Learning disability and mental health
Working in partnership with
psychiatrists and carers
This leaflet is aimed at:
- the carers of people with learning disability
who provide continuing help and support, without payment, to a
relative or friend
- the doctors and other members of the team
involved in the healthcare and treatment of a person with learning
- paid care support workers offering direct
support to people living in their own home or in residential
It suggests ways of improving communication and
partnerships between carers, health professionals and people with
learning disability and mental health problems.
For the carer
When a person with learning disability has mental
health problems, carers may notice changes in their general health
and well-being, and in their behaviour.
As a carer you may notice:
- changes in appetite or sleep
- loss of skills
- changes in behaviour or mood
- loss of interest in daily activities.
Finding out what is wrong
A lot will depend on how much the person can
communicate about how they feel or any pain they have. Usually,
careful observation by a carer who knows the person well is also
needed. For this reason, the doctor will need to talk to a close
relative, or regular support worker as well as the person
themselves. Sometimes, it is difficult to know if the symptoms are
due to a physical or mental health problem. The health professional
will try to understand the person’s recent history, and any changes
in their circumstances. They will consider all possible causes of
As a carer you will need to help the health
professional distinguish between behaviour which is part of the
learning disability, and any changes which make you think something
else is the matter.
- Jot down the things you are worried about, or
which have changed, however small they are.
- Make sure you write down the date and the time.
A diary like this soon builds into a picture of how a person is
It can help you decide what to tell the
doctor. It can also help you detect their reactions to drugs
or other treatments which might not otherwise be noticed. It can
become a record of the whole illness, and this can be very useful
if the person becomes ill again.
Tips for carers
In partnership with your doctor and the health care
Good communication between a doctor, members of the
health care team, the person with a learning disability and their
regular carers is important, but it takes time and effort. In
England, everyone with a learning disability is encouraged to have
a Health Action Plan. The person can ask for help to decide what to
put in their own Health Action Plan. They may need a health
facilitator to work with them and their carers and/or paid support
worker on what needs to happen to keep them healthy.
Sometimes, a family carer or support worker will be
the health facilitator. Sometimes, it will be a member of the
community team for people with learning disability, or a health
professional working in the general practitioner’s surgery. A
Health Action Plan may be about the support a particular person
needs to keep healthy, or may be drawn up to support a planned
Questions to ask the doctor
What does the diagnosis mean?
Can you explain it in a way that we will
there any treatments?
Are there other things
we can do to help ourselves?
these health needs be included in a Health Action
What can we expect in the near future and over
often should we come and see you?
||Do you have any easy to read, written, illustrated or
video/audio material on this illness? If not, who
anything that we can change at home to make things easier or
Are there any organisations or
community services that can help?
Which health service worker is our main contact
for guidance and advice?
- Remember to arrange
your next visit before you leave.
The following advice may help you
prepare for follow-up visits to the doctor.
Before your visit:
During your visit:
- Keep track of changes in the person's behaviour and
medication in a notebook, along with any concerns or questions that
have arisen since you last visited the doctor.
- Look at all the information you have collected
since your last visit. Ask the person you care for what they want
to say to the doctor, or if they have things they would like you to
discuss. Write down your top concerns in the diary with the date.
Writing down this information means you do not have to worry about
remembering it, and you can be sure to talk about the things that
matter most during your visit. For example, this may include
- changes in symptoms
- side-effects of medicines
- general health
- mental and emotional health
- carer’s health
- help needed.
- If you do not understand something, ask
questions until you do. Don’t be afraid to speak up. Do encourage
the doctor to explain things directly to the patient in a language
they can understand.
- Take notes during the visit. At the end, look
over your notes and tell the doctor what you understood. This gives
the doctor a chance to correct any information or repeat something
that was missed.
Tips for carers – dealing with doctors
Doctors can be reluctant to discuss a person’s
diagnosis with their carer as there is a duty of confidentiality
between a doctor and the patient. However, when the person who is
ill is not able to understand what is happening, doctors usually
recognise the need to involve the carer in discussions and
If the doctor is still unwilling to involve you as a
carer, there are a number of things you can do:
- Ask the person you are caring for if you can
stay with them when he or she sees the doctor. If the person
consents, then the doctor will probably agree.
- Talk to other carers as they may have some
- Try to talk to other health professionals, such
For the professional
As a professional working with people with learning
disability and their carers, we hope that the following is a
helpful guide to good practice.
By the very nature of the job, family carers may be
extremely tired. If they have been waiting for an appointment
while they care for a person, they may be emotionally exhausted as
- Remember that the family carer will know more
about the patient when well than anyone else.
- The patient will have more difficulty in
explaining how they feel, not just because they lack the speech,
language or understanding in which to do it, but because they have
always had a disability. They do not know what it feels like not to
- It may be difficult for you to understand
what is usual for them, and how their current illness is making
them feel or behave differently. It’s too easy to put
everything down to their learning disability.
||When doing an assessment, do
||Try to see the person with learning
disability and the carer separately, as well as seeing them
Try to see them at
||Do you allow enough time
Obtain a life
history and a family history?
Remember to ask about
any losses, possible abuse or other traumatic life events?
Leave time for
questions and discussion?
Explain how you
arrived at a diagnosis?
||In the management of the illness,
Talk about the
possible side-effects of drugs?
asking about the carer’s health – both physical and emotional?
Discuss how to meet
the health needs of both the person with learning disability and
Points to remember
- Everyone needs some respite.
- Make it clear that you will be happy to talk to
any other members of the family.
- Tell everyone you see about voluntary
organisations which can offer information and put people in touch
with each other.
- Make it clear that you are always
- Give a telephone number where you can be
reached for further questions.
- 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 or
specialist, send copies to the carer and an easy to read letter for
- Try to talk to other professionals on the
telephone as well as in writing.
Mencap Direct Telephone: 0808 808 1111; Email:
UK’s leading learning disability charity working
with people with learning disability, their families and
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.
Hft: creative ideas, fulfilling
Hft is a national charity supporting people with
learning disabilities and their families. Everything we do focuses
on helping the people we support live the life they choose.
The Royal College of Psychiatrists has published
a series of picture books for use by people with learning
Books Beyond Words, these books are produced to
make communication easier and enable discussion about difficult
topics. Tel: 020 7235 2351 ext. 6146.
Health resources for people with learning
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
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 author: Professor Sheila Hollins
© June 2010. Review date: June 2012.
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
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Please note that we are unable to offer advice on individual cases. Please see our
advice on getting help.
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