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