Secret service

It’s always difficult to balance the service user’s right to
privacy and an agency’s right to access confidential information to
do its job.Ruth Winchester asks if recent legislation has tipped
the scales too far against the client.

If you discovered you had HIV, who would you want to know? Your
partner? Your GP? Your neighbours and colleagues? Your employer?
Your local estate agent?

Most people would draw a firm line just below their GP. But how
would you feel if a whole range of confidential information could
be shared widely without your knowledge, and explicitly against
your wishes?

For anyone who feels a little uncomfortable with this idea,
prepare yourself for a shock: it has already happened. The Health
and Social Care Act 2001 makes provision for the information held
by GPs to be accessed by the secretary of state for health, and by
any organisation he or she sees fit.¹

These could include local authorities, health trusts, the
police, and even private companies. Worse, rather than making only
general, non-specific information available, the new act means
these organisations will be able to identify you – your name, your
age and where you live.

For once, it is not the fault of GPs. Even if a patient has
expressly forbidden them from divulging information, a GP’s refusal
to pass on patients’ medical records carries a hefty fine or a
prison sentence -and they would have to be very principled to take
that sort of stand on your behalf.

But while this new development is likely to upset anyone who
uses a GP, for people with mental health problems it represents yet
another erosion of their fragile privacy. The right to privacy is
enshrined in Article 8 of the Human Rights Act 1998, but as anyone
who has experienced a mental health problem will know, it is an
extremely difficult one to defend.²

People with mental illnesses are unique among health service
users in having to accept that private information about them is
going to be shared, often without their permission and sometimes in
direct contravention of their wishes. This information is shared
because it is, arguably, in their best interests, or in the
interests of the public. But where should the boundaries lie? Whose
interests should confidentiality serve, and should the absolute
right to privacy always be balanced against the rights and
interests of other individuals?

Confidentiality within mental health is a thorny issue, and
covers a lot of ground. It relates to the information given to
carers, to landlords, to other public services, to the general
public, and to employers. It covers the information that people
choose to divulge about themselves, and how that information is
interpreted, used and stored. Perhaps one of the most obvious areas
of contention is about professionals sharing information about
people at risk. Successive inquiries into suicides and homicides by
people with mental illnesses have highlighted incidents where
information should have been shared, and was not.³

For instance, hostel staff fail to tell social workers that
someone has been talking about suicidal feelings, or that magazines
with circled adverts for weapons have been found in their room.

These inquiries always have the benefit of hindsight, but the
reality is that making decisions about what information to pass on
and what to keep confidential is extremely difficult. Psychiatric
patients have a right to expect that what they tell people in
confidence should stay that way -Êand indeed, the suspicion
that their confidences may be passed on may stop people from
talking about their feelings at all.

But they also need to know where the boundaries of that
confidentiality lie -Êthat there will be cases where
information will be passed on against their wishes or without their
knowledge. Despite the fact that thousands of people working in
mental health have to make these difficult judgements every day,
there is very little official government guidance about when to
speak up.

This could be remedied by the promised new mental health
legislation. Reforming the Mental Health Act, Section II,
chapter 5 promises “a new statutory duty covering the disclosure of
information about patients suffering from mental disorder between
health and social services agencies and other agencies (for example
housing and criminal justice agencies) where it can be
justified.”⁴

This comes with the important caveat that the information will
be kept confidential by the receiving agencies “except in those
limited and specified circumstances where release is justified”.
What this will mean in practice is open to
interpretation.⁵

Paul Jewitt is an approved social worker on an assertive
outreach team in Bedfordshire -work in which expertise with
confidentiality is essential. He says that although ASWs have
extensive training in issues of confidentiality during their mental
health courses, the area is a potential minefield.

“Basically, we share information as it appertains to risk,” he
says. “Different agencies have different rules in relation to
confidentiality, but we meet in a closed forum and we have to say
we will all respect each others’ rules. It is important because
Section 115 of the Crime and Disorder Act 1998 states that
professionals who do not share information appertaining to risk
will be liable -Êyou are, as a practitioner,
responsible.⁶

“You have to be professional about it. We usually ask for our
client’s permission before disclosing information, and quite often
they agree, or we try to persuade the client to give the
information themselves. But it happens often that agencies don’t
bother to consult with the client -and then they are surprised when
the person is not happy about it.”

From the other side of the coin, some agencies argue that they
often don’t get enough information from mental health services.
While housing associations running specialist supported housing
schemes generally have close relationships with mental health
services, those running general-needs housing stock often complain
that the information they get from social services and specialist
mental health services is sketchy, inadequate or downright
misleading. They argue that they need to know if someone has
support needs in order to ensure that they are met, and that their
tenancy is appropriate. Referring agencies, for their part, suggest
that some landlords are more likely simply to use this sort of
information to screen out tenants with mental health problems
before the real situation has ever been explored.

A different view comes from people who care for friends and
relatives with mental illnesses. Evidence from mental health
charity Sane’s helpline suggests that far too many carers feel
“outside the loop” when it comes to information, with many arguing
that misplaced notions of confidentiality put their loved ones at
unnecessary risk.

Classic examples include cases where parents were not informed
of a grown-up child’s diagnosis, prognosis and the potential side
effects of their treatment, but were expected to continue to look
after their son or daughter at home. Marjorie Wallace, Sane’s chief
executive, says: “We absolutely support and uphold people’s right
to privacy, and we don’t want a Big Brother situation where
everyone reports on everyone else. But we are conscious of the
consequences of overplaying the confidentiality issue. I think
often it is presumed that people don’t want information about them
used, when they have not actually been consulted about it. It’s
vital that carers are given sufficient information. If I had cancer
the last thing I would want is for people to know, for instance,
but if it were a question of life or death I would want them to
know. People must be inside the circle.”

Service users, for their part, have to make their own difficult
decisions. Professionals suggest that difficulties with
confidentiality can sometimes be overcome by explaining who needs
the information, and why, and then encouraging the client to make a
decision about how to do it.

But service users themselves may not always be in a position to
make decisions about their situation. Peter Beresford, professor of
social policy at Brunel University, and a long-term user of mental
health services, highlights instances where he was involved in a
training video, and a research project, while on a ward. While he
agreed to be involved at the time, he questions whether people in
those circumstances are always going to be in a position to give
“informed consent”.

These decisions are also particularly difficult when you are
potentially entering into a legal contract with someone -for
instance buying insurance or a house, trying to foster children, or
signing a contract of employment. The Disability Rights Commission
has set up a new mental health advisory group, which met for the
first time recently and is understood to be looking at a number of
cases where mental health information may have been used to
discriminate against someone.

According to Liz Sayce, director of communications at the
Commission: “It’s a tremendous dilemma. What do people put if they
are asked on an application form whether they’ve ever had a mental
illness? On the one hand, if they inform the employer they know
they are possibly going to be discriminated against, on the other,
they are entering into a contract with someone and there is a duty
to be honest.

“Our argument is that those questions shouldn’t be on an
application form -they should be on a separate equal opportunities
monitoring form. Employers do need some information, for instance
to enable them to make reasonable adjustments for someone, but we
would only want them to have information relevant to the job.”

Ultimately, the threat to individuals’ privacy seems unlikely to
go away. A move towards electronic medical records will make
serious lapses of confidentiality little more than a mouse-click
away, and the Freedom of Information Act 2000 is also likely to
have some bearing on the records held by public authorities. But
the present situation seems to be that practitioners are having to
take difficult decisions day in, day out. Within this framework,
no-one is really protected.⁷

¹ Department of Health, Health and Social
Care Act 2001, DoH, 2001

² Home Office, Article 8, Right to respect
for private and family life, Human Rights Act 1998, The
Stationery Office 2000

³ For a list of inquiries and findings since
1985, see www.davesheppard.co.uk/inqs.htm

⁴ Reforming the Mental Health Act,
Part II, Chapter 5.

www.official-documents.co.uk/document/cm50/5016-ii/5016ii01.htm

⁵ Home Office, Crime and Disorder Act
1998, The Stationery Office 2000

⁶ Home Office, Freedom of Information Act
2000, The Stationery Office 2001