Avoiding being a Token Carer on involvement


Welcome to another blog post by mental health carer from South London Matthew Mckenzie.  This blog post is about involvement and spotting the signs of tokenism.  Involvement grants Carers, patient and public to volunteer (paid or unpaid) their time to submit their views.  Usually Carers can attend meetings with mental health staff or attend workshops, perhaps event work on a project.  Most often involvement works out fine, but there will come a time when you as a carer will feel unimportant.

I mention the Triangle of Care, which provides excellent tips on carers wanting to become involved in their local Mental Health Trust.


I have provided a long video regarding the dangers of becoming a carer token on involvement.  However to make things more easier, I have provided a list of topics I speak about within the video shown below.

The first part of the video breaks things into a list.

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Before and during involvement

  • At the recruiting stage there is a Lack of carers, outnumbered.

At this stage, you feel they have not tried hard enough to recruit other carers to be involved where at least you feel comfortable airing your views.

  • Allies outnumbered or out gunned.

There will be times where you are outnumbered regarding your views, not always a bad thing, but this can also be used to silence someone, especially if their opinion has a strong foundation.

  • Senior or management no show, lack of interest.

Involvement must be supported all the way to the top, if managers or senior staff show no interest, then it is a grand example of tokenism.

  • Bar set too high leading to not understanding what facilitators want.

Carers wanting to be involved can be swamped with healthcare jargon to put them off.  I have been to meetings where I have no idea what or when to say anything, it got so bad that a staff member had to raise carer issues on my behalf, eventually I avoided attending the meeting.

  • No incentive for being involved.

Healthcare advisors get paid a lot of money, well a fair number of them.  I guess you are only as vital as your involvement, if the incentive is low to non-existent, then no one is going to want to be involved at all.  This is dangerous if a project demands a high number of hours.

  • Venue is not fit for purpose.

Not a big issue, but a venue does show how much involvement carers about those wanting to provide feedback and information.

  • You dont feel welcome e.g. “Oh, not him/her again”.

The above can be used to stop those wanting to turn up.  This can be argued if it involves those who are disruptive at meetings, but it can be used to attack those who press for progress in a diplomatic way.

  • Feel like you being moved on as an excuse to get rid of you

Another way to push people out.  It can be an excuse to move those on and not involve them at a higher level.  There are examples of carer advocates who have a lot of knowledge on the problem of mental health services, but they get moved on for all sorts of excuses, especially if they are a threat.

The middle part of the video describes involvement excuses.

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  • The Us V Them complex.

Mainly used if you have no clue or evidence regarding the views of others.  It can be a lazy way of saying we are not interested in your views at all.

  • Talking down to you and not at you.

Very common in bad settings, almost a bullying tactic.

  • Carers feel the project manager is being defensive about services.

Another common method of hiding something, such methods should signal that there is a problem if facilitators or project managers are being defensive over something they are not involved in.  Most use this tactic to defend reputation.

  • Feel that you are questioned all the time.

Carers involved can come under scrutiny, especially a vocal and confident carer, after a while this can cause project managers to paint the carer as a problem and use this method to silence them.

  • The ‘we are the professionals’ attitude.

Very common regarding NHS involvement.  Want to know why some community projects fail? Its because no one understands terminology, sometimes it can be used to be very clever and push projects through.

  • Lies, lies and statistics.

A method used to cloud judgement, the video will pick up on this term more.

  • Between a rock and a hard place.

There is always more than one option, if a suggestion is made by carers or service users involved on an NHS project, meeting or consultation, there should be no reason why views are disregarded because of lack of options.

  • Weak analogies.

A way to shut out carers from being involved on other projects, if a carer wants to attend a meeting to observe someone could object stating that if one carer attends then 70 other carers will attend.

The end part of the video looks at Body and emotional language

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  • Closed expression.

You can tell your not wanted due to observing peoples body language.

  • Appealing using emotional persuasion.

Fairly common and can be often childish.

  • Bully or anger management issues.

If project managers, senior staff who facilitators end up being under pressure, expect them to become abusive.  However other carers or service users can use this tactic to get their way at meetings.

The last part of the video looks at feedback or end of involvement

  • No response.

Fairly common, usually resource issues can cause the above.  After a meeting or workshop, you get no response from your feedback.

  • Hard to find follow ups.

The above has happened to me countless of times. The old “I forgot to put my email auto-response on”.  So boring to hear this time and time again as their are ways to check if someone has every intention of responding.

  • Overuse of reports.

Carers can be overloaded with reports if they inquire into a situation that might make people think again.

  • Inaccurate minutes or documents.

A very sneaky trick, the video will explain a bit more about this.

I hope this blog post has been useful in avoiding the pitfalls of involvement.  There is no way to avoid all aspects of bad involvement, even the most experienced will be caught out, but to know some of the problems, is better than none at all.