Interpreting behaviour

Our
multi-disciplinary panel discusses a woman with learning difficulties who is
antagonising the staff and users of a day center practice panel Bath and North
East Somerset learning difficulties team.

Case study

The names of all
service users mentioned in this article have been changed.

Situation: Sarah
O’Donnell is a 22-year-old young woman with learning difficulties. She lives at
home with her 61-year-old widowed mother who herself is frail with some mental
health needs.

Problem: Sarah, who
is not eating well, is attending a day care centre twice a week. She is challenging
staff and other users with her behaviour. She is said to be sexually harassing
two male users. This takes the form of touching their bottoms, stroking their
heads and faces, and not respecting their personal space. She also speaks in a
very sexualised way to male users at the centre. She does not do this outside
of the centre. Her attitude towards female users is at times threatening and
often belittling. A staff member described her as a “dreadful bully”. She has
recently flooded her council-owned house six times. She runs a bath, locks
herself in the bathroom, flooding it (and the stairs, hallway and kitchen
ceiling), causing her social worker to go round because of the fears for health
and safety. The fire service and housing department are “going mad”, according
to Sarah’s mother Margaret. Sarah steadfastly refuses any form of supported
care – even for a short respite – but Margaret is struggling with her and
considers that she is failing as a mother, unable to cope without the support
of her husband. No other members of the family visit because of Sarah.

Panel responses

Louise Lewis

What’s needed is for
Sarah to express what’s going on and why. She needs to be central to any
discussions about her life. This is fundamental to working in partnership with
users^.1

There is no comment
regarding Sarah’s communication skills or whether the current concerns are
long-term or new. What does “not eating well” mean exactly? An understanding of
poor diet will vary between individuals depending on knowledge base. Given the
levels of undiagnosed ill health among people with learning difficulties,
Sarah’s diet may be symptomatic of something else^.2 Equally, Sarah
may be unable to communicate that she is in discomfort and is thus expressing
this via her challenging behaviour.³ With Sarah’s consent, there
needs to be a more thorough process of gathering information before any action
plans can be put in place.

There are potential
issues around unresolved grief for both Sarah and her mother, and either may
need extra support or counselling with regard to this. Margaret may benefit
from her own assessment as a carer and being given advice about support groups.
There is a possibility of issues relating to sexual abuse. Hopefully, Sarah
would be given the opportunity to sensitively develop her understanding of
relationships and sexuality. Is Sarah’s “bullying” a distraction from mundane
routines? Person-centred planning⁴ could empower Sarah by increasing
her levels of choice and control over the activities she can access. Sarah may
not behave in such a sexualised manner if she is given other opportunities to
meet people.

A final point, as
this response was considered with fellow panel member Lisa Loveridge. We
reflected that the implications for practice were greatly enhanced by our
differing professional perspectives, reinforcing the benefits of
multi-disciplinary working.

¹
Department of Health, Nothing About Us Without Us, HMSO, 2001

² S Turner,
“Health needs of people who have a learning disability” in J Thompson and

S Pickering, Meeting
the Health Needs of People who have a Learning Disability, Bailliere Tindall,
2001

³ DoH, Once
a Day, HMSO, 1999

⁴ DoH,
Valuing People: A New Strategy for Learning Disability in the 21st Century,
HMSO, 2001

Linda Walz

I would want to
interview Sarah, her mother, day centre staff and the social worker to obtain a
full description and history of Sarah’s behaviour.

Is there a link with
her father’s death? How well has Sarah been supported with this bereavement in
terms of understanding what happened to her father and understanding and
dealing with her own emotional response? Was there time for any preparatory
work with Sarah before he died? Has the loss of her husband aggravated
Margaret’s mental health problems so that she is less able to respond to
Sarah’s needs? Has Sarah had to take on new responsibilities at home that she
is not confident about?

What is Sarah’s
knowledge and experience of sexuality and relationships? What opportunities
does she have for expressing her sexuality? Do the two male service users
consider that they are being harassed by her or is this an assumption made by
the staff? Sarah’s “sexualised” and “threatening and often belittling”
behaviour may suggest she has been (or still is) the victim of sexual abuse –
has this possibility been thoroughly investigated?

Why does Sarah not
want any form of supported care? Is this because of previous experiences? Is
she worried about leaving her mother alone or is she frightened her mother
might die like her father did? Why is she only attending the day centre twice a
week?

I would recommend
that:

– Sarah’s mother is
offered a carers assessment.

– Sarah is given the
opportunity to try out new activities to fill her week with enjoyable
experiences.

– Sarah is encouraged
to expand her social network by being supported to join clubs, evening classes,
and so on.

– Work is done with
the staff at the day centre to help them develop a more positive and
understanding attitude to Sarah.

– An occupational therapy
assessment of Sarah’s living skills is carried out.

– Ways of supporting
contact with other family members are explored.

– Sarah is offered
one-to-one sessions with a psychologist to explore issues of bereavement,
sexuality, relationships and the consequences of potential sexual abuse, if an
investigation indicates that she has been or still is a victim of abuse.

User view

Talk about speaking
up for yourself so strongly and still not being listened to! How many times
must Sarah flood the bathroom before someone listens! This is how we see this
situation, write Kathleen Franklin, Colin Gear and Cheryl Priestley of Milton
Keynes People First.

Lots of people say we
have “challenging behaviours”. We call it “speaking up for ourselves”. Sarah
has a lot to say. First, is Sarah sad and worried? Her dad has died. Her mum is
frail. What happens to Sarah after mum dies? Has she had a say in her future?

Second, Sarah is not
eating properly. Maybe, she has a health problem or a mental health problem.
She should have a full medical check-up.

A third possible
reason why Sarah is speaking up is that she wants out of the day centre. She is
trying to get people to listen. Unfortunately, this is seen as “challenging
behaviour”. Sarah may have been sexually abused or bullied herself. It could
have taken place at the day centre or home. Someone should talk to her about
this. Or, maybe Sarah just wants some romance in her life. She should have the
chance to talk to other people with learning difficulties who could understand
what she is trying to say. She could use an advocate, especially now she has
been labelled as “challenging”, to give her support and make sure she has
control over her life. How about offering her more support choices, not just
respite. Sarah is trying to tell us something. But are we listening? And, if we
are, we still need to figure our how to hear what she is saying.

I think Sarah
O’Donnell needs help, writes Alison Gibbons, chairperson of People First,
Caithness. I think she needs help with her problems and she needs to seek
advice from her counsellor and friends as well. Sarah, it seems to me, would
benefit a lot if she joined a People First group – or something like it. This
group will help Sarah to talk about what she does and why she does it. The day
centre should be made more aware of her problems. She should meet with the
manager and meet with the staff. Sarah’s mum must be very angry with her. She
needs some help as well.