The need for a fair deal
Government policy in the UK strongly
endorses the engagement of service users and carers in the design
and delivery of mental health services.1–4 Policies
exist concerning the participation of users and carers in the
training of health and social care professionals5 and in
the planning and undertaking of research.6
These policies stem from the
recognition that patients’ involvement can empower service users
and carers. It can ensure that policies and service design reflect
patients’ needs and preferences and lead to a more effective
healthcare system. They also reflect wider NHS commitments to
democratic and effective decision-making.
Government policy is, however, less
clear about what constitutes involvement and how it should be
achieved in the NHS. Models of service user engagement around the
country – for example Mersey Care NHS Trust – provide a blueprint
for how things could be done.
What we are calling for
- Mental health trusts to involve patients
and carers in the design, commissioning and delivery of mental
health services, staff training and research or audit
programmes.
- Trusts to engage service users in
evaluating the service users’ involvement in their trust and in
taking steps to remedy barriers revealed.
- Trusts to ensure that a champion of patient
involvement is a member of the trust’s board.
Examples of what the College will do
- The College will continue to integrate
service users and carers into their main areas of work (including
research, training and quality improvement) and will develop and
share best practice with other medical Colleges.
- We will audit and promote the involvement
of service users and carers in the training and education of all
junior psychiatrists.
- We will develop an assessment tool for
measuring the well-being of carers.
- With other partners we will further best
practice between psychiatrist and the patient on the use of and
withdrawal from medication.
- We will work to support the physical and
emotional well-being of carers of people with learning disabilities
who present challenging behaviour.
Design and delivery of services
Service users and carers have an important
role to play in the design and delivery of mental health and learning disability services.
This should lead to more accessible and acceptable services and
ultimately improve the service users’ health and quality of life.
Numerous case studies have detailed the benefits of service user
involvement, but there is little systematic evidence of the effects
of such involvement on the quality and effectiveness of services,
underlining the need for research.7
Barriers to involving users and carers in
the design and delivery of mental health services are well known
and are being addressed in some NHS trusts.8,9 Some good
work is already under way, focusing on:
the need for users and carers to
integrate into the trust’s meeting and management procedures
lack of concrete incentives in which
users could participate
organisational attitudes to how representative individual users and carers are of
the wider group of service users and carers, or their
ability to make useful or rational contributions
lack of investment in supporting and
building capacity among carers and users
issues about independence and freedom of
users and carers to act (such as the absence of user-defined
agendas, independent funding sources, or user or carer-only
forums).
Service users – including those with
schizophrenia and bipolar disorder – have been employed in clinical
teams to engage with and coordinate the care of other service
users. Studies indicate that employing users in case management or
outreach services is beneficial; the individuals they work with
appear to have fewer hospital admissions and an improved quality of
life than comparable groups.8
Dr Dave
Fearnley, consultant forensic psychiatrist, Medical Director &
Deputy Chief Executive of Mersey Care NHS Trust
‘I have been
promoting the involvement of service users and carers in consultant
appraisals in the Trust for the past 2 years. We are also planning
for service users and carers to meet consultants during the
appraisal year to undertake a semi-structured interview about the
ways they try to involve service users and carers in their
work.’
A well-known and often cited model of
service user involvement is the Mersey Care NHS Trust.10
The ‘Mersey care way’ is spearheaded by a director for service user
and carer involvement who sits on the trust board, but is driven by
a network of lead officers for involvement across all trust
services. Furthermore, users and carers are involved in all aspects
of staff training and recruitment and a Service User and Research
Evaluation Group was established to develop user-led and controlled
research.
Case study
1
Engagement within
the Royal College of Psychiatrists
The Royal College of
Psychiatrists is committed to involving service users and carers in
all its activities. Service User Recovery and Carer forums have
been established to support and provide input into the work of the
College. A national network of service users and carers has also
been developed to inform policy development.
Training
The benefits of involving users and carers
in the training of healthcare and social care professionals stem
from their unique understanding of mental health problems and their
ability to help assess professionals’ social and communication
skills.11 In 2005, the Royal College of Psychiatrists
advocated that all psychiatric trainees must receive training from
service users and carers.12 However, 3 years on, the College has found that in
existing training this is still patchy and under-funded. In
response, we are developing training materials with examples of
good practice to be adopted by psychiatric trainers across the
UK.12
Case study
2
Engaging with
Service Users
The
College’s quality improvement programmes are increasingly engaging
with service users and carers, who help to inform and shape the
work of the College Centre for Quality
Improvement. Users and carers are represented on steering
groups and standards development workshops and many also take part
in peer-review visits to other mental health services, interviewing
staff and service users. For some projects, participating trusts
are only permitted to take part if they commit to recruiting and
supporting service users to work with them locally, to help improve
services.
Research
Involving users and carers
in research is equally important, as they bring to studies their
insights, experience and skills.6,13 This includes
users’ personal knowledge of what it feels like to undergo
treatment or manage the side-effects of medication. It also
requires serious consideration of the often neglected experiences
of carers. Furthermore, service users’ and carers’ priorities for
research can be very different from those of academics.
Case study
3
Developing and
Testing the Carer Well-Being and Support Questionnaire
Researchers at the Royal College of Psychiatrists’
Research and Training Unit (CRTU) have been funded by the
Department of Health to develop and test a questionnaire for
accurately measuring the well-being of carers and their
satisfaction with the support they receive. The aim is to produce a credible instrument for assessing
important aspects of a carer’s experience which carers themselves will like because it will
ask relevant questions in the right way. The questionnaire will be used to assess a
carer’s need for support and to monitor whether the services
provided are meeting those needs. The CRTU is undertaking the study
in partnership with Rethink and the Alzheimer’s Society.
Users and carers can become involved in
research in different ways, for example by:
acting as partners in the research
study
advising on the key questions and methods
to address these
assisting with data collection and
analysis.
More rarely, research projects can be led
by users and carers themselves, with service users who are trained
and supported to undertake the research. However, in practice, it
is often the case that users and carers are not meaningfully
involved in the research process in any form, with lip service
being paid to their involvement.
Clear guidance is needed on how researchers
could meaningfully involve users and carers in their studies, as
this is still lacking. Furthermore, a range of groups should be
involved in research, including hard-to-research-with groups such
as prisoners or individuals in secure mental health services.
Finally, funding needs to be made available within trusts and
nationally to ensure that barriers to involvement, such as payment,
are overcome and that user and carer-led research studies become
more commonplace.
Case study
4
Mersey Care NHS
Trust10
Mersey Care NHS Trust provides
specialist mental health and learning disability services for the
people of Liverpool, Sefton and Kirkby. Their success in involving
service users and carers was recognised in the clinical governance
review carried out by the Healthcare Commission. It described the
level of service user and carer involvement in all aspects of the
Trust’s work as, 'exemplary' and 'impressive'. The Trust has also
won awards for its work.
Service users and carers are not
involved in Mersey Care because it will be good for them, good for
the Trust, or because it is the policy flavour of the government of
the day. Service users and carers are involved because they are
valued citizens with a whole range of knowledge and experience as
people as well as knowledge and experience of Trust services.
The Trust Board has adopted a
‘rights based approach’ in its work. Their strategy makes it clear
that, 'We must think about people’s rights in everything that we
do. Legal rights such as the right to life; carers’ right to an
assessment of their needs; the right to aftercare. Social rights
that are important to us all like the right to be heard; the right
to be free from poverty; the right to a meaningful life.'
Central to this approach is a
Board-level commitment to the rights of service users to be
involved in decisions that affect their lives. This has involved
appointing a Director for Service User and Carer Involvement. Leads
in service user involvement have also been set up for different
parts of the service.
Service users and carers are
offered payment for their time (£12 an hour plus expenses). This
sends a clear message that their time and effort and contribution
to the Trust is of equal value to that of staff and managers. The
Trust Board agreed an initial budget of £50 000 for this purpose
but has now increased it to £120 000 – based on a detailed 3-year
development plan.
In a series of informal
road-shows, the Trust listened to how service users and carers
wanted to be involved. Overwhelmingly, they wanted a say about the
staff that work with them – the people who come into their homes
and their lives when they are sometimes at their most vulnerable.
They said that they wanted people with skills and experience but
also with empathy and understanding.
So the Trust began there – with
training service users and carers in all aspects of recruitment and
selection and enabling them to take part as equals in the selection
of Mersey Care staff. Over 100 service users and carers have now
been trained in recruitment and selection by other service users
and carers and have been involved in the appointment of over 1500
staff – about a third of the Trust workforce.
The SURE (Service User Research and
Evaluation) Group was set up and supported to take on research
projects of their choosing. These included, among others, acute
solutions, an audit of in-patient wards in adult mental health
services, an audit of service user and carer involvement in
recruitment and selection, a review of the in-patient
detoxification unit in the drugs service. Others were concerned
about the right to make informed decisions and choices and the
quality of information provided by the Trust, so the group became
involved in the development of the Trust’s website and the
development of an information strategy.
References
1 Department of Health
(2004) Patient and Public Involvement in Health. The Evidence for
Policy Implementation. Department of Health.
2 NHS Scotland (2006) Delivering for Mental Health in
Scotland. Scottish Executive.
3 Adult Mental Health Services (2005) Raising the
Standard. The Revised Adult Mental Health National Service
Framework in Wales. Welsh Assembly Government.
4 Department of Health, Social Services and Public
Safety (2005) A Strategic Framework for Adult Mental Health
Services in Northern Ireland. DHSSPS.
5 Department of Health (1999) National Service
Framework for Mental Health. Department of Health.
6 Department of Health (2000) Working Partnerships.
Consumers in Research Third Annual Report. Department of
Health.
7 Crawford, M. J., Rutter, D., Manley, C., et al (2002)
Systematic review of involving patients in the planning and
development of health care. BMJ, 325, 1263–1265.
doi:10.1136/bmj.325.7375.1263
PMid:12458240 PMCid:136920
8 Rutter, D., Manley, C., Weaver, T., et al (2004)
Patients or partners? Case studies of user involvement in the
planning and delivery of adult mental health services in London.
Social Science and Medicine, 58, 1973–1984.
doi:10.1016/S0277-9536(03)00401-5
9 Restall, G. & Strutt, C. (2008) Participation in
planning and evaluating mental health services: building capacity.
Psychiatric Rehabilitation Journal, 31, 234–238.
doi:10.2975/31.3.2008.234.238
PMid:18194951
10 Mersey Care NHS Trust (2007) Involving Service Users
and Carers – The Mersey Care Way. Mersey Care NHS Trust.
11 Haeny, O., Moholkar, R., Taylor, N., et al (2007)
Service user involvement in psychiatric training: a practical
perspective. Psychiatric Bulletin, 31, 312–314.
doi:10.1192/pb.bp.106.013714
12 Royal College of Psychiatrists (2004) Press release:
Royal College of Psychiatrists pledges mandatory involvement of
patients and carers in psychiatrists' training. Royal College of
Psychiatrists.
13 Trivedi, P. & Wykes, T. (2002) From passive
subjects to equal partners. Qualitative review of user involvement
in research. British Journal of Psychiatry, 181, 468–472.
doi:10.1192/bjp.181.6.468
PMid:12456515