Present: Steve Iliffe (co-chair), Pat Brown (co-chair), Claire Bamford, case managers, Marie Poole, Barbara Stephens, Amy Waugh
Session 2: Discussions of lessons learned (all)
Pat Brown summarised the key points of the discussion of what had worked well and not so well in case management. She encouraged the case managers to contribute to the discussion. The following key points were included.
Positive feedback from patients and carers
Informal feedback to the case managers indicated that patients and carers valued the continuity and consistency of having a named case manager. Other positive feedback to case managers related to ease of access to case management and being able to contact the case manager directly as and when needed rather than having to deal with appointment systems. The service could also react quickly when needed.
Issues with recruitment and identification of eligible patients
The process of identifying potential participants using the QOF register had highlighted a number of issues and areas for improvement. The Norfolk and Newcastle case managers had conducted additional searches to identify any patients with dementia who were not on the QOF register. One case manager described how some patient records included symptom codes only (e.g. memory problems/disturbance; cognitive impairment) rather than a formal diagnosis despite general recognition within the practice that the patient had dementia. The lack of formal diagnosis meant that these patients were not included in the QOF register. Another had identified a significant number of patients receiving anti-dementia drugs who were not included on the QOF register. A detailed review of their notes indicated that the majority of these patients had a diagnosis of dementia but this information had either not been added to the patient summary or not been properly coded and therefore the patient had not been added to the QOF register. Diagnoses were often included in correspondence, suggesting that data from incoming letters are not systematically coded. Because the diagnosis had often been made some years earlier and was often in correspondence (e.g. from old age psychiatry), the process of reviewing the notes to check for a diagnosis had been a lengthy and intensive process.
There was some discussion of the inclusion criteria for the study, in particular the issue of whether patients using secondary mental health services should be included. It was agreed that only patients being actively managed by the CMHT should be excluded.
Need for culturally appropriate recruitment processes
The need for culturally appropriate documentation was emphasised, together with detailed knowledge of specific local services for minority ethnic groups. The existing documentation was identified as a significant barrier to recruitment in the London practice, which serves a multiethnic population.
Whether the ‘right’ patients and carers are being recruited
The north-east case manager felt that in Newcastle only patients and carers whose situation was relatively stable were accessing the service. There was concern that those with high levels of unmet need were not engaging with the study. Possible reasons for this related to the research aspects of the study, accessibility of the information and the lack of emotional energy and time to get involved. Given that people with most needs may not be participating, it is difficult to gain an accurate picture of the time allocation required to fulfil the case manager role.
The approach to recruitment means that patients and carers are being offered case management at different points on their illness trajectory. Some cases had reported that the service would have been useful earlier, particularly when they had recently negotiated substantial care packages. However, some people offered the service shortly after diagnosis felt that they did not need any input yet. Barbara Stephens felt that people are not always aware of their needs and only realise with hindsight that some help would have been useful. However, increased awareness of current needs should be facilitated by good assessment and engagement with patients and carers.
Concerns over future management of patients and carers
Although one case manager felt that she would be able to continue to support patients and carers after the end of CAREDEM as part of the QOF reviews, the other case managers were concerned that families would be left in ‘limbo’ once the intervention is withdrawn.
Time allocated to case management
There was a clear message that half a day per week is not sufficient to fulfil the role, particularly when travelling time for home-based assessments is considered. The case managers and mentor did not think that a varied-enough caseload had been encountered (e.g. people with high levels of need or in crisis) to be able to accurately estimate the time required. One case manager felt that patients recruited to date in Newcastle were very homogeneous in terms of social class, education and cultural background, which may also give a skewed picture of workload. Although the case manager role allows time to build therapeutic relationships, the time constraints of the case managers limited the extent to which this was possible. Time is also needed by sessional case managers to ‘pick up where you left off’, and also to reflect on sometimes intense experiences within case management.
Case management as a distinct role
The case managers felt that the case management role should be a role with its own identity, rather than an add-on to another role, for example practice nurse. This was considered important as a message to others in the practice and for delivering a high-quality service. Even with additional time (e.g. 50% clinical management and 50% case management), the clinical case managers did not think that the two roles would ‘sit’ together well.
Boundaries between research and case management
Marie Poole raised the additional difficulties created by the embedding of case management within a feasibility study. Patients and carers in Newcastle seemed to focus more on the research element than case management, despite an emphasis on the service element. In contrast, participants in Norfolk seemed more tuned into case management than the research elements. Possible reasons for this were discussed such as a different relationship between the participants and practice nurses.
There was felt to be an overlap between the baseline assessment conducted by the research team and the initial assessment by case managers. Outside the trial the case managers were keen to develop assessment skills (e.g. in using the MMSE) and this could be a useful outcome for practices as well. Steve Iliffe will investigate possible training opportunities for the case managers.
Some of the problems with recruitment may reflect a reluctance to engage with the research aspects of the study rather than a lack of interest in case management.
Location of case managers
One case manager queried the feasibility of delivering case management in GP practices. Colleagues in general practice tended to assume that the case managers were available for other work during their CAREDEM time, resulting in frequent interruptions. The extent to which the practice nurses were supported by their practices varied. One case manager had been asked to take on the QOF register and the dementia reviews, which would build on the experience and knowledge of local services she had developed in the project. Another reported being under pressure to ‘give something back’ to the practice, suggesting that case management is not valued in its own right and consideration needs to be given to ways of quantifying the benefits of case management to individual patients and carers and the practice.
A further issue with being based in general practice was the difficulty in getting through to the surgery by telephone if patients or carers wished to contact the case manager. One case manager suggested a work mobile and the possible use of texting (if acceptable to patients and carers); however, others did not think that this would be logistically possible as they may be undertaking clinical work and unable to respond. One case manager was concerned about her ability to offer a quality service outside of her allocated time (although as yet no participants had attempted to contact her out of hours).
Induction of case managers
Pat Brown suggested that the induction process could be improved, particularly as the case managers had variable knowledge of dementia and local services. A longer induction time could ensure that case managers were better equipped to deliver case management and help them get into their new role. Although the delays in recruitment created some additional time for training, they also resulted in a backlog of cases waiting for initial case manager assessment and limited opportunities for following up cases. PB felt more active support from the mentor would be helpful.
The north-east case manager felt that a background in adult services was an advantage, partly as existing knowledge of services and personal working relationships/contacts facilitated speedy referral, but also because access to social care records provided a more detailed and holistic picture of patients and carers. Another case manager commented that she would benefit from increased knowledge of social services provision.
Preparation of and liaison with existing services
A number of issues had arisen concerning boundaries and perceived overlap of roles with existing services. These concerns are likely to be heightened in the current climate of primary care services. Building up networks, developing knowledge of local services and liaising with colleagues are a key part of the case manager role and sufficient time needs to be allocated to these activities. One case manager had met with CMHTs to try to allay their suspicions about her role and potential overlap with their remit. PB reported that case management had been received positively by social work teams.
Steve Iliffe asked the group for suggestions as to how some of the issues could be addressed.
Recruitment
Possible strategies to recruit the most appropriate participants were:
to link to memory clinics or secondary mental health services with newly diagnosed patients automatically being referred for case management
to alert GPs to involve case managers when concerns are first raised, at the same time as the process of diagnosis
to offer a self-referral system so that relatives could approach a key person in the practice
to have an aggressive information campaign with other community-based services to encourage referrals (e.g. from wardens, housing, banks, police and adult services).
Most of the proposed strategies focused on identifying people early in the illness trajectory. If a prospective approach was used, we would anticipate that one new case of dementia would be identified each year per 1000 patients registered with a practice. Although some patients and carers might require intensive intervention early on (e.g. daily contact in some cases), a staggered approach to recruitment might be easier to manage than the approach that we had used, in which numerous cases were identified at the same time, leading to problems with following up patients and carers in a timely manner. It was important to ensure that recruitment strategies included people with vascular dementia as this group often receive fewer services than people with Alzheimer’s disease.
Location
The team discussed the benefits and disadvantages of working in another environment. Some of the key disadvantages were constant interruptions by colleagues and systems-based pop-up messages. One case manager thought that being located elsewhere would increase efficiency. Possible alternatives were:
Multiagency settings, which could enhance opportunities for liaison with other practitioners and raise the profile of the case managers. One potential difficulty might be remote access to GP notes. A specific issue for one case manager was the need to work across two local authorities.
Home working or hot desking in Age UK offices might minimise the potential for mission creep but could also reduce the visibility of the service.
Memory clinics (currently where Admiral Nurses are based).
Steve Iliffe suggested that there may be the same scope for interruptions and mission creep in other locations.
Time required
Cross-practice working was discussed in the light of one case manager’s experience on CAREDEM and another’s previous role as a paediatric case manager. We explored typical caseloads of case managers in other contexts. One case manager had a caseload of approximately 150, as do Admiral nurses. Community matrons were thought to have a similar case load. If we were recruiting prospectively, a typical practice of 12,000–14,000 patients would expect to have around 12 patients with a new diagnosis of dementia per year. Based on a caseload of approximately 150, a full-time case manager would be able to cover approximately 12 practices. The capacity of the case manager would depend on the availability of other services, which would determine whether the case manager primarily had a co-ordinating role or was providing direct help to patients and carers.
Session 3: Case managers’ input into practice records (all except Amy Waugh)
Marie Poole asked the case managers to describe how they were documenting case management. There was consensus that the paperwork designed for the study was not user-friendly and, as a result, each case manager had developed her own approach.
One case manager had recorded the initial assessment in the study documentation and the GP notes but felt that this was an inefficient use of time. Subsequently, she had written a narrative summary of each contact in the practice notes and then cut and pasted this and kept a copy in a Word document for each patient and carer. This enabled her to quickly review her caseload each Monday. Although another queried whether it was appropriate to record case management in the GP records, this case manager felt that it was helpful for her colleagues.
Two case managers were not inputting any data on to the practice systems (EMIS; Egton Medical Information Systems), with the exception of one noting when telephone calls were anticipated. The other raised the issue of patient confidentiality as one patient had specifically requested that certain information not be shared with the GP. Pat Brown suggested that this could be managed by noting brief details of the contact in the GP notes but writing fuller notes elsewhere (perhaps even omitting details from these notes but including sufficient information to act as an aide memoire).
Marie Poole asked whether there should be some standardisation of recording data in the practice systems. It was agreed that at a minimum the GP notes should indicate that the patient was involved in the CAREDEM study. Steve Iliffe suggested that, if there was a READ code for case management, this could be used to code each contact with the patient.
Marie Poole had drafted a QOF letter and proforma that could be completed by case managers and used to meet the requirement for annual review of patients on the dementia register. None of the case managers had used these to date. One case manager had now taken over responsibility for the annual reviews in her practice; however, these documents may still be relevant to the other practices. Another had discussed with the general practitioner adding scanned versions of case manager assessment documents to the patient notes, but had not yet done this.
Pat Brown raised issues around the practicalities of using paper compared with electronic documentation.
