Saturday, 1 September 2012

when is the voice of service users not the voice for service users?

This is the conundrum.  And I think worthy of exploration and explanation.  The former I can attempt.  For the latter I will need more information.

I got wind last week of a national event, launching a patient safety programme in mental health.  Which had taken place earlier.  And heard it first through the tweeting of our national mental health service user led organisation VOX (Voices of eXperience).  To which I replied asking for more information.  No answer.  Interestingly, just checked their tweets and can't seem to find the original tweet or my question.  Did I imagine it?

Then on Thursday at a national crisis & acute care steering group I participate in, from the survivor perspective, I heard more about the patient safety launch event and the presence of service user voices.  Five places through VOX.  I wondered if I had missed an opportunity to put my name down, to be involved?  On the VOX website it says their aim is "to ensure that service users get every opportunity to contribute positively to changes in the services that serve them and wider society".  

So I Emailed the VOX chair about it.  Got a reply today.  But still none the wiser.  It seems that service users and carers were chosen to attend this patient safety launch through HIS, Healthcare Improvement Scotland.   What looks to be a government quango.  And of which the Scottish Patient Safety Programme is a member.  You might describe it as keeping it in the family.

The VOX chair works for HIS and says that invites went out in her work role through a "subgroup structure of vol orgs service users and carers".  Which brings me back to the question "when is the voice of service users not the voice for service users?".  The answer might be "when it is the voice of government" or "when it is the voice of only certain hand-picked service users".

I look forward to more exploration of what it means to have a voice as a service user or survivor.  And of hearing the full explanation to do with the service user and carer involvement at the launch of the patient safety programme.  I may be making mountains out of molehills.  Seeing conspiracies where there are none.  It's just that the topic of patient safety has been close to my heart since February this year.  When the person I care for was very unsafe and sustained injury as a psychiatric inpatient. 


  1. Chrys, I fear that this is typical of what's happening in the patient-centered movement. It's been coopted. The real service users are not granted a real voice. I think that Ted Chabasinski has it right in "The History and Future of Our Psychiatric Survivor Movement" (

    Sadly, this is what often happens to survivor movements that are uncomfortable for the powers-that-be.

  2. Thanks for commenting SpiderWoman and for the link to Ted Chabasinki's blog post from MIA.

    I actually don't think it is deliberate (I might be deluding myself) and is more about not including rather than excluding. There is truth in what you say about co-opting. Others describe it as being another "arm of the government".

    Of course it's all about power and who holds it. The giving of it and taking of it. See Ron Coleman's book 'Recovery: An Alien Concept?':

    Regards, Chrys

  3. Just had some interesting Email exchanges on this topic.

    I'm thinking that it's very difficult for people with 'lived experience' to speak out about human rights issues in the psychiatric system or mental health services when they are employed by government.

    'He who pays the piper calls the tune'