User involvement
59. The issue of genuine user involvement in planning
services was raised repeatedly throughout our inquiry, both in
the specific context of developing culturally sensitive services,
and as part of the more general picture of creating a service
responsive to the needs of users. We were told of a number of
major initiatives to seek the views of users and carers: the Department
of Health, for example, told us that one of the forthcoming national
surveys of users and carers would cover mental health services[127]
and emphasised the role of users and carers in developing the
National Service Framework. While this acceptance of the role
of users and carers represents a major and welcome shift in emphasis
over previous decades, we were also warned that the reality of
such consultation can often be suspect.[128]
Karen Campbell of the Manic Depression Fellowship was scathing
about the limited impact user involvement often has:
"I think we have reached
a stage, as people who use mental health services, of thinking
you ask us to come to meetings and listen to what we say, but
very, very rarely - I can count it on two fingers, does what we
say make a difference. I was part of the National Service Framework,
I was in the Users and Carers Outcome Sub-group with three professors
of psychiatry and a colleague from another charity, and we were
talking about user and carer led outcome measures. Needless to
say, none of the work that we did got into the National Service
Framework."[129]
Ms Campbell went on to argue that the best way of
tackling the problem was for a "bottom-up" approach,
helping user-groups develop their own services, rather than the
more traditional "top-down" one of asking users what
they think of services that are already being provided.[130]
60. David Joannides of the Association of Directors
of Social Services was more positive about the possibility of
genuine user-involvement, suggesting that:
"if you actively
embrace user and carer involvement in assessments and care planning
and recording the needs you are meeting and not meeting, and you
actually treat those as partners not as simply recipients of a
service on a take it or leave it basis, then you are developing
a much greater appreciation of how well you are doing as a service."[131]
He also pointed out that the policy of "best
value" required social services to challenge how they did
things and to consult with service users.[132]
Dr. Mike Shooter of the Royal College of Psychiatrists argued
that one way of addressing the danger of "tokenism"
was to ensure that users were involved in the training of healthcare
professionals in a much more routine way than they are at present.[133]
61. Other witnesses emphasised the importance of
outcomes being defined by users, not by service providers.[134]
Christine Craik of the College of Occupational Therapists, for
example, pointed out that "often those outcomes will be what
other people will see as very mundane things ... they may be to
enable them to do the everyday tasks which people have difficulty
with because of their mental health problems."[135]
62. We believe that it is crucial that users and
carers are involved in all aspects of service delivery. User-involvement
in setting the outcomes which services aim to achieve should be
central in service planning. It is clear that such involvement
can only be more than lip-service if the professionals involved
are prepared to regard users and carers as equal partners, to
involve them early on in the process when decisions are actually
being made, and, sometimes, to hear uncomfortable views without
feeling personally or professionally threatened. We appreciate
that this will involve, for some, a new approach, and strongly
recommend that both the pre- and post-qualification training of
all health and social care professionals should include structured
input from users as part of a national programme.
Stigma
63. The stigma of being labelled "mentally ill"
or "mentally disordered" is clearly a factor in many
of the difficulties experienced by individuals with mental health
problems when living in the community. This was put to us forcefully
by Dr. Mike Shooter of the Royal College of Psychiatrists, when
describing the anti-stigma campaign his college has started:
"The members of the
users and carers group in the college, for example, have said
to me when they have listened to the philosophy of a campaign
like that, that it is very laudable but in the end it will not
help unless they can get insurance, unless they can get a job,
unless they can get a mortgage without running up against the
sort of institutionalised stigma we were talking about before."[136]
Witnesses suggested that the main trigger for the
sort of stigma associated with mental disorder is fear: fear of
one's own vulnerability to mental illness[137]
and fear of difference, exhibited for example through apparently
aggressive behaviour or abnormal social skills.[138]
Some of our witnesses argued that the Government itself had sent
out stigmatising messages, with its statement that community care
had failed and its emphasis on the risk posed to the public by
some mentally disordered individuals.[139]
64. Education is clearly key in combating the myths
surrounding mental disorder and the fear many feel when faced
with mental distress. David Joannides of the ADSS suggested that
personal and social development in schools, together with community
service in years 9 to 12, will help combat ignorance from an early
age, while Dr. Shooter of the Royal College of Psychiatrists argued
that the most powerful effect on adolescents' views of mental
illness can be achieved through positive images in the popular
media, with a good example being the portrayal of Joe in East
Enders.[140]
Department of Health officials highlighted the requirement in
standard one of the National Service Framework to overcome discrimination
and described initiatives such as World Mental Health Day and
work with the media to encourage them to present more realistic
images of mental health problems.[141]
65. On the issue of media representation of mental
illness, Mr. Joannides also drew attention to the role that service
providers can play in the very practical sense of improving their
own services and ensuring that vulnerable individuals are not
left unsupported:
"The more we can get
the basics right, the more we can reduce the number of causes
for the media to highlight cases."[142]
This approach was taken up forcefully by the Secretary
of State, when we raised with him the stigmatising effect of the
way inquiries into homicides by people in touch with mental health
services are reported:
"With respect what undermines
the good work is the systems failure, it is not the [homicide]
inquiry."[143]
66. We agree that, the more mental health services
are able to "get the basics right", the easier it will
be to challenge the fears surrounding mental ill health. We would
encourage the inclusion of discussions of mental illness in the
school curriculum. But we also call upon the Government to take
a more proactive approach in challenging the perceived link between
mental disorder and dangerousness. We recommend that the Government
should fund a high profile public education campaign on similar
lines to that supported recently by the Australian government
which included extensive television, cinema and outdoor advertising
to educate the public about the realities of mental illness.[144]
We also believe that the Government's own current emphasis on
risk conveys a highly misleading message to the public. We return
to the subject of risk later in this Report (see below paragraphs
125-131).
56 Ev., p72. Back
57
eg Ev., pp62-63; Ev., p149; Ev., p253; Ev., p301; Q224. Back
58
Q499. Back
59
eg Department of Health, Modernising mental health services,
December 1998, para 3.19. Back
60
Q171. Back
61
Q359. Back
62
Q172. Back
63
eg Q356; Ev., p53; Ev., p321. Back
64
eg Ev., p299. Back
65
eg Ev., p66; Ev., p321. Back
66
eg Q171; Q173. Back
67
Q473. Back
68
Ev., p148. Back
69
eg Ev., p253; Ev., p294. Back
70
Ev., p294. Back
71
A full description of the programme is given at Ev., pp351-353. Back
72
Ibid. Back
73
eg Q208. Back
74
eg Ev., p283. Back
75
Q165; Q204. Back
76
Q207. Back
77
Q204. Back
78
Q348. Back
79
Q677. Back
80
QQ406-407. Back
81
Ev., p283. Back
82
Medical services, Third Report of the Social Security Committee
(HC 183, Session 1999-2000), paragraph 57. Back
83
Ev., p325. Back
84
eg Social Security Advisory Committee, Social security and
mental health: report on the SSAC workshop, 1996, p51. Back
85
Social Security (Welfare to Work) Regulations SI 1998/2231. Back
86
HM Treasury, Budget 2000, HC 346 1999-2000, p75. Back
87
Ev., p6. Back
88
Ev., pp5-6. Back
89
eg Ev., p284; Ev., p297. Back
90
Q202. Back
91
Q393. Back
92
Q353. Back
93
Q404. Back
94
Q501. Back
95
Q499. Back
96
Ev., p297. Back
97
Ev., p145. Back
98
Q353. Back
99
Q402. Back
100
The relationship between health and social services, First
Report of the Health Committee (HC 74-I, Session 1998-99), paragraph
68. Back
101
Ev., p279. Back
102
Ev., p153. Back
103
Ev., p58; Q623. Back
104
Q625. Back
105
Q625. Back
106
Ev., p305. Back
107
eg Ev., p279. Back
108
Q168. Back
109
Nafsiyat Business Plan 2000/2001. Back
110
Ev., p310. Back
111
Q211. Back
112
Ev., p279. Back
113
Q362; Q623. Back
114
Q362. Back
115
Ev., p153; Q534. Back
116
Q197. Back
117
Q155. Back
118
Q217. Back
119
Ev., p279. Back
120
Q362. Back
121
Q362. Back
122
Northern Birmingham Mental Health NHS Trust, Annual report
and financial summary, 1998/99. Back
123
Q686. Back
124
Q686. Back
125
Q98. Back
126
Ev., pp209-210. Back
127
Q9. Back
128
eg Q538. Back
129
Q214. Back
130
Q214. Back
131
Q497. Back
132
Q540. Back
133
Q537. Back
134
eg Ev., p277; Ev., p292. Back
135
Q507. Back
136
Q544. Back
137
Q546. Back
138
Q548. Back
139
eg Q472; Ev., p73. Back
140
Q551. Back
141
Q71. Back
142
Q548. Back
143
Q664. Back
144
National Community Awareness Program, summarised at www.health.gov.au. Back