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What
are the reasons for user involvement?
There are three main reasons for user involvement:
1. Legislation
and Policy
At all levels legislation
and policy documents call for the need for users to be involved in the
planning, the delivery of services and in receiving care.
2. Involvement
of Stakeholders
Users are the main
reason for the existence of services and, as such, are the people who
will be most affected by any changes to the care that they receive.
It is therefore very important that they have a say in what happens
to services.
3. Expertise
Through their experiences
of life with a mental health problem users gain an experience of services
(and gaps in services) and care that cannot be found elsewhere. This
experience is vital in the development of appropriate services.
 Why
users would wish to influence services
Many users are very
happy with the idea of user involvement. The main reasons for this are:
1.
To be able to give something back to the service providers involved
with people with mental health problems.
2. To be able to help other people receiving services to have a better
experience than they have had.
3. To be able to contribute to a movement that is dedicated to removing
discrimination and abuse of users in the community.
What
are the problems in involving users effectively?
There are a number
of barriers that make user involvement difficult. If these barriers
can be removed, or adapted, then user involvement becomes easier:
The planning
process and involving new people:
There are a number
of barriers that would confront anyone showing a willingness to participate
for the first time:
Language
Despite the best efforts of all agencies the language used in written
and verbal form is often alien to people new to the process and may
make it very hard to understand what is happening in meetings or to
get to the true meaning of documents.
Familiarity
Most professional workers will meet each other regularly. It is likely
that a new person will feel like an outsider in an alien world at first.
Concepts
It often takes time to gain an understanding of the philosophies of
care and service deliver, which are the bread and butter of the day
to day work of professionals. Not knowing these concepts, or disagreeing
with them, may make a person feel very awkward.
Participation
For many people speaking in groups, sitting round boardroom tables and
coming to terms with meetings with agendas and minutes can be an intimidating
process.
Solutions
1. Use plain English, avoid abbreviations and steer clear of unnecessary
convoluted arguments.
2. Explain new concepts, welcome debate from people new to the ideas
being used and don't ignore what appears to be embarrassing opinions
- follow them up at appropriate moments.
3. Provide short, easy to understand, material about the major concepts
and philosophies people will be discussing.
4. Welcome new people - don't exclude them for the sake of comfort.
If necessary change to a less formal style of meeting.
Barriers
specific to people with mental health problems
Attitudes
The stigma that affects people with mental health problems does not
only come from the general public - it can also be found amongst professionals.
It manifests itself in antagonistic attitudes to users, whether it be
to those involved in planning or those attempting to take a more assertive
role in their own care.
Antagonism
Within the user movement and amongst professionals there has often been
an unspoken adoption of a "them and us" attitude. From a professional's
point of view this may manifest itself in the belief that the only users
who get involved in speaking out are those who have a grudge against
services or professionals, and that for this reason their views should
be discounted.
Changed Roles
It is possible for users to get involved in planning services with professionals
who are also directly involved in their care. The switch in roles from
the person treating someone and the person receiving treatment to one
in which different aspects of people come out can cause some awkwardness
and defensiveness on both sides.
Agendas
Whilst, on the face of it, both professionals and users have the same
agenda of improving services there are often large differences in approach.
For users there
is often a huge emotional investment in the issues being discussed and
also an ability to see what would help that is not restricted by budgets
or geographical or agency boundaries. This can lead to some professionals
coming to the belief that users are needlessly idealistic or optimistic,
or alternatively naive when it comes to navigating the system with which
they are faced. It can also cause users to become impatient with the
pace of change or to lose hope that things will change.
Representativeness
A common complaint about user involvement is that the users concerned
are not representative. A glib answer to this is that professionals
are themselves very rarely truly representative! A small group of users
can, whether they are representative or not, provide very valuable insights
into services and lessons for future practice. Many user groups, if
not representing all interests, will attempt to convey the wide range
of issues of which they are aware. Their power to do this increases
with the number in the group, the degree of democracy within the group
and its communication amongst its numbers.
There are also some
user groups which will campaign to a specific agenda and make no attempt
to convey differing views. This can also be highly useful if their agenda
is explicit.
It should be born
in mind that the major political parties do not represent the entire
population and likewise a self-advocacy group will have difficulty representing
or even finding out all views.
Power
Both working with planners and in receiving care there is an imbalance
in power that can lead to antagonism.
From a users point
of view professionals can often be perceived as the possessors of resources
and solutions, the controllers of committees and the gateways to services.
This power imbalance extends to the fact that all professionals are
receiving a wage and can walk away at the end of the day, whilst many
users are in the opposite situation. This can lead to resentment and
an inequality in participation that will discourage users from staying
involved.
Finances
A large number of users are in receipt of benefits and unemployed. Involvement
can be discouraged because some users cannot afford to travel to meetings
or to pay for meals when away from home.
Commitments
For those users who are working or have children to look after it can
be impossible to become involved in planning decisions because of those
commitments.
Results
Users
will in the main get involved in order to improve life for other users
and in general will do this for nothing except the knowledge that they
are making a difference. If they do not get feedback about improvements,
change seems unlikely or they feel that they are just there for the
sake of it then it is likely that they will drift away from the process.
Solutions
Professionals should
go through some form of mental health awareness training
Getting over antagonistic attitudes requires time, a willingness to
listen and a willingness to suspend judgement from both sides.
If changes does
not occur it would be wise to examine the commitment that there is to
user involvement. Where specific things are requested, and will not
be provided or will take a long time to develop, the reasons should
be explained.
One way of addressing
power imbalances is to give power to users - for instance by users running
their own services. Power is sometimes unavoidable and can sometimes
not be relinquished without damaging people. However, communication
and humanity can start to redress the balance. In planning it is often
useful for professionals to come to user run meetings where at least
some of the elements of power are shared.
No user should lose
out when they choose to get involved. Subsistence and travel expenses
should be paid and consideration should be given to some form of payment
when their involvement crosses the boundary between volunteering or
activism and work.
Where users can't
get to meetings then either other users should bring their views forward
or people should go to meet them, out of hours if need be.
Barriers
caused by having mental health problems
Having a mental
illness, or being treated for it, may make user involvement difficult:
Confidence
Many people with mental health problems can through the trauma of mental
illness, the pain of stigma or the hopelessness of unemployment have
very low feelings of self worth or confidence.
This may make it
very hard for them to participate in meetings or to believe that there
is any value in what they are saying, especially if they are surrounded
by people who appear to be confident and well aware of all the issues
being discussed.
Concentration
Medication and illness may both conspire to make it hard to concentrate.
This can make long meetings hard to cope with and can make complex arguments
and jargon hard to put up with.
Times of meetings
Many users, because of medication which makes them lethargic in the
morning or illness which keeps them up at night, may find it hard to
attend early meetings.
Reading
Some medication causes blurred vision - this can make it hard to read
literature. The same also applies to people who have difficulty concentrating.
Continuity
Periods of hospitalisation or illness can make it impossible for an
individual to continue their presence at meetings or to participate
in them.
Illness
In the main users would voluntarily absent themselves from involvement
when acutely ill and would rely on other users to take their place or
professionals to look after them.
However, some users
may continue their involvement whilst being ill. A number of barriers
can then arise such as:
People who are psychotic
or paranoid may find it very hard to associate with people or to participate
in any meaningful way.
People may get panic
attacks if they feel themselves to be in an antagonistic or alien environment.
People who are depressed may lose all confidence in their ability to
participate (see Confidence heading).
Solutions
In organisations
like the Highland Users Group it is well established that if a representative
is unwell then another member will take their place in meetings. An
effort is always made to ensure that a user does not attend meetings
on their own but has support.
Meetings are kept
as informal as possible and members strive to make them as safe and
secure and as tolerant of different feelings, experiences and emotions
as possible. The use of groundrules, while potentially being used to
exclude people who are ill, are mainly used to provide security for
all members.
Attempts are always
made to communicate in plain English.
Where a member is
not well enough to communicate with professionals they are encouraged
to participate in other ways until they are well enough for a greater
level of involvement.
Where a member's
illness does not interfere with the HUG groundrules people would be
expected to adapt to the problems that the person is facing
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