HEALTH: The last taboo - Chris Scott asks what comms strategies can remove the stigma of mental illness

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

seriously.



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

extra expenditure.



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

effective treatment.



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

paymaster's offerings.



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

treatment.



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

Italy.



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

products.



They have much broader issues to deal with and look after patients'

needs first.'



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

products.



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

individual products.'



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

about slowly.'



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 &

Spencer.



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

priorities.



'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

areas.



'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

programme.



'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

involved.



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

expert patient".



'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

computer screen.



'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

practice principles.



'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

executive.



'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

treatments.



'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

chemotherapy.



'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

illness.



'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

stigmatised.'



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