SECTION 3 CONSEQUENCES OF NOT GETTING INFORMATION
3.1 What were the consequences of not getting that information ( to the
carer)
There were 43 written comments.
Firstly, most expressed feelings of hopelessness, fear and frustration.
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feelings of despair, isolation leading to the temptation to throw my son out on his
ear. We soldiered on regardless of GP's lack of care for our family's welfare
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I felt bewildered, a bystander looking on
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a lot of unnecessary anxiety, being unable to get a true picture of the situation
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a great deal of confusion and anguish for 9 months
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horrendous suffering of my relative added to the pain I was enduring
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a lifetime of no reassurance. Afer 27 years of getting little information about my
husband, the nightmare continues with my son's illness
This lack of information made more than half of the respondents feel unable to
cope
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worrying because I didn't know how to help
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ignorance and inability to cope with the situation
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in great distress because of lack of advice on how to treat him at home, what kind of
behaviour to tolerate, which early warning signs to pass on
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leaves you feeling very confused as to how to address his illness
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we were put under even more stress by not knowing how to cope with the situation,
and this only caused more anger and alienation from professionals.
Family conflict was induced by ignorance of what was happening to the patient
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conflict in the family added to the distress of our sister's illness, an emotionally
upsetting time
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frustration at not getting help and understanding as our daughter's condition
worsened. Her bizarre behaviour made it increasingly difficult to cope and my husband
had to move out because of her rages and violence towards him
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led to fear, isolation, family tensions, no holidays, lack of interaction within the
family
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conflict in the family because of divergent views about coping skills, stress,
isolation.
Lack of information produced feelings of guilt in a few carers
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makes me feel very guilty. There is no diagnosis and it was once hinted that my
husband was trying to escape from me and a 'bad' marriage
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terribly upsetting. I felt guilty about my son's illness, very emotional and didn't
know how to react
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feelings of annoyance frustration, guilt. Initially we parents were being blamed for
misbehaviour which turned out to be schizophrenia.
These feelings can make carers want to give up. As one respondent wrote
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I couldn't take the hostility from the patient's paranoia or from the staff. I decided if
this was my life then "no thank you" and took to sleeping pills and a bottle of wine.
A small number of carers commented about their loss of confidence in
professionals' ability
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ever-increasing anxiety about the welfare of our son, lack of confidence in the
competence of those responsible for his care and anger arising from their arrogance
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sadness and distrust leaving me with the impression that there was little
communication between team members themselves and their patients
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suspicion of the validity of treatments
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don't know if he has an appointment to keep or activity to go to as staff don't know
till last minute. Found one activity to be a day spent in smoking room. I could do better
myself.