Pushed to breaking point

The assisted suicide of Sarah Lawson brought the plight of
people caring for those with mental health problems sharply into
focus. The reality of looking after people with such severe
problems means they often live under unimaginable pressures with
very little support. Ruth Winchester reports.

When Sarah Lawson committed suicide in April last year, it was a
desperate act by a severely depressed young woman. The fact that
her father, James Lawson, assisted in her suicide by placing a bag
over her head as she lay dying from an overdose is shocking – even
appalling.

But few of the estimated 1.26 million people caring for a friend
or relative with some form of mental illness are going to be
appalled by the actions of this man – an exhausted, distraught and
desperate parent. Caring for someone in these circumstances can be
tough, unremitting and lonely. Every year, a few people are
inevitably pushed beyond their limit of endurance.

There are around a quarter of a million people in this country
with severe mental illness. Figures from the National Schizophrenia
Fellowship suggest that around half of them live with family or
friends. Even for those who live independently, families and
friends supply most of the support, both practical and emotional,
that they receive.¹

These carers not only have to cope with the normal stresses and
strains of family life, but also the demands of someone in mental
distress. They have to deal with the extremely challenging or
distressing behaviour inherent in illnesses like dementia,
schizophrenia, manic depression and eating disorders. They may have
to deal with people who are threatening, disruptive or
unpredictable, or who are harming themselves. And alongside these
practicalities, they have to handle their own feelings of grief,
loss, anger and frustration.

Without this army of carers the statutory agencies would not
cope, yet there has long been a complaint that carers are
undervalued and unsupported. The National Service Framework for
mental health suggests, for the first time, that carers should have
the right to an annual assessment of their caring, physical and
mental health needs, and a written care plan which is actually
implemented.

Between 1999 and 2002 an extra £140 million has also been
pledged for local authorities to help carers take a break from
their responsibilities. But, although the framework was officially
implemented last year, there is little evidence that hard-pressed
agencies are making much headway. When services are so patchy for
people with mental illnesses, it is hardly surprising that carers
are often still being left to get on with it.

Which is a shame, because carers have a lot to offer. They are
the people who, arguably, are best placed to raise the alarm when
someone is going downhill. And, in fact, they do, again and again.
But all too often no one listens. The complaint raised most often
by carers was that their calls for help are ignored or discounted
until, as one put it, “the crisis has become a disaster”. The
expertise of families is not used effectively.

Analysis by national mental health charity Sane suggests that,
of 36 recent inquiries into homicide by people with mental
illnesses, failure to consult or listen to someone’s primary carer
was a factor in 53 per cent.

Even when information from carers is used effectively, they
frequently do themselves a disservice by playing down the severity
of someone’s illness. Ailsa Martin is co-ordinator of the Princess
Royal Trust Sunderland Carers Centre, which runs a wide variety of
support groups and projects for carers. From her own experience she
says: “Carers do have a tendency to underplay the situation. When
people are ill they tend to strike out at their nearest and
dearest, so if professionals are seeing things pretty bad, what’s
happening at home is probably worse. I think it’s to do with
professional blindness – staff don’t have the time or the
imagination to think about what may be going on behind closed
doors. It takes a skilled professional to look beyond what’s
immediately obvious. And some staff seem to take it for granted
that carers will put up with a lot more stress and danger than
professional staff will.”

From a carer’s point of view, there are some glaringly obvious
problems with the mental health system which badly need addressing.
Carers say they find it particularly frustrating when appropriate,
effective services are available between 9am and 5pm, yet disappear
for days or even weeks on end over bank holidays, Christmas or New
Year. These are the times when carers are often having to cope with
extra demands, yet vital services – or even just a regular day care
slot – disappear into the ether.

While services can be slow on the uptake when a crisis is
looming, when they do mobilise the results can be uninspiring. Pat
Sheen looks after her son, Richard [not their real names], who is
27 and has bipolar disorder – or manic depression. She is positive
about his future, but adds: “Being a carer has been absolutely
dreadful. It’s desperately hard work, very stressful, very
isolated. It’s no good a CPN [community psychiatric nurse] limping
round to see you once a fortnight. You are on your own all the rest
of the time.”

Sheen has also been deeply unimpressed by the care offered to
her son during times of crisis. She says of the acute ward: “It’s a
lazy culture – staff just can’t be bothered. People are just left
to sit on the ward. There’s no intervention, no stimulation. They
just sit there, chain-smoking, all day. In the past he has been
physically sick, yet the sick was still there 24 hours later. There
were bloodstains on his sheets, but they weren’t changed until I
did it myself. Unfortunately he has attempted suicide, and we
pulled him back from the brink, but unless I’d actually been there
with him I don’t think he’d have made it.”

While many carers’ experiences of the mental health system have
been far from positive, there are some developments that may
improve their lot, and that of the people they cared for. The NSF
has given carers some much-needed statutory recognition and rights,
and at the same time the role of gatekeeper to mental health crisis
services seems to be moving increasingly toward assertive outreach
teams and community workers. These people are, in theory, able to
get to know individual patients well enough to recognise the signs
of impending crisis and they, unlike carers, are in a position to
act. Carers regard the development as extremely positive.

Margaret Edwards is head of strategy for Sane, which has been
arguing for a greater role for carers in decisions over the care
and treatment of people with mental health problems. She says:
“We’re calling for a balance of rights so that all parties involved
– obviously the person themselves, and their carers and the
professionals all get some input into decisions.

“Families and carers want to be part of the ring of confidence,
as far as possible – we want confidentiality to be applied
sensibly. They need information about what is happening to someone
– for instance we would like to see carers being told when someone
is discharged from hospital,” Edwards adds. “Amazingly it doesn’t
always happen – we know of cases where people haven’t been told for
days that their partner has been discharged. Carers should be
regarded as part of the support team.”

The National Schizophrenia Fellowship and the Department of
Health are launching their Commitment to Carers campaign on 11 June
to coincide with National Carers Week. More than half a million
leaflets will be landing in health, social services and voluntary
sector organisations during the week, telling carers about their
new rights to services, support and information. Unfortunately, for
the time being, these are services that carers may have to demand
rather than expect automatically.

¹ Mental Health Foundation, Is Anybody
There?, MHF, 2001

Sometimes I wish him dead

Shirley Swain is a carer for her son, Roy, who is 27. He has a
diagnosis of paranoid schizophrenia.

“He loves me to pieces. But then he thinks I’m involved in the
conspiracy when things are going wrong and he blames me. There are
times when things are good that I get back the lad I used to know.
I think I found it difficult to understand how someone you know
could threaten to kill you. You have to just get used to that.

“At first I thought it was just difficult behaviour, just an
adolescent growing up. He’s very bright, did very well at school.
It started when he was about 15. He ate a big lump of cannabis and
I’ve got a feeling that that was when it started – not caused it
exactly, but brought out what was going on. He ran away, and we
found him in strange places. He started to get aggressive, and
stopped going to school. I thought he was just being difficult and
eventually I more or less threw him out. He went to live with his
Dad.

“I had been going to social services about it, telling them
‘this is what’s happening’. They found a psychiatrist who said it
sounded quite serious. He had an assessment and they said he needed
sectioning, but his Dad refused. Then a few months later his Dad
asked for him to be sectioned.”

Roy has been in and out of hospital on a regular basis since
then. Shirley says: “There are periods when he’s just come out of
hospital, and he’s had a depo, when he’s almost back to normal. But
he doesn’t think he’s ill and he won’t take medication. And then
things start to get a bit hairy again. I’m very familiar with the
signs now. Sometimes when things go downhill I wish him dead. Roy
has been all-consuming. I’ve always felt ‘I don’t want this, I
don’t like this, take it away. I didn’t want to be a carer.”

Shirley’s relationship with the professionals caring for her son
is usually positive, but still fraught with problems. She argues,
like many other carers, that services pick up on an impending
crisis too late. But she also understands her son’s reluctance to
take medication which has unpleasant side effects. “In some ways,
when he’s going downhill, I think I’ll just let other people deal
with what needs to be done. Because if I’m involved he blames me
for the fact that all these things are happening, and I want to be
on Roy’s side – I want a relationship with my son. But on the other
hand I can see him going down that slippery slope, and part of me
thinks ‘I’m not going to let this happen’. There isn’t an easy
answer to it.”

Residential care was disastrous

Jenny Fisher, a qualified nurse, and her GP husband are both
retired. They have four children, including 41-year-old Simon, who
has had severe mental illness since his late teens. He now lives in
supported housing.

Simon’s illness came as a shock, Fisher says, and an extra
burden at a difficult time. “A lot of psychotic illnesses such as
schizophrenia are starting to happen in adolescence. It’s a time
when parents have a lot of other responsibilities – they’ve got
careers, elderly parents or relatives to think about, and other
children. You have to do a lot of adjusting and learning to
cope.

“In some ways I think we were better off because we worked
within the field – we knew where to shout for help and we were
better able to demand what we needed. And I think other
professionals thought we would be able to understand what was going
on. But I don’t think that actually prepared us in any way for what
was happening.

“Simon ended up in residential care. It was disastrous. Nobody
knew anything about rehabilitation of people with severe mental
illnesses, nothing about how to develop their confidence or help
them maintain their contacts with work, education, family life. All
of their responsibilities were taken away – they were completely
dependent. To have to leave someone in an acute hospital is a
really terrible thing. They are horrendous. People have to succumb,
they just have to accept such terribly low expectations. Simon said
to me once that he ‘had to make the most of the little
things’.”

Fisher, who is chairperson of the National Schizophrenia
Fellowship, says that she feels services are starting to adapt.
“Things are improving in patches. I welcome the introduction of the
new framework [NSF] because it’s really positive – more open and
accepting. We have been very involved in the new mental health act,
things like the right to decent care and treatment, and the ideas
about early intervention.” She says that there is too much reliance
on the diagnosis of mental illness. “We don’t need to decide
whether it’s manic depression or schizophrenia before we intervene.
We really need to treat people for their psychosis before they get
to crisis point.

“The NHS wouldn’t stand up if carers didn’t exist. Standard six
of the NSF says that carers must be supported. We really must make
sure this happens. A lot of carers get reactive depression, or they
have blood pressure problems. I think most carers are over the age
of 45 or 50. We have to make sure carers are able to look after
their own health – if only because it’s a very direct and positive
way of looking after the person with the mental illness.”