We are all in favour of user involvement.
It is at the heart of the NHS plan, and there is no greater truism than the statement that services are there for users. Less obvious is how users can determine their care, and how involvement can lead to empowerment.
In no other area of health care are users faced with more obstacles than mental health. You know the typical scenario. A group of managers or clinicians discusses the future of mental health care. Someone knows of a pleasant user who behaved well in another meeting.
Involvement achieved. Rarely does anyone ask why this invitation is extended or what might be the potential influence of this isolated and unprepared person. Often raised is the question of representativeness, but mostly to exclude rather than include outspoken individuals.
Funny how rarely psychiatrists are excluded on similar grounds. The concept of institutional tokenism hasn't been launched yet, so here it is.
In fairness, user involvement and empowerment are riddled with difficulties and contradictions. Terminology is unhelpful, choice conditional and representation fragmented.
Let's explore these obstacles in a bit more detail.
Whoever invented 'service user'as a term to describe all people with mental health needs has a case to answer. It suggests that only those in contact with services qualify. This is confusing at a time when we are most concerned with those service users trying hard not to use services, and it excludes those we are reluctant to look after.
Is a drug user with a personality disorder who is keen to receive treatment but has nowhere to go a 'service user'? Language matters, and the term 'service user'unintentionally disempowers many sufferers. 'Customer'would at least identify who chooses and who pays the bill.
Choice is probably at the heart of empowerment. It is no coincidence that user groups have been fighting for the services they want - mostly crisis homes and occupational opportunities - as alternatives to the care imposed on them. In users'eyes, choice in mental health is only tolerated if it is a wise choice, and wisdom is determined by professionals.
Take, for example, two self-help groups. The first was a valium-withdrawal group. It was enthusiastically supported by professionals, and was very successful from everyone's perspective. The other helped users who choose to withdraw from anti-psychotics. The group was maligned by staff and considered irresponsible. Obviously it received no support.
Participants, however, felt much better without their side-effects.
Is it necessarily irresponsible - or, closer to the bone, mad - if someone prefers periods of wellfunctioning punctuated by breakdowns, rather than being constantly disabled by severe sideeffects?
It should be a powerful national user movement that puts such issues on the agenda of its meetings with government. Unfortunately the movement is low profile, so no such opportunities are available. But then, how could such complex groups emerge without assured support and funding? There is a fine balance between respect for independence and neglect.
The potential leaders are out there - I have met many of them - but it must be wrong that they are busy sending begging letters for a couple of hundred pounds to pay for travel expenses. If we want an articulate national movement, we will have to fund it.
But the user movement consists of a multitude of small-scale local groups. If funded, money will come from local under-spends, making these groups totally dependent on approval by the statutory services.
The current isolation has diluted earlier radicalism. No longer is the objective to start a national campaign against the discrimination suffered by people with mental health problems looking for jobs in the private sector.
Instead the hope is to find a job on the grounds of a user identity: working in a hospital as an advocate or as a user consultant. Of course such jobs are valid, and they are key first steps towards recognition, but on their own they can reinforce stigma and discrimination. The danger is playing into the hands of those trying to create institutions in community care, keeping users away from the real world.
User empowerment should have as its objective that people with mental health problems are respected as citizens, not patronised as suffering from a mental illness.
As always in mental health, stigma is at the heart of the debate, at every level. Unique in health care, mental health service users are often blamed for their poor care. When vaccination rates are low the GP is told to be more in touch with local concerns, and loses money.
If a mental health user does not turn up for treatment, that person is unmotivated. The prime concern is the absence of a risk assessment. The user's fear of the consequences of being a user are ignored. Working with that fear should be the starting point of user empowerment, and involvement should flow from it.
It won't come cheap, but it has to be a priority.
National and local user groups have to be funded directly and given statutory powers beyond the proposed patient advocacy and liaison service. User groups could possibly be accountable to scrutiny committees, since they are part - and need to be seen as part - of local communities.
However, user groups can only be effective if allowed influence. My experience, based on some inspired examples, is that such powers are used constructively, and can produce the trust rightly referred to in the NHS plan as the glue that binds us together. The biggest prize, though, is that it might signal to the wider community what can be achieved by empowerment, a message valid beyond mental health.