Suspicious minds

    The government has invested much time, money and energy
    reforming mental health services. But there is still a feeling
    among users and professionals that the reforms are to keep society
    safe and not to improve well-being for users, reports Mark
    Hunter.   

    Nobody could reasonably accuse this government of ignoring
    mental health. After decades of under-funding and low priority, the
    Labour election victory in 1997 thrust mental health services into
    the political spotlight.

    During the next four years, some 650 policy documents on mental
    health service delivery were published.

    In 1999, mental health was granted the first National Service
    Framework (NSF) and a year later the NHS Plan named mental health
    as one of the three areas of top priority. More than £300
    million has been ploughed into mental health services since 2001
    and hardly a month has gone by without another major initiative
    being announced.

    All of which, one would have thought, would have mental health
    professionals and service users rubbing their hands with glee. But
    while most would agree that health and social care for people with
    mental health problems has improved over the past few years,
    particularly in the area of acute mental illness, several major
    doubts remain.

    Staffing problems, geographically patchy services, poor treatment
    for ethnic minorities and an over-emphasis on acute illness are the
    chief criticisms. The near universal condemnation of the draft
    Mental Health Bill, published in June 2002, exposed a suspicion
    that the reform programme is more concerned with protecting the
    general public from the “dangerous” mentally ill than it is with
    improving the quality of service.

    Several recent reports suggest that the reform of mental health
    services has a long way to go before these suspicions will be
    allayed.

    A survey of mental health trusts carried out last year by the
    Commission for Health Improvement found that while most trusts were
    moving in the right direction, their ability to meet the NSF
    targets was being hampered by “serious capacity problems in
    management, staffing and infrastructure”. Services to ethnic
    minorities were poor and those service users who did not fall
    within the NSF’s remit were in danger of being overlooked, the
    report warned. It stated: “The focus on adult mental health
    services has been at the expense of, for example, services for
    older people and child and adolescent mental health
    services.”

    More recently, a report from mental health charity Rethink
    suggested that up to 50,000 people with mental health problems are
    being failed by the government’s reform programme because they are
    “too well” to qualify for support.

    Missing out
    Paul Corry, head of policy and campaigns at Rethink, says:”There is
    an emerging group of people who have missed out on the reforms.
    These are the people who have been in touch with mental health
    services for some time. They have come through their acute early
    crises and are now considered medically stable.”

    They may have problems getting their lives back on track or finding
    a job or a decent place to live and so tend to have a poor quality
    of life. “Often they are being cared for by their parents or older
    relatives, so there’s a knock-on effect in the worry and stress
    caused,” he adds.

    Corry is concerned that the investment being made to tackle acute
    mental illness is often directly at the expense of those with
    longer term and lower grade problems.

    He says that Rethink welcomes the government’s reform programme as
    far as it goes but believes it concentrates on young people who are
    suffering their first bout of mental illness and on people who are
    in crisis.

    “The new services being provided such as assertive outreach teams
    and crisis resolution teams are doing an excellent job but there is
    some evidence that other services such as day care centres are
    being closed in order to fund them.” Staff, he adds, are moving to
    the newer more exciting teams, leaving the older services with
    severe recruitment problems.

    More proposals
    The Department of Health denies that its reforms are excluding any
    particular group and points to the mental health and social
    exclusion project, due to report this month, which is specifically
    aimed at helping reintegrate people with mental health problems
    back into society. A DoH spokesperson says that the project will
    set out a range of recommended actions across government to help
    ensure that people with mental health problems are not isolated
    from services and employment.

    This, the DoH says, is in addition to the £300 million extra
    investment that has been put into mental health since 2001, and
    “sustained baseline funding helping to improve access to effective
    treatment and care, reduce unfair variation, raise standards, and
    provide quicker and more convenient services for everyone with
    mental health problems”.

    For those on the front line, however, talk of extra funding means
    little when faced with longstanding debts, serious staff shortages
    and rising prescription bills.

    In a survey carried out last year by the Sainsbury Centre for
    Mental Health, more than half of the local implementation teams,
    which co-ordinate improvements to local mental health services,
    said financial pressures were delaying progress towards meeting key
    NHS Plan targets.

    Many mental health trusts complained that primary care trusts were
    diverting much-needed extra money to other services. Social
    services, meanwhile, were under such pressure to tackle other
    issues that mental health budgets frequently lost out on
    funding.

    The Sainsbury Centre’s report also questioned whether mental health
    was receiving quite as much of the funding as the government has
    suggested. Its figures showed that English mental health services
    received growth money of 1.6 per cent in 2003, compared to 5 per
    cent for the NHS as a whole.

    Jeopardise reform
    And this funding gap could jeopardise the whole of the government’s
    mental health reform programme.

    “From our experience, most of what’s happening in mental health
    services is really positive because it’s about improving services,
    particularly community services, early intervention and, most
    importantly, keeping people out of hospital,” says Angela Greatley,
    acting chief executive of the Sainsbury Centre.

    Reforms are being implemented without the necessary increase in
    resources and staffing, she says. “So what is happening is that the
    new services are being set up at the expense of existing services.
    The new teams are poaching staff from the old teams and that leaves
    a big hole.”

    Mental health has now had four years in the spotlight, sitting
    alongside heart disease and cancer as a top three priority for the
    government. But with the new Mental Health Bill still on ice, and
    the reform programme stuttering in the face of staffing shortages
    and rising costs, it may be some time before it manages to shake
    off its entrenched reputation as a Cinderella service. 

    Key government mental health initiatives

    • October 1999 National Service Framework for Mental Health.
    • November 1999 Richardson Report and green paper on reforming
      the Mental Health Act 1983.
    • July 2000 NHS Plan.
    • March 2001 National Mental Health Information Strategy
      launched.
    • March 2001 National Service Framework for Older People
      published, which includes targets for mental health.
    • April 2002 New Deal for Disabled People extended
      nationally.
    • June 2002 Draft Mental Health Bill published.
    • June 2002 Launch of National Institute for Mental Health in
      England.
    • March 2003 Social Exclusion Unit project on reintegrating
      people with mental health problems back into society launched.
    • June 2004 Social Exclusion Unit report due to be
      published.


    A week in the life of Michael Elvin, a mental health service
    user

    Monday
    Start the week by attending the day centre. The long weekend is
    over. When I arrive I’m greeted by a member of staff who tells me
    I’m looking good and that I am a nice boy. Today I’m a “good” user.
    My activities include web site design on a computer, supervised by
    my key worker who has a qualification in health and safety. The
    service users hold their regular meeting in the afternoon and the
    manager is present. He says that I can do the minutes. When I query
    this, he replies saying that I’m being empowered and it is good for
    me. In general, I value the human interactions that remove me from
    the isolation of my bedsit. A cup of tea and a chat with other
    service users lifts me out of melancholy.

    Tuesday
    Another day at the day centre. I like to contribute but I find it
    strange when social care workers keep saying “did you do that
    yourself?” The comment usually follows work I have done on the
    computer or a letter I have written to a local newspaper. But the
    way to get treated well is to play the game and allow them their
    delusions rather than attempt to challenge them. Today another user
    is told to take down his poster from inside a garden shed where he
    works. The poster displays a picture of a bulldog, above which are
    the words “piss off”. Apparently his sense of humour offends a
    member of staff. The day becomes exciting because we are told there
    is to be yet another trip to a shopping mall in the minibus. You
    get to like concrete eventually. When we arrive, some of us go to a
    pub for a meal.

    Wednesday
    I spend most of the day safely contained in my small bedsit, apart
    from attending a monthly appointment with my community psychiatric
    nurse. We discuss my care plan and the activities at the day
    centre. I make sure that I reciprocate her smile, otherwise it will
    be recorded that something is wrong with me. I know how to get the
    eye contact and body position right as well. Go to the chippy and
    buy pie and chips. I find doing my own cooking difficult and tend
    to burn a lot of food. Medication is my lifeline but it slows my
    speech and sometimes it is difficult to respond to others. When I’m
    alone I experience a lot of tiredness, but very little sleep. I do
    some meditation and listen to poetry readings. Today William Blake
    is my favourite. And I never miss an episode of The Archers.

    Thursday
    In the morning I attend a tri-monthly visit to an NHS psychiatrist.
    Sometimes the regularity of the meetings is increased to one every
    two weeks, depending on my moods. After the usual 10 minutes I
    leave and go on to arrive late at the day centre. I feel down.
    Today’s visit also coincides with a six-monthly review meeting with
    my keyworker who writes my care plan. He likes to tell me the
    activities that I should be doing and if I agree with him then it’s
    deemed that I’m improving. He always says he wants to do one-to-one
    with me and records it in my care plan. At the next review I intend
    to ask him exactly what one-to-one is. When I get home I feel
    exhausted. But I am the chair of a public patient forum for a
    mental health trust and I need to complete some paperwork on my
    home computer. And there are messages on my answer phone, which
    require immediate replies.

    Friday
    An independent complaints investigator visits me. I’ve complained
    about the lack of consultation on changes at the day centre, but
    keep getting told that it is only my opinion. The staff are allowed
    to give their views but other service users are considered too
    vulnerable to become involved. Whenever we suggest things there are
    always excuses. Usually there are “health and safety
    considerations” or “a duty to care”. Nothing seems to change much,
    and I decide to listen to a John Lennon CD. Another long weekend
    advances towards me.

    Stifling stigma

    A new draft bill will help people with mental health problems by
    bringing them further within the remit of discrimination law,
    writes Rowena Daw from Mind.

    The Disability Discri-mination Act 1995 is not a law that people
    with mental health problems have seen as an ally when they face
    discrimination. Perhaps they do not consider themselves as disabled
    or may be they do not wish to reveal their diagnosis. Perhaps the
    experience of stigma is so pervasive that they find it hard to
    believe that the law could reduce it. A recent report by the Legal
    Services Commission found that people with mental health
    discrimination cases were least likely to believe that the law
    could help them.

    Potentially, the DDA is very powerful. Its coverage is broad and
    its definitions of discrimination helpful. A person who is sacked
    when they take sick leave because of depression or a student who
    needs extra time to complete a university course after a nervous
    breakdown might successfully claim protection under it.

    Discrimination bill
    Improvements are on the way too. From October 2004, professional
    bodies could be guilty of discrimination if they refuse to register
    a qualified person who wants to practise because they suffered from
    a mental illness in the past. And if the draft Disability
    Discrimination Bill amending the DDA is passed, someone thrown off
    a bus because of their “strange” behaviour, or a person who has
    their application to become an adoptive parent automatically
    rejected on the grounds of a mental health problem, might also have
    a viable case.

    Although the number of people with mental health problems who
    pursue discrimination cases is increasing, few succeed. So why do
    they fail?

    Shortcomings in the law are sometimes to blame or the medical
    evidence may be inadequate. Sometimes claimants withdraw because
    the process is too stressful. And time limits for lodging
    applications are also very tight – an individual has just three
    months in employment cases. There is no legal aid available for
    employment tribunals so claimants often do not have any legal
    representation. They can become easy prey for lawyers in court. The
    cost of expert witnesses can also deter people.

    Daunting process
    Tribunal members often seem to believe that an employee has been
    malingering, although why a person would willingly take powerful
    drugs with horrible side effects, or how a doctor could be so
    easily hoodwinked into prescribing them, is anyone’s guess.
    Overall, the whole process can be pretty daunting for a person who
    is unwell. Yet despite all this, some cases do succeed and the
    level of understanding of mental health issues in the workplace and
    in tribunals is starting to improve.

    When the draft bill to amend the DDA went before a parliamentary
    scrutiny committee last month, Mind pointed out that the actual
    definition of disability in the DDA was in itself discriminatory.
    This is because it describes disability as a physical or mental
    impairment that has a substantial long-term (ie 12 months) adverse
    effect on normal day-to-day activities. Such a definition of
    disability has complications for people with mental health
    problems.

    First, people with a mental illness have an extra legal hurdle
    compared to other disabled people because they have to prove that
    their illness is “clinically well recognised”, presumably so that
    they couldn’t make one up.

    Second, the requirement to prove that an impairment adversely
    affects normal day-to-day activities can be difficult for service
    users to satisfy. The activities listed are mostly physical, with
    the only one relevant to mental illness being the “ability to
    concentrate”. Some mental illnesses such as depression affect a
    person’s ability to communicate with others or to care for
    themselves. And eating disorders and schizophrenia may affect an
    individual’s perception of reality.

    Third, depression, which is the most common source of
    discrimination, lasts on average six months and so fails to meet
    the 12 month requirement.

    Thankfully, the parliamentary scrutiny committee agreed with Mind
    and has recommended changes to the law. Hopefully, these problems
    will be remedied by the time the draft bill appears in parliament.
    Certainly in other respects there is much to welcome in it. 

    Rowena Daw is head of policy development at
    Mind.

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