problems were more diffuse and not linked to a specific need, such as wound care or medication review, some of the negative consequences of case management were more apparent. These patients, although universally appreciative of what the nurses were seeking to do on their behalf, also expressed some concerns.
Regular visits and contact were interpreted as maintaining surveillance of their home situation, building evidence as to whether they were able to remain independent. One woman expressed this recurring anxiety in the monthly interviews; she worried that her community matron would say she could no longer cope and would need to leave her home. Others actively refused services
on offer and did not want to be identified as someone who needed social support to stay at home. Patients were as likely to refuse as accept services. For them, case management as a process was intrusive and to be tolerated rather than welcomed. Even when the case manager’s interventions were appreciated, the increase in visitors and practitioners was not always easy for the older person to deal with:
“She has been very helpful and since she first came to see me all kinds of people have come to visit. The main problem is that sometimes we don’t know who they are and they turn up unexpectedly and expect you to let them in. I got upset one day and called (the CM) who telephoned the social worker on her mobile phone and asked her to come back another day. It’s so unsafe having all these people coming and going and not knowing who they are.” Community matron patient
8.5.1 Confusion and duplication of services
An assumption of case management is that the case manager coordinates other services for the patient and acts as the reference point when other professionals become involved in care. Within all the patient narratives, whilst it was clear that although nurses were able to act as the patient’s representative, there was duplication and overlap with other services. This could happen in three ways: 1) when other professionals organised services on the patient’s behalf without the involvement of the case manager; 2) when the patient independently sought the input and advice of different professionals; and 3) when nursing care was provided by a range of nurses.
Only one of the nurse case managers was part of a discrete multidisciplinary team that had a shared focus (COPD) the others were either working
independently, in loosely aggregated groups of professionals or as a member of a skill mixed nursing team. This affected how the nurses fulfilled their role as co-ordinator and point of contact for other services and how they were recognised as case managers within the organisation. When GP hospital and social care services were unaware that a patient had a case manager or had no links to them, this could result in services and referrals being organised without the involvement of the nurse. There were also examples of community matrons not knowing when a patient was admitted to hospital and one when a district nurse’s patient was referred for surgery without her knowledge. One community matron patient following a hospital admission received a higher level of disability
allowance, and was offered daily home care because of a social worker’s intervention.
Patients drew on a variety of sources for help. This usually depended on the type of need, its urgency and to some extent on the availability of the case manager.
There was a tendency to see the case manager as a provider and co-coordinator of nursing based health care and social support, but to see the GP and/or hospital as the expert and first point of contact for urgent or new medical needs.
The pattern varied according to case management model, for instance,
community matrons were more likely to be a first point of contact than the nurse specialists.
Some patients would choose to consult with both their nurse case manager and their GP over medication and symptoms. Where the nurse did not have a working relationship with the patient’s GP there was evidence of tests and treatment review being initiated by both the nurse and GP or the linked practice nurse and, on occasions, disagreements over prescribing practice. This could place the patient in the uncomfortable position of being in the middle.
Although the case managers were clear they would refer patients to other nursing services for technical tasks or ongoing care such as palliative care, patients had difficulty understanding why they were seeing two different groups of nurses They would be seeing the case manager for assessment, review and coordination of care and then other nurses for wound care, insulin injections and monitoring of vital signs:
“There’s one lot that comes every week (district nurses) and they do various tests, like taking my blood and checking my lungs. The community matron seems to be different, though, I don’t know if they all work together or not.
Sometimes they seem to other times they don’t, I can’t figure it out she’s (community matron) arranged this chair for me and those rails. I think she’s the one who got the lady to come from social services as well.” Community matron patient
For other patients there were episodes of care where two nurse case managers became involved. This detailed account by one patient of the care his wife received over several days illustrates how the organisation of work and
communication between the patient, the GP, and the community nurse specialist could become complicated:
“She was ill over the weekend so the community matron saw her and did a physical examination. Her blood pressure was low so she (community matron) asked the cardiac nurse specialist to see her and in the meantime asked the GP to review her medications. She arranged to do a joint visit with the cardiac nurse specialist. …. She (community matron) took blood and completed a screen, the GP gets the test results and will normally feedback to her (the patient) if there is a problem but she did not get the results for some reason. However, the CNS phoned her to tell her that her thyroxin was too high, that her diuretics needed to be reduced and she was also anaemic. Consequently her thyroxin was reduced, diuretics were stopped, and she was prescribed iron for anaemia. She (community matron) reviewed her on Monday and she was feeling fine; she will review her in two weeks time. The CNS will visit again to do an ECG. The patient will also see her GP.” Community matron patient
This patient added that it was very nice to have two nurses involved in her care but it was not clear who was coordinating her care, or how the test results and monitoring of her progress were being communicated between those involved.
8.5.2 Breaks in service provision and decreasing contact For the patients of clinical nurse specialists and community matrons and, to a lesser extent, the district nurse managers who were part of a larger nursing team, there was an intrinsic paradox. The contact these patients had with the nurses was regular and often time intensive, so, when the nurse was away, on
annual leave or receiving extra training either the patients received no nursing input or a dramatically reduced service. Across all three sites patients highlighted the drawbacks of a service that did not offer continuity. One patient decided to stop using a telemonitoring system when his community matron was on holiday as it became apparent no one was monitoring the information when she was away. Cover for absence at the weekend was always problematic. This district nurse’s patient lived alone, and had multiple problems:
“Usually the nurse is great in helping with what I need and they come regularly.
It’s been very useful to have the district nurse coordinating other services for me but sometimes it doesn’t work very well. When I have a bad time it usually comes on very quickly and sometimes the district nurses aren’t there for that.
For example, one weekend I couldn’t breathe, I tried to find the nurses and they didn’t answer.” District nurse patient
It was difficult to know from the patient data if, over time, patients’ regular contact and reliance on the nurse’s advice and support had unintended consequences of creating dependency. A patient of a clinical nurse specialist described how her confidence in being able to manage her health was shaken when, because the nurse was on holiday, she could not discuss a new medication that she thought had given unexpected side effects. Although the nurses spoke of reviewing patients’ needs and decreasing the frequency of contact with the patients as they became more stable, the patient interviews did not suggest that this process was always understood by patients or carers. Seeing less of the nurse case manager was often a source of regret:
“I enjoy her (community matron) visits and it’s a shame she doesn’t come and see me so often now, but I suppose she is a busy lady and there are other people who need it more than me.” Community matron patient
It was because the patients valued the regular contact and support they received from their case manager and that even when other services were in place they missed this kind of input. One patient with COPD had progressively deteriorated over the nine months and had several unplanned hospital admissions because of her breathlessness. Her community matron had organised social care,
modifications to the home, contact with a community centre, respite care, and, as her condition worsened, continuing care with palliative care support. In the final interview this woman talked of her appreciation for all that the community matron had done for her, but also her disappointment that she hadn’t visited for a month and that she did not now feel she could rely on her. For her, the most important thing that the community matron does:
“is to be there for me, which helps a lot, I can have a discussion and feel safe with her.” Community matron patient
8.6 Comparing case management as one of many services