Rewards of a regime

The disruption to people’s lives caused by
manic depression can be lessened by a regime of self-management.
Natalie Valios looks at the improvements that are possible when
people with this diagnosis are given greater control over their
lives.

Steve Kimish can be feeling suicidal in the
morning and ready to party by the evening. He has manic depression
in its most extreme form. He can’t plan anything because he doesn’t
know how he will feel when he wakes up.

I’ve caught him on a good morning. He is
jovial on the phone, in fact his mood becomes higher and higher as
the conversation progresses, an example of his rapidly changeable
disposition. He has used self-management techniques to help him get
in the right frame of mind to talk to me. Self-management involves
learning to recognise early triggers and warning signs of a manic
or depressive episode.

Manic depression is characterised by extreme
mood swings, from depression to overactive, excited behaviour.
There are different forms of the condition and not everybody will
experience both the depressive and manic phases.

On average it takes 10 years to get an
accurate diagnosis of manic depression. Standard treatment is
lithium or anti-psychotic drugs that have changed little over 40
years. However, user-led self-management programmes have been
developing during the past 20 years. Originating at Stanford
University, California the chronic disease self-management
programme recognises that people with chronic conditions deal with
common issues such as stress and a need to develop coping skills on
a daily basis. Similar programmes have followed in this
country.

Now 54, Kimish recognises that he has had
manic depression since his teens. It took him until his 40s to
admit that something was wrong. But he did not want to have it
checked. “I didn’t want to be locked up or have the mental health
tag,” he says.

Manic depression has driven Kimish to
“embezzle, lie, steal, and let people down”. He has been hired and
fired more times than he cares to remember. He has an IQ of 162,
but can’t use it. As he says, who wants to employ someone who can’t
guarantee they’ll be at their desk tomorrow? During one manic
episode he says he managed to talk a bank manager into giving him a
mortgage for a house, despite having no job, bank account or
deposit. He went into a depression and ended up homeless a year
later after being evicted for failing to make any payments.

This led him into the mental health system and
medication. He heard about self-management through his local branch
of the Manic Depression Fellowship in Southampton. Initially
sceptical about the concept because “the mental health system is
littered with airy fairy courses”, he was converted after going on
a course.

Self-management has alerted Kimish to
situations that may trigger a mood swing. “When I start sleeping a
lot, it’s a warning sign that depression is coming and vice versa.
Then you have to take some action. For example, if I’m going high I
switch from music radio to talk radio because it’s more soothing.
Walking alone is good to bring the up down, as opposed to walking
with a friend to bring you back up.”

When he knows a manic period is imminent, he
removes cash from his wallet so that he goes window shopping rather
than spending money. His bills are paid four months in advance and
his freezer is stocked with food so that he doesn’t need to worry
if he wants to crawl under the duvet for a week and not leave his
flat.

“Recognition, action and maintenance are my
key words,” he says.

The message of self-management has now been
taken up by the government. In 1999, it set up an expert patients’
task force with a remit to design a programme that would bring
together the work of clinical and patient organisations in
developing self-management initiatives. The task force’s
report¹ published last year sets out common requirements
of people with chronic conditions, including:

– Knowing how to recognise and act upon
symptoms.

– Dealing with acute attacks or exacerbations
of the disease.

– Making most effective use of medicines.

– Accessing social and other services.

– Managing work and employment services.

– Developing strategies to deal with the
psychological consequences of the illness.

It recommends action over a six-year period to
introduce self-management training programmes led by lay people
within the NHS in England. James Reilly, assistant director of
community care at Hammersmith & Fulham Council, was a member of
the task force. “The report reinforces the message that we work
with and alongside users and we should avoid doing things for them
and at them.”

He says the amount of reviewing of practice
taking place as a result of the NHS Plan, Best Value and national
service frameworks, gives agencies the chance to implement the
report’s recommendations and bring in the user perspective.

“It’s an opportunity for capturing the users’
understanding of what works and incorporating that into their care
plans.”

Manic depression is just one of several
conditions to fare well under self-management. Others include
arthritis, multiple sclerosis and diabetes. At the Manic Depression
Fellowship, users developed a self-management programme with six
modules, which has been running for three years. All trainers have
manic depression and self-manage themselves. The programme teaches
users about their triggers and warning signs. It also stresses that
self-management is not a replacement for medication but a
complement.

“People have their own relapse signature
whether they are going high or low and if they can spot them early
enough they can prevent the episode happening,” says programmes
manager Amanda Harris.

The first two modules take people through the
background of manic depression, look at the problems they have had
in the past, plan a life chart with them where they discover their
triggers for mood swings, making the distinction between early and
late trigger signs. The next two modules focus on action planning –
what users can do when they feel an episode coming on, for example
taking time off work very quickly, or having their children stay
with someone else for a while.

The next module looks at advance agreements.
This sets out what a user wants to happen should they have a severe
episode, for example, naming a friend who can collect their
children from school, or identifying someone who can be in charge
of their credit cards – a common consequence of a manic episode is
for the user to spend vast amounts of money. Finally, the programme
stipulates maintaining well-being, covering nutrition, exercise,
and stress reduction.

“The healthier you keep your body and mind,
the more likely it is to be able to fight the flare up of the
condition,” says Julie Barlow, director of the interdisciplinary
research centre in health at University of Coventry. She has worked
in the self-management field for 10 years. There is a core set of
skills users should learn, she says, many involving lifestyle
changes – not smoking or drinking too much, healthy eating,
exercise, and relaxation.

“Giving people skills doesn’t mean the
condition is going to go away, but it does mean they can manage
it,” she adds.

About 300 people have already learned to
self-manage through the Manic Depression Fellowship’s programme,
and the waiting list is 600-strong. The programme is currently the
subject of a randomised controlled trial. An interim analysis of
outcomes reveals improvements in self-esteem, less severe episodes
of depression and fewer suicidal thoughts.

Self-management has saved Kimish’s life. “I
may not avoid all the highs and lows, but I can mitigate some of
them. I have started to enjoy life again.”  

¹ Expert Patient Task
Force, The Expert Patient – A New Approach to Chronic Disease
Management for the 21st Century, DoH, 2001

For more information, go to the Manic
Depression Fellowship’s website at www.mdf.org.ukor the
website for the Long-term Medical Conditions Alliance at
www.lmca.org.uk