Source 1: Tait and Lester get into the theory of involvement
The article by Lynda Tait and Helen Lester (link, scroll on to p2 of the pdf) is probably the most directly relevant I've found to date - it's called "Encouraging user involvement in mental health services". It gives policy context, a bit of theory, reasons why it's important, reasons why it's hard, good examples and finally recommendations for organisations.
In the theory section they cite a schema devised by Peck et al. in an interesting sounding article that is somehow not findable on the internet (if you look at the content list for that journal pages 440-452 are missing, the article is 441-451) so we'll just have to work with what they say about it. The schema was in turn put together from different models of involvement. One of these focuses on the different roles a service user might have with regard to involvement, ranging from least involved to most involved: they could be the recipient of communication (about decisions that have been made); they could be a subject of consultation e.g. via surveys and councils; and they could be the agent in control, like in a user-run group. Consultation is seen by the authors as better than nothing, but not yet good; it is not seen as meaningful participation as the user does not have decision making power. Interestingly a page later (171) they say the emphasis should be on "partnership, influence or control" for users. Partnership is not in the schema on p 170 and they do not define it clearly so I don't entirely understand what the difference between a place on a committee and "true" partnership is.
Source 2. Cole et al. and indicators of the right attitude
To go on about meaningful participation a bit more; from the sources I have read so far I have got a better understanding of when participation becomes meaningful. Just a place on a board or a committee won't cut it, there need to be extra measures in place to ensure that the service user is listened to, taken seriously, and given actual decision making power. A lot of this is about attitude and the way people treat each other, and as a result some of the recommendations I have found take the form of indicators of the right attitude, rather than of things that are good in and of themselves.
An example of such an indicator is the following recommendation given by Cole et al. that people at the top (managers, planners, policy makers, councillors) should have regular contact with service users. I don't directly see the practical benefits of this recommendation in and of itself - in practice it would take a lot of time to organise when the input of the users may not have direct relevance to what each of the staff persons is working on. However, if you see this as an indicator, it would show that service users have been effectively involved in all levels of decision making.
The book by Cole, McIntosh and Whittaker is called "We want our voices heard" and it reports the findings of a project in York to increase involvement of people with physical and learning disabilities. The findings are fairly transferable to mental health, which ties in to my theory that a big part of increasing involvement is about adhering to general standards of accountability and democracy, rather than trying to work around the mental illness of the service user (which is what stigma would have us believe this was about). It is for a large part due to the general hierarchical structure of healthcare and social organisations that even "normal" people would have difficulty trying to exert influence. Yet for mentally ill people and disabled people it is on the one hand more important to get involved, because the organisations tend to have a bigger impact on their lives (for mentally ill people, mental healthcare service runs their housing and their day activities and social trust decides whether they are still eligible for disability benefits and then gives or withholds those). On the other hand, it is harder to get involved, as because of stigma they tend to be taken less serious than people without a diagnosis, and because of the illness they may feel more inhibited and less confident.
All recommendations in a list
Below some of the recommendations given by Cole et al. taken from the list entitled "In a service with effective user involvement we would see at the strategic level:"
- Users should be in committees and sub-groups with appropriate support;
- There should also be parallel user-only sub-groups with negotiating power and a clear process for joint working with staff/professional groups.
(One of the benefits would be that service users may feel less inhibited when talking to other users; furthermore they can talk in more detail about what changes are desirable from the user point of view. It's a bit like a parliamentary special interest committee in that sense.) - The budget for user involvement is seen as essential and non-negotiable; a part of mainstream funding and not just an 'add-on' offered when there is some spare money.
(I think this one is more tied to physical/learning disability than to mental health, but it raises the question what the costs of involvement could be. I think for mental health the obvious costs are for advocacy services and support of an advisor or carer; also for covering travel expenses as suggested by the BMHRG. Tait & Lester say that a service should create paid posts for service users.) - Users should be involved in monitoring and evaluation on an on-going basis
(Perhaps this is the opportunity for the paid posts suggested above) - User involvement should be written into contracts.
- User-led research projects. In the decision-making process, research projects are an important stage as they influence the agenda: what are priorities for changes and improvements? When given a chance to do their own research, users ask different questions and may get different answers from the other users when interviewing. In one of my next posts I will write about research ethics; increasingly, users are objecting to simply being the subject of the professional gaze.
- User involvement in staff selection and training. I came across this idea before in the research for the post on user groups. This idea works on multiple levels; it gives the person who is applying or training for a job a better idea of who they will be working with, and what the job will be like. For the user it is a chance to exert influence on an important aspect of their own life, certainly if the staff is someone they would be in contact with every day. That said, even for a higher managerial staff position, it would improve contact and communication between the top and bottom levels of the organisation if users were involved in the selection.
- Inclusion in the workforce. Given that users are experts on their own illness (they have lived it so they know what it's like living with it) it is not too far of a stretch to say that they should get paid positions supporting other people who are going through the same. Furthermore they could get paid positions in education and training of staff (see point made above) and in planning and administration. (This short article is specifically about the success of peer support worker programmes)
Coming up next
The "two sides" idea that I propagated in the introduction to this post - participation can be worked on from the user's side and from the organisation's side - leaves out the role charities and services can have in encouraging and enabling increased participation. In the next post I'll talk about what position they could and should take. I also want to reflect on what is more conventionally seen as political participation, as I have been talking mostly about advocacy groups and healthcare organisations so far (though which good reason. Which one? Stay tuned.)
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