In addressing research question 1, we explored how leaders described their organisation’s role in supporting people with SMI. This included the experiences of mainstream community facilities as well as health and social care services, both third sector and statutory providers.
Recovery and connectedness in secondary services
The way in which an organisation approached working with people with SMI depended on its role and responsibilities in provision of specific supports for this group. We found, unsurprisingly, that secondary care providers described their role in a very different way from other organisations; there was a strong acknowledgement that the recovery approach, promoting equality and empowerment, had influenced the nature of relationships between organisations and people living with SMI in the last few years:
Over the last couple of years the recovery model also been embedded in assessments routinely carried out by mental health teams on the London site, our main agenda right now is to a recovery model of illness rather than a treatment model of mental illness.
SL114, local authority adult social care
Where recovery was emphasised, the importance of developing positive, goal-based relationships was stressed, within a person-centred biopsychosocial framework, rather than through the filters of a
diagnostic, medicalised model of treatment. There was an emphasis on aiming to‘see it through the eyes of the individual more effectively’(SSW202, NHS). An important aspect of this had been the desire to break down traditional client and organisational relationships with‘professionals on tap not on top’
(SD200, NHS). However, while aspects of this relationship dynamic may have evolved, there was also an acknowledgement that:
It is difficult, it is a fine balancing act in the power relationship, and service user is in a sense a little bit disadvantaged in that. But we are trying to engage with service users as much as we can; we want their opinion, we want the carer’s opinion.
SL117, NHS
Recovery-focused care was not easy to deliver. Recovery, when cited, was viewed as an overarching philosophy in secondary care services shaping organisation priorities, which caused some tensions between staff and service users. Interviews in both sites identified ongoing challenges in changing deep rooted organisational cultures and practices; there was still‘a cohort of practitioners who promote dependent rather than independent relationships’(SL111, NHS). There was no mention of forging interdependency within relationships between service users and the organisations there to support them.
Leadership teams in secondary care, on the whole, demonstrated awareness of the core elements of delivering recovery-focused practices, acknowledging also that more engagement was required, as people with SMI have often been left with the impression‘they were not really listened to’(SL100, NHS). The data were missing clear examples of how this could be achieved.
But I don’t think hand on heart that we could say that the level of engagement is where we would want it to be and that service users and people that use our services and their families and carers feel that they have as much influence around the direction of travel as they would like to see.
SW202, NHS
Organisations were aware staff needed training and support to change established practices. Also absent in our data was any discussion of how these tensions could be managed collaboratively. Such tensions were identified by leaders as individual organisational challenges, conveying a sense of silo working. There was an identified lack of interorganisational collaboration to address staff or service user resistance to change.
Another notable‘silence’in the data was statutory and third-sector relationships with primary care with regard to policy orientation and recovery. Our stakeholder interview with a London GP lead talked about the interface between secondary care services and primary care being patient centred in approach, but the major policy agenda of recovery was not touched on.
I guess [our role] it’s to provide services for patients that are appropriate to their needs and those that take into account both what they would like but also what is seen as being useful or right for them according to their diagnosis, so something that is seen as being evidence based, but there needs to be within that a consideration of what the patient would like as well.
SL101, NHS
In terms of social inclusion for people with SMI, primary care identified another practice void:
I know that’s been happening but I struggle to see on the ground what has actually happened. I don’t see an awful lot of change. Again it’s an area that always comes up, to do with how we do that. I haven’t seen a lot [here].
SL101, NHS
These are two illustrations of possible disconnect between mental health policy and practice on the ground from the perspective of primary care. These indications of disconnection were reinforced by the lack of use, by the interviewee, of terms associated with recovery, such as empowerment, self-determination,
Secondary mental health care providers, both NHS and third sector, were becoming more aware of the positive aspects of social networks for people with SMI, and there was an increasing acknowledgment that services should play a part in helping individuals to develop them,‘to link people into networks of support and to work with them’(SL114, local authority). A socially orientated outlook on the part of service providers was consistent with the recovery model ethos. However, there was a perception expressed in some interviews that this represented an area where people with SMI would potentially require enhanced support from organisations because of personal difficulties in sustaining personal relationships:‘what I do see has been important for a lot of people with mental health problems is maybe they’ve lost some of that, haven’t got that wider network . . .’(SSW200, NHS). One challenge for leaders of services, and thus the services themselves, was to see beyond generalised stereotypes to actively deliver person-centred services, working with people to overcome barriers and produce positive outcomes, hence reflecting the heterogeneity of the populations they were seeking to support. It was a challenge they were looking to meet to both aid the individual but also relieve pressure on services:
. . . the Assessment Service will look at social networks of people and what support we can tap into rather than us providing the support, so we do that all the time; the same with the Crisis Team: they will map the social network of somebody and use all the possible support that there is out there.
SL117, NHS
Secondary care organisations felt they had a role in helping people with SMI reflect on their own strengths as a means of building up their network of connections, either by embracing new forms of activity or by re-engaging with previous hobbies.
We encourage people to look at voluntary work quite a lot, because of the various benefits it can give you in terms of potentially doing something they enjoy that might give them skills towards future employment.
SSW212, third sector
So say you discover in assessment this person used to sing in a choir but hasn’t done so for 10 years–could they be encouraged to do it again or offered something? Encouraging people to go back to things they might have given up.
SL109, local authority
Social support and stigma: surviving in the context of change
Longstanding conceptual drivers frame the secondary care organisation vision for working with social networks: social support, social inclusion and reducing stigma are key themes currently. A strong linkage for organisations involves getting people ready for work: building confidence, building skills and using resources within networks to support employment-related activities. Encouraging people experiencing SMI to do something productive and take an active role in their own recovery has become an increased expectation on the part of service providers, and requires partnership working between stakeholder organisations. The personal benefits for people with SMI being engaged in productive activity, such as employment, were emphasised in interviews:
Well, I think that we as a service would feel strongly that what we do is about promoting well-being and a person’s sense of purpose and ability to contribute to be an active part of society and to be of value.
SL115, third sector
For some people it might be just a short-term goal in managing their time through something meaningful so it might be I’m linking them in for some walks for health or a local college course to develop their IT [information technology] skills or even something like a psycho educational course like a mind over mood course, to support their health and well-being and their wellness. For others it might be that they’re being made redundant and they’re looking at retraining, so there would be a
piece of work done around CV [curriculum vitae], confidence-building, looking at perhaps doing a strengths analysis, have a look at their developmental needs and working on an occupational plan.
SSW209, third sector
In the London site, employment advisers had recently become embedded in some mental health teams. This had proved challenging, as there was initial resistance from clinical members of staff who‘didn’t seem to understand why there were employment advisors within a mental health team’(SL115, third sector). The social aspects of supporting SMI can get overlooked in the health-care system even when these dimensions are mentioned in NICE evidence-based advice on the care of adults with psychosis and schizophrenia.39
Interviews with community leaders indicated that, outside health and social care, encouragement to engage in‘ordinary’activities was commonplace and the focus of their work. Engaging people with mainstream activities and providers has been established mental health policy for the past 10 years, built on principles of social inclusion.234The interviews captured the views of a number of mainstream community resource leaders, but they were mostly hesitant and unsure about working with people with SMI:‘we are not at a stage where serious mental health is high on our agenda’(SL103, other). However, an education programme highlighted elements of good practice that providers of mainstream adult education services can employ in order to ease the transition for people with SMI, to provide ongoing ‘confidence-building and reassurance’(SL112, other).
One of the main challenges for community-based organisations was assessment, in that assessing the capabilities of people with SMI could often be difficult. One participant remarked that people with mental illness can overpresent themselves in a positive way, and‘tell a good story’which may be at odds with what is actually suitable or sustainable for them at the time (SSW207, other). This emphasises the distance services and systems have to close in order to build trust, and better support people with mental health problems; telling a‘good story’is rarely just about illness and symptoms, but is often about trust and engagement in a system of care. In addition, people with SMI may lack‘the emotional strength or confidence’to deal with knockbacks,‘so that could be a negative if things don’t work out the way they should’(SL104, third sector). A key challenge for services was to turn negatives into positives and approach‘things that don’t work out’as opportunities to try new strategies. There appeared to be a lack of confidence within organisations in supporting people with SMI in community resources outside health and social care. This was a challenge for statutory services, who required the community to pick up support‘for free’that was previously provided by mental health services. It also represents a challenge for individuals with SMI, as some interpret community organisational resistance as part of the wider stigma problems that they face in living with mental illness.
Mental health organisations spoke about a new deal with service users and families but reflected that poor service join-up could leave individuals feeling unsupported and isolated. There was an acknowledgement that recovery work should promote positive relationships between service users and organisations, but it was also underlined that this should not entail a‘lifelong association’(SSW208, third sector). Involvement should be limited in nature:‘The role of services is to kind of come alongside and to try and interfere with people’s lives as little as possible whilst enabling them to get on with life and living’(SSW210, third sector). One lead reflected:‘we can help you help yourself and I think that has to be a message, maybe a hard one, to give’(SL111, NHS).
Organisations acknowledged that the challenges people with SMI face include public stigma and variable access to social support. Stigma impacts through structural discrimination, for example budget cuts, as well as public attitudes or self-stigma beliefs and behaviour. There were several points raised over the role of an organisation with regard to building connections. First, concerns were shared across both sites that mental health provision has been particularly vulnerable to health spending savings. The capacity of practitioners to undertake network development activities was under threat.
Well I do know that in this borough a lot of the support services for different groups have had to close because of cuts. In terms of providing to different groups, this service offers I think 16 different languages, so we need to be mindful of what is out there.
SL107, other
For my other role I guess it’s a lot to do with service changes and trying to improve services to best care for people, and often it’s having to do it with money in mind. At the moment we are trying to make a lot of cuts so it’s trying to be efficient with what you’re providing and a lot of it comes down to services being reduced but how can we make it better–so it’s difficult.
SL101, NHS
Second, the sector was also worried about other government policies impacting negatively on those with SMI, such as changes to welfare benefits including housing and the work programme. The concern was about both pressure on services and impact on individual networks.
I am quite worried that [the work programme] will push people into seeking more intensive mental health support.
SSW211, third sector
However, these pressures were also regarded as potential opportunities; libraries diversifying and providing job seekers with support was one example that we were given of this. Libraries and other council services have increasingly been mainstreaming the support that was offered to all groups of disabled people, including those with SMI.
It’s not just access to books, we are the friendly face of the council and we get people who come in who are unsure about bidding for social housing for example. They used to produce a magazine to view the properties but now it’s only online so obviously if people are coming in and having difficulties using that system we will help them with that. If people are using our terminals for council business we don’t charge them and we understand we know they might need more than half an hour. Our [name] library is partnered with Work Zone, an employment agency that do training especially in retail–they’re near the [name] Centre–and help people get jobs there and that’s open to everybody.
SL108, other
Third, the networks of people with SMI were seen as vulnerable to change in line with the introduction of assertive discharge from CMHTs, resulting in individuals increasingly being moved from the care of a consultant psychiatrist to the GP.
I think the concern I always had with that is that whenever people aren’t under the CMHT they also seem to lose track of other services . . . So there’s a little bit of a gap then, so we agree that this person doesn’t need to be under the CMHT but they probably could do with some of the extra support that they were getting.
SL101, NHS
Although organisations were clear about the value of working with users of services in a network-orientated way, in a period of service reorganisation and public finance reviews, it was unclear who would, or should, take ultimate responsibility for this care strategy. One possibility was for families to become more involved, which would require organisational change in the way families were valued and supported by mental health services. The most common theme we identified across interviews was caution because of their potential negative influence on well-being and networks.
If someone [family member] is supportive and comes along to appointments or encourages them to attend appointments, that’s huge, if someone doesn’t want to let their family know that’s a big issue in itself.
The general principle is, you know, that people coexist best within families and as long as we recognise where harm is and we manage that I can’t see, I don’t think that is an issue.
SSW202, NHS
The organisation leads’perception of family illustrated key dilemmas services and their staff face in weighing up their active role in connection-building or in encouraging that role in others.