Voice - 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.
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.
Many users are very happy with the idea of user involvement. The main reasons for this are:
There are a number of barriers that make user involvement difficult. If these barriers can be removed, or adapted, then user involvement becomes easier:
process and involving new people:
There are a number of barriers that would confront anyone showing a willingness to participate for the first time:
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.
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.
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.
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.
go through some form of mental health awareness training
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.
Having a mental illness, or being treated for it, may make user involvement difficult:
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.
Times of meetings
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).
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
Highland Users Group
Tel: (01463 723560) Email: firstname.lastname@example.org