by Premila Trivedi
Extract from Openmind 110, Jul/Aug 2001
The Department of Health has preached for several years the importance of user/consumer involvement in health service development. So when I (a Black user) was approached by the department about being involved in development of the Mental Health National Service Framework, I naturally jumped at the chance.
Now, two years on, the words National Service Framework make my stomach sink and I am very clear I would never again be involved in such a disempowering and damaging consultation process.
So how did it all go so horribly wrong? Maybe I should just let the facts (particularly those which affected me) speak for themselves.
Marginalisation and devaluing of users: as Paul Boateng (then junior minister for health) said to the External Reference Group at the start of the National Service Framework for Mental Health consultation process: "I want to emphasize the importance of involving service users..."
Fact. There were only seven users involved in the whole group of 90-plus working on the National Service Framework consultation (compare this to 16-plus psychiatrists).
Fact. Seven users were spread over five of twelve sub-groups, which meant three users worked alone in their sub-group.
Fact. Users had no choice about which area of mental health they would work on. Significantly, none were allocated to areas which were very relevant to users...
Fact. The time-frame for consultation (three months) left almost no opportunity for users to consult properly with other users and feed in their views.
Fact. Trying to get our often lone user voice heard and taken seriously was extremely difficult and frustrating, and we constantly had to counter offensive and demeaning comments, e.g. "The users here are not representative, they are too articulate"...
Fact. There was no support built in by the Department of Health for users and no-one specific to turn to who could address issues when things became very difficult.
Fact. The insensitive and damaging way in which users were being portrayed and treated resulted in the resignation of two of the seven users before the end of the process.
Lack of proper attention to issues of race and culture: as Paul Boateng said to the External Reference Group: "I will expect you to think very carefully about the needs of users, particularly those like black and ethnic minority users who have traditionally been poorly served. Continuing failures in this area cannot and will not be countenanced."
Fact. Issues of race and culture in mental health were never seriously addressed, and there were only seven Black people (two users) involved in the whole group of 90-plus.
Fact. Those Black people with the most extensive knowledge of race and culture issues in mental health were not included in the process. Even when there was a public protest about this and a way forward was suggested, no attempt was made to rectify the situation or bring in these people's expertise.
Fact. The two Black users were subjected to both institutionalised and personal racism during the consultation process.
...These are just some of the facts, but I believe they say a lot. Perhaps if the Department of Health had practised what it preaches about user involvement, and paid attention to some of the points emphasized by Paul Boateng, things might have been different both in the process and content of the National Service Framework. This was such a good opportunity to really consider users and Black and minority ethnic people differently, value them as whole people and move mental health practice forward - but that opportunity was completely lost.
I'm not sure where the blame lies. I came across some really committed people while working on the National Service Framework who did try and address issues as they arose, but even at the highest level they somehow seemed powerless to influence the process. All I know is that the whole experience left me feeling battered and bruised and certainly in poorer mental health...