Severe mental illness (psychosis)
Introduction
This leaflet is aimed at:
- the carers of people with severe mental illness
(psychosis) who provide continuing help and support, without pay,
to a relative, partner or friend;
- the psychiatrists and other members of the
mental health team involved in the care and treatment of the person
with severe mental illness.
It suggests ways of improving communication and
liaison that allow mutual respect and real working partnerships to
develop from the point of diagnosis.
For the carer
About psychosis
Psychosis is a word used to describe symptoms or
experiences that happen together. Each person will have different
symptoms, the common feature is that they are not experiencing
reality like most people.
Some people only have a single episode and make a
full recovery; for others, it is a longer process. As 1 in 10
people with psychosis commit suicide, it is important to recognise
the symptoms of depression. A person with psychosis may:
- hear, smell, feel or see things which other
people do not (hallucinations)
- have strange thoughts or beliefs which may make
the person feel they are being controlled, persecuted or harassed
(delusions)
- have muddled or blocked thinking (thought
disorder)
- at times seem unusually excited or withdrawn
and avoid contact with people
- not realise that there is anything wrong with
themselves (lack of insight).
Early changes in the person’s behaviour
As a carer, you may notice that the person:
- has problems understanding reality and thinking
clearly
- talks to themself and/or appears to be
listening to something else
- has problems communicating effectively
- loses interest in their personal appearance and
life in general
- is restless, irritable or tense and
anxious
- avoids other people
- is aggressive or violent (in a minority of
cases)
- be very high ‘manic’ or very low ‘depressed’,
or swing from one state to the other (bipolar disorder).
Making a diagnosis
There is no single specific test for psychosis as
the symptoms are common to a number of disorders, including
schizophrenia, bipolar disorder and psychotic depression.
A diagnosis is made by talking to the person and a
close relative or friend to get an understanding of the person’s
history, as well as considering all other possible causes for the
symptoms.
Treatments
Medication should be started as soon as possible to
help the most disturbing symptoms and can make it possible for
other kinds of help to work. Other treatments used together with
medication, or on their own, include talking therapies
(psychotherapy), and Cognitive
Behavioural Therapy (CBT). Family Therapy can be an important
part of the care package.
As the carer, you may feel:
- guilty
- worried that you are losing the person you
knew
- wonder if anyone else in the family will be
affected
- exhausted by caring and ensuring that the
person is safe
- scared about admitting there is a problem
- worried about the long-term outcome for the
person
- worried about coping and getting help
- worried about the long-term financial
responsibilities of caring
- worried about people’s negative attitudes
towards mental illness and the stigma associated with it.
Tips for carers
In partnership with your doctor and members of the mental
health team
Good communication between a doctor, members of the
mental health team, a person with psychosis and their carer is
important, but takes time and effort. Forming a positive, long-term
relationship with all the staff and doctors involved in the care of
the patient is especially important if the condition is
long-term.
If the person has the symptoms for the first time,
it is important to see the GP as soon as possible. The GP, or a
member of the Community Mental Health Team (CMHT), will make the
initial assessment before referring the person to a specialist. If
the person refuses to see a doctor, the carer or another trusted
person should try to persuade them to accept professional help.
The person may not need to go into hospital, as
assessment and treatment can now be done at home by CMHTs.
Some of the specialists you are likely to come across are:
psychiatrists, psychologists, counsellors, occupational therapists,
social workers, community psychiatric nurses and support
workers.
Questions to ask the doctor
|
|
|
What does the diagnosis mean? |
|
|
|
Can you explain it in a way that I will
understand? |
|
|
|
Are there any treatments?
|
|
|
|
Where can I get information about medication and
possible side-effects? |
|
|
|
How
long will it take for the medication to work? |
|
|
|
Are there other things we can do to help
ourselves? |
|
|
|
What can we expect in the near future and over
time? |
|
|
|
Will the person be able to continue in work or in
education? |
|
|
|
Is
it safe for the person to drive? |
|
|
|
Will the person I care for get better? |
|
|
|
How
often should I come and see you? |
|
|
|
Can you give me an out-of-hours emergency telephone
number? |
|
|
|
Do
you have any written material on this disorder, if not who
does? |
|
|
|
Is there anything that we can change at home to
make things easier, or safer? |
|
|
|
Are
there any organisations or community services that can
help? |
|
|
|
Which health service worker is my main contact for
guidance and advice? |
-
Remember to arrange your next appointment before you
leave.
Regular well prepared visits to the doctor, or
other members of the mental health team, will help get the best
care for both of you.
Advice which will help you prepare for follow-up visits
- Keep track of changes in behaviour and
reactions to medication in a notebook, along with any concerns or
questions since you last saw the doctor.
- Look at the information you have collected
since your last visit and write down your top three concerns. This
will make sure that you remember to talk about the things that
matter. Your concerns may include questions about:
- changes in symptoms and
behaviour
- side-effects of medication
- general health of the patient
- your own health
- additional help needed.
During your visit
- If you do not understand something, ask
questions. Do not be afraid to speak up.
- Take notes during the visit. At the end, look
over your notes and tell your doctor what you understood. This
gives your doctor a chance to correct any information or repeat
something that has been missed.
Further tips for carers when dealing with doctors and other
members of the mental health team
Doctors and healthcare professionals can be
reluctant to discuss a person’s diagnosis or treatment with the
carer. There is a real duty of confidentiality between the doctor
and the patient. If the person is too ill to understand what is
going on, doctors will usually involve the carer in discussions and
decisions. (See our leaflet Carers and confidentiality in mental
health).
If the doctor is unwilling to involve you as the carer, there
are a number of things you can do:
- ask
the person you care for if you can be with them at some of their
appointments, or for a part of their appointment
- talk with other carers as they may
have some helpful suggestions
- try to talk to other members
of the mental health team
- contact mental health charity
helplines (list at end of leaflet).
Don’t forget to take care of yourself and make time for
you
It is important that you also take care of your own
needs, talk about your worries and don’t struggle alone. If you
live in England, you may be entitled to a carer’s assessment to
identify your needs. This can be arranged through the doctor or a
member of the mental health team. They should also be able to refer
you to your local carers’ support organisation.
For the professional
As a professional working with people with
psychosis and their carers, we hope that the following is a helpful
guide to good practice.
| |
|
When doing an assessment, do
you? |
|
|
Try to see the patient and the
carer separately, as well as together
|
|
|
|
Try to
see them at home first |
| |
|
Do you allow yourself enough time
to? |
|
|
|
Listen,
ask, listen |
|
|
|
Obtain
a life history |
|
|
|
Leave
time for questions and discussion |
|
|
|
Explain
how you arrived at the diagnosis |
|
|
|
Talk
about the prognosis |
| |
|
In the management of the illness,
do you? |
|
|
|
Discuss
possible treatments |
|
|
Talk about the possible side-effects of drugs |
|
|
Talk about the importance of the patient maintaining positive
social roles, work or education goals, if possible |
|
|
|
Spend time
asking about the carer’s health – physical and emotional |
|
|
|
Discuss how
to meet the care needs of both the patient and the carer. |
Points to remember
- Everyone needs some respite.
- Make it clear that you will be happy to talk to
other members of the family.
- Refer everyone you see to a relevant mental
health or carer organisation.
- Make it clear that someone will always be
available.
- Give an out-of-hours telephone number.
- Make sure that there is a named professional
person whom the family can contact at any time.
- When you write your letter to the GP, consider
sending a copy to the patient and carer.
- Try to talk to the GP on the telephone as well
as writing.
- Make sure the patient and the carer have
adequate information about their care and treatment.
Further help
MIND
Mindinfoline: 0300 123 3393. Publishes a wide
range of literature on all aspects of mental health.
Rethink
National Advice Service: 0300 123 3393. Voluntary
organisation that helps people with severe mental illness, their
families and carers.
Bipolar UK
Tel: 020 7931 6480. National user-led organisation
providing support and information.
Carers'
Trust
Carers Trust is a new charity which was formed by the merger of
The Princess Royal Trust for Carers and Crossroads Care in April
2012. Carers Trust works to improve support, services and
recognition for anyone living with the challenges of caring,
unpaid, for a family member or friend who is ill, frail, disabled
or has mental health or addiction problems. With our Network
Partners, we aim to ensure that information, advice and practical
support are available to all carers across the UK.
One of the aims of the Partners in Care campaign was to show
that if all those involved in the care of people with mental health
problems or learning disabilities can work together, a trusting
partnership can be developed between carers, patients and
professionals which will be of benefit to all.
Original authors: Dr Mike Launer and Sheena Foster
Editor: Dr Philip Timms, chair, Royal College of Psychiatrists'
Public Education Editorial Board.
© April 2013. Review date: April 2015. Royal
College of Psychiatrists. This leaflet may be downloaded, printed
out, photocopied and distributed free of charge as long as the
Royal College of Psychiatrists is properly credited and no profit
is gained from its use. Permission to reproduce it in any other way
must be obtained from the Head
of Publications. The College does not allow reposting of its
leaflets on other sites, but allows them to be linked to
directly
For a catalogue of our materials contact
The Leaflets Department, The
Royal College of Psychiatrists, 17 Belgrave Square, London SW1X
8PG.
The Royal College of Psychiatrists is a
charity registered in England and Wales (228636) and in Scotland
(SC038369).
Please note that we are unable to offer advice on individual cases. Please see our
FAQ for
advice on getting help.
Please answer the following questions and press 'submit' to send your answers OR
E-mail your responses to dhart@rcpsych.ac.uk
On each line, click on the mark which most closely reflects how you feel about the
statement in the left hand column.
Your answers will help us to make this leaflet more useful - please try to rate
every item.
Did you look at this leaflet because you are a (maximum of 2 categories please):
Age group (please tick correct box)