Mind, National Association For Mental Health | Mind
Contents
page
1. Introduction and summary
1
2. About the research
2
3. What people told us about coping with
coming off
3
4. Actions and recommendations
12
Acknowledgements
All the people who carried out this research have
Funding
experience of coming off, or of attempting to
come off, psychiatric drugs.
This project was funded by a grant from the
Department of Health.
Core team
Thanks
Coordinator: Jim Read
Administrator: Veronica Dewan
Many thanks to the people and organisations
Research consultant: Jan Wallcraft
who kindly spread the word that we were
seeking people to interview, and to everyone
Additional work
who agreed to be interviewed. Thanks also to
participants in the workshop at the 2004 Mind
Brief interviews: Raza Griffiths and Kate
conference who helped us develop the topic
Summerside
guide and participants in the stakeholder
seminar who helped us develop the
In depth interviews: Jolie Goodman, Raza
recommendations.
Griffiths, Mina Sassoon, Kate Summerside, Eileen
Philip and Premila Trivedi
Finally, thanks from Jim, Jan and Veronica to
Alison Cobb, who managed the project and
Transcribing: Indra Dewan and Rosemary Harris
liaised with us on behalf of Mind.
Consultant on qualitative analysis: Alison
Faulkner
Drug groups mentioned in this report:
Data analysis: Angela Sweeney
• SSRI antidepressants (Serotonin Specific
Re-uptake Inhibitors). A similar drug, Efexor
Advisory group
(venlafaxine) has been included in this group.
• Neuroleptics, also known as antipsychotics.
Our work was supported thoughout by the
• Mood stabilisers.
advisory group: Peter Campbell, Catherine
• Minor tranquillisers, which includes
Clarke, Katherine Darton, Diane Denton,
benzodiazepines.
Charanjit Dosanjh, Portia Omo-bare, Kerry
Sproston and Phil Thomas.
When specific drug names are used, the drug
group is also given. Trade names for drugs are
given with an initial capital letter. For example,
Seroxat is a trade name for the SSRI, paroxetine.
Caution
If you are stopping taking medication, it is advisable to reduce the dose gradually, as it is difficult
to predict who will have problems withdrawing. It is worth getting as much information and
support as you can, and involving your doctor wherever possible.
1. Introduction and summary
Introduction
difficulty sleeping and depression. Those coming
off SSRIs were more likely to have difficulty
Mind’s research into people’s experiences of
coming off than people on mood stabilisers
adverse effects of taking psychiatric drugs*
or neuroleptics.
highlighted the lack of information and support
for people wanting to stop taking medication.
Success
The research for Coping with coming off set out
The biggest factor in influencing success in
to find out what happens when people do try to
coming off was length of time on the drug.
come off psychiatric drugs: the effects of
Four out of five people who had been on the
withdrawal and what helps people to succeed.
drug less than six months succeeded, compared
with under half who had been on it more than
Summary
five years.
Why stop?
Benefits
The most common reasons given for wanting to
When people who succeeded in coming off their
come off drugs were disliking the adverse effects
medication were asked about the benefits, they
of taking them and not wanting to be on them
most often said: better mental ability, feeling
long-term.
more alive, having taken back power and
control, no longer experiencing the adverse
Doctors and patients
effects, and feeling good about managing
without the drugs.
The research highlighted significant difficulties
between doctors and their patients:
Recommendations
• Doctors were unable to predict who could
• All people who prescribe psychiatric drugs to
come off their psychiatric drugs successfully.
have training in how to support people who
People who came off their drugs against their
take them.
doctor’s advice were as likely to succeed as
• More funding for services to support people
those whose doctors agreed they should
through coming off psychiatric drugs.
come off.
• Learning from best practice in mental health
and substance misuse organisations.
• People on mood stabilisers or neuroleptics
• Commissioning of user-led projects offering
were particularly likely to come off against
independent information, advice and mutual
their doctor’s advice or without telling their
support for people on psychiatric drugs.
doctor. About two thirds of people on mood
• Dialogue between all interest groups
stabilisers and neuroleptics tried coming off
concerned with taking or prescribing
against the advice of their doctor or without
neuroleptics and mood stabilisers.
telling them.
• Further research into people's experiences of
trying to come off neuroleptics and mood
• Where doctors were involved, they were the
stabilisers.
least likely to be found helpful of any group
of people. About half the people who sought
This research has highlighted themes that are
or received help from a doctor found them
familiar in many debates about mental health
helpful. In contrast, around nine out of ten
services. They include:
people who sought help or support from a
counsellor or psychotherapist found them
• service users wanting to be listened to and
helpful, with other service users being found
treated with respect
similarly helpful.
• alternatives to psychiatric drugs
• access to information
Difficulties
• value of peer support
• lack of credibility when you have a diagnosis
Of the people we interviewed, over half
• control and coercion
experienced difficulties in coming off their drugs.
• conflicting views about mental health and
The most common difficulties were anxiety,
distress.
*Cobb, A, Darton, K and Juttla, K (2001) Mind’s yellow card for reporting drug side effects: a report of users’ experiences (Mind)
1
2. About the research
The research was carried out in two stages:
In depth interviews
1. Short interviews with 204 people using a
We chose the people to interview again, in
questionnaire. This was intended, primarily,
depth, to give a balance of backgrounds and
to obtain quantitative information.
experience. After much thought and discussion
about the pros and cons of phone interviews and
2. In depth interviews with 46 people using
face to face interviews, the majority were
a topic guide. This was intended, primarily,
conducted over the phone. All were recorded
to produce qualitative information.
and later transcribed.
The short interviews
The interviews were carried out during the
period August to November 2004. They were
Our intention was to recruit at least 200 people.
analysed using the ‘Framework’ method.
We were looking for a diverse group in terms of
age, where they lived, ethnicity and gender.
Comparing different drugs
We also wanted to include a good spread of
experience of taking and trying to come off
We wanted to find out if people had different
psychiatric drugs among the people
experiences, depending on what drugs they tried
we interviewed.
to come off. When making these comparisons,
we only considered people who tried to come off
A short form was distributed which people were
one drug and were on no other psychiatric drug
invited to fill in and return if they were willing
at the time.
to be interviewed. On the form, they gave brief
details about themselves and their experience.
This left us with:
The forms were distributed through Mind's
• 64 people on SSRI antidepressants
networks, through internet groups and personal
• 21 people on neuroleptics
contacts, and it was also available on Mind's
• 12 people on mood stabilisers.
website. Other organisations copied and
distributed the forms and also made it available
There were no other drugs groups with 10 or
on their websites.
more people, which we decided was the
minimum number that would give us meaningful
In the end, we received 248 forms. Although we
results. The numbers of people in these three
did not have the amount of choice we had
drug groups that we did choose are quite small,
hoped for, we still ended up with a reasonably
and this should be remembered when looking at
balanced group. We chose it to ensure that
the results.
about half had succeeded in coming off a drug.
We can make no particular claim about how
Also, it should be noted that there may be
typical the experiences of this group were
differences between drugs within these groups.
compared with those of all people who have
For example, some SSRI antidepressants may be
tried to come off psychiatric drugs.
more difficult to come off than others.
Most of the short interviews were by telephone,
the rest were face to face. They were carried out
between November 2003 and August 2004.
Tables, including details of the demographic
We created a questionnaire and analysed the
characteristics of those interviewed, are
data using the survey software, Keypoint.
available at www.mind.org.uk
In each interview, we collected some general
information about the person’s experience of
psychiatric drugs. Then we focused on one
episode of trying to come off. This was the most
recent, unless the person had a strong preference
to talk about another episode.
2
3. What people told us about coping
with coming off
In this section, we present the results of our
Mixed experience of taking a minor tranquilliser:
research. We start with what people told us
about their experience of being on psychiatric
“Diazepam saved my life but I can’t
drugs and follow their journeys through deciding
get off it.”
to try to come off them, the difficulties they
encountered, the help they received, whether
they succeeded and how they felt about it
afterwards.
Experiencing lithium (a mood stabiliser) as
harmful:
Experience of being on psychiatric drugs
“The shakes were terrible; I couldn’t
To understand why people wanted to come off
walk properly and couldn’t see
their drugs, we asked about their experience of
being on them. We asked how well or badly,
properly.”
overall, psychiatric drugs had worked for them.
There was an even spread of positive and
negative responses. Nearly a fifth (18 per cent)
had found them mainly helpful, with a similar
We also asked how much choice people had in
proportion (21 per cent) saying they were mainly
taking their drugs. They could give more than
harmful. The rest gave an even spread of
one answer, reflecting different experiences on
answers between these two positions.
different occasions. Their responses indicated
how often they had not experienced real choice.
These figures show that most of the people we
spoke to did not find the drugs they took to be
Nearly one third (30 per cent) had been
straightforwardly beneficial. This sometimes put
compelled to take them under the Mental Health
them at odds with people, such as mental health
Act. Just over half (52 per cent) had been in a
workers and family members, who had more
situation where they felt that if they did not
faith in the drugs.
comply they would be compelled. Seventy per
cent had felt pressured to take them, and the
same proportion had felt powerless or passive
about taking them. Just over half (54 per cent)
felt they had experienced free choice on at least
one occasion.
These figures show how seldom the people who
participated in this survey had actively agreed to
take their psychiatric drugs in the first place.
This was likely to affect their commitment to
stay on them.
Unimpressed with taking an antidepressant,
neuroleptic and mood stabiliser:
“I don't think that the medication
I’m on makes a lot of difference.”
Ambivalence about taking an SSRI
antidepressant:
“I wish there could have been two
of me; one that took the road
without Seroxat and one with
Seroxat; because I want to know if
it has had a positive influence on
my life or been a burden.”
3
Why people wanted to come off them
When we asked people to tell us about one
episode of trying to come off their drugs, these
were the reasons they gave for wanting to stop:
Table one
Reasons given for wanting to come off drugs
Per cent
I didn't like the adverse effects of the drugs
60
I didn't like the idea of being on them long-term
53
I felt better or things were better in my life and I didn't need them
37
The drugs were not useful
32
I had only expected to be on them for a limited time
19
I was advised to come off them by a doctor
7
Other
1
204 people gave a total of 494 responses to this question
The most common reason for stopping was not
liking the adverse effects of the drugs, given by
60 per cent. Thirty two per cent said the drugs
were not useful. Both these responses indicate
people not experiencing an overall benefit from
their medication.
Over half (53 per cent) said they did not like the
idea of being on them long-term. Some were
concerned about long-term damage to health.
Others did not relish the prospect of their minds
always being affected by a drug.
Came off fluoxetine (an SSRI) because of not
Stopped taking carbamazepine (a mood
wanting to be on it long-term:
stabiliser) because of adverse effects:
“I felt a bit controlled by the drug,
“It made me so sedated, I could
in that when I thought something I
only deal with minimal family
didn’t know if that was me thinking
commitments. I was sleeping during
or if it was the drug making me
the day and I’ve got a seven year
think it.”
old child, so the two things don’t
mix very well.”
Reason for coming off Ativan (a minor
tranquilliser).
“Pills have never, ever kept me out
of bins.”
4
Making the decision to try to come off
We asked people how their doctor was involved
in the decision to try coming off. The results are
in table two. The figures for mood stabilisers and
Stopping taking olanzapine (a neuroleptic)
neuroleptics are striking. They show that a
without telling staff:
quarter actually tried coming off against the
advice of their doctor. Another two out of five
“There’s this fear of being forced
did not tell their doctor. This means that the
into compliance. I know I’m being
majority of people on mood stabilisers and
a bit covert and underhand but the
neuroleptics tried coming off without the
support of their doctor.
threat has been offered.”
Table two
How did you make the decision to try to come off your drugs?
Per cent
All
SSRIs
Mood Neuroleptics
stabilisers
I decided against the advice of my doctor
12
11
25
24
I decided without telling my doctor
26
16
42
38
I decided and my doctor accepted this
28
39
8
19
It was a joint decision between me and my doctor
13
19
17
10
My doctor decided and I accepted this
9
9
0
5
Other
12
6
8
5
Number of responses in this category
204
64
12
21
People who tried to come off without telling
Coming off Seroxat (an SSRI) without involving
their doctor usually did so because they feared
the doctor:
opposition, possibly backed up with coercion or
compulsion. But some, whose drugs were
“I haven’t told my GP but he pretty
prescribed by a GP, simply felt that they didn’t
much allows me to self-medicate.
need to talk to their doctor first.
I know he would have said ‘Yes,
that’s fine’.”
Deciding to come off venlafaxine (an SNRI)
against a doctor’s advice:
“My psychiatrist’s attitude was
‘If you don’t want to take them I
won’t see you, and you are being
very, very silly if you came off
them’.”
5
How quickly people tried to come off and why
We also asked over what time period people
came off their drugs. The results are in table
three.
Table three
Difficulties in coming off
Over what period did you try to withdraw
Before launching into descriptions of the vast
from your psychiatric drug(s)?
Per cent
array of adverse effects experienced by people
trying to come off their drugs, it should be noted
All at once, immediately
30
that 40 per cent did not experience any
significant difficulties. This leaves 60 per cent
In less than one month
14
who did. This figure rises to 68 per cent for
One to six months
32
people trying to come off SSRIs.
More than six months
21
The range of adverse effects covered just about
Number of responses
204
every aspect of human functioning. They
included:
We were interested in why so many people
(nearly a third) came off all at once, when the
• emotional problems, such as mood swings,
advice usually given is to do it more slowly. There
depression and anxiety
were many reasons.
• cognitive problems, such as difficulty
Some had been told by a doctor or a friend that
concentrating and memory loss
it was OK to come off all at once. Others had
only been on their drugs for a few days. One
• ‘psychotic’ symptoms, such as hallucinations
person had to stop because his drugs were
and paranoia
making him suicidal. Another did it
spontaneously one New Year’s Eve but then
• physical problems, such as headaches, blurred
monitored herself for signs of distress.
vision, digestive complaints, shakes and
shivers, sweating, difficulties walking and
Some people, who came off more slowly, wanted
standing, joint and muscle pain, and many
to obtain their drug in its lowest dose or a liquid
more
form, so they could come off gradually. This was
an obvious problem for people who were
• sleep disturbance, such as nightmares and
stopping against the advice of their doctor or
sleeplessness.
without telling them. But when doctors were
involved, they were not always helpful. There
Acting on advice from Council for Information
were several instances of doctors denying that a
on Tranquillisers and Antidepressants (CITA)
drug could be obtained in a low dose or liquid
when coming off Valium (a minor tranquilliser):
form when information to the contrary was
freely available in publications such as the British
“The psychiatrist told me to cut
National Formulary. Some people ended up
down by five milligrams every two
doing their own research and presented their
results back to their doctors.*
weeks but I know now that two
milligrams every two weeks is more
On coming off a mood stabiliser in one go:
appropriate.”
“My daughter came home and said
‘Mother, you’re not taking these,
you’re lithium toxic’ and she threw
them in the bin.”
*Information on low doses and liquids is in Making sense of coming off psychiatric drugs. See inside back page for details.
6
Anxiety was the most frequently mentioned
adverse effect, followed by sleep disturbance.
People coming off their drugs were conscious
that they may start to experience the symptoms
of distress that the drugs had been suppressing.
While coming off sulpiride (a neuroleptic):
Sometimes, they were also anxious about coming
off. The adverse effects of withdrawal could be
“It’s very strange but almost as if
similar, or even identical to the symptoms of
electricity is in my face or head;
distress. Disentangling these strands of distress,
withdrawal and anxiety about coming off could
a very strange feeling as if there’s
be difficult.
a lot of static electricity.”
Some people went back on their drugs without
being sure what had been happening. One
person was convinced she was either depressed
or ill, and was about to go back on Prozac (an
SSRI) when she found an internet site that listed
exactly the symptoms she was experiencing,
describing them collectively as a withdrawal
syndrome. That gave her the knowledge and
strength to carry on, and she was able to come
off successfully.
There were people who were clear they were
experiencing a withdrawal syndrome, but found
it so severe that they gave up trying to come off
their drugs or only succeeded after long
struggles.
Coming off lithium (a mood stabiliser):
“I was mildly euphoric by the time
I’d finished but I think that was
because I’d got rid of the damned
stuff.”
Withdrawing from Seroxat (an SSRI):
“I felt as if every time I moved my
head there was a bit of brain inside
that was sort of being left behind.”
7
Seeking and receiving help
We asked people who they had sought or
received help from, and how useful they found
it. In table four, we have listed the people who
provided or offered help in the order that they
were rated very helpful.
Table four
Per cent
Help received from:
Number of
Very
Helpful
Not Made things
people
helpful
helpful
worse
Counsellor or psychotherapist
53
53
34
13
0
Support group
52
52
38
8
2
Complementary therapist
39
51
41
8
0
Other service user(s)
81
47
42
7
4
Family member(s)
110
38
35
20
7
Telephone helpline
42
38
28
21
2
Friends (not service users)
100
28
51
16
5
Mental health worker
(other than doctor)
76
28
33
33
7
GP
124
13
38
40
10
Psychiatrist
105
12
33
30
24
As doctors prescribe psychiatric drugs, it is
In the in depth interviews, we investigated why
reasonable to expect them to be the best source
so many people found their doctor so unhelpful.
of advice and support about coming off them.
We found there were often basic differences of
This table shows that they were actually less
opinion. People said their doctors were:
likely to be found helpful than any other group
of people from whom help was sought or
• more likely to see the drugs as beneficial
received. They were also more often thought to
• less concerned about the adverse effects
have made things worse.
• less likely to understand the desire to live
without them
They were rated especially poorly by people on
• more likely to doubt their ability to manage
neuroleptics. There were 21 people coming off
without them (especially mood stabilisers and
a neuroleptic who were not on another drug.
neuroleptics)
Eleven of them sought or received help from
• less likely to value alternative strategies and
their GP. Seven said the GP was not helpful or
sources of help and support.
made things worse. Ten sought or received help
from a psychiatrist. Eight said the psychiatrist was
not helpful or made things worse.
8
Additionally, doctors were often not well
informed about the possible effects of
withdrawal and the best way to go about it, or
On phoning Battle Against Tranquillisers
chose not to share this information with their
when thinking about coming off sulpiride
patients.
(a neuroleptic):
In contrast, people with specialist skills who had
“I phoned a few times and spoke to
no role in prescribing drugs, such as counsellors,
someone who really seemed to
were often rated highly, as were
‘nonprofessionals’, such as other service users
know what they were talking
and family members. They could be encouraging,
about, and was able to give me
supportive and understanding. It was less
some moral support and talk things
common to find examples of them giving specific
information or expert advice about the actual
through in a logical way.”
process of withdrawal, but this was highly valued
when offered.
We also asked what other forms of help were
useful. The internet was rated highly as a source
of information and support, but it was rarely
used by people on neuroleptics or mood
stabilisers, the people who got least help from
their doctors. Books and pamphlets were also
helpful in offering information and inspiration
about alternatives to psychiatric drugs, but few
people had found anything specific about
coming off. Activities, such as relaxation
methods, meditation, exercise and expressing
creativity were highly valued as means of getting
through difficult times and providing positive
alternatives to medication, as were spiritual and
religious beliefs and practice.
On seeking help from a psychiatrist to come off
lithium (a mood stabiliser):
“I found his attitude extremely
depressing. He never gave me any
On finding a website about withdrawal from
grounds for hope or optimism. He
Seroxat (an SSRI):
made me feel like I was going to
“I know it’s an awful thing to say,
be stuck out of work and on
that other people are suffering as
medication, and just about
well, but it’s nice to feel you’re not
mumbling through for the rest of
alone and not mad or anything.”
my life. And I was 41 at the time.”
This woman later came off successfully with
On helpful bookshop staff who were
support from another psychiatrist.
knowledgeable about self-help books:
“Next time I won’t go to the doctor,
I’ll go down to Waterstones.”
9
Factors that influenced success
But they do demonstrate that there are no firm
rules about what works. One person who
Length of time on the drug emerged as the factor succeeded in coming off all at once had been on a
that most clearly influenced success in coming off. depot injection for over 11 years.
Four out of five people (81 per cent) who were
on their drug for less than six months succeeded
We knew that many people had tried coming off
in coming off. In contrast, less than half (44 per
against their doctor’s advice or without telling
cent) of people who were on their drug for more
their doctor. We wanted to know how well they
than five years succeeded. (Just over half of
did, compared to people who did involve their
people who were on their drug for between six
doctor. The results are shown in table five.
months and five years succeeded.)
We can see that whether the doctor was involved
Our research did not demonstrate that speed in
made very little difference to success. Just over half
coming off made a difference to success. People
(53 per cent) of people who did not involve their
who came off slowly were not significantly more
doctor succeeded, compared to 44 per cent of
likely to succeed than people who did it all at
people who did. (These figures were obtained by
once. But people who came off their drugs all at
combining the first two categories to give 53 per
once were more likely to have been taking them
cent and the next three to give 44 per cent).
for a short time than people who came off slowly.
These findings challenge some common
When we looked just at people who had been on
assumptions. The first assumption is that people
an SSRI antidepressant for one to five years, we
should not attempt to come off psychiatric drugs
found that they were more likely to succeed in
without consulting their doctor. The second
coming off if they took more than a month to
assumption is that doctors know better than their
do so. The results of our research certainly do not
patients whether they can safely come off
challenge advice that it is best to come off slowly.
medication.
Table five
How the decision was made and how successful it was - all participants
Number of
Percentage
people in
completely
this category
successful
Decided against advice of doctor
24
50
Decided without telling my doctor
54
54
I decided and my doctor accepted
55
40
Joint decision between me and doctor
27
56
My doctor decided and I accepted
17
41
Other
23
52
Total
200
49
Lessons learned from trying, unsuccessfully, to
come off olanzapine (a neuroleptic) all at once:
“If I’m going to do it at all, it’s
going to be piecemeal, in stages,
and it has to be done with a
consortium of experts and not just a
one man show.”
10
Learning from experience
Benefits of coming off
People’s attempts to come off their drugs
Despite a range of experiences, people who
resulted in varying degrees of success. Some
succeeded in coming off and staying off their
started but felt unable to continue. They were
drugs were frequently enthusiastic about the
not always sure if their difficulties were a
benefits, which encompassed a vast range of
withdrawal syndrome or distress re-emerging as
feeling and functioning. Most commonly
they came off the drugs. Others came off their
mentioned, by about one third of the people who
medication but went back on again. Some people succeeded, was being able to use their minds
were making slow progress in coming off and
better – for example, being more alert, better
were hopeful of eventually succeeding. Others
able to concentrate or improved memory. A
had succeeded in coming off and staying off their similar number mentioned having their lives back,
drugs, although some were prepared to go back
and feeling more alive or human. Around one
on them if necessary.
fifth mentioned one of these benefits: taking
back power and control over their lives; no longer
People who didn’t succeed in coming off had a
experiencing the adverse effects of medication;
variety of explanations. Some were
or knowing they could manage without drugs.
straightforward. For example, some people
thought it showed they needed their medication.
One man decided he had come off too quickly
and without support. Others were less sure,
Benefit of coming off Valium (a minor
wondering if they had become so used to the
tranquilliser):
drug that they simply couldn’t manage without it. “My beaten up old car goes for its
They also had to decide whether to try again and, MOT in January every year and,
if so, what to do differently. One woman decided
to prioritise other ways of pursuing her recovery,
when I was taking the medication,
such as using psychotherapy. A man who tried
I used to stand there watching
coming off olanzapine (a neuroleptic) was hoping every single move the mechanics
for better services for people wanting to
withdraw from psychiatric drugs, based on the
were making, listening to every
lessons learned by people who had succeeded.
little squeak. But after I stopped
taking the medication, I just took it
Undoubtedly, trying and failing could be painful.
One man had been on medication for 45 years
round there, went away and came
and said it was his life’s ambition to come off it.
back again – quite a difference.”
He succeeded for a month and had some intense
and exhilarating experiences but ended up being
sectioned.
On coming off Largactil (a neuroleptic):
There was not always a clear cut division between
success and failure. One person had come off her
“A feeling of great exhilaration,
drugs but it did not feel like a success because she
was struggling with her feelings. Another had to
a feeling of getting my power back
go back on medication but the new drugs suited
and being able to do things I
her better than the one she had come off.
couldn’t do before.”
On becoming depressed after coming off
Cipralex (an SSRI):
“The experiment was successful to
the extent that it emphasised the
need for some antidepressant
medication.”
11
4. Action and recommendations
Action
“We welcome this significant
research highlighting the
The preliminary findings of this research became
available in December 2004. They were discussed
importance of offering patients
in a seminar attended by people from many
with psychiatric illness genuine
interest groups, who helped to draw up the
choice and involvement in decisions
recommendations. They have also been circulated
to relevant professional bodies and presented at
about medicines.”
Mind’s annual conference in March 2005.
Joanne Shaw, Director of Medicines Partnership,
Through Mind’s action, they have already made
a Department of Health programme aimed at
an impact.
helping people to get more out of medicines
Evidence that doctors were not good judges of
who could successfully come off their medication
Recommendations
was sent to the pre-legislative scrutiny committee
on the Draft Mental Health Bill. Mind will
How can people who want to or are willing to
continue to use this research to support the case
come off psychiatric drugs be helped to do so in
against compulsion in the community.
the best way?
Mind has revised its own standard caution against Good practice should be based on respect and
coming off without medical advice. As doctors
information:
were found often to be ineffective in providing
information and support, the new advice will
Respect for service users’ rights to:
emphasise the importance of seeking information
and support from a wide variety of sources.
• make choices, including about how to
come off
Mind has produced a booklet, Making sense of
• receive information and support.
coming off psychiatric drugs, to fill the gap in
availability of information. (See inside back cover
Information for everyone involved about:
for details).
• possible adverse effects when coming off
Mind will continue to publicise the research, raise
• best ways to come off
awareness through training and conferences, and
• good ways to support someone who is
campaign for better information and support for
coming off
people wanting to come off psychiatric drugs.
A more detailed account of the Coping with
coming off research will be published as a book
“There is a desperate need for
in 2006.
information for people who want
to try coming off medication, and
“I found the research fascinating.
for informed support from mental
I am very interested in the cognitive health professionals and families
dissonance between the doctors
and friends so that the process can
and patients and also the finding
be as safe and effective as possible.
that the longer someone is on
This report should be essential
medication the harder it is to come
reading for anyone who takes or
off. I have never seen patient
prescribes psychiatric drugs.”
leaflets address this. There are also
David Crepaz-Keay,
big training implications for GPs.”
Senior Policy Advisor, patient and public
involvement, Mental Health Foundation
Andre Tylee,
Professor of Primary Care Mental Health
12
The following people can play a significant role
people through difficulties coming off drugs.
in supporting people to come off psychiatric
Mind would welcome dialogue between people
drugs:
working in mental health and substance misuse
to see if there are lessons to be learned about
GPs and psychiatrists need to be trained in
supporting people coming off psychiatric drugs.
service user perspectives on psychiatric drugs.
They should be encouraged to see decisions
This research has highlighted conflict between
about medication as being about negotiation,
psychiatrists, on the one hand, and people
with the service user having the final say.
diagnosed as having severe and enduring mental
illnesses on the other, over the long term use of
Nurses and pharmacists who have new roles in
psychiatric drugs. Mind would like to see more
supplementary prescribing should, like doctors,
debate between all interest groups on this issue,
be trained to understand service user
with the aim of enabling people who want to try
perspectives on psychiatric drugs and be well
coming off long-term medication to have their
informed about best practice in coming off.
right to do so respected and to be practically
supported even by professionals who may not
All other staff involved in developing and
agree with the decision.
implementing care plans, supporting and
monitoring service users, or offering specialist
Researchers need to pay more attention to
services should be willing to engage with service
withdrawal from psychiatric drugs. We believe
users about their experience of and views about
Coping with coming off to be the first substantial
the psychiatric drugs they take, including
piece of research to look at coming off the range
whether they want to come off them.
of psychiatric drugs from the service users’
perspective. It should certainly not be the last.
Voluntary organisations have played a vital role
As a priority, there is a need for more detailed
in uncovering and highlighting problems with
research into people’s experiences of trying to
psychiatric drugs, including difficulties with
come off neuroleptics and mood stabilisers.
withdrawal from minor tranquillisers and SSRI
antidepressants. They have also taken the
Contact details of organisations mentioned in
initiative in providing information and support
this report
to service users. Much of this work has benefited
from being led by people with personal
Council for Information on Tranquillisers and
experience of coming off psychiatric drugs -
Antidepressants (CITA)
experts by experience. Their role should be
JDI Centre
strengthened through greater funding for
3-11 Mersey View
helplines, websites and pamphlets.
Waterloo
Liverpool
Mind proposes that Primary Care Trusts
L22 6QA
(England) and Local Health Boards (Wales)
Tel: 0151 474 9626
should commission voluntary organisations to
Helpline: 0151 932 0102
run projects to offer independent advice and
mutual support for all people on psychiatric
Battle Against Tranquillisers
drugs, whether staying on or coming off. These
PO Box 658
projects should aim to be led by experts by
Bristol
experience.
BS99 1XP
Tel: 0117 966 3629
Families and friends may have a significant role
Web: www.bataid.org
in helping service users to think about coming
off and supporting them through it. This role
needs to be recognised by mental health
The new information booklet Making sense of
workers. Family members and friends should be
coming off psychiatric drugs provides
involved to the extent the service user wants.
information about coming off different
psychiatric drugs, with references to other
Organisations working in the field of substance
reading and organisations, and is available from
misuse have a great deal of experience in
Mind Publications, details overleaf.
providing programmes and services to help
13
Making sense of coming off psychiatric drugs
is available from:
Mind Publications
15-19 Broadway
London E15 4BQ
Tel: 0844 448 4448
Email: publications@mind.org.uk
Online shop: www.mind.org.uk/shopping
There is also more information available on
Mind's website www.mind.org.uk and from
MindinfoLine, details below.
For more information about any of the issues
raised in this report, including details of your
nearest local Mind association and local services,
contact Mind’s helpline, MindinfoLine on 0845
7660163, Monday to Friday 9.15am to 5.15pm.
Speech impaired or deaf enquirers can contact us
on the same number (If you are using BT Text
direct, add the prefix 18001). For interpretation,
MindinfoLine has access to 100 languages via
Language Line.
Mind
15-19 Broadway
London
E15 4BQ
T: 020 8519 2122
F: 020 8522 1725
w: www.mind.org.uk
Registered charity number 219830
Registered in England number 424348
ISBN 1-903567-65-3
September 2005
