The West Kent & Medway Early Intervention in Psychosis Service

Kent and Medway
NHS and Social Care Partnership Trust
The West Kent & Medway Early Intervention
in Psychosis Service
Better Together

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What is psychosis
‘Psychosis’ is the term used to cover a number of experiences, including
hearing “voices”, having unusual or frightening ideas, and a loss of energy or
drive. Psychosis can produce a change in thinking (e.g. jumbled thoughts),
feelings (e.g. feeling low or lacking emotion) and behaviour (e.g. isolating
yourself). It is most common for these problems to begin in people aged
between 14 and 65 years. It is not uncommon and approximately four out of
every 100 people will experience a psychotic episode at some time in their
lives. There is much that can be done to help, and most people make a full
recovery.
What causes psychosis
Some people have a greater risk of developing psychosis. There may be a
biological/genetic connection, i.e. having a family member who has
experienced psychosis can increase risk. However, many people who develop
psychosis have no history of psychosis in their immediate family. There are also
social and environmental factors that may increase risk, such as extreme
exposure to stress, illicit drug use (e.g. cannabis), abuse (i.e. physical, emotional
or sexual) and trauma. In other words there are a number of factors that may
make someone more vulnerable to develop psychotic problems. This is
referred to as the ‘stress-vulnerability model’.
Psychosis remains a complex condition that is not fully understood (for example,
we still do not know why some people develop psychosis and others don’t). It is
an illness that continues to be the focus of extensive research. The cause and
outcome of psychosis varies from person to person. The way we cope with
unusual experiences and how they affect us will influence the outcome.
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Effects of psychosis
Psychosis can influence the following:
Cognition – thought processes, ideas and memories, e.g. racing thoughts,
intrusive thoughts, problems with thinking
Feelings – mood changes, depression, anxiety, elation, paranoia, feeling
isolated and detached
Behaviour – unusual behaviour, or loss of interest and motivation;
Perception – possible difficulties in understanding and interpreting reality,
e.g. beliefs that have no clear basis
Personality – sense of self and identity, e.g. loss of identity
Myths and misconceptions
Psychosis is not…
• About having a split personality (i.e. Dr. Jekyll & Mr. Hyde)
• A condition that only affects certain types of individuals. In theory,
anyone – male or female, regardless of ethnicity – can develop
psychosis
• Always easy to spot. The early stages of psychosis are often confused
with other difficulties that many young people experience as part of
adolescence and growing up
• Always linked to aggressive or violent behaviour
One thing that can make it particularly difficult to come to terms with having
psychosis is the stigma attached to mental health problems. Misunderstanding
can lead to fear and discrimination. It is not surprising that people who
experience psychosis often feel they are “different” or “don’t fit in”, and that
they are not valued or respected. This in turn can lead to social withdrawal
and can become the most disabling feature of psychosis.
The Early Intervention Team can play a pivotal part in reducing stigma by
educating clients, families and friends, in addition to schools, colleges and GP
surgeries, about psychosis and about recovery.
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Symptoms may include…
Delusions – strongly held beliefs that are unusual or bizarre in nature. Quite
often beliefs are about being persecuted.
Hallucinations – unusual sensory perceptions in the absence of an external
stimulus, e.g. hearing voices when people are not around, seeing things that
are not there, having disordered smell, touch or taste.
Thought disorder – having trouble linking thoughts together, thought
broadcasting (e.g. “people can hear my thoughts”), thought insertion (e.g.
“people are putting thoughts into my head”), flight of ideas (e.g. jumping
from one topic to another).
Disordered speech – speech may be rapid and incoherent. There may be an
inability to make conversation.
These symptoms are referred to as positive symptoms, which are often
present in the acute/active phase of psychosis.
People experiencing psychosis can also have negative symptoms which
include the following:-
Social withdrawal – avoiding family, friends and social gatherings, staying in
bed or isolating oneself
Loss of motivation – lack of energy and drive to pursue activities, loss of the
persons usual experiences or behaviour
Loss of feelings for others – blunting of emotions and not feeling anything
Depression – Low mood that affects an individual’s social functioning and/or
activities of daily living
Loss of sense of pleasure – inability to experience pleasure in people, events
and objects
Self-neglect – poor self care and dietary intake
This list does not include everything – people can also experience other
strange or peculiar feelings that are not mentioned here.
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Different forms of psychosis
Drug-induced psychosis – An episode of psychosis can be triggered by taking
drugs (e.g. cannabis) or alcohol. These symptoms may disappear as the
substance wears off, but sometimes withdrawing from drugs and alcohol can
cause psychotic symptoms.
Brief reactive psychosis – Psychotic symptoms may arise suddenly in response
to a major stress in someone's life, such as a death in the family, a relationship
break-up, starting work or following an important change of circumstances.
Schizophrenia – This is the most common form of psychosis. ‘Schizophrenia’
refers to an illness in which the changes of behaviour or symptoms have been
present for a period of at least six months. Symptoms, severity and length of
illness vary from person to person.
Bipolar disorder – Also known as ‘manic depression’. This is a mood disorder
characterized by extreme highs (mania) and lows (depression). Psychotic
symptoms can appear as part of a more general disturbance in mood, but not
everyone who has bipolar disorder experiences psychotic symptoms.
Excitement and happiness can be associated with grandiose beliefs.
Depression can be associated with hostile and critical auditory hallucinations.
There are periods between these phases when someone is well and leading a
productive, filling life. Some famous people such as Stephen Fry and Paul
Merton have had this form of psychosis.
Schizoaffective disorder – This diagnosis is made when the clinical picture is
not 'typical' of either a mood disorder or schizophrenia, but the person has
concurrent or consecutive symptoms of both illnesses.
Psychotic depression – This is also a mood disorder, characterized by severe
clinical depression with psychotic symptoms, but without periods of mania.
Organic psychosis – Psychotic symptoms may appear to be due to a head injury
or a physical illness that disrupts the brain functioning, such as encephalitis,
AIDS or a tumour. There are usually other symptoms present, such as memory
problems or confusion. EIS is not suitable for people with psychotic symptoms
which arise from brain damage and organic brain disorder, including
dementia.
All of the above depend on the pattern of symptoms and difficulties
experienced at that time. As symptoms may not remain the same, a different
diagnosis could be given at different stages. Therefore, most health
professionals prefer to think in terms of a range of psychotic symptoms.
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The role of your care co-ordinator
Every client referred to the Early Intervention Team is allocated a Care Coordinator.
He or she will be a qualified mental health practitioner. Please ask
to speak to her or him regarding any questions you may have. A Care Coordinator
is there to meet regularly with clients and their families, to go
through care plans and discuss treatment and care. He or she will also
organise a care programme approach (CPA) meeting where the care plan will
be reviewed.
Treatments
Treatment for psychosis typically involves both medication and other
therapeutic elements.
Medication
The most common medication used to treat psychosis is a group of drugs
called atypical anti-psychotics also called neuroleptics. It is not possible to
know in advance which medication will suit or work best with someone and
therefore many medication adjustments may be required. The frequency and
quantity varies according to the type of medication prescribed. Don’t be afraid
to ask questions about medication.
Anti-psychotic medication can be taken in one of two ways: by tablet or
injection. Both are designed to help reduce symptoms and prevent them from
returning. Injections are often better for people who don’t like tablets or who
sometimes forget to take them – they give a slow release of medication and
are sometimes called “depots”. Anti-psychotic medication is designed to help
people with psychosis in two ways: to reduce psychotic symptoms and to
prevent those symptoms returning.
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Types of medication - tablet form (British National Formulary 2001):
NB: The figures given are according to ‘therapeutic range’ – doses will vary
depending on the individual.
Generic Name Commercial Name Dose
Amisulpride (Solian) 400-800mg
Clozapine (Clozaril) 200-900mg
Haloperidol (Serence) 1.5-30mg
Olanzapine (Zyprexa) 5-20mg
Quetiapine (Seroquel) 300-750mg
Risperidone (Risperidal) 2-8mg
Aripiprazole (Abilify) 5-30mg
Injection form:
Generic Name
Fluphenazine Decanoate
Flupenthixol Decanoate
Risperidone
Commercial
(Modecate)
(Depixol)
(Risperdal Consta)
Possible side effects of medication:
Common side effects include dry mouth, nausea, drowsiness, stiffness, or
restlessness. The newer generation of medications are generally much better
tolerated. However, if side effects are noticed it is important to inform your
care co-ordinator or doctor. Some people will get side effects with one
medication or dose but not with another. Working out which medication
and dose suits you is something that can be achieved between you and
your doctor.
Frequency of taking medication
Medication taken in tablet form is usually taken daily. How many times a day
will depend on the drug prescribed and the recommended dosage. Different
anti psychotics are associated with different dosages and different doses suit
different people. Dosages are also often determined by the type and number
of symptoms a person has and how much distress they are causing. This is
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often related to the stage of the psychosis. When psychotic symptoms are at
their strongest and most severe (often referred to as the acute stage) higher
quantities of the drug are needed to bring the symptoms under control.
However, when someone is in the recovery stage and symptoms are not as
distressing or have gone altogether the dosage can be lowered.
Medication given in injection form is usually administered by a nurse. Again,
the frequency of injections depends on the individual and varies from person
to person. Some people have one injection once a week but some people
have an injection every two weeks or once a month.
The length of time taking medication
This also varies from individual to individual and how long symptoms persist. It
is recommended that after a first episode of psychosis anti psychotic
medication should be taken for two years. However, this can increase to five
years in the event of relapse.
Other treatments
Individual psychological treatments
Cognitive Behavioural Therapy (CBT) has been proven to be effective in
reducing positive symptoms and distress. CBT looks at the relationship
between thoughts, feelings and behaviour, and provides people with
strategies to manage their symptoms and make sense of their experiences.
Some other therapy approaches (e.g., Solution-Focused) may also be useful in
some cases.
Family Interventions
Behavioural Family Therapy (BFT) involves members of a family, including the
client, being seen together for approximately 10 sessions. It primarily aims to
reduce stress, assist in solving current problems and to help understand one
another. Another approach that some families find helpful is Systemic
Therapy.
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Occupational therapy (OT)
Occupational Therapy is used to help with activities of daily living such as
shopping, cooking, or learning new skills to assist in working towards paid
employment or voluntary work.
Group therapy
Groups can be particularly helpful to counter the sense of aloneness that many
clients feel. EIS offers a range of groups, including: Activity-Focused Groups
(e.g., the walking group; the sporting recovery group); Support Groups (e.g.,
the Clients’ Support Group, or the Carers’ Group), and Social Groups.
Complementary therapies
Art, drama, music, meditation, relaxation, sporting activity and exercise,
acupuncture, aromatherapy and reflexology can all help to reduce anxiety and
stress and improve physical well being.
Drinking alcohol and taking drugs when prescribed antipsychotic
medication
Alcohol
Alcohol combined with anti-psychotic medication can increase levels of
sedation or drowsiness. Moderate use of alcohol doesn’t seem to trigger
psychotic symptoms. Try to drink no more than the healthy daily alcohol limit:-
Men – 4 units
Women – 2 or 3 units
One unit = ½ pint of lager, 1 small glass of wine, 1 shot of spirits
It is advised that you seek advice before driving on anti-psychotic medication.
ALWAYS AVOID BINGE DRINKING
Medication bought over the counter
It is generally safe to take painkillers, paracetamol, aspirin etc…when taking
anti-psychotic medication but please consult your doctor or care co-ordinator.
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Illegal street drugs
Cannabis, ecstasy and LSD can increase the symptoms of psychosis and can
also counteract the benefits of anti-psychotic medication.
Always speak to your doctor, care co-ordinator or chemist about all the drugs
you are taking to be sure.
Large amounts of nicotine and /or coffee can also trigger symptoms of
psychosis.
Recovery from psychosis
Recovery means different things to different people. It is not always about the
complete disappearance of mental distress and symptoms. For some, it means
learning to cope with difficulties, gaining control over ones life, achieving
goals, developing skills and fulfilling dreams.
Recovery from the first episode usually takes a number of months. People
with psychosis do recover, though if symptoms remain or return, the recovery
process may be prolonged. They can learn to manage their symptoms and live
independent, fulfilled lives in the community. The availability of family support
and other support systems tend to be crucial for recovery.
Recovery statistics
With sustained treatment, over 80% of individuals achieve remission of
symptoms from their 1st episode of psychosis within six months. A minority,
about 10%, need high levels of support and help for many years. Attention to
early relapse prevention is vital as two-thirds of people will relapse within
three years of first presentation, which can set a cycle of repeated relapse.
However, between relapses they will remain well and live a perfectly normal
life. Comprehensive programmes to detect and treat early psychosis and to
support young people with early psychosis promote recovery and
independence and encourage uptake of social, educational and employment
opportunities. Two years after diagnosis 90% of individuals report satisfaction
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with their employment, educational and social attainments, and less than 25%
of days out of role are taken in the two years post diagnosis. The earlier
psychosis is recognised, assessed and treated, the better the outlook!
Staying well – learning to recognise signs of relapse
Research suggests that relapse is common and more likely in the early years
after a first episode, with one in two people having a relapse within two years.
Therefore it is important to be aware of the early warning signs that are often
present before symptoms of psychosis emerge. These signs may occur days or
sometimes weeks before a psychotic episode. Being aware of early warning
signs can help prevent relapse and can help you feel in control of your illness
as opposed to the illness controlling you!
Early warning signs are usually individual to the person but there are often
similarities. Some typical early warning signs include:
• Feeling more tense, afraid and anxious
• Racing or jumbled thoughts
• Restlessness, feeling irritable
• Feeling confused
• Poor appetite, weight loss
• Memory difficulties and trouble concentrating
• Sleep difficulties
• Self neglect
Your parents and your care co-ordinator or another professional can help you
identify your early warning signs. They will help you complete a relapse
prevention plan, by looking back at your last episode and trying to recall what
the early signs were then.
If you feel you may be relapsing or experiencing unusual experiences similar to
your last episode try not to panic but don’t ignore them. Always talk to
someone you can trust about it and tell your care co-ordinator or someone
from the team. Refer to your relapse plan and try to do what it suggests.
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A relapse prevention plan
A relapse prevention plan is designed to establish how someone’s symptoms
may build up over time. It identifies early warning signs and possible triggers
to stress and also records important telephone numbers of people involved in
your care (see example on page 15). The EIS team recommend that all clients
have a plan to help them and their family/friends recognise signs of
deterioration in mental health as it allows for some control over relapses and
hopefully prevent them from happening. Furthermore, making use of a
relapse plan can often make relapses shorter and less disruptive. Being aware
of symptoms and how to manage them is fundamental to the recovery
process. If a relapse does occur it is important to stay positive and not to panic
or think you are failing.
As with all aspects of psychosis and recovery, a relapse plan is individual and
unique to the person however it may be helpful to think about some typical
early warning signs (i.e. feeling more tense or anxious, restlessness, low in
mood, confused and withdrawn) and triggers of psychosis (i.e. Exams,
working long hours, arguments with family or friends).
A relapse plan may include a combination of psychological and practical
coping strategies as well as medical treatments. It will usually be completed as
part of a care plan with your care co-ordinator or another mental health
professional. Some people find it helpful to have their relapse plan written on
small cards to keep in their purse or wallet so they can refer to them at any
time.
What helps
• Taking anti-psychotic medication on a regular basis if prescribed
• Talking to people you trust about your worries
• Be realistic! Goals should be reasonable and achievable
• Support from family and friends
• Participating in daily activities you enjoy
• Some structure and routine to your day
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• Keeping physically well. Recovery from psychosis is aided by a wellbalanced
diet, adequate sleep and regular exercise
• Hobbies and recreational activities that you enjoy and look forward to
• Talking to others that have experienced psychosis (attending a support
group may be helpful)
• Try to give yourself time and space when you need it (“me time”)
• Education about psychosis, trying to understand your symptoms
What doesn’t help
• Keeping things to yourself and not talking about the things that are
troubling you
• Avoiding contact with others/isolating yourself
• Excess alcohol consumption
• Use of recreational drugs (i.e. cannabis, speed, LSD, cocaine)
• Taking too much on/too much stress
• Negative thinking
An example of a relapse plan
Early warning signs
Think about changes in thoughts feelings and behaviour
• Disturbed sleep pattern
• Loss of motivation, feeling depressed
• Self-imposed isolation
• Poor concentration
• Self-neglect
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Triggers
Think about your past experiences of becoming unwell and things that make
you feel more stressed
• Exams
• Arguments with family and/or friends
• Use/increased use of alcohol/street drugs/prescribed medication
• Pressure at work
Things that help when I feel stressed
• Relaxation (having a bath)
• Talking to friends/family
• Exercise/sports activities
• Listening to music/watching a DVD
Relapse drill
Whenever I experience any of the early warning signs I will respond by:
• Staying calm
• Making contact with my Care Co-ordinator/EIS team/GP
• Speaking to a family member/friend
• Making an appointment for a medication review
IMPORTANT CONTACT INFORMATION
Care co-ordinator:_________________________________________________
Tel: _____________________________________________________________
EIS 01634 854547
GP: _____________________________________________________________
Tel: _____________________________________________________________
In the event of an emergency please contact your local accident and
emergency department.
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Building confidence after a first episode of psychosis
It is quite common that someone will lose confidence following a first episode
of psychosis. Understandably some people will feel uncertain about the future
and worry that the psychotic symptoms will return. Similarly, some people may
avoid socialising or going out and will find it difficult to motivate themselves to
go to work or school. With time and support from family, friends and
professionals, feelings of anxiety and hopelessness will disappear. However, if
these feelings become more intense it is important that the person seeks
professional help where they can and learn some coping techniques to cope
with these feelings.
There are a number of things that may help in increasing confidence. For
example, talking to someone you trust about your feelings if you can. It helps
to set goals but realistic goals, don’t try to run before you can walk! Try to do
things that mix pleasure with a sense of achievement (i.e. don’t just watch
television – tidy up, go to the gym, and then watch television). It often takes a
while to feel yourself again, so give it time.
Some personal experiences
From a parent’s point of view the knowledge that your child has a mental illness is one
of the most frightening experiences my husband and I have experienced. So different
from any physical illness that once diagnosed you know how to deal with, and roughly
how long that illness would last. Adam experienced his first episode of psychosis 6
months ago and we were lucky enough to be referred to the Beacon and the EIS team.
The help and support we have received as a family has been a life saver. There is always
someone at the end of a phone, the regular visits from EIS, however many times a week
is necessary, and weekly family meetings have been invaluable. We started attending
the meetings of the Carers’ Support Group in Dover in July. We have found this to be a
great way to share experiences with other parents and to talk freely with people who
really understand, as well as gaining knowledge of the illness from visiting speakers,
covering a variety of areas that were really interesting. We would just like to say,
therefore, a really special thanks to all the staff at EIS and Rethink Carers’ Support
Group for showing us there really is a light at the end of the tunnel.
Susie and Jim
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Hi, my name is Elizabeth. At the age of 14 I experienced an acute psychotic
illness. One day I went to school and everything was different. I thought my
parents had committed suicide and that my teacher was my father. I was
suffering with paranoia and severe anxiety; my behaviour was completely out of
character. When some teachers noticed this, they contacted my parents and
they came to school and took me to our GP. I had very confused thoughts and
the GP referred me straight away to the hospital where I had many tests
including an MRI scan, which looked at my brain to see if there was something
wrong, but there wasn’t. After 6 days in the William Harvey hospital, I was
transferred to Ticehurst, a mental health hospital. Although it took many months
for me to recover, I am now well, happy and back at school sitting mock exams
in preparation for GCSE’s.
My daughter is 20 years old and has been receiving help and support from EIS for 15
months. She has been one of the lucky ones and has not been hospitalized at all.
I strongly believe the support and care of the EIS that has been given has made it not
only possible for her to get professional help and support at home, but also the support
given to me, as a parent, has been a big part of my daughters recovery.
I knew nothing about psychosis before my daughter’s illness, I just knew I needed help.
The EIS team gave me support, strength and reassurance and information. It didn’t
matter if my question was one that others had asked loads of times before. We
mattered, they cared, they answered and helped me and my daughter.
The support given at the early stages was brilliant, they came to my house most days
this would give me some time out, do shopping, have a bath, go for a walk. I didn’t
know these people but they do their jobs so well and the reassurance they give a carer
is worth all the money they can get.
I’ve seen my daughter go from this stranger that did the weirdest of things and saw
dead people and heard voices to someone who understands what’s happened. Someone
who is happy to talk to the EIS about her illness, problems and difficulties she is
facing.
For me the relationships built up over this 15 months have given me the strength to
support my daughter and to continue my career.
Yes it has been hard, but not being on your own with this thing called psychosis
really makes it easier on all the family. Dawn
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Hello, my name is Joe and I experienced a psychotic episode a year ago when I
was 19, although at the time I did not realise what was happening to me. I
recall going out a lot, not sleeping much and not eating properly. I also
remember feeling quite paranoid and worried about people knowing who I was. I
started locking the doors at home, I felt people were out to kill me and
conspiring against me. I know I was very scared and did not want to be seen
by anyone. My parents became increasingly concerned about my bizarre
behaviour and took me to the local hospital. At this time I had become
extremely anxious and remember walking around clutching my heart to protect
myself. In the hospital I had a series of tests and physical examinations
including a CT scan. I started to hallucinate and thought the television and the
radio were talking to me.
I stayed in hospital for about three weeks, during which time I met some
people who talked to me and supported me. The ward staff were very good too
and used distraction strategies to help me feel better. The creative therapy class
was really useful. I was then introduced to the Early Intervention Team and
my Care Co-ordinator, who came out to see me at home with my family and
explained my symptoms in terms of a psychotic episode. She also assisted me
and my family in putting together a relapse prevention plan. I now know what
signs to look for to help prevent a recurrence which puts me and especially my
mum at ease. Without their help and the support from my family I probably
wouldn’t be where I am today.
Now I have returned to college and I am in my final year of a music
technology Diploma. I have a part time job where I have made some new
friends and I am saving up for a new guitar. I also enjoy socialising, playing
badminton and snooker. I still take anti psychotic medication but it is now a
minimal dose. I have become quite disciplined and ensure that I eat healthy and
take regular exercise. I think my experience has made me appreciate how
precious life is. It was a very frightening experience for me, but also for
everyone close to me. Overall, I have come to realise that no matter how bad
things are there is always light at the end of the tunnel!!
Patient Advice and Liaison Service (PALS)
You may have some concern about your care and treatment, but feel unable
to speak to our staff providing your care. You may just want some
information about local health services. You can contact the confidential
Patient Advice and Liaison Service (PALS). The PALS Team is available to help
you with any health difficulties you may have. The PALS Team can be
contacted by calling free: 0800 587 6757 (west Kent and Medway),
or 0800 783 9972 (east Kent). You can also e-mail: pals@kmpt.nhs.uk
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Comments on this leaflet
If you wish to comment on this leaflet call 01732 520441 or
e-mail communications@kmpt.nhs.uk
If you want to ask questions about
anything to do with your care or the
Trust, please ask a member of staff.
If you wish to make a complaint or pay a
compliment about the service you have
received, a leaflet is available to guide
you through the process. Please ask
a member of staff for a copy
KMPT.PI.leaf195 issued October 2012
For more information you can contact:
Trust Headquarters, 35 Kingshill Avenue,
Kingshill, West Malling, Kent ME19 4AX
Tel: 01732 520400
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Kent & Medway NHS and Social Care Partnership Trust
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Early detection
Treatment started rapidly
Short duration of untreated
psychosis
Continue Treatment
Optimal treatment: medication,
individual counselling, family
support, psychosocial treatment,
information
Supportive social network
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Stable living environment
Structure and calm
Meaningful occupations: study,
work, hobby
Someone to share experiences
and feelings with
Good physical health
Rapid disappearance of symptoms
Lasting absence of symptoms
Realistic expectations and hope for
the future
Acknowledgements
This booklet owes a great deal to Birmingham Early Intervention Service’s
Getting Back on Your Feet, and we are grateful to Max Birchwood,
Chris Jackson, Beth Reading and Jo Smith for their permission to draw
on their work. Any mistakes, of course, are our own.
West Kent & Medway Early Intervention in Psychosis Service
Canada House
Barnsole Road
Gillingham
Kent
ME7 4JL
Tel: 01634 854547
www.kmpt.nhs.uk/eis
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Kent & Medway NHS and Social Care Partnership Trust