The BMHRG suggests some very practical measures

(Note: I added a new page to the blog to explain the project I am writing these posts for)

I read the May 2012 report by the Belfast Mental Health Rights Group (BMHRG). They consist of service users and their carers and of families who have been bereaved through suicide, and they have ran a campaign for the past few years to try and improve first line care for mentally ill people in the Accident and Emergency room (A&E), specifically by lowering the time that people have to wait (4 hours just isn't acceptable if you are in a crisis) and by ensuring that people get a written notice of a follow-up appointment. In the report they explain how they have tried to monitor the progress on this campaign and in why they found it hard to. I wonder if A&E is really the best place for first line help as they are kind of notorious for making people wait for ages but to be fair the alternatives aren't as known or as accessible.

First of all I was very excited to read the following in their report as it confirms that my work so far has been on the right track:

Dr Helen Potts is a renowned expert in this area and she has previously
assisted the Belfast Mental Health Rights Group’s campaign for meaningful
and effective participation, her work and ours shows that participation requires
two things:
1.      Arrangements put in place to ensure participation at different stages
2.      Capacity building to ensure people have the ability to meaningfully and
effectively participate

We have been talking, on here, about capacity building; that's civic skill right there. However the arrangements at different levels are something that I still need to understand better; I think what it comes down to is that both the service user and the institution that needs to be influenced need to change things in order for participation to happen. The service user, with support from services (user-run or not) builds his capacity and in turn the institutions need to change their attitude to see the value and importance of involving users and carers and they need to put certain measures and agreements in place to make sure participation is meaningful, i.e. it is not just tokenism but users and carers have feasible influence and decision making power.

BMHRG go on to explain which practical measures they asked the Health and Local Care Board to take in order to allow the group to monitor progress and to know what was going on in the meeting. It is surprising how common sense some of these measures are, it seems like they are just requesting that common meeting etiquette is actually lived up to. This is their checklist (p.23/24 of the report):

Before the meeting:

• We had the date, time, location and agenda two weeks in advance.
• We had the opportunity to place items on the agenda and have them considered in a timely manner.

During the meeting:

• The language used was jargon free.
• Any information which was presented was in writing so we can discuss it with the rest of the group.

In general:

• Any disagreements were resolved at the meeting effectively.
• Our expenses were covered.

The list shows the challenges for any group of volunteers to participate: people have jobs/activities of their own so they need to be able to plan the meetings in advance and agree who attends them; they need to be able to discuss the meeting outcomes together and so they need to have the agenda and all the information from the meeting. The covered expenses makes sense if you know that a lot of service users rely on disability/jobseeker's benefits, but it also highlights that their participation should be valued by the Board. The Baoards's goal, after all, is or should be to offer a good standard of care; a goal which they cannot reach without input from those on the receiving end of the care.

The group sent the Board evidence that in over a year, these standards had not at all been lived up to. The Board have since given a staff member the task to ensure that they will in the future be lived up to; they have further said that they will use the lessons learned here in their wider participation projects, and that they would like to set up meetings so that this can be done. (p. 26)


Conclusions:

• The responsibility for making participation happen is on the side of the institutions as much as it is on the side of the service users
• Some of the measures that the institutions can take to ease participation are very practical in nature 

As for the attitude change; Liz Sayce and Barnes et al. (see previous post) all hinted that a lot of attitude change can be achieved by "just doing"; if a person who is open about their diagnosis finds a job, eventually people will realise that they can function normally and that they are not a constant threat (Sayce). For user groups the same goes: if a group calmly asserts themself and shows that they are well-organised and reliable, institutions will eventually come to accept this. In the case of the group studied by Barnes et al., the attitude change had been so far-reaching that by now, officials in the field feel it would be unacceptable for them to make a decision about local mental health planning without consulting the group first.