The Triangle of Care Carers Included: A Guide to Best Practice in Mental Health Care in Scotland
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The Triangle of Care
Carers Included: A Guide to Best Practice
in Mental Health Care in Scotland
Ser vice
user
Profess
ional
Carer
Acknowledgements The creation of the Triangle of Care has taken many years and involved many people. It celebrates a developing awareness of carers’ needs and demonstrates that in different parts of the UK those people who work with and on behalf of carers are creating excellent resources and better outcomes. The original impetus to identify ways of ‘improving engagement between professionals and carers’ grew from a training programme created by carers in Devon. Similar initiatives grew in other places. The work of Lu Duhig in Avon and Wiltshire influenced this resource in many ways. We acknowledge the thought and effort which has gone into creating the best practice examples and are grateful for the generosity of carer champions in responding to requests to make them widely available. The Triangle of Care guide to best practice in Scotland, has been produced in partnership with agencies throughout Scotland including Scottish Government, NHS Scotland, NHS health boards, local authorities throughout Scotland, Mental Welfare Commission Scotland, Support in Mind Scotland, Scottish Recovery Network and many dedicated Network Partners, carers and professionals. Thank you to all who contributed to this Scottish version. Authors Alan Worthington, Carer Advisor Paul Rooney, National Acute Care Programme Ruth Hannan, Carers Trust (A Guide to Best Practice in Mental Health Care in England, Second Edition amendments) Karen Martin, Carers Trust Scotland (A Guide to Best Practice in Mental Health Care in Scotland, Scottish adaptations) Published by Carers Trust 32–36 Loman Street London SE1 0EH Tel: 0844 800 4361 Fax: 0844 800 4362 Email: info@carers.org Website: www.carers.org Carers Trust is a registered charity in England and Wales (1145181) and in Scotland (SC042870). Registered as a company limited by guarantee in England and Wales No. 7697170. Registered office: 32–36 Loman Street, London SE1 0EH. © Carers Trust 2013 The Triangle of Care Carers Included: A Guide to Best Practice in Mental Health Care
Contents
Foreword 2
Executive summary 3
Introduction 4
The rationale behind the key elements 10
Appendix 1: Triangle of Care self-assessment tool 24
References 34
1
Foreword
Carers are vital partners in the provision of mental health
and social care services. 1.5 million people care for
someone with mental ill health in the UK.
The original Triangle of Care guide was launched in July 2010 to
build on existing developments and good practice to include and
recognise carers as partners in care. It offered key standards and
resources to support mental health service providers to ensure
carers are fully included and supported when the person they care
for has an acute mental health episode; the inclusion of carers
benefits staff, carers and service users alike.
Carers Trust is the largest independent provider of carers support
services and we are delighted to be working in partnership with
several Scottish health boards as well as many Network Partners
and other leading mental health and carer organisations to continue
to drive forward the standards of the Triangle of Care. To this end,
this guide has been revised to reflect the project development
into all areas of the mental health care pathway including
specialist services.
With the launch of the formal Triangle of Care membership scheme
we hope to build on and develop this project further to ensure that
all carers of someone with a mental health issue receive the
information, advice and support they require to continue in their
roles as expert partners in care.
Thea Stein, Chief Executive, Carers Trust
About Carers Trust
Carers Trust is a major new charity for, with and about carers. We work 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.
We do this with our Network Partners – a unique network of 118 independent carers
centres, 63 Crossroads Care schemes and 104 young carers services. Together we are
united by a shared vision for carers – to make sure that information, advice and practical
support are available to all carers across the UK.
The Triangle of Care Carers Included: A Guide to Best Practice in Mental Health Care
2Executive summary
The Triangle of Care is a therapeutic alliance between service user, staff member
and carer that promotes safety, supports recovery and sustains wellbeing.
The key elements to Who is this document for?
achieving a Triangle of Care This guide is primarily addressed to mental
The essence of this guide is to clearly identify health services, directors, managers,
the six key elements (standards) required to commissioners and staff, and also to inform
achieve better collaboration and partnership carers, service users and carer groups.
with carers in the service user and carer’s Success in achieving change depends upon
journey through mental health services. staff becoming willing ‘champions’ for better
For each element we suggest good practice partnership working and being able to
examples and resources that may be helpful. challenge practice that excludes carers.
A more inclusive attitude for carers and
The six key standards state that: families should be promoted, where they are
listened to and really heard and consulted
1) Carers and the essential role they play more closely.
are identified at first contact or as soon
as possible thereafter. Better recognition that carers are key partners
in the planning and provision of mental health
2) Staff are ‘carer aware’ and trained in care also makes sound economic sense.
carer engagement strategies. Both commissioners and providers of mental
health services need to recognise that
3) Policy and practice protocols re:
supporting carers through initiatives such as
confidentiality and sharing information,
the Triangle of Care is a sound investment in
are in place.
safety, quality and continuity of care at
4) Defined post(s) responsible for carers relatively little financial cost. That said,
are in place. supporting carers should not be used as a
means, intentionally or otherwise, to
5) A carer introduction to the service and substitute necessary statutory support and
staff is available, with a relevant range responsibilities. Carers support should not
of information across the care pathway. be seen as a means to reduce support to
service users, or to legitimise inappropriate
6) A range of carer support services assumptions from services about how
is available. much carers can take on.
In addition to the above, there also needs to
be regular assessing and auditing to ensure
these six key standards of carer engagement Although the terminology and legislation
exist and remain in place. A self-assessment referred to in this guide applies to Scotland
audit tool for carer engagement can be found the standards and rationale are applicable
in Appendix 1. across the whole of the UK.
3Introduction
In July 2010, the Triangle of Care, Carers Included: A Guide to Best Practice in
Acute Mental Health Care was launched in the Houses of Parliament. A joint
production with The Princess Royal Trust for Carers and the National Mental
Health Development Unit; the guide received a positive reception from
professionals, carers and service users alike.
Carers Trust is a new charity formed by the
merger of The Princess Royal Trust for Carers
• when assessing my relative, the worker(s)
talked to me as well, so as to get a clear
and Crossroads Care. Carers Trust now leads picture of how to help
on the Triangle of Care project across the UK,
and in Scotland is working with health boards • the worker(s) tried to get a good picture of
what my son was like when he was well
and mental health services to engage, include
and aspired to help him to return to this.
and support carers in their services.
The Triangle of Care approach is aimed at When treatment is at home, what if …
encouraging partnership working with carers
at all levels of care from the individual to • staff gave explanations and offered a
choice of options
overall service planning.
• treatments were explained and strategies
for managing the medication were given
What would help carers and
service users? • as a carer I was given the same sort of
information, support and coping strategies
that are now seen in many inpatient
At a presentation settings and reassurance when my relative
to The Acute Care became a person I couldn’t recognise.
Programme (now closed)
Alan Worthington When an admission was being planned,
asked the following what if …
questions:
• the service was close enough to easily
keep up family support
What if? – A carer’s journey through
acute care services • the service could offer alternatives to a
hospital bed.
(With apologies to Rudyard Kipling.)
When asking for help, what if … On the ward, what if …
• both my relative and I had a phone number • the staff gave time each day to have good
to call if an acute situation was to develop conversation and give support
• as a carer I could call the staff, tell them • the
the need was urgent and I would get a
ward provided a warm friendly
atmosphere with things of interest to do
quick response
The Triangle of Care Carers Included: A Guide to Best Practice in Mental Health Care
4• there were groups to explore general life
and mental ill health, with opportunities
What if your service was responsive enough
to be able to answer all of Alan’s questions
to learn from others and develop with a yes. Carers Trust and its partners
companionship believes the best way to do this is by
developing and maintaining the Triangle of
• when I visited the ward I was welcomed as
a friend and supporter of the work, and
Care: a carer engagement approach for
mental health services.
staff accepted that I wished to contribute
for my relative’s benefit and the benefit
of others The Triangle of Care: a carer
• Iand
was offered information about the ward
services
engagement approach for
mental health services
• when the named nurse was not available,
there was someone else who was willing The Triangle of Care approach was initially
to talk to me. developed by carers and staff seeking to
improve carer engagement in acute inpatient
At leave or discharge, what if … services. It has now been extended to cover
all services within a mental health service
• Iallwas involved in the planning and we
worked out what to do if, for example
whether they be an inpatient, community
team or specialist service such as eating
if there was a relapse or if the carer disorders or forensic. Carers frequently report
became ill that their involvement in care is not
• my relative was given practical help with
keeping his medication sorted and help
adequately recognised and their expert
knowledge of the ‘well person’ is not taken
with remembering to take it. into account.
A disconnected model of involvement like this
Afterwards, what if … can lead to carers being excluded at
important points.
• when the episode was over, the services
asked for feedback and used it to improve
things in the future
• that I knew that my relative would be
visited within two days of discharge Service
Professional Carer
user
• that I knew that his physical and mental
health would be reviewed at regular
intervals
• ifinterventions
necessary, we would be offered family
and talking therapies.
This leads to gaps in practice which can result
in the carer being left on the outside and in
failures to share information that may be vital
… then our caring duties would diminish to risk assessment, care planning, and to
to a point when we could look towards our acting in the best interests of both service
own recovery. user and carer.
5Some common problems The Triangle of Care can be part of the solution.
Service user
“At the time, when my relative joined the
service I felt completely lost. Here was a
set of new experiences I could not have
imagined. I needed to know the ropes,
who was there to help and what was going
on. I especially needed to believe in the
professionals – that they understood my
connection to this precious person now in
their care. I needed to have confidence Professional Carer
they knew how to help him recover and
that they saw me as part of that recovery.” The concept of a triangle has been proposed
Carer speaking about when the person by many carers who wish to be thought of as
they care for had their first episode active partners within the care team. It is seen
when there is collaboration between the mental
health professional, service user and carer. The
“At times I try to imagine how different link between the professional and patient often
things might have been if the staff had defines the service, but in most cases the bond
realised how close we had been until between patient and carer has pre-existed.
the breakdown. If only someone had
An effective Triangle of Care will only be
met me and listened to my part of the
complete if there is a willingness by the
events – asked me what help I needed.
professional and carer to engage. Most carers
I do wish they had explained to me what recognise that this three-way partnership
they were doing and warned me when between service user, carer and clinicians,
she was discharged. I could have been with all the voices being heard and influencing
better prepared and we might still be care treatment decisions, will produce the
close friends.” best chance of recovery. This places an onus
Carer speaking of a lost relationship on professionals and services to actively
encourage this partnership.
Carers say their wish to be effective is Carers wish to be trusted, involved and become
commonly thwarted by failures in more effective. Services may have traditional
communication. At critical points and in ways of doing things which create obstacles for
specific ways they can be excluded by staff, carer support. More effective carer engagement
and requests for helpful information, support will grow from changing attitudes and adopting
and advice are not heard. positive practice. This relationship can be
reinforced by putting in place key components
which invite carer participation, giving information,
support and advice in a considered manner. This
approach should involve carers in all stages of
the process including assessment, care planning,
treatment, referrals and discharge planning, as
well as decisions in such areas as aftercare
provision, housing, and employment support.
The Triangle of Care Carers Included: A Guide to Best Practice in Mental Health Care
6Why is carer engagement are not there, and are commonly faced with
providing care to service users who are
so important in mental acutely unwell. Many emphasise the benefits
health services? of the person they care for remaining within
their home environment, providing that these
Carers are usually the first to be aware of a benefits are fully realised through sufficient
developing crisis – often at times when support and expertise on the part of the staff
professional help has not yet been established team. Intensive not Intrusive (Mental Welfare
or is unavailable. They are often best placed Commission Scotland, 2012) on standards
to notice subtle changes in the person for for Intensive Home Treatment Teams, noted:
whom they care, and usually the first to “An important part of offering intensive home
notice the early warning signs of a relapse. care is the inclusion of carers in the process.
Carers told us they generally felt involved and
Carers want to see a collaborative team part of the care and forward planning.”
approach to care, and be seen as partners in
care. They want to be kept involved and Admission to hospital is also a time when
informed throughout the assessment, carer engagement and support needs to be
treatment and aftercare planning of the given special attention. Carers usually
person they care for. This is particularly true in remember ward admission as a traumatic and
periods of crisis and need for acute care, troubling time, often involving conflicting
when carers are understandably extremely emotions of guilt and relief, particularly if it is
concerned about those they care for and an enforced/compulsory admission. Carer
want to contribute to ensuring that person involvement is also fundamental to good care
gets the best care possible. planning and informed risk management.
Canvassing the views of carers at such times When a service user is discharged to a
may be key to ensuring that any risk factors community team, they are allocated a named
they are aware of are properly evaluated and worker, such as a Community Psychiatric
acted upon. It has been a feature of a Nurse or social worker if required and this is
number of inquiries into serious incidents that an opportunity for services to engage with
failure to communicate with and listen to carers as equal partners. Although many
carers and families has been a significant carers see professionals as strangers who
contributory factor. enter their homes it does give carers an
opportunity to inform them of their
Crisis events are often the start of the patient experiences of the service users’ condition
journey and may be pivotal in commencing and a chance to find out more of what the
recovery. Carers need to be kept informed future holds. If carers are not included and
and be seen as part of the treatment team, treated as partners this can have a severe
with information sharing at all stages of care. effect on the service user’s condition, the
Beyond carers’ ongoing responsibilities for carer’s confidence in services and the
day-to-day care, service users in the acute professional’s ability to support their client
phase of their illness require more intensive adequately. In addition, inclusion and support
input and those who may previously have of carers can support the recovery approach
been hospitalised often remain at home and ensuring the service user has greater chance
this can have considerable implications for of achieving recovery.
carers. Carers often have the principal
responsibility for care when the professionals
7“I’m left feeling very alone with it all. “The carer is the most likely person to have
Because staff are so familiar with mental useful info that could help recovery, but
illness, they lose sight of what it’s like to professionals still see the service user as
be a carer dealing with the effects of the very separate from the carer, often assuming
condition day after day.” the person will not want a carer involved.”
Carer (Chief Executive,
Support in Mind Scotland, 2012)
Creating the Triangle of Care
The Mental Health (Care & Treatment)
The carer quoted above points to some of the (Scotland) Act 2003, includes respect for
common obstacles to good engagement carers as one of its guiding principles. This is
experienced by carers. In the Triangle of Care defined as: “Those who provide care to
you will find ways of achieving better service users on an informal basis should be
collaboration between the mental health afforded respect for their role and
clinician/team/ward, service user and carer, experiences, should receive appropriate
based on the six key standards which make information and advice, and should have their
up an effective triangle. The rationale for each views and needs taken into account.”
of these standards is explained and examples
The Triangle of Care approach focuses on
of good practice highlighted. Planning to
improving carer-staff interactions in dealing with
achieve an effective Triangle of Care is based
episodes of care, wherever they take place on
on recognising that the service needs to
the care pathway. Carers are usually willing to
ensure each element is put in place to create
connect with staff and to do what they can to
and sustain the engagement required to
help resolve a crisis or improve the health
achieve better outcomes for carers and
and care needs of the person they care for.
service users.
They often value the professionals temporarily
In Scotland many acute services (whether
taking over the responsibility from them and
inpatient, community, crisis or specialist) are
giving them space to reflect and get more
now using some of these elements of best
understanding of how to manage their caring
practice for ensuring effective carer
role and how to get support in doing so.
engagement. The development of Scottish
Recovery Indicator 2 is also being used
extensively to evidence carer involvement.
“I experienced a great sense of relief.
The Scottish Recovery Network identified that: The professionals had taken over my
“Anecdotal feedback suggests that where burden. It felt much safer for James now.”
services do gather information from family Carer
members and carers they have been
surprised at how left out and angry some “As soon as my son was admitted the
people feel. There is a real sense of
psychiatrist met with me and gave me lots of
frustration amongst carers, both that their
needs are not being fully assessed and that
information on the illness, medication and
they sometimes feel they are denied the treatment and there was regular contact
opportunity to collaborate and support the throughout my son’s time as an inpatient.”
recovery process.” Carer
The Triangle of Care Carers Included: A Guide to Best Practice in Mental Health Care
8The key elements to achieving • Information release forms and protocols.
a Triangle of Care • Advance statement forms and protocols.
The essence of this approach is to clearly 4) Defined post(s) responsible for carers
identify the six key standards required to are in place, including:
achieve better collaboration and partnership
in the service user’s and carer’s journey • Carers lead or champion for all wards
and teams irrespective of which service.
through mental health services. For each
standard you will find good practice examples
and resources that may be helpful. • Carers links delegated for each
shift/team.
1) Carers and the essential role they play
are identified at first contact or as soon 5) A carer introduction to the service and
as possible thereafter. staff is available, with a relevant range
of information across the care pathway,
• Carers’ views and knowledge are
sought, shared, used and regularly
including:
updated as overall care plans and • An introductory letter from the team or
ward explaining the nature of the
strategies to support treatment and
recovery take shape. service provided and who to contact,
including out of hours.
2) Staff are ‘carer aware’ and trained in
carer engagement strategies. • An appointment with a named member
of the team to discuss their views and
• Staff need to be aware of and welcome involvement.
the valuable contribution carers can make
and be mindful of carers’ own needs. • Ward orientation/induction procedure
and leaflet.
• Staff need knowledge, training and
support to become carer aware. • Carer information packs.
• Discharge planning and aftercare support.
3) Policy and practice protocols re:
confidentially and sharing information, 6) A range of carer support services is
are in place. available, including:
To ensure proactive engagement carers • Carer support.
need to be part of the care planning and
treatment process across the care pathway, • Carer needs assessment.
that is, for inpatient, home treatment and
community, the service should have clear
• Family interventions.
policies and mechanisms and ensure There also needs to be regular assessing
these are routinely used, including: and auditing to ensure the six key
standards of carer engagement exist and
• Guidelines on confidentiality and for
sharing information – a three-way
remain in place.
process between service users, carers A self-assessment audit tool for carer
and professionals. engagement can be found in Appendix 1.
9The rationale behind
the key elements
1) Carers and the essential gives significant support to another person
irrespective of whether they live with that
role they play are identified person or not, they should be considered to
at first contact or as soon be a carer and be actively engaged by the
as possible thereafter. care team. This applies even if the person
being cared for is unable, or even unwilling,
Staff need to identify the carer(s), that is, the to acknowledge the carer’s involvement.
people who are providing significant support.
Carers can be a mix of relatives including
They need to listen to and respect carers’
parents, children, siblings, partners or friends.
views and ensure this knowledge is recorded
What they have in common is wanting to help
and shared within the team providing care.
the person they care for to be safe and
Carers often possess crucial information such
recover. When mental ill health masks the
as interests of service user and allergies as a
‘well’ person’s personality, family and friends
result of their close relationship, and often
cherish the memory of the well person and
almost constant contact with the service user.
strive for their recovery.
Their early involvement will help provide the
most accurate assessment on which to plan Recognition and respect are major issues for
treatment and assess risk. The carer needs to relatives and friends who provide care, and
be part of giving and receiving information are central to confident care giving.
and be helped to develop coping strategies
vital for successful care and recovery. Staff “It’s like being on the outside looking in
should be mindful of gender, ethnicity and [being a carer and dealing with services].
cultural needs, including religion, which may Really we are the ones who should be on
influence the caring role. the inside and professionals should be
looking at what we do and learn from how
Who are carers? we cope with the person we care for – you
The term carer is relatively new in health and never know they might learn something.”
social care, though the concept of what a Carer
carer is or does is more widely understood.
Some people who care are relatives, and
prefer to use the word relative to describe “Early identification can mean that carers
themselves. Others have close friendships are able to continue caring for longer, with
and are caring for people they live with who better outcomes for them and the person
are not relatives. Some are carers of friends they care for. A key time to identify a
or clients such as tenants. Some do not carer is when the person they care for is
accept that they are carers or even shun the admitted to or discharged from hospital.”
concept. If someone is involved with and (Equal Partners in Care,
NHS Education for Scotland, 2013)
The Triangle of Care Carers Included: A Guide to Best Practice in Mental Health Care
10All members of the mental health team need 2) Staff are ‘carer aware’
to know which carer(s) has taken primary
responsibility for caring for an individual. This and trained in carer
information needs to be recorded. If the engagement strategies.
person is a parent with a young family or a
young carer themself, then any pressure on Do all front line staff understand
the children in the family needs to be “being in the carer’s shoes”?
recognised and a referral to young carers
services discussed. Caring Together, The Carers Strategy for
Scotland (2010), and Getting it Right for Young
Many carers do not realise that as such they Carers, The Young Carers Strategy for Scotland
have rights to both information and support. (2010) both emphasise the importance of
Some may, for example, qualify for equipment workforce training to ensure staff have a
and financial resources. It is an essential part proper understanding and appreciation of the
of a service’s responsibility to promote role of carers and young carers.
awareness among carers about their rights.
NHS Carer Information Strategies: Minimum
Requirements and Guidance on Implementation
Best practice examples (2006) requires that an accountable, key
member of staff is identified at local level to
• Mental Health Carer Coordinators.
Staff work across acute inpatient
have responsibility for design and delivery of
carer awareness.
admission units and community mental
health teams to help identify and Underpinning the effective delivery of a
support mental health carers. Triangle of Care is the ability of staff to listen
(NHS Lanarkshire). empathetically to the experiences and
concerns of carers and discuss with the carer
• The South Rehabilitation Service,
based at Leverndale Hospital, uses a
the best ways of dealing with them. All staff
need to work to a whole person approach and
Behavioural Family Therapy approach to should have received carer awareness
identify and include carers and family training. Staff need to be aware of the
members in service development and valuable contribution carers can make to the
care and treatment plans. Details of assessment and care of the service user, be
carer involvement are recorded in mindful of carers’ own needs and confident
service plans, and carer awareness when talking to carers. This does not happen
training takes place with staff. (NHS automatically. To help them to meet their
Greater Glasgow & Clyde). obligations, staff need knowledge, training
• The Young Carer’s Authorisation Card
is used fully within Fife young carers
and support. They should be capable of
dealing with carers’ questions and concerns,
services and is being piloted in several and of pointing them towards sources of
health board areas. This will help support where the carer can find further help
workers to identify young carers and to meet their needs. It has been shown to be
involve them in discussions and decisions highly effective to have carers taking part in
about the person they care for. the planning and delivery of training.
Staff who undertake assessment and care
planning should have received specific
training in how to involve service users and
11carers. This is particularly important in 3) Policy and practice
home treatment and community situations
which are often reliant on the support protocols re: confidentiality
provided by carers. and sharing information,
Successful long-term outcomes are most are in place.
likely when staff accept the benefits of carer
involvement and collectively promote the “Put a group of carers in a room and very
concept of a therapeutic triangle formed by soon the issue of confidentiality will come
themselves, the service user and carer(s). When into the discussion.”
all three parties work together they create the Carer Support Worker
Triangle of Care most likely to optimise safety,
opportunity and recovery for the service user
and be most helpful for the carer. Confidentiality, though crucial, is often seen
as a problem area in creating a Triangle
“I wanted to be part of decisions about the of Care. The therapeutic relationship between
worker and service user is based on having
treatment plan, but I didn’t know if I could,
confidence or trust that what is said will
or if they would think I was interfering.” not be disclosed without their agreement.
Carer This agreement needs to be considered
in the context that the carer may have key
information relevant to safe and effective
Best practice examples care planning for the service user.
They may also be required to take on roles
• Carer Awareness Training Sessions
delivered to front line NHS workers,
and responsibilities to achieve the best
care plan in the home or once the service
designed and delivered with input user is discharged.
from carers. (Glasgow Association for
Mental Health). Carers are likely to know the history of the
crisis, and have known the ‘well person’.
• Supporting Relatives and Informal
Carers – Top Tips for Mental Health
They are aware of what may influence his or
her recovery. They should therefore be
Workers. This series of cards contains encouraged to share this information,
advice from carers of people with not only because it will help the clinical
mental ill health, on involving carers in assessment and treatment, but also because
the patient’s recovery. (Support in it gives them a positive role and confidence
Mind Scotland). in the programme. Consideration needs
to be given to the fact that a crisis, especially
• Scottish Borders Young Carer Strategy.
Joint development whereby young
involving the need for compulsory treatment
and/or admission may provoke user/carer
carers are identified and supported and
conflict that may temporarily prevent consent
awareness of the needs of young carers
to sharing information.
is raised by provision of awareness
raising training. (Produced in partnership
between Scottish Borders Council,
NHS Borders and partner agencies).
The Triangle of Care Carers Included: A Guide to Best Practice in Mental Health Care
12The Mental Welfare Commission for A suggested example of good
Scotland’s Good Practice Guidance, practice:
Carers and Confidentiality (2013) makes
reference to the The General Medical • Discuss with the service user if there is
anyone providing significant care.
Council which states:
Record and share this as required.
“Confidentiality is central to trust
between doctors and patients. Without • Ifshould
a carer is involved, then discussion
establish if the service user has
assurances about confidentiality,
patients may be reluctant to seek capacity to give or withhold consent to
sharing of information.
medical attention or to give doctors the
information they need in order to
provide good care. But appropriate
• Ifinformation
capacity is present the level of
to be shared with the carer
information sharing is essential to the should be agreed with the service user.
efficient provision of safe, effective This may be full, partial or no disclosure.
care, both for the individual patient and
for the wider community of patients. • This decision is recorded. If possible,
the service user should sign consent for
Confidentiality is an important duty,
sharing information with the carer. In
but it is not absolute.” Scotland, any person over the age of 16
“You should not refuse to listen to a is presumed to have capacity and to be
able to make decisions about their own
patient’s partner, carers or others on
health care and also about the sharing
the basis of confidentiality. Their views
of personal health information (the Age
or the information they provide might of Legal Capacity (Scotland) Act 1991).
be helpful in your care of the patient.”
• Ifnota person over the age of 16 does
have this capacity then the Adults
Carers say professionals are understandably with Incapacity (Scotland) Act 2000 is
reluctant to engage with them when the the law which sets alternatives in place,
service user has not given consent to share. and mental health professionals
Staff should be aware that this can lead to a will only be bound to share health
failure to provide general information and can information if the carer also has
inhibit the carer from sharing valuable appropriate guardianship powers.
information and insights.
• Ifthese
the service user wishes no disclosure,
wishes must be respected, but
With the support of a Carer Support Worker
(or other advocate) the carer can be helped staff should regularly revisit this decision.
to focus on general issues and alternative In this scenario, careful consideration is
sources of help. needed on how the carer(s) can still be
offered support and general information
especially if the carer is to be responsible
for ensuring the service user is safe and
well at home (Mental Welfare
Commission, Scotland, 2013).
(continued)
13• Itincluding
is good practice for any paperwork,
letters, relating to the carer to
Best practice examples
be stored in a separate section of the • Carers and Confidentiality in Mental
Health. A short leaflet for staff working
service user’s notes. This can reduce
the risk of disclosure of carer or service with carers. (Royal College of
user confidences. Psychiatrists and The Princess Royal
Trust for Carers).
It is vital to emphasise that the above applies • Carers and Confidentiality. A best
practice guide for staff working with
only to information that is personal to the
carers. (Mental Welfare Commission
service user, that is patient identifiable
for Scotland).
information such as the service user’s
diagnosis, treatment options and other
personal details. Carers can always receive
• Carers Information Pack. A pack
with information for carers, families
non-confidential information from staff such and friends, with a section on
as information that is already in the public confidentiality. (Support in Mind
domain about mental health conditions, Scotland).
the workings of the Mental Health (Care &
Treatment) (Scotland) Act 2003, and local • Consent to Share Information. A form
for staff to complete with service users
services available for both carers and service
users. Staff can build stronger relationships to inform staff on what information can
with carers by offering and sharing be shared. (Avon and Wiltshire Mental
non-confidential information, even if sharing Health Partnership NHS Trust).
of the service user’s information may not be
appropriate in that situation. Staff should
ensure they ascertain what information Under The Mental Health (Care & Treatment)
carers already know, as any information (Scotland) Act 2003, service users have the
carers are already aware of is not to be right to have any Advance Statements taken
treated as confidential. into account by anyone carrying out duties
under the Act. These statements can set out
Similarly, carers have the same rights to in clear detail the service user’s wishes about
confidentiality of information they disclose care and treatment and which carer(s) to
as service users do. It is vital for staff to contact should they become too unwell to
understand and respect carers’ rights as they engage in such discussion. Staff should
would service users’. ensure that carers know if such a statement
has been prepared, where the statement is
held and how to activate it.
The Triangle of Care Carers Included: A Guide to Best Practice in Mental Health Care
14Best practice examples
4) Defined post(s) responsible
for carers are in place.
• Advance Statements. A guide for staff
explaining the purpose of Advance When asked about carers’ issues, some
Statements and rules about witnessing services claim: “All the staff do it!” While it is
them. (NHS Education for Scotland). fundamentally important that all staff should be
competent in working with carers, this work
• The New Mental Health Act Guide to
Advance Statements. Information
needs to be coordinated, managed and led.
about Advance Statements and sample Ward and community team carer links/leads/
forms. (Scottish Government). champions should be appointed. In conjunction
with team managers they then have the
• Use of Advance Statements.
Best practice advice to writing and
task of promoting carer engagement and
overseeing the relationship with carers. They
witnessing Advance Statements. make sure that necessary measures are in
(Mental Welfare Commission for place and operate effectively. Careful thought
Scotland). about carers’ issues suggests that this work
is made up of a number of disparate parts,
most of which may not require great effort but
Services are now adopting a recovery approach are all necessary and depend on coordination.
to care. This approach empowers service If one or two designated team members always
users and carers through partnership working, have them in mind, they are more likely to
knowledge and expertise sharing. The model receive the required attention. Likewise, these
also promotes shared decision making and arrangements must be monitored to ensure that
the development of joint crisis plans. carers leads do not become a ‘dumping ground’
for carer work – rather that they help coordinate
whole-team attention on carers’ issues.
Best practice examples
Designated carer leads will also promote good
• Scottish Recovery Indicators 2.
A best practice assessment tool.
practice among colleagues, that is, making
sure that staff know of any carer involvement in
(Scottish Recovery Network).
each service user’s care plan and are aware of
• Finding Out More About WRAP and
Self Management. Introducing the
new carers needing orientation to the service
or the ward. They can also be the contact
wellness recovery action planning between individual carers and staff at meetings
(WRAP) self-management tool. and reviews, can promote carer resources
(Scottish Recovery Network). within the community, and liaise with carer
support organisations. Wards that have
appointed a carers lead say there is quickly an
improved relationship between staff and carers.
“Jasmine, my daughter’s named nurse was
never on the same shift as my visits. The
other nurses would have a few words but
it wasn’t the same as talking to Jasmine.”
Carer
15Carers often find it difficult to monitor their An introductory letter
relative’s or friend’s progress or to impart
information due to the shift system on wards When a person enters mental health services,
or community teams’ busy schedules. In whether as a result of crisis or through
addition to the carer lead, teams can appoint outpatient assessment, their carer is likely to
a member of staff to act as a carer link for be anxious about what lies ahead and be
each shift/team. This person would provide concerned for the person they care for. Carers
additional continuity in receiving and sharing can at this time be exhausted and fragile, and
information – and be a clear point of contact. may not be in their most receptive state to
receive and retain information. Many carers
find their first meeting with the community or
Best practice examples crisis team or visit to the ward an ordeal
which may often have been compounded by a
• Carer Support Worker in community
mental health team. Carers of East
series of distressing events prior to seeking
help. An introductory letter from the named
Lothian has a dedicated carer support nurse or care coordinator can help provide
worker within the team to identify and reassurance and give the carer much needed
support carers and the team. basic information such as the names and
contact details of key staff and other local
• Equal Partners in Care. An online
training and information portal for staff sources of advice and support.
working within the NHS and other
agencies. (NHS Education for Scotland).
Best practice example
• Carer’s Initial Introductory Letter.
5) A carer introduction to (Carers of East Lothian and NHS
Lothian).
the service and staff is
available, with a relevant
range of information across An appointment with a named
the care pathway. member of the staff team
The letter should also offer an early
Best practice examples appointment where the carer can share
concerns and family history. Good care
• Carer Support Volunteer Pilot Model.
A pilot project using volunteers to meet
planning and effective risk management can
best be achieved with early carer involvement.
and greet carers on their first visit to a A formal appointment should be set up
ward. (Norfolk and Suffolk NHS between a carer and member of staff to give
Foundation Trust). the latter a chance to listen to the carer’s
story and concerns, and take a good history.
• Family Rooms currently provided by
many health boards in Scotland. An
The meeting will also give the carer the
chance to ask questions of personal concern
initiative to provide a space for young
in more detail.
carers visiting a ward.
The Triangle of Care Carers Included: A Guide to Best Practice in Mental Health Care
16rules regarding prohibited items, arrangements
Best practice example regarding smoking and mobile phones and
safety procedures. Information needs to be
• Initial Family Liaison Meeting.
A process whereby carers are offered
given about the roles of involved staff members
and how and when they can be contacted.
an initial meeting. (Somerset
Partnership NHS Foundation Trust). Some excellent ward leaflets have been
produced by staff in collaboration with service
users and carers. These leaflets often
Ward orientation/carer induction describe the layout of the building, its
facilities and services and basic information
Admission to a psychiatric ward is often a
about the ward routines. Some wards
daunting experience for both service user and
produce both a leaflet for service users
carer – especially on acute wards where staff
and one for carers, relatives and friends.
are managing a range of people with difficult
Although some information will be common
or disturbed behaviour. Some carers and
to both leaflets, this approach recognises
families feel a sense of failure when someone
that the needs of service users and carers
they care for is admitted.
are different and they should be offered
different solutions.
“I couldn’t manage and feel responsible
for calling in the crash team and for the
section. It was horrible!” Best practice examples
Carer
• Carers and Family Centre, The State
Hospital, Carstairs. A dedicated space
Many carers argue that admission procedures within the hospital for carers and
need to be more carer friendly, with families to use where they can find out
recognition of the value of carer input and about State Hospital and get other
respect for their opinions. On arrival, a carer information as required.
accompanying a service user at time of
admission should be met, greeted and shown • Ward 25, Monklands Hospital. Carers
contacted and offered an appointment
to an appropriate private area where they can
discuss any pressing matters of concern in with staff within 72 hours of patient
confidence and be offered refreshments. admission. (NHS Lanarkshire).
National guidance and best practice • Getting to Know You. A process
whereby carers are offered a meeting
recommends that carers should be given an
explanatory leaflet or similar document within 72 hours. (Northumberland, Tyne
focusing on immediate matters, as part of the and Wear NHS Foundation Trust).
admission process. Carers should be given
this leaflet, which provides basic information
about the ward, at the time of admission or Staff may think a carer is ‘angry’ or ‘hostile’
as soon as possible afterwards. This may but this may be an indication that the carer is
include what practical items the service user particularly stressed or concerned and needs
will need in hospital, visiting arrangements additional support.
and facilities for seeing visitors in private, an
explanation of any ward procedures such as
locked doors, protective times during the day,
17“The staff complained about Jan’s Services should have a clear carer care
husband. Whenever he visited, it was pathway where services check that carers
mid-evening with few staff on duty. have received this information irrespective of
He was intimidating, aggressive, loud how long they have been a carer or whether
and impatient. I investigated and they are dealing with a specialist service,
discovered that the man was going home inpatient or community team.
after a long day shift, feeding the children Caring Together, The Carers Strategy for
and organising the home before visiting Scotland (2010) and Getting it Right for
his wife. After he had told his story and Young Carers (2010), states that: “It is
I had shared it with the team, future necessary to maintain a focus on the
encounters were much better.” provision of timely, accurate and good quality
Modern matron information and advice not only when
someone is new to caring but also whenever
information and advice is needed.”
Carer information packs
This may be particularly important for carers
A more in-depth carer information pack from black, Asian and minority ethnic (BAME)
should be provided, either as part of an communities. Steps should be taken to
initial care plan or as support to the principal ensure that the cultural and language needs
carer of a service user. This should give carers of families or other carers are taken into
and families the information needed to account in preparing how best to provide
understand mental ill health conditions, the carer information.
likely consequences, what the carer and
Although some carer organisations and
family can do to help, their rights as carers
condition specific charities have produced
and the services and support locally available
carer information packs for BAME
to them and the person they care for.
communities, their distribution is variable.
Carers often begin their journey of caring for
The ideal pack should be clearly written, well
someone with mental ill health with very
presented and capable of being updated at
limited or inaccurate knowledge of what the
regular intervals. It should provide local and
illness might mean both for the person they
general sources of support and will need to
care for and for them as carers. They can be
be flexible and adaptable – broadly for each
unaware of what resources they may need
mental health diagnosis. The carer might want
and where to find them and as result can feel
or need to refer to information at any time. It
confused, anxious and depressed themselves.
is recommended that staff automatically give
Mental health staff can provide informal all new carers a pack and check with all
verbal support and information, but the carers that they have this information.
provision of a designated information pack
helps reinforce the central importance “The information packs were really useful
of the carer’s role to both carer and staff. because I could have a quiet read when
It formalises the extent of the knowledge I was ready. I could re-read things which
and skill required from the carer and were difficult. I keep the pack in an
acknowledges the need for support. obvious place and it is reassuring to
know that there are lots of contacts
when I need them.”
Carer
The Triangle of Care Carers Included: A Guide to Best Practice in Mental Health Care
18Managing information resources is a challenge where possible, timelines in mind when the
to mental health services. Resources need to care plan is developed. Aftercare engagement
be up to date, provided in a timely way and and support must be included in this
used, rather than languishing on some planning, for the service user’s journey to
forgotten shelf in the office. These duties are recovery to continue effectively. Coordination
more likely to be done well if they are one between the relevant community teams,
staff member’s responsibility. It will help to be families and carers and the service user
clear whether the responsibility for themself needs to be established before
commissioning, storing and issuing the packs discharge, and the service user needs to
lies with a carers lead. Whoever has know what support is available and how to
responsibility, all staff must ensure they know access it.
where supplies are and offer/check all carers
have or need this information.
Best practice example
Best practice examples • Discharge Planning. A practical guide
to including carers in the discharge
• Carers Information Pack. Supported
pack for carers, hospital and community.
process. (NHS Lothian).
(NHS Lanarkshire, North Lanarkshire
Council and South Lanarkshire Council).
6) A range of carer support
• Adult Ward Carers Booklet. An
overview of information that a carer may
services is available.
need to know if the person they care Carer support
for is admitted to hospital. (Somerset
Partnership NHS Foundation Trust). Mental illness can cause a rift between the
service user and those who are closest to
• Carers Information Pack.
Comprehensive information sheets for
them – if only for a short time. This separation,
particularly if it comes because an individual
carers. (Support in Mind Scotland). has been detained under The Mental Health
(Care & Treatment) (Scotland) Act (2003),
• Carer Information Leaflet. Online and
print information leaflet in all NHS
can produce anger and frustration from the
service user.
settings. (NHS Dumfries and Galloway).
The carer can often be the butt of hostile
• Carers Handbook. A comprehensive
guide for carers. (South London
feelings at the same time as they are having
to deal with their own thoughts and feelings
and Maudsley NHS Foundation Trust).
of confusion, anger, guilt and sadness.
All health and social care services should
Discharge planning and have a carer support service in place,
aftercare support including access to carer advocacy services.
Support services may be provided by either
Planning for discharge should be an integral the health boards or the local authority social
part of the care pathway and carers are an services, or jointly.
integral part of this process, with goals and,
19There are a variety of models of carer Some services use an appointment system to
support work, including posts that work organise one-to-one support for carers,
across home treatment, inpatient settings especially those new to the service/ward.
and community teams. Having someone to talk to who is well versed
in carer issues is an effective way of
Some services have a dedicated worker(s) for addressing the trauma of being a carer of
the adult mental health service overall or a someone who has become acutely ill. Carer
designated link to specific wards. Some Support Workers or carer advocates may
supplement this with provision of independent helpfully attend ward round or review
advocacy services, usually managed by local meetings when carers are in attendance and
voluntary organisations. All carers should be need support.
offered referral to the carer support service.
Some may decline for good reasons at that “I valued the one-to-one with the worker
point but their decision should be revisited but best of all was meeting and listening
from time to time.
to other carers. I learned so much from
Carer support posts, or ward or team staff the old hands. One said things like: ‘You
with designated carer responsibilities, should are trying too hard, back off a bit, your
ensure opportunities exist for families and relative will come back when they are
other carers to meet through educational or ready’. She meant that eventually the love
peer support forums. They may hold carer will come back and I know now this was
support meetings which provide the right. At the time it gave me hope.”
opportunity for mutual support between Carer
carers. Staff can find it challenging to run
a carers meeting on an inpatient unit.
The rate of service user turnover may mean
that a carer may be only able to attend one Best practice examples
or two meetings. Work or family commitments
and staff shift patterns can also limit • Carers’ Hub – www.carershub.org.
Commissioning guidance to ensure
carers’ opportunities to be available at
designated times. carers receive the support and
recognition they deserve. (Carers Trust).
Useful work can be undertaken with families
or other carers to develop strategies to deal • Carers Trust Scotland’s Network
Partners provide services throughout
with challenging or difficult situations they
may experience in their role as carers. Carer Scotland to support and advise carers
support groups that cover both inpatient and on a range of issues.
home treatment carers may provide better
opportunities to provide ongoing support • Young carer services. A mix of
organisations providing young carer
and reassurance. services either in groups or individually
While carer group support meetings are much to young carers across Scotland.
valued, provision for one-to-one support for (Scottish Young Carer Services Alliance).
individuals is also needed. Most carers are
likely to have specific and confidential issues
which they need to discuss. This can prove
difficult if they are part of a group.
The Triangle of Care Carers Included: A Guide to Best Practice in Mental Health Care
20An assessment of a carer’s person they care for, rather than their own
own needs needs. As rapport and confidence in the
process develop there will be a more
If the carer provides a lot of care and support meaningful exchange of information and
to the service user, then the carer is entitled insights. As individual needs are met during
by law to a carer’s assessment (Social Work the assessment process, carer confidence
(Scotland) Act 1968, as amended by the should increase.
Community Care and Health (Scotland) Act,
2002). Young carers under 16 have the
same rights to an assessment. They are an Best practice examples
important component of carer support in
the community. • Glasgow City Council has developed
self-assessment for carers in
The purpose is to ensure carers’ own needs partnership with a wide range of
are recognised, are being met, and that they statutory and voluntary agencies.
are aware of their rights to support, and
financial and other help in carrying out their • Edinburgh City Council has developed
a new carers’ assessment tool based
carer responsibilities. Carers’ needs
on effective partnership working
assessments are the responsibility of the
between the statutory and voluntary
specific local authority. Some are carried out
sectors. The tool is outcomes focused
by Care Coordinators, some by Carer Support
and meets the national minimum
Workers and some services delegate the
information standards.
responsibility to funded posts, using protocols
agreed by social services.
Carer Support Workers confirm that many Family work in acute care
carers decline the referral for assessment
because they are reluctant to discuss their Traditionally, adult mental health services
own needs. However, ensuring that the have focused primarily on the individual. In
carer’s own needs are identified is not just in the past, they have not offered a broad range
the carer’s interests but in the interest of the of treatments, such as talking treatments or
service user and the service as a whole. It is support for the family. There is a long
essential that every effort is made to ensure established and strong evidence base for the
carers receive all the support they are entitled effectiveness of family work, but more needs
to, given that they will often have the primary to be done to develop family work in adult
responsibility for assisting the service user mental health services.
once they have left hospital or when they are Family work requires skill and capacity and is
not receiving formal support. Staff should usually carried out in non-acute community
confirm that the carer is aware of the right to settings by staff with specific training. There
an assessment, and, if necessary, refer them. are difficulties in delivering family work on the
Carers should benefit from the dialogue wards. Shorter lengths of stay may make
involved in the process. It is rarely sufficient continuity difficult; service users are often
to carry out a carer’s needs assessment in a extremely unwell and so may be less able to
one-off interview. This may be the first be involved. Carers may wish to have respite
occasion when the carer’s interests have from confronting recent painful experiences
been addressed and their primary need may and so be unwilling to participate.
be to off-load and explore better care for the
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