When pollsters Mori undertook a survey at the start of August on
behalf of the National Schizophrenia Fellowship, the results showed that
only 40 per cent of 16- to 25-year-olds surveyed were able to name
schizophrenia as a mental illness.
The research came shortly after the Government announced the creation of
a new body to improve standards in mental healthcare, the National
Institute for Mental Health in England (NIMHE), and the appointment of a
so-called mental health czar in professor Louis Appleby. It appears that
the Government, at least, is taking issues of mental health
Currently, it falls to the pharmaceutical companies and mental health
charities to raise awareness of mental health issues with the
Government, health authorities, and among the community and family
members. This frequently takes the form of attempting to persuade both
authorities and taxpayers that improvement in services is worth the
For drugs companies attempting such feats, PR campaigns and close links
with concerned charities are vital tools when attempting to secure
better treatment for sufferers. In some cases this extends to
campaigners lobbying health authorities and medics to prescribe better
but more expensive drugs, offering reduced side-effects and more
Although moves by the European Commission to loosen restrictions on
healthcare communications could increase patient awareness of certain
treatments, constraints remain in force for the mental health sector.
Thus PR campaigns focus on raising awareness of an ailment and the need
for new treatments for it, with passing mention given to the campaign
The principal current battleground in mental health is the availability
of 'atypical antipsychotics' (ATP) - a new form of treatment for
schizophrenia that does not result in severe side effects such as
restlessness, mental unease and serious and disfiguring movement
disorders. Twenty per cent of patients treated with older drugs
('typical antipsychotics') are intolerant of them because of the
side-effects. The newer drugs offer less severe side-effects and
therefore there is less chance of the patient discontinuing
Concern about the cost of the treatment is a prominent reason why
atypical drugs account for only 18 per cent of antipsychotic treatments
in the UK, compared with 65 per cent in America and 42 per cent in
Though the new drugs cost around £2,000 a year more per patient,
research by The Zito Trust indicates this would be recouped through
reduced incidences of relapse and hospitalisation.
The charities therefore feel there is much to be gained from advocating
the availability of these products, which drug companies are legally
restrained from actively promoting.
Charities such as Sane assist the major pharmaceuticals on research and
feedback projects. However, other organisations, including Mind Out for
Mental Health (MOMH), have no dealings with them. Campaign manager Amy
Meadows explains: 'Some organisations feel that they would be
compromising their position if they were seen to be in the pockets of
the drug companies.'
Meadows counters the view that charities more firmly rooted in the
community of mental health sufferers are better placed to provide
feedback: 'All major drug companies carry out their own tests, while
organisations can give feedback and lobby on certain drugs they feel are
dangerous and should be banned, or which are more beneficial.'
The role that pharmaceutical firms can play in the advocacy of their
wares is limited. Eli Lilly (which produces ATP Zyprexa) director of
corporate affairs Maxine Taylor describes the firm's strategy thus: 'We
try to make sure that the real benefits of the product are demonstrated
through value-of-life issues'.
In terms of communicating with mental health charities and the media,
she says it is important to ensure that stakeholders are aware of the
products coming through and the issues surrounding them. She rubbishes
suggestions that by working closely with charities drug companies are
able to employ surrogate lobbyists to hawk their products: 'No
self-respecting charity would ever blindly plug a drug company or its
They have much broader issues to deal with and look after patients'
The generalist approach to raising awareness of products is shared by
Novartis (which produces ATP Clozaril) director of communications Jo
Ashton: 'We talk about general issues but not specifically about our
We discuss treatments, but that is a small part of the agenda alongside
welfare, housing and benefits.' She again cites the example of ATP
treatments for schizophrenia, adding: 'We believe very strongly that
ATPs offer a better quality of life and, as such, we believe we have a
voice to communicate the benefits of the class of drugs rather than
The major pharmaceuticals also provide funding that enables charities to
continue their efforts to improve the acceptance of mental illness
sufferers in the community.
A recurring theme is how best to inform the public about mental
illnesses and dispel the myths that surround the maladies. Marjorie
Wallace, chief executive of mental health charity Sane, is a vocal
advocate of 'relentless and persistent public education' (see box).
Rather than engage in heavily pro-active marketing, Wallace believes
that greater awareness of the topic is best secured by other means: 'We
don't believe in huge anti-stigma campaigns. Change has to be brought
Wallace subscribes to the view that the public must not be sheltered
from unpalatable aspects of disorders, so a fuller picture of the
predicament of the afflicted can be given: 'You don't do that by
pretending that everyone with a mental illness is hunky dory and
enjoying a good life. You don't hide the violence and the worst aspects
of illnesses. You put it out there - warts and all. If you described
someone as having mild "flu" then it wouldn't help them if they had
cancer, and you wouldn't get the money for research into it.'
But MOMH's Meadows takes the opposite view, blaming the media for
placing too much emphasis on violence perpetrated by sufferers. 'Media
coverage is very stereotypical because they highlight violent crimes and
don't take a balanced approach,' she says. For example, she cites the
larger number of violent crimes committed by drunken young men - a much
larger section of society.
She points to the derogatory use of terms that patients can ascribe to
their own conditions as an example of the insensitivity that often
greets sufferers. Citing the example of a computer game advertised under
the slogan 'schizo', Meadows notes that it is a derivative of a label
given by medics, in much the same way that the use of the term 'spastic'
as an insult is now frowned upon.
When trying to improve public awareness, she admits that financial
constraints have a tendency to limit what can be undertaken: 'It's very
difficult and expensive to target people directly, so working in
partnership with existing groups is very important.' To this end, MOMH
works alongside the NUS, the Scout Association, and the Girl Guides, as
well as with high street names such as the Halifax and Marks &
By using such incessant and all-encompassing strategies, both charities
and drug companies are able to work their way around restrictions on
marketing products and press for better quality treatment. With the
Government seemingly taking the issues more seriously, their job may be
about to get easier.
LOUIS APPLEBY - NATIONAL INSTITUTE FOR MENTAL HEALTH
The National Institute was set up in June with two aims: to work on
research and development and improve clinical practice.
'With research and development we will look to co-ordinate national
research plans so that they tie in with clinical priorities. We want to
help create partnerships between leading establishments in the research
field and link them together in a large network so that their findings
are bigger and more influential,' says Professor Louis Appleby, National
Institute for Mental Health in England head.
'An important part of our work will be to look closely at how we can
spot good practice and promote it. We are creating a kind of network of
clinical development centres. It essentially already exists, but I don't
think a properly co-ordinated network is currently in place. At the
moment it doesn't necessarily follow national agendas and
'If we can spot good practice then we can reward those who have been
exhibiting it by giving them a stronger role in practice strategy.
Already NICE (the National Institute for Clinical Excellence) appraises
new treatments and issues guidelines. However, they don't necessarily
implement them in the field.
'Letting people know about better techniques and practices is one of the
most important things we will do. I think it is a problem in the NHS in
general as there are pockets of good practice and people solving
problems that are proving troublesome for others.
'We need to let people know where they can get information from. We're
just starting out but it's obvious that we can create a website with an
electronic catalogue of good practice that people can access, or they
can look for strategies adopted by those operating in similar social
'We also need to make sure that innovative practice is passed on when
not requested. When people start asking for help and advice then they're
already halfway to solving the problem. We need to be better at
disseminating information more widely. Local implementation teams will
be on the ground trying to put the reforms into practice.
'There's a major communications task to be done, which will be overseen
by the Government's Mental Health Taskforce (which Appleby chairs). I
wouldn't go as far as saying we will be setting up a comms team for the
National Institute - we're creating more of a service development
'At the moment, our communications strategy is to address the issue of
who the key audiences are, to look at service users and their families,
and to hear about work going on in the field that professionals will not
hear about until it is concluded, ensuring that advance notice of new
treatments and developments is available.
'We have yet to establish what our links with pharmaceutical companies
will be - the National Institute was set up without money from the drug
companies and is solely funded by the NHS. We will be talking to them to
see what contribution they can make in areas such as training.
'There are no preconceptions about where and when they might become
Obviously we would welcome their involvement but it must be done
delicately to protect us from allegations of undue influence from them.
That's unlikely to be a problem as the pharmaceutical companies have a
lot of experience in dealing tactfully with government bodies.
'What closer links with the companies will achieve is to tell us a lot
more about what is going on with their products and for us to help
direct their work towards particular targets and areas of concern.'
JEREMY TAYLOR - NOTTINGHAMSHIRE NHS TRUST
'Drug companies in the UK cannot do an awful lot of public promotion
because it is prohibited. However, there is an issue of information that
is available in America and patients can obtain over the worldwide web,'
says Jeremy Taylor, Nottinghamshire NHS Trust chief executive.
'We use a phrase in the health service to describe this group "the
'It's important that we develop ways of getting our staff to help
informed patients who come in with ailments such as schizophrenia.
'The staff have learned not to be thrown by expert patients who come in
and present information they have gained from other sources and think
they know what's wrong with them and how they want to be treated.
'Doctors have dispensed with over-the-desk paternalistic styles of
treatment. They sit side-by-side and discuss websites patients have
seen, letting them see the information that the doctor has on their
'I think the position now is that the more informed status of patients
has been matched by the increasing adeptness of healthcare professionals
to deal with them in a more open environment.
'When it comes to getting that information from pharmaceutical
companies, I'm not aware of any instances in which pharmaceuticals have
in any way behaved wrongly. The relationship between the firms and
health trusts is one that has to be based on mutual respect. We need to
be kept informed about advances and they need to see how successful
their products are proving.
'With increasing regulation and guidelines in place - particularly
through NICE - they have to demonstrate that they are adhering to best
'No doctor will ever take on a dodgy drug on the say so of a
pharmaceutical firm because there are people like myself who they have
to satisfy that they are behaving correctly.
'There is a strong case for investing in newer atypical antipsychotic
treatments but NHS commissioners want to be assured that they are
putting their money into the best treatments. I think the evidence
supports the belief that there are fewer side-effects and they generate
quicker discharge rates.
'One of the difficulties is that, because of the way the NHS is funded,
it isn't able to recycle the long-term benefits of spending in advance.
Change is coming, but it has not reached that stage just yet.'
MARJORIE WALLACE - SANE
'We always interact with drug companies as we receive thousands of
callers a week and it is important for them to be kept up to date. We
deal with a lot of people who are concerned about the side-effects of
their medication and who are desperate to make sure that they get the
newer atypical anti-psychotic drugs,' says Marjorie Wallace, Sane chief
'We have to make sure that better drugs are developed and made available
as lives are transformed by being on these rather than the older cheaper
'The drug companies need the information we get and the contact we have
with patients and carers. Who else is going to be interested but the
people who manufacture the drugs?
'We never promote one product or one company's drugs. We work with all
of the firms that operate in this sector. They have to get their message
across if they can persuade doctors to provide better medications. We
have been campaigning that the new drugs should be given as the
first-line treatment. The young in particular hate the first (old-style)
drug they receive so much and the side effects are so severe that they
are lost to the system and won't come back for more treatment.
'The choice exists but it should not be dictated by the £2,000-a-year difference in price. It's not asking the nation a great
deal when people are spending thousands of pounds on each batch of
'We can always give the drug companies information about which side
effects distress patients most. We recently held a survey with a major
drugs firm to establish what worried patients, revealing that
traditional symptoms such as shaking were not as much of a worry to
patients as weight gain and drowsiness.
'Fifteen years ago, when Sane was founded, we had to use false names and
photos of people in shadow, such was the stigma surrounding mental
'Now people can talk openly and appear on TV. There's more acceptance of
mental health issues, there's more public sympathy but it's still