Family fears

Community Care’s Changing Minds campaign has highlighted the lack
of services for children and young people experiencing mental
distress. And while the shortage of appropriate care can be a
disaster for the young person, it often puts their families under
unbearable strain.

James Howarth’s 17-year-old daughter Anna developed psychotic
symptoms after her stepmother died at Christmas. “They had been
very close. They used to sit round the table and talk like
sisters,” he explains. “Anna felt guilty that she hadn’t always
been at home or helped enough around the house. There was nothing
you could do to convince her that she wasn’t selfish.” Over the
following weeks Anna began drinking alcohol and smoking cannabis to
block out her distress.

Anna’s mental state worsened and she started hearing voices.
Howarth went with her to the local GPs’ surgery, but they did not
take her symptoms seriously. “I told them she believed the TV was
telling her to kill herself. They didn’t really understand at all.
They said she was depressed. One doctor did spend a long time
talking to Anna. She said ‘you have to be the woman of the house
now and help your dad out’. It just made her feel even more
guilty.” After several consultations, the GP reluctantly agreed to
refer Anna to an adolescent mental health unit and she was given an
appointment in three months’ time.

Anna’s mental condition deteriorated to the point where she was
running round the house at night banging on doors and windows and
cackling dementedly. “She was obsessed with stealing the car and
flying to America. I was taking a lot of time off work because it
wasn’t safe to leave her alone.”

In desperation, Howarth telephoned the nearest adult psychiatric
ward. “I left a message on the consultant’s voicemail and just
listed her symptoms. He called me back straight away and said it
sounded like serious psychosis. He gave her an appointment within
three days and put her on anti-psychotic medication. It stabilised
her and made things a bit more bearable.”

Although relieved that at last someone was taking Anna’s condition
seriously, Howarth was less than impressed by the efficiency of the
psychiatrists. “She saw different doctors on each appointment and
they each asked the same questions and made handwritten notes. They
were very quick to draw the conclusion that it was a drug-induced
psychosis.”

After being treated by the adult department for a month, Anna’s
appointment with the adolescent mental health unit eventually came
up. She was admitted immediately as a voluntary in-patient.

“The adolescent psychiatrist really talked to her. She said Anna
should have been referred immediately as a priority case. They
can’t say for sure what’s wrong with her. It could be drugs, it
could be her emotional state, it could be lots of things.”

Since her admission to the adolescent unit, Anna has made good
progress and is now at home two or three days a week and beginning
to attend college again. For Howarth, it is difficult not to be
bitter about the inaction of the GPs. “If she could have been
referred as a priority case we could all have been spared three
months of grief,” he says.

Even when GPs do refer families to specialist services, the
response is not always helpful. Elizabeth Webster, the mother of
James, a 22-year-old diagnosed as suffering from schizophrenia, had
numerous consultations with professionals throughout her son’s
childhood.

“James would get into a rage and run round the house wrecking
things. Once, when he was about 13, he didn’t like the way I was
making gravy and started throwing flower pots through the window.
If we had friends round he would just grab anything and smash it on
the floor.

“He was given so many different diagnoses. None got anywhere near
the root of the problem. Once, they said they would take him in for
observation but that never happened. There was never enough time
for us to give a full picture of what was going on. Psychiatrists
seem to think that seeing a family for half an hour every two
months and making notes is going to help.

“The only person in eight years who recognised the seriousness of
the problem was a policeman who came to the house one night when
James was smashing things up. He asked whether we had thought of
having him sectioned. No one else ever said anything about mental
illness.”

With hindsight, Webster identifies much of James’ behaviour as
pre-psychotic. His disturbed sleep pattern for example – he used to
be up all night playing loud music, trying to drown out voices in
his head.

Full-blown psychosis developed at the age of 17, after the family
moved home in an attempt to ease James’s fears that he was being
followed around the village. He was taken away in handcuffs in the
middle of the night.

The impact on the family was severe. “You blame yourself and search
for reasons. We fell into the trap of blaming each other. We got
over that but lots of families don’t and break up.”

Webster fears her younger son Peter has been permanently affected
by the anxiety in the house. “Children either become very anxious
and over-involved like Peter, or they go the other way and distance
themselves from the family. It is very hard when you are always
tired and when you are almost totally preoccupied by the other
son.”

Because environmental factors have a role in the onset of
schizophrenia, Webster believes an early diagnosis might have saved
him from becoming so ill. “If it had crossed anybody’s mind that it
could be an organic illness, we should have been told. If we had
known that was a possibility, there are a lot of things we would
have done differently to avoid stress, like not moving house or
changing schools.”

James is now on clozapine, one of the most highly rated of the new
atypical anti-psychotic drugs. “With my son, it’s like an electric
switch. He goes to college, does voluntary work and lives in a
flat. He’s entirely rational and beginning to get some insight into
the fact that he has an illness,” says Webster.

“It all hinges on getting a psychiatrist who will work in
partnership with the family. The psychiatrist he has now regards us
as expert witnesses. But there aren’t many who can work like that.
Everyone else thought that they knew best and wouldn’t listen to
us. People assumed we were putting too much pressure on him, but we
weren’t at all. People make all kinds of incorrect assumptions,”
she says.

Peter Wilson, director of Young Minds, believes support for parents
of children with mental health problems is vital. “If a child is
psychotic the impact is going to be very serious. But there is a
whole range of problems that can impact enormously on the family.
Parents tend to be overwhelmed and feel it’s their fault in some
way.”

In line with the experiences of many families, Wilson believes many
GPs downplay parents’ concerns about their children’s mental
health. “There’s a tendency to under-diagnose and say the parents
are worrying too much. At one level GPs don’t want to know. They
only have five or 10 minutes. If they do look at the problem, an
enormous amount of help and support is needed and there’s the
question of who to refer the family to. There just aren’t enough
services.”

But he adds: “Parents can make all the difference depending on how
they react to the child. If the child is anorexic or a violent
delinquent you’re going to get absolutely furious sometimes. If you
actually hit the child or throw them out of the house it all starts
to spiral. If parents are given the opportunity to share feelings,
and talk to someone with experience it helps get things into
perspective.”

Young Minds operates a parents’ helpline providing information
about local services and a call-back service. Wilson says: “We can
only offer a one-off consultation with a mental health professional
but it is an enormously important service. An hour on the phone can
help people deal with what’s going on.” The helpline is running
below capacity because its six-year lottery grant has come to an
end.

Young Minds parents’ helpline is 0800 0182138. All service users’
names in this article have been changed.