Eating disorders
working in partnership with
psychiatrists and carers
Introduction
This leaflet is aimed at:
- the carers of people with an eating disorder
who provide continuing help and support, without payment, to a
relative, partner or friend;
- the psychiatrists and the members of the mental
health team involved in the care and treatment of a person with an
eating disorder.
It suggests ways of improving communication and
partnerships when the person has first been diagnosed.
For the carer
About eating disorders
Eating disorder is a term used to cover disorders, such as
Anorexia and Bulimia Nervosa, Binge Eating and Eating Disorder Not
Otherwise Specified. These can vary in severity and there are a
range of treatments available.
Changes in the person’s behaviour
As a carer you may notice:
- a change in body weight
- secretive behaviour around food
- changes in mood or personality
- loss of interest in hobbies and friends
- a tendency to isolate oneself
- changes in eating patterns
- tension in relationships and general
irritability
- sensitivity about body weight and shape,
including excessive weighing
- smoking more, or chewing gum to keep weight
down
- increased exercise.
Making a diagnosis
There are clear criteria for diagnosing each eating
disorder. 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 of the
symptoms.
As a carer you may feel:
- scared about admitting there is a problem
- exhausted by caring and trying to ensure the
person is eating
- anxious about the person’s physical state
- scared that this is your fault, or that
something dreadful has happened to cause this
- angry that the person is so secretive or is
perhaps lying about their problems
- powerless to help
- confused about what treatments are available,
and where to get them
- that you want the person to be treated
immediately
- worried that the person won’t accept
treatment
- worried about the stigma attached to eating
disorders
- worried about the risk of suicide, death or
severe injury.
Tips for carers
In partnership with your doctor and members of the health
team
Good communication between a doctor, the key
worker, other members of the mental health team, the person 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 person is
especially important in the treatment of Anorexia Nervosa, which
can take up to five years. Treatments for other eating disorders,
depending on severity and nature of the condition, can be more
rapid.
Family support is particularly important as much
work needs to be done outside treatment sessions.
Treatment
Treatment usually starts with the GP who will
consider the patient’s history, weight and height, and try to
establish what the problems and behaviours are around managing food
and weight. The GP may then refer the person to the Community
Mental Health Team (CMHT), or sometimes to a specialist. A quick
referral can often be important, as non-NHS treatment has financial
implications.
A CMHT will repeat the GP assessment, but in more
detail, to establish if a referral to a specialist is
necessary. Specialists you are likely to come across include:
psychiatrists, nurses or nurse therapists, psychotherapists,
occupational therapists, psychologists, dieticians.
Specialist teams can offer outpatient assessment
appointments. These may be carried out by one or more members of
the team, and may take more than one appointment.
Questions to ask at the assessment
 |
|
What is the diagnosis?
|
|
|
|
What
treatments are available? |
|
|
|
Can you
explain the disorder, and how long it will take for treatment to
work? |
|
|
What medication is available and what may be the
long-term effects?
|
|
|
|
Are there
strategies to help that can be used at home? |
|
|
|
How often will the patient be seen?
|
|
|
|
How often
should the carer attend consultations? |
|
|
|
Do
you have any written materials on this disorder, if not who
does? |
|
|
|
Are there
any community facilities or groups that can help? |
|
|
|
Is
there a local eating disorder association? |
|
|
|
Who is
the key worker? How do I contact them? |
|
|
|
If the person deteriorates physically or
psychologically, what is the ‘out-of-hours’ crisis
plan? |
- Remember to arrange
your next visit before you leave.
Aftercare programme
The carer needs to have access to an aftercare
programme, including explanations about an eating plan, how to
treat meal times, expected weight, gain targets and how to cope
with difficult behaviour, including suicide threats.
Accepting help
Treatment for an eating disorder is most effective
when the person is able to accept help. Waiting for a person to
recognize the need for treatment can be a frightening and
frustrating time. Ask the specialist team about strategies to help
motivate the patient to accept treatment.
Advice which will help you prepare for follow up
visits
- Jot down your view of how things have been,
clearly listing for yourself any points of concern.
- If possible, share this with the person before
you attend the appointment.
- Review all the information that you have
collected since your last visit and write down your main
concerns.
- Remember to talk about the things that
matter.
Your concerns may include:
- questions about changes in symptoms
- side-effects of medication
- general health of the person
- your own health
- additional help needed.
It is important to agree, beforehand, with the
person what they would like you to know about their treatment and
what they want to keep confidential.
- Has their key worker discussed confidentiality
with them?
During your visit
- If you do not understand something, ask
questions. Don’t be afraid to speak up.
- Ensure there is agreement between you and the
team regarding care and treatment.
- Take notes during the visit. At the end, look
over these 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
health professionals
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 doctor and
patient. Have a conversation about confidentiality at regular
intervals. By continually checking what the patient is happy to
share, and stating what your needs for information are as the
carer, a compromise can usually be reached. (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 are caring for if you can
stay for part of their appointment
- talk to other carers as they may have some
helpful suggestions
- contact B-eat’s helplines and carers’
networks
- develop a relationship with your key
worker.
Don’t forget to take care of yourself
- Share your worries with trusted friends or
family members.
- Don’t bottle your feelings up – there is
nothing wrong with a good cry.
- Try not to let the symptoms of the eating
disorder take over your life – don’t become isolated.
- If you are anxious and are unable to sleep, go
and see your GP.
- Do not put your life completely on hold, and
try to avoid being drawn into their world.
For the professional
As a professional working with people with an
eating disorder and their carers, we hope that the following is a
helpful guide to good practice.
When making an assessment, do you?
|
|
|
Try to see the person 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 |
|
|
|
Spend
time asking about the carer’s health – physical and
emotional |
|
|
|
Discuss how to meet the care needs of both the person
with an eating disorder 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 carers to the B-eat or other carer
organisations.
- 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.
- Make sure the patient and carer have adequate
information about their care and treatment.
- When you write to the GP, consider sending a
copy to the carer.
- Think about talking to the GP as well as
writing.
Further help
B-eat
Adult Helpline: 0845 634 1414; Youth Helpline: 0845
634 7650; Provides information and help on all aspects of eating
disorders.
Young Minds
Parents Information Line: 0808 802 5544; Provides
information and advice to young people, parents and
professionals.
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.
This leaflet was produced as part of the
Partners in Care campaign, a joint initiative between the Royal
College of Psychiatrists and The Princess Royal Trust for
Carers.
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: Beverley Murphy, Veronica Kamerling and Peter
Tihanyi
Carer input: The Princess Royal Trust for Carers
Editor: Dr Philip Timms, chair, Royal College of Psychiatrists'
Public Education Editorial Board.
© February 2011. Review date: February 2013.
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 public education materials or copies of our
leaflets contact:
Leaflets
Department
The Royal College of Psychiatrists
17 Belgrave Square, London SW1X 8PG. Tel: 020 7235 2351
ext. 6259
Charity registration number (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)