I Got Angry Again

I’ve been involved in supporting carers of people with Mental Illness for a few years now, I got involved because I saw my wife receive such bloody awful service at the hands of the NHS, and as a Carer I was treated like dirt, got no support whatsoever from them. Indeed it got so bad that her consultant actually said she would rather she and her staff lie than tell me they didn’t know something.

I feel that I am reasonably eloquent and intelligent (though others will possibly dispute those points of course) and certainly can be stubborn. I really don’t want to see others have to go through the same crap we went through so have committed myself to doing what I can do to help to improve matters.

I work with some really committed, passionate people, who are all of the same mind, simply want to see an improvement to the service for everyone’s benefit. The thing about this work that consistently upsets me is the number of people involved in campaigning for the wrong reasons… either to line their own pockets, boost their own egos or to just talk and claim passion but do nothing so that they can tell their cronies at the golf club or women’s institute about the good deeds they are doing.

OK, I have been accused of volunteer snobbery for this view, I wont comment on that, but if you think it’s true, it doesn’t really bother me to be honest. I just want to do my bit to help our vulnerable people.

Today I have had a very mixed sort of day, one that left me feeling very frustrated and angry.. let me try to explain why….

Some time ago a friend of mine devised a training initiative to present to members of the Mental Health Service to try to get a better understanding of the carers role. The principle is simple, carers simply tell their stories, highlighting problems, fears and the emotional impact of the caring role. This is done by a series of Talking heads, where one carer interviews the other.

After the Talking Heads, and a break, we split into groups, and invite the professionals to tease out the main issues, consider some possible solutions and look for barriers, which may prevent progress.

It is a fairly simple process, but when the event is delivered well, with compassion and commitment it is very powerful and effective. However good the professionals they will hear things that shock and upset them…. And they will respond positively.

The principal has now been extended to concentrate on young carers, under 25 years old, though many are significantly younger than that. The event runs in exactly the same way, but the carers are all youngsters.

I attended a Young Carers session for the first time, in the role of support for the young people who were to deliver the talking head sessions. What I witnessed through the day made me extremely unhappy.

Not the fault of the young carers, who spoke eloquently, with passion and painful honesty about their situation, it would take a very hard heart not to have been moved, but sadly their stories, and their courage was insulted and marginalized by the behaviour of the team, running the sessions.

The session started late, despite the fact everyone participating was there some 90 minutes before the scheduled start. The whole event then opened with a an hours ramble by a presenter who was using scruffy flip chart pages which were out of sequence, who faced the flip chart to read it consistently, never made eye contact with his audience, and generally demonstrated a lack of real understanding or compassion for his subject, lack of respect for his audience of the health care professionals.

He briefly handed over to his co-presenter, who had written her speech out an hour or to earlier, but sadly gave the impression of being too drunk to read it, frequently asked for help from her colleague and got many of her facts wrong.

A third colleague stepped up to do a speech, which didn’t mention the young carers at any point, rambled inanely and didn’t actually say anything.

The first presenter then resumed, only to be interrupted by his colleague because he had missed bits out, which he struggled to incorporate.

This introduction ended with the presenters all stressing the importance of respecting the young carers, listening in silence and raising any issues in the discussions afterwards. The first carers had only been talking for a couple of minutes when one of the presenters callously interrupted them, booming out pointless and inane questions, which had he had the courtesy he demanded of others were answered within the talking head section anyway.

Throughout the introduction section it was clear that one presenter was in no condition to be there, as became spectacularly apparent a bit later, the lead presenter did not know most peoples names, ignored the young carers who were doing the talking heads, afterall the central point of the event, and was so jealous that if anyone got into a conversation with any of the decision makes from the Health Service he butted in, took over and left the other person feeling belittled and offended.

He also raised many issues around the age of the young carers, after all the point of the young carers event is that there is no minimum age for a carer, many are born into it and are caring before they start school. He was never able to offer a reason for his pointless obstinacy other than “it is the law”… didn’t know which law, or why, just that it is the law.

This sort of behaviour is in my view, unacceptable, and does the cause more harm than good.

The other aspect of people being involved for the wrong reasons is demonstrated in another group I work with, where we had members who spoke with passion, real strength and conviction, but sadly not much sense or knowledge, and who by force of personality won debates which they should not have done.

Their involvement was, as far as I could see, purely to sound off and to be able to tell people they were doing a great deal of charity work, when in fact they were stopping the others from doing anything constructive.

I believe that these “talkers not doers” and the kind of presenter described earlier are simply devaluing the work of the genuinely committed people who want to simply make a difference. These people should not be allowed to work in charity or voluntary work, they give the role a bad name, tarnishing all the good people involved. They hold back any real progress and simply frustrate their colleagues by their negativity and incompetence.

OK, this may be volunteer snobbery on my part… as I said earlier, I don’t care. I am driven to achieve things in terms of supporting mental health patients and their carers, improving the service provided and seeing a real positive difference.

I do not want to work with those whose role is to hold that back, or whose lack of commitment or passion devalues the work of others and dilutes the message…

I have been associated with the young carers of Labelled for a few months now, and it has been an incredibly invigorating, and indeed humbling, experience to work with such a great group of youngsters, doing what they believe in, with commitment, passion and energy… as all the support groups should be. It has totally brought me back to life, and I am now working to infect all the groups I am associated with the same passion and drive, so we can really make a difference rather than just talking about it.