Severe mental illness, affects one in 100 of the population": most people would automatically assume the reference is to schizophrenia.
But in fact, these words also apply to manic depression, otherwise known as bipolar disorder - and according to recent research, the incidence may even be as high as five in 100. Manic depression is serious mental health problem involving extreme swings of mood (highs and lows). Both men and women, of any age from adolescence onwards and from any social or ethnic background - can develop manic depression. The impact of incorrect diagnoses and sub optimal treatment can be devastating for those with the diagnosis and their families and friends: lost jobs and homes; broken marriages; lost friendships; and one in seven people untreated will commit suicide.
Yet the prognosis can be so much more positive than that. Manic depression is episodic and it is possible to remain well for long periods. Manic depression is a highly manageable condition, with typically the key being an early diagnosis and acceptance of the condition. From this point, self management, health care, therapy and medication can be taken up as appropriate. Many people with the condition live successful and fulfilling lives, making a valuable contribution to society.
So what makes the difference? The Manic Depression Fellowship is a user-led organisation run by and for people who are affected by this condition. We carried out a survey of our 4,500 members last year to ask them what difficulties they faced in their engagement with health professionals.
Where people have been involved in their treatment, and given informed choice by knowledgeable and trained professionals, the difference is startling: "Following a second opinion at the Maudsley there has been a considerable improvement (in son's) condition", and "The whole of my (healthcare) team work in an empowering way. I have choices as opposed to direction".
Frequently the types of services that people need to access are community based, primary or secondary care rather than hospital treatment. Consequently it is disappointing that, although cited in the National Service Framework for Mental Health as one of the 10 leading causes of disability in adults aged 15-44, there is no further consideration given to the specific needs of people with manic depression. We therefore are very concerned that treatment for people with manic depression will remain under-resourced and the needs of the 500,000 people in England and Wales alone will not be adequately met.
Set up in 1983, the MDF works to enable all people affected by manic depression to take control of their lives. We aim to do this by:
Supporting and developing self help opportunities; Expanding and developing the information services; Influencing the improvement of treatments and services to promote recovery; Decreasing the discrimination and promoting the social inclusion.
We also provide a unique, user-led and user-developed self management, programme based on the principle that people with manic depression can become experts on their own mental health. This programme, cited in the Chief Medical Officer's report on Expert Patients, takes participants through the stages of recognition, action and maintenance needed to manage the condition successfully. The programme has run since 1998, and research to date shows reduced hospitalisation and increased self esteem. Comments from participants include, "Since doing the (MDF) self management course two years ago I have not been admitted to hospital - it was happening once or twice a year before the course"; "Learning about manic depression, how to manage and live with it, has been very important to me"; and "Support from my psychiatrist at Hellesdon Hospital was significant in gaining an understanding of self management."
We are currently piloting a self management programme for young people, Steady (Support and Training for Elation and Depression in Young people), following the increasing diagnosis of manic depression at earlier ages.
Problems relating to the care of manic depression:
Lack of knowledge: "Doctors don't seem to cover it (manic depression) in their training." Length of time to get an accurate diagnosis: "Despite regular contact with medical professionals, I was not diagnosed for 20 years." Sub optimal treatment: "Due to inadequate prescribing practices and poor monitoring I frequently suffered toxicity as a result of my medication." Difficulty in accessing treatment "I have been appalled by the unresponsiveness of the medical profession to attempts made by my sister to seek medical help to avoid a crisis and consequent prolonged and severe illness." Accessing ongoing support, for example counselling, cognitive behavioural therapy: "Always a very long wait, 10-12 months if not an emergency." Exclusion from treatment decisions: "I am still finding it difficult to get professionals to listen to me about medication, doses and side effects." Exclusion of carers from consultation about treatment: "For 20 years my husband battled against the health service alone. I was treated as an unnecessary nuisance and advised to leave him."
