at a recent conference held under the auspices of the GAMIAN. 12 Mr. Grinter, who works for the UK charity MDF The BiPolar Organisation,3 described the time when he was hospitalized for the disease 10 years ago as “the worst experience in my life… I have never felt so unsupported and uncared for.”
The main problem, he said, was a lack of communication. No-one explained to him or his family what bipolar disease was, how it was treated, what the side effects of the treatment he was taking were and how to deal with these, if they occurred.
“I only became aware of the diagnosis when I started lithium [treatment],” Mr. Grinter said. The term “manic depression”, a colloquial term for bipolar disorder, had been written on a form he had to present for a blood test, which had to be performed to monitor the effects of the lithium therapy.
Mr. Grinter added that his mother resorted to the local library to find out more information about bipolar disorder.
At the same conference, Inger Nilsson, president of the European Federation of Associations of Families of People with Mental Illness (EUFAMI)45 highlighted the stress that lack of communication about mental illness has on the family. Her own daughter was diagnosed with a severe mental illness in 1993, although it was not until later a diagnosis of bipolar disorder was confirmed.
The years of stress, feelings of anger, isolation, and guilt, of not knowing what to expect and the difficulties of dealing with someone who has bipolar disorder all took their toll on Mrs. Nilsson and her family. They almost caused Mrs. Nilsson’s long-standing marriage to fail, and lead to her own treatment for depression.
Finding support for the patient and family
Mrs. Nilsson’s and Mr. Grinter’s accounts also described the solace they eventually found in the support organizations they now work for.
The MDF BiPolar Organisation is run by people who have first-hand experience of bipolar disorder, like Mr. Grinter. The Organization’s objective is to help its members obtain information and advice about the disease, and to help people gain the confidence to tackle the problems it causes.
One of the ways the organization does this is to run self-help training courses, which help affected individuals to understand their condition, learn to recognize the signs of an approaching manic or depressive episode, and help them to avert or minimize the effects of these.
Mr. Grinter pointed out that these courses have proven very effective. “The feedback has been positive, with participants feeling more confident about themselves, and their ability to manage the illness,” he said.
EUFAMI run similar training courses for families and carers. Mrs. Nilsson said that the real turning point for her was when the staff at the hospital treating her daughter invited her and her husband to participate in a 12-week group education course on mental illness. At the first session, Mrs. Nilsson recalls breaking down in tears because “finally someone was listening.”
Today, EUFAMI runs a variety of training courses for patients, families, and healthcare professionals which are “underpinned in the belief that, given an atmosphere of inclusion and understanding, people with mental illness and their caring relatives and friends can move forward in hope, regain control over their own lives, and recover the abilities, skills and capabilities that define them as individuals.” 6
The Prospect Project run by EUFAMI includes a 10-week program for family and friends which aims to help attendees gain confidence and refine their coping skills when dealing with someone suffering from mental illness, help them to regain control of their individual situations and thus improve their (and their loved ones’) quality of life.
EUFAMI also holds an annual conference for everyone affected by mental illness, including family members, people with diagnosed mental health problems, and those working in health and social care. The most recent conference was held in Torun, Poland, 14-16 September 2006.
Therapy can help family members understand bipolar disorder
Improving communication
There are various ways in which healthcare providers can improve communication with patients and their families in order to make the diagnosis of bipolar disorder easier to cope with.
Mr. Grinter proposed that spending more time with the patient during initial consultations would be a help, as would offering a message of hope that the illness is common and that there are effective treatments available to help sufferers regain control of their lives.
Providing information to patients while they are in hospital is vital, he said, and greater healthcare resources are paramount in ensuring that patients have the support they need at all times. Referring patients and their families to alternative sources of information, such as credible Internet sites and voluntary organizations such as MDF The Bipolar Organisation, can also be of great comfort and help.
Affected individuals need to be aware of what triggers episodes of mania or depression and how to avoid these if at all possible; if not, strategies to minimize the effects should be developed.
“Bipolar disease is not just about taking medication… There has to be a balance between work, family, and leisure commitments,” Mr. Grinter stressed.
Discussing how patients, carers, and doctors could work together to improve communication about bipolar disease and other mental health problems, Mrs. Nilsson said that there was a need to change negative views into positive ones – “from despair to hope,” she said. “Low expectations need to become high expectations… and not being able to should change to being able to.”
By supporting the patient and carer to help them take control of mental illness, involving them in treatment decisions, and making them take responsibility for themselves, doctors can significantly help improve the daily lives of the thousands of people living with mental health problems.
References
- Global Alliance of Mental Illness Advocacy Networks (GAMIAN)-Europe website.Accessed September 18, 2006
- Grinter MJ. The patient’s perspective in the diagnosis and treatment of bipolar disorder – how can this be improved? Oral presentation at the 2nd Biennial Conference of the International Society for Bipolar Disorders, Edinburgh, UK, August 3, 2006.
- MDF The BiPolar Organisation website.Accessed September 18, 2006.
- Nilsson I. My story and the importance of meeting other family members to get an understanding of illness. Oral presentation at the 2nd Biennial Conference of the International Society for Bipolar Disorders, Edinburgh, UK, August 3, 2006.
- European Federation of Associations of Families of People with Mental Illness (EUFAMI) website. Accessed September 18, 2006.
- Prospect Project leaflet. EUFAMI, 2004. #00003
