Core knowledge and skills

In terms of knowledge and skills required by case managers, participants expected them to be able to provide information around dementia and local services. Participants felt that case managers should have sufficient knowledge to signpost people to appropriate services and provide information. Access to information about dementia was crucial in enabling participants to manage the practicalities and uncertainties of the condition and to empower patients and carers to understand their condition and plan for the future:

Professional carers that’s their vocation they understand it, they’ve been trained for it. If you’re a son, the child, who’s been doing something else you don’t know what the nature of the beast is and if you misunderstand it you can say ‘well that person is just being difficult’ even though they’ve never, they’ve been a beautifully loving person up until that point when they sort of change. If you don’t, if you haven’t been counselled, it hasn’t been explained to you, you misinterpret that can cause for stress. The more you understand this disease and the behavioural symptoms then the better you are to deal with it. So again somebody like [case manager] you know being a point of contact.

Care, A04

Professional background

Most patients and carers expressed no strong preference regarding the professional background of case managers. Although one participant felt that the nursing/medical status was important, another patient–carer dyad felt more comfortable with a non-medical professional as so much of their life was already medicalised. Benefits of both a nursing and social work background were identified, but neither was seen as a core requirement. From the perspectives of patients and carers, nurses were perceived as providing a more direct link to the GP and advice and support around comorbidities and minor ailments:

Interviewer:

And obviously [case manager] is a nurse and is that important to you that she’s got a nursing background, a medical background?

A02:

Yes, oh yes it’s always very important, yes it’s because as I say I have got different things wrong with me but I feel pretty good most of the time, I don’t feel like an invalid, not yet anyway.

Patient, A02

In contrast, social workers were seen as closely linked to formal or paid support services. There was also a feeling that there were established routes for seeking help with medical issues, whereas patients and carers were less familiar with where and how to seek help for social problems and therefore valued the specialist knowledge of case managers with a social work background:

I don’t think the clinical side probably comes into it, it’s probably more having access to knowing what services are available and more helpful in that way. I mean obviously the doctors would be the ones that would be doing the medical side of things as regards the illness, but it’s more about managing the problem and it wouldn’t make any difference to me where it came from, and what department or whatever, so no, it’s not a problem.

Carer, B01

Interpersonal skills

In describing the skills needed for case management, patients and carers emphasised interpersonal skills such as empathy, the ability to listen, making people feel at ease and not rushing people. Advocacy was also suggested as an important professional skill by one carer. In addition to skills, personal attributes of case managers were considered important. Case managers were described positively and adjectives were used such as ‘nice’, ‘pleasant’, ‘bubbly’, ‘lovely’, ‘easy to talk to’, ‘a friendly face’, ‘comforting’ and ‘supportive’:

I think the most important thing is the care. That’s what I think. Because having worked in that sort of industry there were people who came along that obviously had fantastic qualifications to see the people that I was looking after but they didn’t seem to have any empathy.

Carer, A02

Potential and actual benefits of case management

The perceived and actual benefits of a case manager from the patient and carer perspective included acting as a first point of contact and also as a ‘safety net’ for all concerns, potentially providing a one-to-one, therapeutic relationship for future ongoing support and offering information and direct links to the practice and other services. Some participants suggested that the case managers should also be able to take on a more active role in negotiating or brokering with local services. Participants valued the ability of case managers to address both health-care and social care problems. Patients and carers were generally satisfied with their experience of case management and several participants were clear that they wished the service to remain in place (both for their own benefit and to benefit others). The service created feelings of security or comfort for some patients and carers. In addition, a number of practical benefits were reported, including easier access to GP appointments, benefit checks and links with other services:

What was very useful was when I told her that trying to get appointments is really difficult; she’s actually used a pop-up system now in the surgery to get the earliest appointment without me having to say ‘is it possible, can you bring the appointment a bit forward?’ Because I might be off on a particular day. She used the pop-up system so it comes up on the screen to let us have, without debating, the earliest appointment in view of my being a carer and at work and mum being not been able to wait a long time for an appointment.

Carer, A06

At the minute, we’re going through a care plan [for a personal budget], and that’s where you get an amount of money and it’s done through the council, which we never know about. It was [case manager] who directed us in that way and we can go and spend it like – [patient], basically, can go out and spend it. It covers your care needs and everything, and that’s something we never knew about. It was just [case manager] directed us in that, and checking that our benefits were in place.

Carer, B02

However, outcomes were less positive for some patients and carers. For example, one carer was waiting for information on whether or not her mother could keep a cat in sheltered accommodation:

Carer:

It’s the one thing that my mum said that she really, really would love to happen but as I say I don’t know whether it would be possible.

Interviewer:

And has there been any follow up with [case manager]?

Carer:

We haven’t heard anything. No we haven’t heard anything yet. But it wasn’t that long ago so maybe she’s tried to get in touch with them.

Carer, A02

A key aspect of case management valued by patients and carers was the idea of background support that could easily be called on at a time of need. This was described as providing a sense of back-up, a safety net, security and knowledge that help was available if needed. This concept of contingency was considered key to avoiding or averting crisis:

Carer:

She [case manager] was good. She said if there was anything, ‘Don’t sit there worrying. Pick up the phone and we’ll sort something out.’

Interviewer:

Did you ever have the opportunity to pick up the phone and call her?

Carer:

No, no, but it was just nice to have that safety blanket there, because I’ve got her number in my phone now, so if there’s anything that comes up, or anything like that, I know the phone number is there to get in touch with [case manager]. So it’s really good.

Carer, B02

For patients and carers to feel comfortable about contacting the case manager in the event of difficulties, there needed to be time and opportunities to develop a deeper relationship. Regular contact, the provision of case management from the early stages of the condition and continuity were seen as crucial for establishing a good relationship:

Carer:

I think it needs to be regular […]

Interviewer:

Right, even from that early stage?

Carer:

I think so.

PWD:

Yes.

Carer:

So that then when it gets to a stage when we really do need help we’ve got the confidence in the person you’ve been seeing all along.

PWD and carer, C04

Face-to-face and telephone contact were both considered acceptable, although face-to-face contact was often preferred as it facilitated relationship building better than telephone contact. One participant would have preferred more face-to-face visits at regular intervals rather than just telephone follow-ups:

I was hoping that we’ll get regular support and I think visits on a regular basis . . . it would be nice to think that I know that we are going to have another visit say every 3 months or something like that.

Carer, C04

Clarity over the case manager role

The remit of case managers was unclear to some patients and carers and there was a degree of uncertainty about the specific areas of support available:

Interviewer:

Do you think a case manager could have helped to support you in that role, or . . .

Carer:

Eeh, I don’t know, is it their job to do that is it?

Interviewer:

Well, case managers can support the carer and the person with dementia as well, so, or did you feel that you navigated it fine by yourself?

Carer:

Well no, I didn’t – I had to go to the, I’m still going to the council, I was there yesterday.

Carer, B13

In addition, there was some overlap of roles, with dementia advisors (piloted in one site) and case managers being perceived as offering similar types of support. The potential for case management to offer continuity of care was one aspect of case management that was potentially distinct from other services. Participants reported having been discharged from other services and even in primary care found it difficult to consistently see the same GP unless they were prepared to wait for an appointment:

Carer:

We never had that [ongoing contact] before. It was just like, we’d got the diagnosis, go to the doctors’ appointments and things, and then that was it; we were just sort of left.

Carer, B02

PWD:

Because very often you can’t get in to see a doctor

Interviewer:

Right, is it difficult?

PWD:

It can be. It is yes. I mean I just see whoever, not like the old days when you used to see your doctor.

Patient, C02

Implementing case management in practice

Key issues for patients and carers included access to and availability of the case manager, the most appropriate time for them to access case management and the perceived severity of the problems that the case manager would deal with.

Core knowledge and skills

Participants generally felt that having an interest in working with people with dementia was the most important aspect of the role:

I think it’s knowing something about dementia and handling dementia.

GP

It seems to me that you need to be a dementia specialist but you don’t necessarily need to be a nurse.

Voluntary sector worker

It was suggested that knowledge about dementia was crucial for supporting carers, who often had limited understanding about the behavioural changes and illness trajectory of dementia. For carers, an empathic approach and practical strategies were seen as more important than medical knowledge:

So a lot of carers who come to us are struggling with coming to terms with how different that person has become, with perhaps that they’re beginning not to recognise them, that they are in some cases quite difficult, their behaviour is difficult at times. So it’s about information but also a discussion then around how that impacts and kind of validating how that person feels about that and helping them to think about strategies and communication techniques that will improve that, because they’re dealing with it all day every day. So slightly the medical knowledge is almost less important than how you deal with that day in and day out.

Voluntary sector worker

Professional background

The professional background of the case manager was not felt to be crucial to adopting a case manager role.

Well I think that the important thing is really the background of the worker and the fact that they’ve got experience in working with people with dementia and an interest in continuing to do so. So their professional background is less important I think than that. But I wouldn’t have said that it needed to be a role that any particular profession is best at, I think it very much depends on the individual rather than what their background is.

CMHT worker

Although many respondents felt that a clinical background was not important, some professionals thought that a nursing background would equip case managers with appropriate skills:

I do think the nursing team are the place where most of the skills are to help to do things like case management. Yes, there’s the medical and there’s tablets now so doctors suddenly and neurologists suddenly get all excited about dementia, but actually a lot of it is to do with a more nursing perspective and looking at problem-solving around practical things a lot of the time.

GP

One participant thought that the stigma associated with having a social worker might prove to be a barrier to accepting case management in the early stages of dementia and suggested that a nurse might be more acceptable to patients and carers:

We do get people who find it very difficult to feel that they’ve got social workers involved, there’s still that certain stigma involved isn’t there? Having you know, in your family, having a social worker. So I can see that particularly at an early stage there could be some advantages in it being a practice nurse.

Voluntary sector worker

Interpersonal skills

Some participants identified the importance of good interpersonal skills and the need to build up the relationship with the patient and carer over time:

Going into someone’s home and assessing the situation fully takes a lot of time and my own experience is that carers are often a little bit anxious about what you’re going to suggest and what you’re going to try and do and whether you’re going to be critical of – they might know that their care is falling short of the ideal a lot of the time but it’s their husband or their wife and they want to carry on. I think people are very scared and it takes a while to build up a relationship, to actually develop that – so I think half a day a week in a practice like this which has got a large elderly population, you could easily use that and double it and possibly more.

GP

Although some professionals recognised the value of a series of face-to-face contacts, they suggested that telephone calls could also be an effective way of maintaining links with patients and carers:

Well I think it depends on the patient but . . . I don’t think it has to be a rigid structure. I think it doesn’t necessarily have to be visits; I’m a big fan of the phone call. I think because they take two minutes, you know, but actually people just really appreciate the ringing up to say ‘oh you know we talked about this last time, how’s it going?’ and ‘oh it’s great!’ or ‘no it’s not quite working’ or ‘we’ll do some tests’. It takes no time at all but patients really appreciate it, or patients and carers.

GP

Holistic approach

Professionals thought that case managers needed to use a holistic approach that allowed them to ‘see the bigger picture’. Rather than a medical focus an in-depth exploration of the impact of the disease was required:

If there were specific medical questions they [case managers] would be able to direct somebody to whoever could give them those answers. It’s more important from our point that it’s a sensitive discussion around ‘how does that feel for you?’ ‘Do you feel you are going to be able to look after, is the family going to be able to do some of this looking after?’ ‘What impact is that going to have on you, do you need some support around you?’ That sort of thing. In a, you know [laughs] a more sensitive way maybe than I’ve just done but that’s the discussion that we need somebody to have and I think that’s about the way you have that discussion rather than a particular expertise around the medical side of dementia. I can’t see that that would make that much difference.

Voluntary sector worker

The lack of attention of existing services to the psychosocial aspects of diagnosis was highlighted by the recent professional experience of a dementia support worker:

I saw a couple in [place] last week and it’s a recent diagnosis. She said, ‘of all the medical professionals, no one has asked me how I feel about it’. This had been going on 2 months. Had the diagnosis, she was seeing someone about medication. ‘Nobody has said to me, except for you, how are you feeling?’

Voluntary sector worker

Potential and actual benefits of case management

Professionals focused on potential benefits to those with dementia, their carers and then finally the GP practice. Case management was seen as potentially benefiting the person with dementia by providing continuing care, with an individual maintaining contact over a long period of time and dealing with problems at an early stage. It was seen as complementary to existing secondary care and social services, neither of which had the capacity to monitor patients and carers nor to provide support at an early stage in the illness trajectory:

We do know that people with dementia, their needs change dramatically over time in different ways and ideally we would keep them on and monitor and follow up and provide support as their needs do change, but that’s impossible. So they have to be discharged, and then hopefully are re-referred before a crisis occurs but sadly it’s often at the point of crisis so, that’s one area where the case manager in primary care can plug that gap.

CMHT worker

So people at the beginning of their dementia actually don’t come to us. It’s when they’re wandering or they’re not safe or if they’re a risk to themselves.”

Commissioner

The lack of routine reviews for people with dementia was highlighted as a shortcoming of existing services (although the introduction of the dementia reviews within primary care will ensure at least annual follow-up):

That would be great if everybody who was given a diagnosis had a review a year later because they don’t at the moment. . . . I sit there at these multidisciplinary team meetings, and people write in and say: ‘Mr Bloggs has got dementia and it’s got worse. Can he be re-reviewed?’ Basically, the mental health team will say, well, unless there are any specific behavioural problems, unless there are any other particular problems, and something has changed; if it’s just the fact the dementia’s got worse, they won’t pick them up.

Voluntary sector worker

By introducing regular, informal contact with patients and carers, case management was seen as having the potential to identify problems at an early stage and facilitate appropriate support:

I think that if you can induce sort of joined up care and if you can almost form a circle around a patient, these vulnerable people and if something happens or you’re worried or something goes wrong or they’re not quite so well, if you can communicate with other people involved often you can catch them. Whereas if you don’t know who’s involved it can take you ages or it can send you off on another referral pathway or get too many cooks involved and I think that’s the secret of looking after these people – is to have a few people involved but who are involved all of the time. The advantage of it is that I think the patient gets better care, things get picked up sooner, there’s less upheaval for them if they’re moved from one person to the other, there’s less duplication of investigations and possibly conflict even of treatments and from a personal point of view as a GP it’s actually less hard work if you know who to ring and you’re all on the same page.

GP

It was also suggested that carers would benefit from early and ongoing support:

From our point of view, the earlier that the carer is recognised as part of the care that needs to be given, the better, so if they’re part of care planning right from the beginning then they’re going to feel recognised and valued. They’re also going to recognise some of the stresses on themselves and be able to make informed decisions about how much care they want to give and how much they want to ensure is given by other services. So you just get a more balanced development in terms of a caring role. I think unfortunately what quite often happens is that carers arrive here at the point where they’ve hit a brick wall.

Voluntary sector worker

There were also perceived to be benefits for the practice, in terms of potentially saving appointment time, having a specialist in dementia within the practice and, on a personal level, the opportunities for professional development for any practice nurse who took on the role of case management:

I think several things for the patients and their carers, someone in the practice who was known to them as having an interest in dementia and would be a point of contact for them. And also some professional, not, professional development is not quite the right word, but some increasing professional self-esteem really for [case manager] who was doing it.

GP

All participants found it difficult to evaluate the extent to which these potential benefits of case management had been realised in practice. The lack of feedback from case managers about their work with patients meant that GPs were often unaware of which patients and carers had received the service:

To tell you truthfully, I have no idea if you had picked the two, the people up that I referred and I have no idea what has been done with them on behalf of the project and I have no idea if it’s made a difference.

GP

Health and social care professionals beyond primary care similarly found it difficult to assess the impact of case management other than having received a small number of referrals or requests for information from the case manager. Even when positive feedback from patients and carers had been received, there was recognition that they were often very grateful for help and that it was often difficult to get anything other than positive feedback:

Certainly one or two, and certainly good feedback, they like her . . . I think patients and carers obviously kind of value almost anything that’s offered and that they’re very grateful for any additional support that can be provided and particularly if it’s just on their doorstep . . . you get good feedback, but actually in terms of being constructively critical you need to actually dig a bit deeper don’t you?

CMHT worker

Clarity over the case manager role

Although, in theory, professionals could see that case management potentially ‘plugged a gap’ in services, in practice there was confusion over the boundaries between case management and other professional roles. Concerns were expressed over potential duplication of roles and the difficulties of identifying the most appropriate referral pathway:

I just remember at the time we all sat there and said, ‘Well, where do you fit in?’ This was the mental health nurses and myself: ‘Where do you fit in compared to all the people who are already visiting these people with dementia?’ . . . I think it was felt that there was going to be some duplication.

Voluntary sector worker

The provision of support for people with dementia and their care is so stretched that somebody else providing a kind of direct link between if you like the primary care and other services would be a good idea. So yes, I was very supportive of the plan . . . I think that the problem sometimes is that roles aren’t clearly, or maybe not clearly defined enough, between for example our community mental health nurses, the dementia advisor that we work with and the case manager. And I do admit sometimes that, when I’ve got somebody who I know needs support, I’m not at all sure necessarily who would be best to refer to. And so, if I think if anything I think the definition of roles and responsibilities needs to be much clearer for it to be most effective.”

CMHT worker

Implementing case management in practice

Several practical issues were raised about the implementation of case management in practice. The time required for the role was identified as a potential issue by several professionals:

I know [case manager]’s feeling quite pressured in actually trying to find the time to do this – my impression was that this was feeling like something additional that had to and I think it’s just that whole thing of having to, even if you’ve got funding for something, you still have to fight for the time and fight for other people to recognise it as being important, and that’s quite hard sometimes.

GP

Although home visits were recognised as taking significant time, there was a strong view that the ability to offer home visits was essential with this client group, partly because of mobility issues for older people but also to gain a better understanding of their social environment:

You know you see the nicest turned out people who they make an effort, they come into the doctors but you go home and then you realise there’s mouldy food in the fridge and the milk’s still on the doorstep or they’re sleeping downstairs or you walk in and you get a picture straight away usually, particularly about circumstances. . . . If they know they’re coming to the doctors, often you dress and think appropriately and plan that out. Also, the other thing is quite often if they do have dementia and unfortunately they quite often forget their appointment and it means that you don’t get any follow-up anyway.

GP

For the purposes of the feasibility study, patients with dementia were identified from the practice dementia registers and so the patients who were included were at different points on the illness trajectory. We asked professionals when they felt that case management should be provided. Overall, early intervention was seen as the best practice, although views varied whether it should be offered at diagnosis or slightly after diagnosis (e.g. on discharge from the CMHT at the memory service):

Probably it should happen at diagnosis so that the patient and the carers are aware that the service is there without being awfully intrusive, so that they get used to the idea. So I would have thought from the word go . . . and then we go in say once every 3 months or if there’s a crisis, or even once every 6 months depending on what they’re like.

GP

I don’t think it should be offered at diagnosis, because I think that’s where in fact patients get the most contact from us, and in particular if somebody is starting on Alzheimer meds [medication] then they’re seen sort of fairly regularly by ourselves. I think what would be helpful would be for us to be able to offer the case manager at the point of discharge from ourselves and . . . maybe we’ll arrange for you to see her once just so you can say ‘hello’ and then you know that she’s there if you’ve got any concerns. I think that as I said before, I think that would kind of plug the gap really, and to some extent at least, rather than people feel they’ve been discharged so they’re not quite sure where they can go now to get help.

CMHT worker

Some of the GPs noted that similar systems of providing a contact for a known person within the primary care team were already in place for other patient groups, such as those with cancer:

We’ll have a cancer watch list so as soon as they’re diagnosed there may be absolutely no need at that time but I’ll make contact and the district nurse will make contact so at that point there might be nothing, but at least they’ve met us, we’ve said ‘hello, we’re available get in touch’.

GP

Potential barriers to case management were that some people often do not identify themselves as a ‘carer’, particularly in the early stages of their relative’s dementia, and that people from some minority ethnic groups were reluctant to be diagnosed because of the perceived stigma:

So if you look at some of the minority ethnic communities often there’s a reluctance to get a diagnosis for dementia; there’s still a lot of stigma attached to it . . . and even more of a difficulty in terms of people recognising themselves as a carer because it’s just seen as the role within the family. I’ve done some work with older Bangladeshi women . . . and one of the things that that you discover is that there isn’t a word in their language that directly translates the word carer because there isn’t that concept. Do you see what I mean? It’s just seen as within the family, that’s what happens.

Voluntary sector worker

Advantages and disadvantages of siting case management in primary care

A range of advantages and disadvantages of case management being based in primary care was identified (Box 2). Ease of access was identified as a key benefit; professionals working for a local voluntary service felt that being based at the GP surgery would facilitate uptake of support:

BOX 2

Perceived advantages and disadvantages of delivering case management through primary care (views of health and social care professionals) I think a lot of people feel that going to the GP practice is more, it’s kind of more normal for them isn’t (more...)

If we sat in a surgery we’d pick up a lot more trade, wouldn’t we? We’d have a lot more people than we do at the minute, if we were based in the surgery.

Voluntary sector worker

Overall, the benefits of being based in primary care far outweighed the disadvantages identified.

Although primary care was seen as the most appropriate site for case management, the importance of being linked with other local services (either the voluntary sector or CMHTs) was highlighted. It was thought that this would help clarify role boundaries and facilitate joint case work. One suggestion was for the case manager to attend CMHT meetings:

I know she’s on the end of the phone but . . . maybe not weekly, but maybe every now and again [she could come to the CMHT meeting] to discuss the people that she’s got on her caseload and the people we’ve got on our caseload, and in particular the ones that are shared.

CMHT worker

Embedding case management in primary care

A key advantage of being based in primary care was the potential for the case manager to liaise with colleagues in the event of concerns about individual patients and carers. The extent to which these links were enacted in practice varied considerably. There seemed to be particular challenges in developing effective working relationships for the case manager from a social work background who had not previously been known to the practices. From the GPs’ perspectives, the lack of visibility of the case manager, together with the lack of feedback on work carried out with patients and carers, meant that liaison had been minimal:

If I’m honest we hardly ever saw [case manager] within the practice. We only saw the person twice, once at the very start and once after I think I’d met with you and said we haven’t heard or seen her and she then turned up once again.

GP

Two participants suggested that the lack of embeddedness of this particular case manager was perhaps more to do with the individual than the role:

That might be an issue with her rather than the role as a whole.

GP

Even in practices in which existing practice nurses took on the role of case manager, it was unclear exactly how familiar their colleagues were with their activities:

Interviewer:

Do you think the other practice staff knew what [case manager]’s role was when she was doing this other role?

Administrative staff:

I don’t think they did necessarily because you are right, we are a large practice. We’ve got 15,500 patients. We’ve got 19 doctors, three nurses, etc. Nine or eight loads of people to staff, receptionists, etc. So I don’t think, everyone just gets on with their parts of the work and one or two might decide to find out and so on. But we might have mentioned it in the newsletter or one of the staff meetings on a couple of occasions last year, but I don’t think anyone really knows. But then if you ask me ‘do they know that there’s a midwifery service?’ I don’t think they know what’s on here. Do you see what I mean?

In general, primary care staff had little knowledge of what was actually being delivered to patients. This was compounded by different approaches to recording case management work in the primary care notes. Only one case manager made detailed entries; one simply noted times and dates of contacts; and the final case manager felt that it was inappropriate to record any details in the GP notes. Instead, a summary of the work with each patient–carer dyad was sent to the GPs at the end of the project; however, although the GPs found this very useful, they would have preferred more timely feedback.

A number of participants felt that having a summary or key points recorded in the patients’ notes would facilitate communication; it was suggested that the model of recording used by counsellors attached to GP practices would be ideal. It was also suggested that regular feedback through practice meetings would have been beneficial. Furthermore, appropriate meetings were identified that a case manager might usefully attend, including CMHT meetings, district nurse meetings or the multidisciplinary team meeting:

Every 3 months we have a meeting with [name] who is our consultant psychiatrist and I think that could be a useful tag on to that. It could be, if that was inconvenient, it could be a tag on to our regular meetings with the district nurses.

GP

I think for benefit further would be for [case manager], and maybe [mentor], to host an education meeting for the GPs, and to cascade what they’ve learnt. I know we do have, every Friday lunchtime, an education meeting and . . . if it wasn’t ever discussed, it’s a route that we ought to go, so the nurses, peers and the GPs, they all can learn.

Administrative staff

The value of informal ad hoc meetings was also mentioned:

I think if it could be from somebody who was in and around the building who you bumped into or who you could have internal e-mail contact with that would be the ideal.

GP

The extent to which the practice nurses engaged in these meetings within their own practices was unclear, although no comments were made about their integration (or lack of it) in the interviews with their primary care colleagues. Although the practice nurses had the advantage of already being embedded within the practice, the potential difficulties of integrating an ‘outsider’ were not seen as insurmountable, provided that they had the necessary communication skills and desire to link with the primary care team. There were, however, other advantages to having existing members of the team act as case managers. These included their existing knowledge of patients and practice information systems, the benefits to the practice of developing the skills and roles of existing team members and the perception that using an existing member of staff was somehow more holistic:

But how would she know how to use the system? Time wise because obviously she’d have to go to someone to find out, how do I source these patients, how do I go through their records, just to get to know a medical system I know from just my experience here that you know it isn’t just a quick lesson, there really isn’t. My gut feeling would say it’s a downside. I would think it’s far better where people are familiar with the system.

Administrative staff

I think it makes her work seem more valid, rather than just being an add-on. And I think for patients it feels – I think for our patients, we know our patients, they like the surgery here, they like the nursing team, and it feels more solid, it feels more a part of their overall health care and their overall, that they’re being looked after holistically rather someone else coming in and doing an add-on.

GP

The one benefit of being an ‘outsider’ to the practice and coming in to the case manager role was the perceived ability to legitimately ‘ring fence’ one’s time. Professionals working in small practices felt that it would not be appropriate to have a case manager embedded within their practice, but suggested that a different model was needed, such as a mobile service that could attach itself to the practice at certain times:

You can’t have an embedded person because actually they haven’t got the resources to do it so you’re probably looking at a model where you do have one person covering several practices. So for example we have, I know it’s not the same thing but one of the things that’s come up, is the 24-hour blood pressure monitoring which is a new NICE [National Institute for Health and Care Excellence] guideline. We have a lady who comes in every two weeks because our population’s smaller and that suits our population so they get seen quickly and efficiently and it actually only takes one afternoon a week to cover our patient load.

GP

Supervision and support of case managers

Although existing line management arrangements continued for all case managers, there was little evidence that this had included any detailed discussion of work with clients for the practice nurses involved. Only minimal contact between the lead GP and case managers was reported in three of the four participating practices:

But I’ve just let her get on with things really, and I sought her out I don’t know, probably end of November time, a bit before Christmas just to see how things were going and touch base at that point.

GP

The extent and form of supervision provided by existing line managers seemed inadequate to support the case managers in their new role. There was no evidence that line managers facilitated or encouraged case managers to participate in relevant practice meetings, checked that work was being recorded in the primary care notes, helped them to ring fence the time available for case management or reviewed their work with individual clients:

So what [case manager] was doing was she was also going on home visits to meet these patients on our register. When she went on these visits she’d either let me or her colleagues and the nursing team know that she’s on these visits. I think they took about over an hour or so, a long time for a consultation. She’d come back and do the documentation, etc. and so on. My question with her was ‘Do you need as much time as you’re spending for six patients?’ . . . I always received the answer ‘Yes’. I didn’t bother going beyond that really.

Administrative staff

With more robust practice-based support and supervision, it is possible that the case managers could have achieved more within the time and resources available.

Core knowledge and skills

There was recognition by the mentor and members of the research team of the range of knowledge and skills required by the case managers. Knowledge of dementia and available interventions and awareness of local services were highlighted as core skills. Existing knowledge of dementia varied significantly between case managers; although one person had no direct experience of working with people with dementia, two case managers had a specific interest in dementia and were keen to develop or utilise their skills in this new role:

Dementia’s my special interest anyway; I’ve worked for many, many years in dementia care. I’ve got a diploma in dementia care as well.

Case manager

The process of recruiting case managers varied between sites; whereas the social workers had to formally apply for secondment to the role, arrangements for the practice nurses were less formal:

I was nominated and I had the right to refuse but I was nominated . . . I suppose as soon as they got a whiff of my case management experience my fate was sealed.

Case manager

Although this practice nurse had extensive case management experience (in paediatrics), she had little knowledge or experience of dementia. The feasibility of developing sufficient expertise within the time available was questioned and it was suggested that a more formal interview process, perhaps including discussion of scenarios, would be useful in ensuring that the case managers had core knowledge and skills relating to dementia:

For me one of the fundamental flaws was perhaps recruiting people into a dementia case management role where not everyone had a basic understanding around dementia.

Mentor

The value of knowledge of local services was emphasised by the case managers and mentor, who saw signposting as a key part of their role:

I think families will want to know about ‘what’s the name of that day centre, two streets away?’ but I think that will come with the practitioner’s knowledge and I think that’s when I would say ‘well actually I’ve got a leaflet on [a particular] day centre, here it is’ or ‘I can talk about that’.

Case manager

Although the case manager with a social work background had a good knowledge of local services (and often had contacts within such services that further facilitated the process of referral and liaison), developing this knowledge was challenging for practice nurses, particularly in one setting where the practice population spanned two local authorities:

I’ve learnt a lot about different services and networking and I feel like there’s a lot to learn still, loads and loads and loads, I still feel ‘oh, I don’t know who to turn to with this’.

Case manager

Professional background

Views on the relative merits of different professional backgrounds for case management varied. In addition to their knowledge of local services and their skill set, social workers were also more familiar with working independently in the community, visiting people at home and working within existing policies for activities such as out-of-hours working. Practice nurses were used to working within the GP surgery and had some concerns about home visits:

They [practice nurses] don’t see themselves as doing many home visits and they are concerned about insurance cover for doing that.

Team member

Whereas the practice nurses were familiar with the primary care environment and culture, being based in primary care was a significant shift for the social worker, in terms of both the physical environment and the lack of formal structure for their work:

I suppose it’s quite a unique situation where you’re not tied down by statutory frameworks, I suppose what I’m conscious of is that sort of freedom, that flexibility that’s quite a unique situation to be in; I don’t need to see the person every 6 weeks, I don’t have to make sure that I’ve done that document in time and I’ve done particular things. I suppose I’ve just absorbed so much organisational policy that I’m so used to and it’s just putting that different hat on, that’s going to be hard.

Case manager

In addition to bringing their own professional knowledge and expertise, the case managers also brought their preconceptions about other agencies to the role. The views expressed by one case manager from a social work background may have impacted on her ability to work effectively with primary care colleagues:

I think medics have a very different approach from social workers. Obviously medics are quite problem orientated there is something wrong, we shall fix that, move on. Whereas obviously adult services, social services are more looking at the wider aspects, the bigger picture, more long-term changes which is certainly the way I see the care manager’s role. It’s [a] more holistic approach; it’s not about there’s a problem, diagnose it, cure it.

Case manager

Although one of the social workers argued that a social work background was essential for case management, none of the other case managers had a strong view on the relative values of different professional backgrounds.

Interpersonal skills

Developing relationships with people with dementia and their carers, and managing potentially conflicting needs, were seen as key skills for the case managers. Again, case managers with a social work background felt that their training had equipped them with the necessary interpersonal skills:

The core social work skill is in communication, it’s in observing, reflecting, evaluating information, being analytical with information, being able to probe deeper into systems, into relationships and from that being able to problem solve a situation.

Case manager

She knows how to think about information, synthesise it, check it with people and so on. She’s aware of a lot of the issues around things like capacity and engaging family and social networks, managing the dynamics that can emerge.

Team member

Potential and actual benefits of case management

Among the case managers and members of the research team there was strong commitment in theory to the case management approach. A range of potential benefits of case management was identified (Box 3). The key differences between case management and other services related to continuity of care and flexibility over input:

BOX 3

Perceived benefits of case management (views of case managers) you see the patient and it’s for a short, predictable space of time. An allotted space of time so it will be nice to get back into people’s lives rather than just what they’ve (more...)

It would be supporting people across the whole journey, and that’s what families need and that’s what they ask for, and they’ve been asking for it repeatedly for many, many years.

Team member

Only one potential negative consequence of case management was identified and this was the risk of creating dependency and disempowering patients and carers:

certain people will hold on too long and do too much for people and with the best will in the world, the best intentions will foster dependency . . . the potential [is] there for crossing a boundary of being too close, of de-skilling people and making people dependent.

Case manager

There was a sense of frustration among the case managers and mentor that there had been insufficient time in the feasibility study to really demonstrate the potential of case management. The time available for case management had been curtailed by the considerable delay (of almost 5 months) in obtaining ethical approval for a substantial amendment relating to recruitment and slow recruitment. As a result, the case managers had had relatively little time to develop their work with patients and carers and could identify relatively few concrete benefits for participating patients and carers. Several participants had gained financially through claiming benefits or a council tax reduction, and feedback from patients and carers to the case managers had generally been positive.

I mean all I’ve really been able to put in has been a few sort of like basic stuff things like welfare rights checks, benefits checks, some equipment like grab rails.

Case manager

they [patients and carers] all said the same thing to me anyway that it was nice to know somebody was there and they all kind of appreciated that although I wasn’t there 24/7 I was still a name and they could put a face to the name as well and they weren’t always expecting me to know all the answers but they knew that I would do my level best to help them find the answer to whatever that may be.

Case manager

it was such a short project I feel almost frustrated we didn’t have a bit more time to get through what I think are natural initial hurdles and actually get our teeth stuck in and make a proper go of it, so that’s just a sense of frustration.

Mentor

Although the primary focus was on the benefits for participating patients and carers, there were also benefits for the case managers and their practices:

I think it’s just flagged me up as being a member of the team who does have the special interest, does have some skills that I can bring to the practice concerning dementia care and now that’s got the ball rolling with me doing the dementia QOF and reviewing patients that way.

Case manager

Clarity over the case manager role

A key issue for case managers (and team members) concerned the lack of understanding over what case management involved and how it differed from existing services such as Admiral nursing and dementia advisors:

Well I think there’s a big question about what we mean by case management. I don’t think there’s any kind of real clarity about what the term means.

Team member

Certainly in the early stages it didn’t seem very clear at all to me what was expected or what I was supposed to be doing, or how I was supposed to go about it. And I was relying on [mentor] a lot more, I didn’t really fully understand what I was doing. But, now that I’m kind of on the road as it were, I feel, yes, a bit more confident in my own skills really.

Case manager

This lack of clarity occasionally led to case managers having misconceptions about their role. For example, one case manager carried out some ‘informal’ assessments with carers. When asked how these ‘informal’ assessments differed from the more usual assessments, the case manager explained:

I mean obviously the project is designed to work with the patient as opposed to the carer, so the informal ones have been basically where the patient hasn’t wanted to be involved.

Case manager

Even towards the end of the project, case managers still expressed confusion about their role. The situation may have been compounded by the interest/background in Admiral nursing among some members of the research team and the mentor. This led to some concepts from Admiral nursing being incorporated into the project and also to inappropriate comparisons of case managers with their own role and that of the mentor:

I mean I don’t really still understand the role of a case manager anyway I don’t feel, I feel like I’m still learning because I’m not a case manager, I feel like I’m probably just giving people advice, I don’t see it as case managing as such, not like [mentor] does.

Case manager

In contrast to the other case managers, the practice nurse with previous experience of case management felt that there was ‘clear guidance’ about her role.

Implementing case management in practice

A range of issues concerning the practical implementation of case management was highlighted, including time constraints for case management, the timing of the intervention and identification of needs. Issues relating to the documentation of case management activities have been explored in Chapter 6.

Advantages and disadvantages of primary care

Views varied on whether or not primary care was the most appropriate place for case management and a range of advantages and disadvantages were identified (Box 4). Although the key task for the social worker was to become integrated and embedded into the primary care team, the challenge for the practice nurses was to have their new role recognised and to be given the time to do it. The importance of support from the practice to enable the practice nurses to have protected time for case management was highlighted:

BOX 4

Advantages and disadvantages of case management in primary care (views of the case managers, mentor and research team members) People come to the doctor for all sorts of things . . . It’s not like having to go to see the psychiatrist (more...)

They need to be fully supported by the practice and I don’t see that happening. It seems to be a bit tokenistic to me. They need that dedicated time and everything to be in place to support them in their role.

Mentor

The potential difficulties for the social workers of integrating into the primary care team were recognised by members of the research team:

My experience of working with multidisciplinary teams is that’s it’s been really very hard for social workers to become part of the system in that way.

Team member

Embedding case management in primary care

All of the participating practices had identified a lead GP with a particular interest in dementia; however, the contact between the lead GP and case manager varied between practices. Although one lead GP held regular meetings with the case manager, in other practices contact was limited, typically to one or two meetings to discuss case management throughout the whole period of implementation:

I think people are interested but people have to have the head space to be interested and yes they know I’m doing it but it’s probably not that relevant to them on a daily [basis].

Case manager

It’s been challenging to be honest. I’m quite confused over the reaction from the surgeries. . . . I don’t know, it’s whether it’s a priority or whether it’s been lost in the mix, or people just don’t know, quite know what expectations of roles are, but they don’t seem as involved as I would desire . . . there doesn’t really seem a huge interest in it through some quarters.

Case manager

One case manager was proactive in taking on the dementia reviews and thereby created a continuing specialist role within the practice. However, there was little evidence that either of the other case managers thought strategically about their role or sought to create structures to support their activities within the practice:

I would imagine if the role became a permanent one, case managers and the GPs would have regular meetings and they would go through the lists, and discuss people, not just reliant on the QOF but a much more robust examination of who’s on the books, as it were. And you know targeting people that way.

Case manager

Although this would have been a useful way of increasing the case manager’s profile within the practice, there was no attempt to arrange any such meetings or to become involved in existing meetings within the practice that might have been relevant. The lack of involvement of other members of the primary care team became clear towards the end of the project when we asked case managers to suggest colleagues whom we could interview about their perspectives on case management:

Regarding the interviews – I’m not sure who to suggest really. I doubt if anyone here at the surgery would have any inkling of how the case management I have done will have impacted (or not) on the practice as a whole.

E-mail from case manager

Supervision and support of case managers