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Nobody but a carer knows what they are going through and they need help because they are
not trained to deal with someone who is dealing with psychiatric illness
"The point about helping carers is that I think we need to help them go on doing what
they are doing. Talk to any carer and they will say the one thing they need is a break,
and I do not think enough now, actually put the budget in their hands and say you deicide
how best to get that respite break, to get the extra help in your home. I remember trying
to do this myself with the care for my son and it’s incredibly complicated this whole
agenda should be abut putting power and control in peoples hands letting them do more, because
if Britain’s armies of carers gave up that would cost our country £50 billion and actually
lead to heartbreak for so many people they really are hero’s and heroines."
I think my job is really interesting because as well as working with clinicians I work
with carers as well and that gives me a very good perspective of both sides because I am
a carer myself and I attend support groups. I understand why they are not happy of certain
aspects of the services they receive or their family members receive. I am able to communicate
with them and explain the difficulty our staff have in sharing information and offering support
to them.
My caring role stands for 30 odd years because it started with my wife, and then after her
death it then started with my daughter. It has been long journey and it is still going.
I am a carer for my daughter now she has got the same illness as my mum, she has Schizophrenia
and plus I am a carer to my husband, so I care for two. Somebody had actually told me
you are a carer before then I was just doing what I could for my son like protecting him.
In the early days of my wife’s illness I was not told anything and I used to go to
the GP and ask what was happening and they would say ‘Sorry we cannot discuss this
with you due to patient confidentiality’ but what they did not seem to understand was
that I had taken over the persons life completely as their life was out of control so I was
having to manage their life.
I think first of all when someone is admitted to an acute ward, we try to get their consent
to share information with family carers. If they give consent that will make our work
a lot easier but even if they do not give consent we can still share general information
about the ward's and treatment in general. We do not want to stop communicating with
carers just because the service user will not give us permission.
My wife tried to kill herself one day and it was shortly after the birth of our son.
I did not realise at the time but she was suffering from post natal depression. She
was admitted to first of all Greenwich hospital where she had been in a coma which I suppose
that’s when I became a carer but after that it became quite severe so she was taken back
into hospital because she continuously threatened to kill herself.
Its very hard because my daughter couldn’t be left by herself I had to be with her all
the time, I didn’t have a life.
And I had friends and relatives who turned their back on us because they got fed up with
the hostile reception they got when they came to our house. I became more and more isolated,
and equally I was looking after two young children who were growing up. It became increasingly
frustrating, i.e. I would often sit alone in the dark and cry because I didn’t know
where to turn to or who to talk to.
Initially absolutely no listening as far as patients when my son was the patient and I
was his mother there would be officials and the officials were talking down to me.
At Oxleas we have a number of training programmes to help staff to work with families and carers.
The main training programme is called family inclusive practice training, which is based
on a training course developed by Somerset NHS trust. It’s a two day, team based training
course, and which involves a carer talking about the caring experience which I think
is actually the most important part of the course.
You can’t have the correct amount of sleep because you are worrying about what the future
is going to be, and the problems of the day ahead. You then worry about the attitude of
the staff and doctor. It all just crowds in on you.
At some point I don’t know when, my relationship eroded, but I was coming back from the hospital
one day and I was seeing this pain in my head and then the next thing I know I am out in
front of a bus and thankfully I had my arm out stretched and the bus hit the arm and
knocked me back on to the foot path. The strain of seeing your wife, you know the person you
love, not being the person you love, it all takes a great strain.
A number of our carers have been involved with the training course that I mentioned,
the Family Inclusive Practice training course. We find it really valuable because we are
helping clinicians to understand the burden of caring and also their contribution in helping
the patient to recover. In fact a number of carers have said to me it is really good therapy
to talk to clinicians because it helps them to unburden their worries and also to have
someone to listen to them.
I recognise by not involving carers we are missing out a lot of information about the
person that may be unwell. Clinicians only see the patient when they are unwell, they
do not know what type of person they are when they are well so I really believe that we
should involve family and carers.
So it is interesting I think that the new generation of people coming up in the psychiatric
profession have got a different attitude to the carers and are listening and understand
the problems of being a carer.
In the last 18 months the staff from Oxleas have been the opposite of what they was before,
and things are so much better.
I notice that when I got to the GP surgery, and also to hospitals that there are lots
of leaflets about where to get help to give up smoking, to lose weight, or if you have
drink or drug problems, but there is nothing up there for carers and I think that this
is an important issue that carers need to have help and support as soon as they start
but they never know where to go and these things are not properly publicised or promoted
and I think every doctors surgery should have information about carers support groups on
their notice boards, and leaflets regularly available for those who need help.
At the trust we have a range of handbooks and leaflets for carers the main one is the
information handbook which tells carers about services within Oxleas trust and also local
services if they need help from carer centre or organisations such as Re-think and Mind.
At Oxleas we recognise it is quite difficult to engage with working carers so we have to
start a really exciting two year project to look into using technology to communicate
with carers and service users by using things like webcam, telephone and video conferences.
I believe we can engage carers by inviting them to meetings in acute ward or the community
mental health centre. We also hope to set up an online carers support group as well.
We do recognise the difficulties for working carers so in two of our acute wards we have
evening carers support groups.
I spoke to a number of staff who attended the family inclusive practice training course
and they all found it really useful especially listening to the carer talking about his experience
of caring. I think sometimes when you work with the patient you have no idea what happens
with the family when they leave the hospital, who takes care of them the type of things
that families have to do for the patient, things like cooking, shopping and even things
like banking. Really simple things like driving them around to friends, also just reminding
them to take medication. I think after listening to the carers experience I think staffs are
a lot more sympathetic and a lot more respect for the work cares do at home for the patient.