The results converged under two overarching themes: (1) Minding the treatment gap: the availability and accessibility of MHS. The gap is composed of different elements that constitute barriers to care, including bridging divides in care provision, obstacles in facilitating access via referrals and creating a collaborative ‘chain of care’, (2) Making therapeutic practice relevant by providing a broad-spectrum of integrated and comprehensive services that value person-centered care comprised of authenticity, flexibility and congruence. Figure 1 summarizes the overarching themes and the subthemes resulting from the data analysis. The discussion below focuses on these thematic clusters.
Minding the treatment gap: availability and accessibility of mental health services
Bridging divides in care provision
The HPs in the six countries highlighted the discrepancy that exists between the ever-growing numbers of people needing MHC and those obtaining access and receiving care, as well as the importance of minding this gap. According to the HPs, there are several barriers and obstacles to the availability and accessibility of MHC. In Norway, access to MHC is described as a process of accessing a “castle surrounded by a moat”. This metaphor is fitting for all of the MentALLY countries with variations as to the determinants of this gap. In Cyprus, Health Services (HS) have undergone a severe economic crisis to the detriment of quality and equitable accessibility to MHS. In Greece, a long process of de-institutionalization and expansion of community services is still in progress. Hence, publicly funded services are available (mostly for severe psychiatric problems) but not always accessible due to understaffing (especially psychologists) and funding problems. In the Netherlands, there are capacity problems for those with chronic conditions as well as crisis care. The HPs in the Netherlands attribute these barriers to a focus on primary care service provision alongside a shrinking secondary care sector. Both in Belgium and Sweden, HPs stress that people seeking MHS do not get the necessary help when they need it due to waiting lists. Inadequate funding and staffing shortages are considered common barriers to providing quality services in all of the countries. In addition, social stigma continues to be a barrier. The following excerpts are indicative of the perspectives expressed in the focus groups regarding the provision of readily accessible MHC.
“I think the specialist health service has grown to be something like a large fortress with a big moat around it, and you need to work pretty hard to gain access, but as soon as you are in there, a lot is happening and then you are back out again. There are some artificial distinctions in this, and I have to admit, that as a psychologist I think that all outpatient clinic services should take place in primary healthcare and that people could just show up there.” (HP, Norway)
The mhcGAP is also comprised of barriers in how services are organized. The HPs recommended integrating primary care and specialized outpatient services in order to optimize care provision and to fortify collaborative practices. According to the HPs, fragmented services and the internal organization of HS lead to difficulties in care provision and in service-users’ and HPs’ satisfaction.
“The different (MHC) institutions are too isolated and ask a bit too much either of this or that. Then there is the problem with the organization of the health services. The structuring, coordination and patient flow…There are too many areas where we fall short.” (HP, Norway)
In Greece, accessibility is also hampered by geographical barriers, impediments in developing comprehensive services, and the reimbursement of psychotherapeutic treatment. The excerpt below details ways to span such gaps.
“Accessibility is vital. Also, when we say accessibility, we do not mean just how easy it is for someone to come to us, but also for us to go and find them where they are…to follow-up. There are a variety of services that should be available in ‘good mental health services.’ Accessibility also means…to have continuity in therapy, people who act as a point of reference need to be consistently available and service-users should not change providers all the time.” (Psychiatrist, Greece)
In all six MentALLY countries, there was an emphasis on the growing inequality fueled by accessibility barriers, long waiting lists and a lack of readily accessible specialized care. These impediments were enumerated and analyzed in all of the focus group discussions and are in line with a lack in availability of comprehensive treatment, especially in rural areas of Greece, Norway and Cyprus. In Sweden, Belgium, Norway and the Netherlands, MHS are partially integrated into primary care as a means of narrowing the treatment gap. Nevertheless, barriers with referrals and follow-up services persist as elements that present difficulties in providing ‘optimal’ or even ‘sufficient’ care.
HPs in Belgium described the ‘unfairness’ and ‘inequity’ of the mental healthcare systems they serve. The systems are ‘unjust’ because some people do not receive care at all (e.g., due to a lack of affordable or publicly funded services), others do not receive the right kind of care (e.g., medication instead of psychotherapy or primary care as opposed to specialized care) and others receive care but have to endure long waiting times. The excerpt below is a vivid description of the difficulties in accessibility for service-users who seek and need immediate help.
“I have never heard a surgeon say ‘oh they have appendicitis. Well, I don’t have time for that so, they can wait’. With crisis care, I kind of get that sense. You have to visit them and give several arguments for the patient’s case… These patients need help, quick. There shouldn’t be any waiting lists for these kinds of patients…the severely suicidal patients that need immediate help but can’t find the help.” (General Practitioner, the Netherlands)
The participants emphasized the divide between physical and mental healthcare and the wider gap in availability and accessibility for mental healthcare in different ways. They described how social stigma and self-stigma contribute to the gap. For example, in Cyprus, participants discussed at length how the prevalence of mental health stigma in the Cypriot society impacts peoples’ decision-making regarding seeking MHC. As the HPs from Cyprus stated people seeking MHC prefer to travel long distances to visit a facility where they do not want the risk of being seen by people they know and this is not the same for physical healthcare. HPs expressed apprehension regarding stigmatization and discussed ways to confront it, as described in the excerpt below.
“In the hospitals, there should be many psychiatric beds which should not be isolated from the rest of the hospital as this leads to the stigmatization of the mental health patients…What brings us better accessibility is de-stigmatization, and I believe that this is an area where the state should fund programs for the de-stigmatization of mental disorders.” (Psychiatrist, Cyprus)
HPs from Sweden explained that the system of care in their country is based on a scoring system that takes into account the number of service-users and diagnoses, with less compensation allotted to those confronting mental health problems.
“You can’t run healthcare like you can run a business. Because business is completely different, and care has to cost money…The patients whom you get paid least for are those with mental illnesses, so they are hit the hardest because you can’t spend the need with them” (HP, Sweden).
The HPs in all the focus groups were mindful and concerned about these obstacles in accessing care. The idea of an “easily accessible first line psychologist” (Belgium) who can immediately assess needs and who can refer patients to appropriate and immediate help was a focus of the discussion in all the MentALLY countries.
Facilitating access: referrals and ‘movement’ to and through the ‘chain’ of care
The HPs that took part in the study accentuated the need to establish and reinforce primary care (PC) with services that are organized to facilitate access. They underlined the importance of PC in referral processes and the need for well-outlined guidelines for referral practices in order to foster timely and high-quality mental healthcare. There appear to be gray areas in how referrals can best be handled, and HPs are often hard-pressed to draw the line regarding the scope of their practice in managing service-users’ concerns versus making a referral. Moreover, “referrals are often lost between different services” (e.g., primary care and specialized care in Sweden). HPs have difficulty “in identifying mental health providers and the available services” in some of the MentALLY countries (HP, Belgium).
In Sweden, referral processes were dubbed ‘risky for patients’ and referring patients to psychiatric care was described as a complicated and time-consuming challenge. They described that patients waiting to be referred to psychiatric care suffered greatly. The participants in the focus group shared their experiences:
“The referrals to MHC are often returned. And then I write a new referral, and another referral and they are seriously ill. Referrals become a game between primary and psychiatric care to the detriment of the patients.” (HP, Sweden)
The HPs noted that facilitators in MHS provision include having a broad spectrum of services that operate as “a chain of care” on the basis of “blind trust” (Belgium) between providers, service-users and the wider service system. Yet, establishing such a chain is not always possible, especially where primary care is in a neophyte stage of development (Greece, Cyprus). In Norway, on the other hand, referrals and “the movement of patients” between different branches of mental healthcare were described as “halted by heavy bureaucratic processes”. Difficulties in referral between the diverse forms of care were also mentioned (Sweden and the Netherlands).
“I do not always get a response on the referrals I send, so I do not know whether these people receive an offer or whether they are now in nowhere land. This makes me a bit uncertain about referrals, and it might raise the threshold for referring. But I always try to refer of course, as I do not want to rob them of any rights, but it is challenging.”(HP, Norway)
The HPs in this study agreed that referrals are a core component in the delivery of mental healthcare. Yet, missing replies on referrals, unanswered e-mails, or difficulties in reaching colleagues providing specialized services were frustrations mentioned by HPs in Sweden, the Netherlands, Belgium and Norway. In Greece and Cyprus, the “absence of a referral culture” was discussed at length. Cognizant of the mhcGAP the participants, noted that appropriate referrals require the establishment of open communication channels, partnerships in care provision, matching service-users to appropriate services, and helping service-users to accept, engage, and benefit from services.
The HPs pointed out that the health systems they serve are under a great deal of strain due to a confluence of factors including the high demand for services, staff shortages, and communication difficulties between HPs as well as with service-users. These factors vary in the different six countries, still, they hinder MHS provision because referral, communication and collaboration processes falter between the different sections of the pyramid of care, impacting services users’ “movement” in the systems of care.
Collaborative care: integrating activities and knowledge via partnerships of shared perspective and responsibility
The countries involved in the MentALLY project provide a broad spectrum of MH services, including MH promotion, prevention, early identification of MH concerns, referrals for specialized treatment and different forms of therapy in public and private settings. Nevertheless, HPs emphasized the “fragmentation of existing forms of care” (Belgium, Norway) and the “parallel and conflicting operation of different forms of care” (i.e., between primary care and specialized care in Sweden).
In the Netherlands, participants stated that “MHC is influenced by private market-mechanisms” (insurance companies who only reimburse specific forms of treatment). Due to this, healthcare providers “pick the ‘easy’ people to treat”, and as a consequence, people with more complex problems needing specialized and long-term care are oftentimes left untreated.
“The private institutes cherry-pick their patients. Like, oh that patient is good, because I can do short DBCs (diagnosis-treatment-circuits) and have good results. I’ll take those. I hear from several general practitioners that certain patients are denied care by certain larger institutes. The caregivers refer and the institutes say, ‘No, we won’t take this patient’.” (Psychiatrist, the Netherlands)
Collaborative relationships between primary care physicians and MHC providers require extensive effort and work. In Greece, Cyprus, Belgium and the Netherlands, HPs proposed linking prevention and treatment within an integrated framework in order to provide adequate and comprehensive care. Diverse approaches to the “prevention and the promotion of mental health”, including the “psychoeducation of the general public” on mental health problems at the primary level were discussed. There is often a lack of availability for secondary prevention, additional treatment or wrap-around services designed to strengthen the therapeutic gains for individuals who did not fully benefit from the standard program or whose recovery seems fragile. Continuity in care, which encompasses an array of strategies used in an ongoing way over extended periods to support those individuals diagnosed with persistent, long-term conditions, is considered essential and a means of optimizing MHS. The different levels of service provision and the integration of services in a pyramid-like structure are described in the excerpt below.
“This is what I am thinking; prevention, treatment, stabilization, psycho-education, de-stigmatization, and in general, the improvement of the quality of life of the recipients of mental health services.” (Psychologist, discussing ideal MHC, Greece)
There was widespread agreement among the HPs in the six countries that integrating services in order to deliver better outcomes for beneficiaries entails different levels and types of collaboration. Collaboration between primary and specialized care, inter-sectoral collaboration with other organizations or institutions in order to work on MH related policies, and collaboration with service-users were discussed in all the focus groups. Nevertheless, the collaboration between different services such as public and private services is difficult in some countries (Cyprus and Greece) due to legislative obstacles. HPs stated that collaboration between primary healthcare and specialized healthcare enhances treatment outcomes but is not always feasible (Sweden, Norway). Participants, therefore, made compelling arguments for effective teamwork fostered through collaboration and networking processes aimed at achieving a service user-centered based approach to service provision. Participants in Belgium described obstacles to collaboration as follows:
“You know that some doctors you can call and that you are always welcome, other doctors find it disturbing… I’m talking about doctors now…yes, with other people you have to e-mail or some prefer a letter or… that alone, the communication has struggles, and I experience it as a real problem.” (Psychologist, Belgium)
HPs talked about collaboration with service-users and applying user-generated knowledge in service delivery (co-production) as something that is important but not always feasible. Co-production implies the forging of positive relationships between service-users and HPs and partnerships in care provision, including carers and family members, by giving people who seek services a role and a say in their care. HPs from Sweden emphasized collaboration and shared decision-making with people in treatment as essential components of their work and described how inter-professional care requires teamwork.
It is extremely important to plan treatment primarily in consultation with the patient. Teamwork is critical for this.” (HP, Sweden)
According to the HPs, co-production enforces people’s capabilities by offering people a range of incentives to work in reciprocal relationships with professionals and with each other. If service-users engage with peers, there is a blurring of distinctions, allowing for the reduction of stigma. Service-users’ agency and connection to the community are also facilitated.
Participants in Belgium discussed the ideal society where people cooperate with each other and try to understand each other, stating that MHC should be moving, “towards a community of caring for each other.” (HP, Belgium)
Participants also discussed practices that create barriers with service-users. HPs in Greece, Cyprus, and Sweden talked about involuntary commitment and its detrimental impact on service-users and HPs’ relationships.
“People may leave the hospital thinking: ‘I have received compulsory therapy, I am ok now, and I am leaving, and I do not want to see any MH professional in my life!’ Thus, the patient is lost to the system.” (Psychiatric Nurse, Cyprus)
Relationships between HPs and teamwork were also discussed. Difficulties in collaboration included “conflicts”(Cyprus) and “mistrust” (Belgium and Greece) between HPs. Participants suggested that adequate coordination and meaningful communication between HPs, service-users and consultants in a referral system maximizes MHC’s efficiency and effectiveness.
In addition, HPs explained that collaboration entails practitioners’ “knowing their limitations and the boundaries of their competencies” and holding an ethical stance by not engaging in practice beyond these limitations and boundaries. This was mentioned in the focus groups in the Netherlands, Cyprus, and Greece.
“As a psychologist/psychiatrist, as every caregiver, you should be able to say, I can or cannot do this. And say to the patient, I am going to send you to a specialist and you are going to be treated by them. The first step to do this is being able to say; I do not treat this, it isn’t my expertise. This needs a different mindset.” (Psychiatrist, the Netherlands)
According to the discussions in all the focus groups, service-users benefit from respectful listening, responsiveness to their expressed needs, and in taking part in decision-making regarding their lives. Overall, HPs recognized that collaborative practices address the problems relating to gaps in services, and can lead to a streamlining of services as well as to improving service-users’ choices and making their voices heard. Likewise, they are hopeful that the systemic incorporation of new information technology in healthcare systems will further improve the communication network among HPs towards achieving the best quality of care.
Making therapeutic practice relevant by providing a broad-spectrum of integrated, comprehensive, and person-focused care
HPs in all countries involved in the MentALLY project proposed comprehensive models of care where service-users have a say in their treatment, receive the requisite support and can access services that are organized, equitable, and tailored to users’ needs.
According to a recent joint OECD/European Commission report, substantial efforts are required to prevent mental health problems and to establish an effective and efficient early diagnosis and intervention paradigms [20]. Despite the differences that exist in health and mental health service delivery models across the MentALLY countries, such efforts are required in all of the countries. Assessment, early identification and diagnosis issues figured prominently as barriers to ‘appropriate’ service delivery in the focus group discussions.
Complications and dilemmas in assessment and diagnosis: required, needed and overbearing
The MH professionals who participated in the focus groups expressed concern that they “often have to work beyond their professional competencies in diagnostic procedures” (Belgium, Greece, Cyprus) or they “lack the tools required to provide the best care” (lack of standardized assessment tools in Cyprus or evidence-based protocols for diagnosis in Greece). HPs in Greece stated that a lack of “state support in continuing training and education” (Cyprus), of European-wide licensing, credentialing, privileging and accreditation procedures create diagnostic issues, treatment problems and ethical dilemmas. In Sweden and Norway on the other hand, professionals presented different reasons to the complications in the early identification and diagnosis of people’s mental health needs, namely, the “chase for a diagnosis” and “working in predetermined and inflexible frameworks” where only one specific model of care can be provided.
In Sweden, where service delivery is based on a system of integrated care, that is, services are provided on a team-based approach, diagnostic and coordination complications and obstacles were discussed.
“And then I think…while we are talking about primary care, there is a huge fear…in primary care…general practitioners…of psychiatry. There is an awful lot of misdiagnosis there…you could say that there is a real state of chaos that needs to be cleared up. There is a need for training, so that there is accuracy in diagnosis and that diagnosis leads to suitable referrals.” (HP, Sweden)
Diagnosis obstacles were discussed in all the focus groups with differing foci. In Cyprus, assessment and diagnosis dilemmas are encountered in secondary care.
“It is usually based on our subjective evaluation as to whether the outcomes we get are good or bad.” (Psychologist, Cyprus)
Co-occurring acute and chronic health problems and the complex nature of mental health problems, where several life domains are implicated, create further trepidation regarding diagnosis. In Belgium, this complexity was discussed as a barrier to efficient diagnosis, referral and treatment-procedures because services can be over-specialized to the detriment of implementing more holistic and person-centered approaches.
“Specialized care is where my concern is especially. I work in that setting that has become too specialized, by which you create exclusions because they focus too much on ‘no, we only work on those problems.’ Yes, people are complex creatures, mostly it is not an isolated problem.” (HP, Belgium)
Participants working in primary care in Sweden described that they felt “trapped” in the financial compensation system they have to implement, which leads to “a chase of diagnoses”. They dubbed this required labeling as “devastating” because it can be overbearing for people and their lives.
“There is a huge concern that I am experiencing … in our obsession with diagnosis codes…so I eschew using unspecified mental disorder. Because I think that there are people in a crisis in their lives. For some people, becoming an adult involves a lot of anxiety, but if I were to categorize it and, even worse, send them to mental health care, they could get a personality disorder diagnosis, and perhaps they fulfill the criteria, but is it any use to them…And so I don’t see the benefit in getting a diagnosis. Meanwhile, I must bear in mind that in order to be reimbursed, a diagnosis is necessary. Which I think is totally absurd. It is devastating… so you are forced to write a diagnosis.” (HP, Sweden)
Thus, the widely held, and often enshrined in numerous policy and practice documents, belief that diagnosis is an indispensable first step to care provision is being questioned with regard to its benefits for service-users.
The value of person-centered care: authenticity, flexibility and congruence
According to all of the focus group discussions with the HPs who took part in this study, person-centered care is the optimal and most beneficial approach to delivering MHS. In Norway, participants described the “flexibility of choosing an appropriate treatment for each patient” as an essential aspect of their job which, in turn, facilitates their ability to deliver quality services. In Sweden, participants explained that continuity in care is of utmost importance for service-users diagnosed with psychosis. Therefore, a model for continuity in care was incorporated into the treatment plan for such cases.
“For example, our clinic… psychosis psychiatry…there are people who are responsible for each patient …there are people who organize the care and collaboration around the patients. And that works well, and in some clinics, it works… very well.” (HP, Sweden)
The participants agreed on the importance of being able to adapt services to the needs of the service-users as opposed to having to deliver a standardized package to every person seeking help.They described the flexibility of choosing a suitable treatment which is of appropriate length for each service user as a fundamental aspect in the provision of optimal care and also their sense of efficacy.
“I am very happy that I have a framework that allows me to be more flexible for those patients, it is not very fixed with strict instructions on what to deliver and when to finish treatment, and this makes it work well……I often think that what helps me in meeting people in the best possible way is that I have a certain space for autonomy within the framework.…I can allow myself to do those things without someone looking over my shoulder’. I also believe it makes you feel more connected to the work you are doing, that again you make sure you do not go out of your mandate too often either.” (HP, Norway)
In Sweden, on the other hand, there was talk of ‘reclaiming professional competence’ in that the participants felt that despite their competence and license to practice, the ‘management of primary care’ did not allow them to make clinical decisions based on evidence or best practice guidelines. They described how the management of primary healthcare was organized according to “New Public Management, based on performance and financial values” and noted that these arrangements were not compatible with the provision of optimal MHC.
“We can sit and talk about a lot of things, but we can’t do anything about this control, we are not allowed to decide ourselves…” (HP, Sweden)
In Sweden and the Netherlands, the HPs described that due to the management and compensation systems that are in place, they could not offer patients individualized treatment which they considered optimal. The focus group participants championed comprehensive services that include the holistic understanding of peoples’ lives as well as continuity in care.
Another aspect of optimal care was described by HPs in all the focus groups as ‘being authentically there’ and developing a positive and unique long-term relationship or ‘bond’ with the service-users. HPs also emphasized that person-centered care should not be hindered by administrative constraints.MHC can only be adequate when care providers treat people not as objects (diagnoses or parts of their problem) but as people with dignity.
“I think it is an added value, that you can leave all that labelling behind and just go into a conversation with that person and move on with his question…” (Social Worker, Belgium)
According to the participants, tailoring psychological treatments to the service-users’ specific needs compliments authenticity and leads to congruence. Relationship-building is considered crucial in care provision. Nonetheless, it takes time and is difficult to accomplish in the high ‘patient flow’ rates in MHC provision, especially primary care.
“‘Quality of contact’, in the first place, I think that is the best way to gain trust because you cannot enforce trust. You can’t say ‘trust me, I will find the way for you and I will treat you or refer you’. You have to earn it gradually with little continuous steps.” (General practitioner, Belgium).
According to the HPs, therapy and care practices have to be relevant to people’s everyday lives and collaboration at different levels is crucial in achieving this. Participants stressed how positive collaborative relationships are indispensable when HPs want to fit care practices to the uniqueness of each person’s circumstances, to bolster relationship building and to enhance therapeutic outcomes. Nonetheless, this type of care involves HPs from different disciplines and service units working together to offer integrated services, ensuring that service-users receive appropriate and timely help. The participants maintained that holding all involved parties accountable is challenging. Barriers in collaboration ensue because of the lack of supportive organizational structures, guidelines, and communication that focuses on people’s distress and not on diagnostic nomenclature.