The best of a bad situation

    CASENOTES – The names of the service user and his family
    have been changed.

    PRACTITIONERS: Brian Marshall, practice team
    leader, and Linda Oliphant, community nurse.

    FIELD: Learning difficulties. LOCATION:
    Glasgow.

    CLIENT: Stuart Gemmill, 41, is the oldest of
    four siblings and has profound learning difficulties and cerebral
    palsy. He is a wheelchair user and has no verbal language but does
    make sounds that the family can interpret. He also has very complex
    epilepsy.

    CASE HISTORY: Stuart’s father died last year
    and his mother, Fiona, who has a history of alcohol abuse, is in
    poor health following a stroke and a lower leg amputation. Stuart
    normally lives with his brother, Michael, who is his main carer,
    but who had been hospitalised following a collapse believed to be
    related to alcoholism, so Stuart was staying at his mother’s house.
    Because of the family situation, Stuart’s sister Mary and her
    husband, Roy, moved in, primarily to care for Fiona. Stuart’s
    nephew, Martin, (whose own father also died last year) has also
    moved in and he took on the role of Stuart’s main carer. Martin is
    13 years old.

    DILEMMA: Stuart should be cared for by his
    family, but the family is struggling to care for itself and has
    proved resistant to accepting external support.

    RISK FACTOR: Alcohol and possibly drug abuse
    has taken its toll on the family’s health and ability to care for
    Stuart, whose main carer has become his 13 year-old-nephew.

    OUTCOME: Stuart remains with his family along
    with extra support services but with daily monitoring.

    When making decisions, social workers and community nurses can’t
    simply stick to facts. There will always be a great deal of
    non-factual information about which they will have to make certain
    judgements. But using their professional judgement does not mean
    “being judgmental” – that is, having an excessively critical point
    of view. It’s an important distinction.

    Indeed, being “non-judgemental” is a core social work value. In
    part it means accepting a person’s circumstances, background,
    abilities or lifestyle choices on their own merits. For example,
    parents who use drugs do not automatically make bad parents.

    Social workers and community nurses need to step outside of
    presenting circumstances and understand that, while a certain
    situation might not be to their personal taste, it’s what somebody
    knows and feels comfortable with; provided, of course, that
    vulnerable people are protected.

    Such values and skills were tested with the complicated family
    situation that surrounded Stuart Gemmill, 41, who with profound
    learning difficulties and cerebral palsy is dependent on support
    for most aspects of daily living. He uses a wheelchair, has complex
    epilepsy and is doubly incontinent.

    Stuart is normally cared for by his brother, Michael, but
    because Michael had been hospitalised, Stuart moved back in with
    his mother, Fiona. She, too, was in poor health, so Stuart’s care
    fell upon his 13-year-old nephew Martin, who also lived in the
    house. Martin did not attend school and brought in money by
    delivering pizzas at night.

    “The family situation was, and is, fairly chaotic and they have
    been very reluctant to accept support in the past,” says community
    learning difficulties nurse, Linda Oliphant. “Naturally, we had
    concerns for Stuart,” adds practice team leader, Brian Marshall.
    “His care was being provided by his young nephew because the adult
    family members were dominated by alcohol abuse.”

    A major concern was the extent, if at all, that Stuart’s
    epilepsy was being managed. “We knew from the past that his seizure
    activity was frequent but had no way of monitoring that. We were
    also worried about his medication not being taken – his brother had
    told us once that he found that giving Stuart a shot of whisky did
    the job,” says Marshall.

    At this point partnership working with the family and other
    agencies came into play. “Importantly, we got agreement from Fiona
    for an assessment of Stuart’s and the family’s needs. Despite her
    past reluctance to engage with services, she recognised the need,”
    says Oliphant. “The main problem has been ensuring Stuart has his
    medication at home. But we set up a day service placement and staff
    ensure he gets this now.”

    Marshall and Oliphant also worked with colleagues from children
    and families (not least because of Martin’s role as a young carer)
    and with a service provider, Mainstay, who, says Marshall, were
    “top notch” at supporting Fiona, Stuart and Martin.

    Even so Marshall admits: “We haven’t done enough to help Martin.
    The day care going in benefits him because that allows the 13 year
    old to become a 13 year old again. Where we haven’t been successful
    is with getting him back to school – because to some extent he is
    using his caring role to get out of school.

    “But that said, he’s the key to family stability – he’s holding
    it all together. But his own development in his own right as a
    child is being diminished because he’s caring for someone with a
    learning difficulty. We have a young carers’ agency but he’s not
    interested in that: he doesn’t see himself as a young carer – he’s
    just living somewhere and doing what he does; he’s helping out,
    it’s nothing special,” he says.

    Despite everything Stuart seems happy. “He has no verbal
    language but we don’t feel there is a problem with his mood. He
    appears content. If he’s unhappy or upset he will make his feeling
    known by crying or shouting,” says Oliphant.

    Marshall is equally confident about Stuart: “We might not like
    it, but he’s really happy and it is the life he knows. Our
    challenge is about how we can effect change in this family. For
    example, some of the physical environment is not good enough. We
    have the provider working alongside the family trying to improve
    the fabric of the house because as they are not a statutory
    organisation the family don’t see them as a threat,” he says.

    The situation continues to be monitored daily. “It’s not a
    hundred per cent safe – it never is and never can be,” says
    Marshall. 

    Arguments for risk

    • Despite Stuart’s vulnerability and lack of verbal communication
      it’s clear that he wants to be at home with his family as he has
      been for more than 40 years. While the family might not always do
      things in Stuart’s best interests, there is willingness and a
      desire to have him with them.
    • Keeping Stuart with his family is also a value recognised by
      the workers despite the concerns. Says Marshall: “We couldn’t make
      that household totally safe because there are risks everywhere. But
      it’s about minimising and managing those risks through a risk
      assessment. We always to try and maintain people in an environment
      that they wanted to be maintained in; and if that’s possible then
      let’s do it as safely as we can.”
    • Stuart’s medication is now carefully managed since he began
      attending a day service.
    • Additional support services have been provided which not only
      give the family respite but also act as a daily monitoring
      tool.

    Arguments against risk

    • Alcohol abuse appears central to this family. With the
      hospitalisation of Stuart’s main carer (his brother Michael) and
      his mother’s own ill health – both being alcohol-related – it
      appears clear that the family cannot be expected or trusted to care
      adequately. Slipping Stuart a nip of whisky in place of his
      epilepsy medication seems potentially dangerous. It is alcohol and
      not care that drives this family. The risks appear too high.
    • Stuart has lived all his life with his family but the
      experience of being cared for by his 13- year-old nephew is
      unprecedented. The expectations of such a young person are surely
      too high given Stuart’s physical and intellectual needs.
    • While having daily monitoring, Marshall is aware of the
      possible consequences: “There may come a day in this case when we
      hold our hands up and say that the risk is unacceptable, we can’t
      live with the situation as it is, and we need to find alternative
      accommodation.”

    Independent Comment

    I marvel at the risks that Oliphant and Marshall are taking:
    vulnerable person, cerebral palsy, epilepsy, incontinence, alcohol,
    drugs, deaths of significant people, and a young person with huge
    caring responsibilities.

    A situation like this would have most of us thinking that
    floristry would be a preferable career option, writes Kathryn
    Stone.

    I admire their pragmatic approach to events and the way they
    dealt with sorting the practicalities out. The honesty is also very
    refreshing: “not 100 per cent safe” and “there may come a day when
    we hold our hands up and say the risk is unacceptable”. Further,
    the recognition that things aren’t as they should be for Martin is
    commendable.

    It is clear that for now at least Stuart is being supported
    where he wants to be and with those he wants to be with – or is he?
    I wonder what attempts have actually been made to find out from
    Stuart himself what he really wants. He is able to let it be known
    if he is unhappy, but I’m not sure we can say that he is happy on
    the grounds that he isn’t saying he’s unhappy. Have other options
    been presented to him about where he lives and the different sorts
    of support he can get? It seems that things are happening around
    and to Stuart and not with him.

    There’s a lot happening at all sorts of levels in this family.
    Unless the underlying things are dealt with effectively, any
    resolution will only ever be short-term. This does not detract from
    accepting that Marshall, Oliphant and their colleagues are doing an
    extremely demanding job in very difficult circumstances.

    Kathryn Stone is director of Voice UK, a national
    learning difficulties charity.

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