I wrote earlier today about
my current personal situation and concerns and outlined the fact that my life
has now settled down an changed. One thing I didn’t touch on however was my
involvement with Carer Support groups.
Well, I have reduced my
involvement to give myself more “me” time so I can enjoy my bird-watching and
photography. Does this mean that I have given up on the causes I have fought so
hard for over the years. Well, yes, in a way it does.
Two main aspects have caused
me huge disillusionment and distress… the behaviour of so many within the so
called support community and the behaviour of carers themselves.
I realise that I need to
justify these outrageous comments, so here goes. I’ll let you decide if I have
taken the easy road or made sound practical decisions… but to be honest, I
don’t much care how you see it!
Lets start with the carers
themselves… as a carer I know how little support I received until I fought
tooth and nail to get it, and was delighted to be doing voluntary work to make that
support more accessible to all carers.
However, I now question
whether the majority of carers really want that support. They need it, god
knows they need it, but do they want it?
I have worked with groups
who have laid on events with key speakers from all the delivery professionals,
we have had a great turn out from like minded professionals who want to know
everything that is going on, but despite massive publicity, do we see any
carers at these events? No.
We have advertised via
social networking, posters, post and every other way we can. Do we get any
interest from Carers? No
We have run clinics at the
Acute Units inviting Carers to come and talk to us to get the advice and
support that we fought so hard to get… putting into their lap, all they have to
do is say “hello”. Did we get any carers visit? No
The Mental Health Service
have had a great deal of bad publicity, ok, most deserve3d, but they are moving
mountains to improve things, and they want to improve things mainly by engaging
fully with carers and service users. I have been a part of these initiatives,
and the Trust has invest huge time and effort into setting up the events. Do
any carers come along? Very few… perhaps 75% of those who had confirmed
attendance the day before.
We arranged an event for
carers, to celebate carers this week, many wonderful people gave their time for
the pleasure of helping, to help carers, to give them support, advice and most
importantly some fun. Was it well attended? No
So many Carers have said
that they wish that the Trust understood how they felt about things. The Trust
has bent over backwards to facilitate exactly that… and do Carers turn out to
have their say… you have probably now guessed the answer… No
Now, there are many reasons
why Carers do not attend these events. Of course the mere fact of caring may
mean it is impossible to get someone to sit with their loved one, they may be
needed for caring purposes. The Carer may be sick of telling their story or
simply sick. All perfectly good reasons.
Less acceptable, to me, is
the other major reason, which is stigma. There is still a stigma with mental
illness, a stigma rooted in ignorance and misinformation, but it does make it
very difficult for so many people to admit publicly they are dealing with a mental
condition because of “what the neighbours may think”. I know it’s true, I see
it in practice virtually every day.
Don’t mistake me here
though, it is the fact that people have to think that way that is unacceptable,
not the fact that they don’t turn out because of it. That I can understand. We
have to break down the stigma… think some 20 years ago, the word cancer was
almost outlawed… it is now used openly and attracts massive publicity and
funding, yet mental illnesses can be every bit as devastation to sufferer and
family… so why not be open about it.
The other group is support
groups… now if some people read this I could be in trouble!!! But what the
hell. I have worked in a group where I have always thought the idealogy was
flabby, too worried about upsetting the service providers to actually do
anything.
The group was also in
receipt of public money to help carers, but virtually nothing was spent.
Myself, and a good friend, spent over a year battling with the apathy to get
the group to use the money, run events, take the challenge to the providers and
actually do something. It has been a long and fruitless battle. Between two of
us, we have been involved in around 10 projects with key service providers… all
projects that we have sought out for ourselves or been invited to be part of…
and these were the only 10 projects the group was involved in… the other
members were never supportive, everything we put forward was criticised,
condemned and voted down because some brainless prattos had tried it, badly,
before and it didn’t work. Believe me my friend and I had the contacts and
respect of the providers, and we made them work easily! What thanks do we get?
Does it need both of you to attend that meeting?
Once we both became officers
of the group, we started scratching beneath the surface… and found that the
group was never, contradictory to what we had been told, properly constituted,
had no workable procedures or policies, and the other officers were happy to
take the plaudit, but did nothing for the group… the secretary didn’t arrange a
single meeting, never took minutes, never did anything constructive. The
Treasurer insisted everybody but himself had all expenses verified by two
people, while he did his own.
We challenged this situation
and tried to improve things, but it just led to so much bad feeling, we had
already lost two members the year before who were nothing but arrogant
obstructions, the Chair resigned, presumably to look for a backbone and Pratto
and his mates continue in their own sweet ineffective way.
If they carry on, what will
they do? In all the years I’ve been involved I’ve never seen any of the others
have an idea or actually do anything. The relationships with the service
providers are mine and my friends.
So, in the future, I am
volunteering two days per week with the Recovery College, which is such a
fabulous enterprise, I will continue in my various committees on the Payment by
Results Programme and the Improving the Experience programme, all with the
Leicestershire Partnership Trust.
I will also continue to work
closely with my three good friends who have my total respect, trust and
confidence (you won’t know them, but they’ll know exactly who I am referring
to) on selected projects, especially in the areas of education, and of course
supporting people online through twitter and facebook.
For Carers, there are many
people out here who are only too keen to help you, to support you, to guide you
through the hell of your situation… but we can’t do it for you… you have to
stand up and ask, there has to be some input from your side as well
