Memorandum from Shaping Our Lives National
User Network
BACKGROUND: ABOUT
SHAPING OUR
LIVES
Shaping Our Lives National User Network is an
independent user controlled organisation. All of the members of
the Shaping Our Lives management committee are service users.
We work across the full range of social care
service users—disabled people (including people with physical
and sensory impairments); people with learning difficulties; older
people; mental health service users/survivors; people who use
drug or alcohol services; and young people with experience of
being looked after in council care.
Shaping Our Lives' aims are:
— to support the development of local
user involvement that aims to deliver better outcomes for service
users
— to give a shared voice to user controlled
organisations
— to facilitate service user involvement
at a national level
— to work across all user groups in
an equal and accessible manner
— to improve the quality of support
people receive
— to enable groups to link to other
user controlled groups
— to develop links with world wide
international user controlled organisations.
To achieve these aims Shaping Our Lives undertakes
a range of research and development projects on relevant issues
and works with organisations such as the Social Care Institute
for Excellence, the Care Standards Commission, the Care Services
Improvement Partnership, universities, other agencies and the
Department of Health itself to support participation and involvement
initiatives.
Shaping Our Lives has three major projects at
present:
— Beyond the Usual Suspects—developing
diversity in user involvement is funded by the Department of Health
(DH). This project is examining the exclusion of some groups of
service users from user involvement in order to identify the barriers
that cause this exclusion and to produce guidance and training
materials to support service provider and service user organisations
to address these issues.
— The Standards We Expect is funded
by the Joseph Rowntree Foundation and involves Shaping Our Lives
leading a consortium of universities and other organisations to
carry out research on and promote the development of person centred
services.
— Shaping Our Lives' networking website
is an online resource for service users' organisations to share
knowledge and information. It has developed directly from Shaping
Our Lives' work with grass-roots service user organisations which
identified the need for a resource to support this type of communication.
It is currently supported by the Social Care Institute for Excellence
and future developments are likely to include other agencies being
able to use to website to communicate with service user organisations.
The Committee's request for evidence was discussed
at a meeting of Shaping Our Lives' National User Group. This group
is made up of representatives from user-controlled organisations
from around England and has members from Wales and Northern Ireland.
The membership includes a broad range of service users with disabled
people; people with learning difficulties; older people; older
people; mental health service users/survivors; people living with
HIV/AIDS; and people with experience of palliative care services.
Reference is also made to relevant findings
from Shaping Our Lives' Beyond the Usual Suspects project, although
it should be noted that the project is not yet completed.
RESPONSES TO
QUESTIONS PUT
BY THE
SELECT COMMITTEE
Do official consultations typically manage to
capture the views of the right people?
The group identified a range of service users
who are often excluded from consultations. These are -
— People with learning difficulties
— Service users from Black and minority
ethnic people
— Children and young people
— Service users from lesbian, gay or
bisexual people's groups
There was also concern about small, independent
organisations not being asked to take part in consultations.
Shaping Our Lives' Beyond the Usual Suspects
project asked a very similar question in its questionnaire to
service users about experiences of user involvement and issues
around diversity.
Responses to the questionnaire are still being
returned but at this stage the groups of service users seen as
being excluded from user involvement, in the order which they
are most frequently identified by respondents, are:
— People who communicate differently
(for example, non-verbally, using communication assistance, etc);
— People seen as having "profound"
or multiple impairments;
— People whose access requirements
are either not recognised or not routinely met;
— Service users who are refugees and
asylum seekers;
— People whose support costs are seen
as expensive;
— Service users in the prison system;
— People with drug and alcohol problems;
— People from black and minority ethnic
communities;
— Deaf people and people with hearing
impairments;
— People who live in rural/country
areas;
— Parents with young children;
— People who are seen as experienced,
"professional users" and able to speak up for themselves;
— People with learning difficulties.
Members of the group also felt that service
users who are known as activists or are likely to disagree with
the organisation carrying out the consultation are often not invited
to such meetings and events. It was suggested that organisations
would set out to identify service users who would not challenge
or be critical of the organisation to take part in consultations.
There was also a view that consultation meetings
are often carried out by workers who think they know what service
users want from services and set out to get the views they want
to hear from service users. It was also felt that service providers
often send large delegations to such meetings in order to dominate
them.
Other people suggested that the meetings are
often run by workers from lower to middle management who have
little power to make real change.
Again, this appears to be reflected in the findings
from the Beyond the Usual Suspects project where many people were
concerned about tokenistic user involvement and taking part in
consultations in which they do not feel that they are being listened
to, which consequently means action/change does not result from
their involvement.
There were also concerns about failures to address
practical and access issues that lead to service users not being
able to take part in consultations. Problems identified included
invitations to meetings at short notice, which can cause particular
problems where people need to make transport and support arrangements,
the lack of independent interpreters.
This is again reflected in the findings of the
Beyond the Usual Suspects questionnaire. Responses report a range
of negative experiences of practical issues around consultation/involvement
meetings. These include meetings being held at venues in locations
that are difficult to reach, at times which cause difficulties
with travel and are even in venues with poor physical access.
Issues such as jargon and inflexibility in the way meets are run
have also been report as reasons why people have found it difficult
to participate in consultations.
Are there situations where the views and experiences
of service users are irrelevant?
The clear view of the group was that the views
and experiences of service users are always relevant. The group
could not think of a situation where the views of users are not
relevant.
It was noted that part of the reason for this
is the importance of service users being aware of what is happening
and that this would not happen without involvement in all situations.
Is it possible to set minimum standards for public
services?
The group responded with an overwhelming "yes"
to this question. People said that standards must be set and enforced
and that services should not be allowed to drop below the minimum
standard.
Members of the group thought that there are
already many such standards but that service users need to be
involved in the monitoring of the standards and that service providers
must act responsibly on the results of the monitoring. To achieve
this all service users need to be aware of the standards.
The training of staff involved in the delivery
of services was seen as important. Many people in the group had
had the experience of services being delivered by staff who do
not know enough about the job that they are doing.
How valuable are advisory panels in the design
and delivery of public services?
There was a unanimous view again from the group
with people seeing them as valuable as long as there is proper
service user involvement:
"We are the experts! We know what we need."
Proper involvement should mean service users
being involved from the start of the process and having both mixed
meetings with service users, managers and workers and opportunities
for service users to meet on their own.
Having service users involved in the design
and delivery of services can produce cost and time savings but
the views of service users must be listened to and valued. People
felt that that:
"Learning from experience needs to go alongside
learning from books"
It was also said that learning needs to be applied,
"a human way" and not just "by the book".
Another point made about how service users should
be involved in advisory groups, and similar bodies, was that there
should always be at least two service users so that there can
be mutual support and less danger of their being pressed to follow
the rest of the group. It was also seen as important that service
users on such groups should be accountable to other service users.
This was expressed as:
"They must be real service users, not service
users provided by funders."
It was also seen as important that advisory
groups should be independent and a practical point was about ensuring
that service users do not have to work alongside staff who are
their direct service providers on such groups as this would be
a difficult relationship.
Should users be more directly involved in service
delivery? If so, how can this be achieved?
Overall the group thought that service users
should be more directly involved in service delivery, though there
was recognition that this would vary from person to person at
an individual level.
It was thought that this should include involvement
in commissioning, evaluation and monitoring. The point was also
made that there should be more service users working ins service
provision (the Disability Rights Commission has recently found
that requirements for the training and practice of jobs including
social work and nursing breach discrimination legislation).
Another way for service users to be more involved
in service delivery is for there to be more support for user-led/user-controlled
organisations, particularly in relation to their working as service
providers. This led to several points being made about the general
importance of financial support and resources for user-led organisations,
including the need for core funding. Many user-led organisations
face difficulties with funding cuts at present.
The point was repeated that service users need
information about the standards they should expect from services
and support such as advocacy should be available for people when
they make a complaint. Such advocacy can best be provided by service
user organisations
How does user influence relate to wider issues
of democratic accountability
While slightly uncertain of this question, the
group did feel that there is a link between user involvement and
issues of democratic accountability.
People in the group saw the issues as being
part of the same principle and sharing some of the same difficulties.
Achieving accountability was seen as an important part of this.
The issue was also linked to the rights/human
rights of service users.
February 2007
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