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Joint working with the parent of a child with Down's Syndrome and learning disabilities

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Genuine joint working between a community nurse, clinical psychologist and the parent of a child with Down’s Syndrome and learning disabilities enabled progress far beyond the boundaries of traditional working partnerships

The community nurse had been working with Ms X for two years. Ms X had a son with diagnoses of Down’s Syndrome, moderate learning disabilities and significant physical health problems. Ms X was a single parent and also had a younger daughter.

Input from the community nurse during this time had focused on accessing primary health care services, which Ms X found difficult due to her son’s anxiety around health interventions. The community nurse provided behavioural guidelines in relation to screaming and hitting at home.

The nurse felt she was struggling with the behavioural intervention and requested input from clinical psychology.

The community nurse and clinical psychologist discussed the case, and considered that input had been provided by clinical psychology in relation to behavioural issues in the past, in addition to the behavioural input from the community nurse.

They agreed that it would be more effective to provide direct joint work in recognition of the rapport and trust which had developed between the community nurse and Ms X, and the potentially complex background issues.

Following an initial assessment attended by both professionals and Ms X, six sessions were offered to Mrs X, which would be attended by the community nurse and clinical psychologist.

During these sessions, the clinical psychologist brought the focus to bear on Ms X’s feelings about parenting her son, and the link between her son’s behaviour and her own mental health needs.

The presence of the community nurse enabled Ms X to feel more relaxed and safe to engage with this work. The community nurse was also able to provide historical information about Ms X’s interactions with her son as it related to the therapeutic work, for example, being able to point out positive parenting experiences which Ms X struggled to remember, particularly when her mood was low.

At the end of these sessions, the clinical psychologist referred Ms X for individual input in relation to her low mood, having developed ideas with Ms X and the community nurse about the origins and maintenance of this low mood, and how it affected her son’s behaviour. The community nurse remained involved to support Ms X with healthcare appointments for her son and to work with behavioural guidelines in light of the issues raised by the joint work.

Reflections

The work of these two professionals is typically more segregated. In this case, for example, the community nurse, having decided to refer to clinical psychology, would have normally passed the case on and/or requested a consultation session.

The input that was provided was different in this circumstance, in that both professionals were actively involved in the sessions.

both professionals felt that this was critical to the effectiveness of this piece of work for the following reasons:

  • The community nurse had developed a trusting relationship with Ms X, having worked with her for two years. Ms X found it difficult to trust professionals, so the presence of the community nurse during the therapeutic sessions, enabled her to engage with the clinical psychologist.

  • From the clinical psychologist’s viewpoint, the presence of the community nurse meant having access to information that otherwise would have been hard to uncover, for example, accessing examples of positive parenting whilst feeling low.

  • Both professionals felt supported in the input that they were providing – the community nurse, for example, felt that her approach and thoughts on the case were validated, and the clinical psychologist felt much less professionally isolated whilst carrying out potentially demanding work on emotional issues.

  • Instead of being passed from one professional to another, Ms X had the experience both of continuity (through the community nurse’s continued presence throughout), emotional safety (being able to trust the psychologist more easily given the presence of the known community nurse) and the added support of the presence of two professionals.

It was also felt that working in this way enabled an acknowledgement of the impact of wider emotional issues on behavioural work, which was reflected in the care that was provided and there was a sense, for both professionals, of getting to the ‘root’ of difficulties. Similarly, Ms X referred to the professionals ‘putting their finger on it.’

Both professionals would recommend this approach to others when working with complex cases involving individuals who are difficult to engage and/or have a distrust of professionals.

BY Dr Ursula McCann, senior clinical psychologist; and Michelle Connor, community nurse for people with learning disabilities

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