The 18 focus groups involved 45 patients, 39 GPs, and eight practice nurses. The Townsend deprivation scores for the primary care trusts ranged from -3.35 to 6.00 and population densities per hectare from 1.25 to 36.49.
The distribution of men and women was about equal. Patients were aged between 19 and 61 (mean 38) years and health professionals between 31 and 61 (46) years. Mean duration of practice for the health professionals was 21.7 (range 7-36) years for GPs and 23 (14-34) years for practice nurses. The most common diagnoses were schizophrenia and recurrent depression, with a mean duration of illness of 8.8 (range 1-32) years. All patients had seen their GP in the past 12 months, and 38 (84%) were receiving treatment from both their GP and secondary care mental health services (). We chose quotes from the focus groups on the grounds of representativeness.
The three major and inter-related themes that are key to understanding the experience of providing and receiving primary care for people with serious mental illness were the characteristics of “good enough” primary care, access strategies, and tensions between notions of chronic disease management and recovery.
“Good enough” primary care
Most patients viewed primary care as the cornerstone of their physical and mental health care. Patients and health professionals agreed that the latter had a responsibility to continue prescribing drugs started in secondary care, monitor side effects, and tackle physical health issues. Both groups recognised, however, that it was sometimes difficult to present with or diagnose physical complaints once a mental health disorder has been diagnosed. Some GPs suggested this was related to difficulties in communicating effectively with people with serious mental illness. Most health professionals perceived the mental health care of people with serious mental illness as too specialised for routine primary care and felt they lacked sufficient skills and knowledge (box 1).
All participants felt that interpersonal and longitudinal continuity was vital for good quality care. However, most health professionals felt continuity was threatened by the national emphasis on achieving access targets and the advent of GPs with a special clinical interest in mental illness.18
Patients felt that continuity aided accurate diagnosis, particularly at times of mental health crisis; prevented the retelling of painful stories; enabled trust to develop that in turn facilitated discussions of treatment options; and, above all, allowed patients and health professionals to understand each other as people. Most patients favoured seeing the same GP for their physical and mental health needs, preferring a continuous doctor-patient relationship and a positive attitude and willingness to learn, rather than the opportunity to consult a different GP with special expertise in mental health. Most patients knew that their GP had little formal training in mental health and did not expect expert advice from primary care professionals. A GP who knew them, listened, and could access help for mental health problems when required was seen by almost all patients as sufficient.
Box 1: Aspects of “good enough” primary care
“I know that I cannot look after people with severe and enduring mental health problems. I do not have the skills or the knowledge. I couldn't do it well” (GP 1: female, Coventry)
“We were seeing this woman very regularly, and she was known to have some depression, and she presented with bowel symptoms. And when we looked back through her notes, after she died from bowel cancer, we saw we'd offered to arrange scans and investigations but none of us pushed her like we might have done if we hadn't had that depression thing there” (GP 2: female, Birmingham)
“Well, I think you're probably right in saying that, to be honest. Because, you can, and I'm including myself in this bracket, can have a tendency to become blinkered, so we fail sometimes to realise that depressed people can also get cancers, can get this and that, and in fact probably are more likely to get certain conditions than others” (GP 3: male, Birmingham)
“Continuity is so important” (GP 4: female, Worcester)
“You save so much time if you don't have to go over old ground all over again. So everything is smooth for everybody” (Practice nurse: female, Worcester)
“But it's being ignored in the NHS Plan. It's standards, standards of care, and it doesn't matter who you see” (GP 5: male, Worcester)
“You've got a familiar face who knows your story and you don't have to start from the beginning again. She's seen me deteriorate and come back again. I feel very safe in her hands” (Patient 1: female, Cannock)
“I mean, the GP has to have some understanding of mental health but I don't expect a GP to you know, know all of the issues to do with my illness. I would though expect him or her to refer me to a specialist person. The important thing is that somebody is looking after you so it's not just you on your own” (Patient 2: female, Birmingham)
“But what I want is for him to just tell me `Yes, Mrs F, I understand, what depression is, you know, and if you book up maybe next week, and we'll talk about it' and you'd feel that would calm down because you'd feel at least somebody was... wanted to listen to your madness. Do you know what I mean?” (Patient 3: female, Birmingham)
“Health professionals, because they are professionals, feel that they should know. But it's great if they are willing to say `I don't have the answers and I don't know, and I'm willing to kind of learn from you and find out for you'—but that isn't always the case” (Patient 4: male, Worcester)
Anticipating and negotiating access
Health professionals concentrated on the difficulties of accessing secondary care, particularly in an emergency, and the frequency of non-attendance among patients with serious mental illness. They saw few problems in terms of patient access to primary care. However, patients focused almost entirely on strategies for negotiating access and the meaning and implications of not attending appointments in primary care (box 2).
Swift access to primary care was important for patients because of the sudden onset of some mental health crises. Barriers to access included the effects of the illness itself—a lack of confidence and assertiveness, for example, made the appointment system harder to negotiate when they were depressed. Patients with diagnoses of schizophrenia and bipolar disorder described the need to seem “rational” at the reception desk but if they appeared too “together,” the receptionist might not believe they needed to be seen urgently. Patients perceived a minority of receptionists and GPs as giving priority to physical illness over less visible mental health problems. Noisy or crowded waiting areas were described as difficult to negotiate when patients were anxious or had symptoms of psychosis.
Patients said it was sometimes easier to get an appointment if they asked an “advocate with clout”—such as a vicar or friend who had authority in the eyes of the medical establishment—to make the appointment and accompany them to the surgery. Access was also described as less stressful for patients who were well known at the surgery. Three patient groups discussed “acting up” to help them get an urgent appointment, whereby they felt they had to exaggerate symptoms to get an appointment. All patients were distressed by having to act up but felt that if they did not, they would not get an appointment and their condition would deteriorate further, possibly resulting in an urgent admission.
Most GPs described how changing structures such as new teams in secondary mental health care made negotiating access on their patient's behalf in a crisis stressful and time consuming. The notion of acting up was mirrored by one group of health professionals, who discussed the methods they had used to overcome secondary care barriers and admit patients who were unwell but not yet quite at crisis point; these methods included exaggerating the severity of the presenting symptoms to the admitting psychiatrist.
Box 2: Anticipating and negotiating access
“Don't just tell me OK, that you've got to wait because other people are dying. That's the thing about physical illness. It's seen as more important...I mean they can relate to a broken leg whereas they can't relate to severe anxiety” (Patient 5: male, Coventry)
“The focus is on risk assessment. But why do you have to be in crisis before you get help? You need to kick up a stink” (Patient 6: male, Worcester)
Agreement from others
“It's traumatic, the efforts needed to get help. No one wins. I feel bad having to do this, to sometimes have to exaggerate the distress I'm in, but I have to, to get the help I need” (Patient 6: male, Worcester)
“If I don't turn up I wish the GP would simply ask why” (Patient 7: male, Birmingham)
“I wish he'd chase it up” (Patient 8: female, Birmingham)
“Because sometimes I can't even get to the appointment because I'm that bad” (Patient 3: female, Birmingham)
“If someone had come and visited us when I was bad, that would have nipped it in the bud” (Patient 7: male, Birmingham)
“Well, some people don't come when they're well and some don't come when they're sick, and to be honest it's a bit of a relief because I can catch up on being late” (GP 4: female, Worcester)
“I would like to think that when I phoned up and spoke to the receptionist I wouldn't do it unless I felt really desperate. I wouldn't waste your time or the nurse time or the receptionist time if I said to them `this is an emergency'” (Patient 8: female, Solihull)
“You have responsibilities between each other. You make sure `look I really am ill this time, I'm not going to abuse the system'” (GP 6: male, Solihull)
“Well that's right. I wouldn't do that” (Patient 8: female, Solihull)
“Well you personally wouldn't do that, but many of them do” (GP 7: male, Solihull)
“They are notoriously bad at keeping appointments or turning up you know, so if you say you want to see them on a regular basis they probably won't keep the appointment and they'll turn up when you're not there” (GP 8: female, Birmingham)
The meaning ascribed to non-attendance at appointments was a key issue for all participants. Patients said that non-attendance was often a consequence of a worsening of their illness or an impending crisis. Occasionally it was because of barriers to access in the primary care system—for example, difficulties in making an appointment compounded by the prospect of waiting in a noisy reception area when unwell. Some patients described arriving at the surgery for an appointment but finding conditions in the waiting room unbearable, leading them to leave the surgery before seeing the health professional.
Patients' explanations for non-attendance were rarely recognised by the GPs. Non-attendance in primary care was described by most GPs as symbolic of patients' irrational behaviour and chaotic lifestyles, offering a welcome opportunity to “catch up.”
Management of chronic disease versus recovery
Structured reviews of care—for example, an annual check-up based on a register of patients with serious mental illness—were seen by both patients and health professionals as a positive concept (box 3). Health professionals felt that reviews offered an opportunity to “bench mark” people when well, review and change medication, and identify patients “lost” in the system. Registers were particularly seen as a mechanism for enabling access for “at risk” patients—in a similar way to registers for people with brittle asthma or chest pain. Patients also felt that structured reviews could facilitate access, might provide an opportunity for mutual education about the illness, and showed care and concern. However, for patients, the discussion of the value of structured care focused more on the underlying attitudes of professionals than on the content of the review.
All but one health professional saw psychosis and recurrent depression as chronic lifelong conditions; many analogies were made to nurse led care of people with chronic physical conditions, such as coronary heart disease and diabetes. Health professionals talked of stabilising and managing patients, and the only example of recovery was in the context of moving on to behaviour therapy as well as medication. In contrast, no patient used the word “chronic” to describe their illness. Most were keen instead to talk about the elements of care that encouraged recovery and the need for health professionals to understand the importance of the concept in structured reviews and other consultations. Recovery and indeed hope for recovery could be encouraged by particular professional attitudes, including enabling patient choice in treatments, offering talking and alternative therapies as well as medication, and discussing future educational and work opportunities. Recovery could also be encouraged through non-medical means, including support from other family, friends, and other patients. A minority of patients were also keen to highlight the importance of taking responsibility for their own problems and recovery and of having realistic expectations of both the health professionals and the medical treatments available.