Occupation is fundamental to everyday life (Krupa et al. 2009) and is a pre-requisite for recovery, survival and addressing long-term issues (Kelly et al. 2010). Therefore, maximizing the accessibility of occupational therapy is an important part of professional practice. This requires careful thought about what obstructs or enables people’s access to, and use of, services.

Access is often considered in terms of physical environment issues, for example services being located far from where people live, but social and occupational perspectives on mental health offer a broader view. The social model of disability, for example, highlights attitudes as a primary barrier and cause of disability (French and Swain 2008; Oliver and Barnes 2012; Tew 2005). Similarly, from an occupational perspective, access to activities to promote health and wellbeing requires awareness of not only what people seek to do, but who they are and what they hope to achieve (Tew 2005; Wilcock 2006). How can a person’s hopes be supported or constrained within a programme or service? To understand barriers and facilitators, therefore, it is necessary to listen to the experiences of people who have delivered and received occupational therapy services.

This chapter is co-written by two people who have used mental health services (ALD, RS) and an occupational therapist (WB). Direct experience of occupational therapy as a mental health service user is an important source of information, knowledge and understanding for practitioners. All three authors have been involved in research into the experiences of service users receiving occupational therapy. They have drawn on this, as well as on their own and other service users’ stories as illustrations for this chapter. These stories indicate the shared and individual aspects of their experiences as authors. They offer critical reflection on occupational therapy, drawing on a social perspective and highlighting the importance of the social environment in which therapy takes place.

Initially, the authors consider the barriers to accessing occupational therapy; examining who has access to occupational therapy services and who is excluded, and why this happens in different settings. The experience of occupational therapy, from service user perspectives, is explored in relation to its meaningfulness. Recovery is considered, along with the realities of survival and the dangers of promoting activity for its own sake. The value of occupation has been appreciated widely, beyond occupational therapy services, and the relationship between occupational therapy and other occupation-focused services is considered. The significance of carers and care-giving is also discussed. Finally, collaborative work exploring the service user’s experience of occupational therapy is highlighted as being important in overcoming the barriers and enabling engagement in occupational therapy.

ACCESSING OCCUPATIONAL THERAPY: A SOCIAL PERSPECTIVE

From a service user perspective, to access occupational therapy, the individual needs to know that it exists. Information should be available in different formats, and include details of what is provided. However, even when a person knows that occupational therapy is available and could be beneficial, other factors may prevent access. From a social perspective, there are many barriers to accessing and using mental health services. Tew (2005) suggests there are three elements to developing a social perspective on mental health:

1. Recognizing a continuum of mental distress, resisting a rigid distinction between what is considered normal and what is not

2. Engaging in an honest way with complex and complicated experiences, resisting pressures to focus on just one aspect, such as anger

3. Listening carefully to what people say about their experiences and respecting the meanings they attach to those experiences.

The first element suggests that if eligibility for occupational therapy is restricted to those with particular symptoms or behaviours, others will be denied access. One service user, in a study of occupational therapy in an acute admissions unit, felt excluded when they were told occupational therapy was targeted exclusively to skill acquisition rather than meaningful occupation:

They said it was for people who need to learn and they said … I didn’t need to be here, there, doing it, which I thought was a bit unfair.

(Bryant et al. 2011a)

The third element indicates the importance of understanding the different reasons which service users might have, for wanting to engage in particular occupations. Exploration of these personal meanings extends beyond discussing needs and aspirations. It includes the meanings that arise through participation in occupational therapy.

Organizational Barriers to Occupational Therapy

Organizations are required to define the referral criteria for their services so resources can be targeted efficiently and effectively. This process can impact on therapists’ choices about provision, and hence the choice offered to service users. Adopting narrowly defined outcomes in this ‘defining and targeting’ process can exclude people who are more challenging to engage, where positive outcomes will require more time and resources.

People’s access difficulties can be understood from different perspectives, including psychological, occupational and social perspectives. For example, a psychological perspective might understand resistance to occupational engagement in terms of a person’s motivation or volition (Creek 2010) (although an individual may have genuine reasons for not wanting to engage in an occupation – such as cultural, ethical or practical reasons), whereas an occupational perspective collaboratively identifies meaningful and purposeful activities, tasks and skills (Craik et al. 2010). Both these perspectives focus on why individuals and groups engage (or do not engage) with occupations. They are enhanced by a social perspective on mental health, which emphasizes how the social environment can restrict or facilitate participation (Tew 2005). For example, collaboratively identifying meaningful and purposeful activities requires effective communication between people, which is a social process (Tew 2005).

Positive Risk Management

From a medicalized healthcare perspective, everyday practice decisions are often based on diagnostic categories and assessed levels of risk or disruption to everyday life, perhaps linked also to service users’ status under legislation such as the UK Mental Health Act (1983, 2007). The restrictions which this legislation places on people impacts on all aspects of their lives.

Organizational structures can facilitate access even if a service user is in crisis if the service is able to deal with risk in a rational but creative way. For example, close observation and monitoring, which might otherwise be intrusive, could be appropriate and offer the person who is suicidal a social structure to support them. Similarly, the capacity of organizations to manage reasonable risk is a crucial factor in service users’ recovery (Langan 2010). Being risk averse undermines opportunities for service users, whether in groups or individually, to explore, develop and take control of their own recovery. Positive risk management is underpinned by a social perspective on mental health (Ramon 2005) and an awareness of human rights (Dimond 2010); emphasizing that people should be treated equally and fairly as an equal member of society (UN 2006).

Inpatient and day hospital settings have intrinsic access constraints due to the sheer number of people moving around buildings. The everyday logistics and procedures which keep a service functioning often reflect organizational priorities over and above individual needs (Rogers and Pilgrim 2003). For example, the passes and keys issued to staff on closed wards not only restrict everyone’s movements, but they also reinforce the feeling of unnaturalness of the situation and of relationships, especially for service users. In general, the unequal power relationship between staff and service users impacts negatively on the service user’s overall experience.

From a service user perspective, occupational therapy is often limited to working hours, during the week, with little or no service provision at weekends and evenings (Notley et al. 2012). At those times, access to other hospital resources, such as kitchens and art rooms, may also be denied; limiting the opportunities for service users to progress with their occupations and start to translate the skills acquired in therapy to less supervised, more real-world settings (Townsend 1996). Le Granse et al. (2006) found the following example from a study of occupational therapy in the Netherlands, Belgium and Germany:

The occupational therapist encourages the client to make his own cup of coffee.

On the ward, however, he is not allowed to do that himself.

The client wants to go to the cinema, but he can’t because the night nurse locks the doors around 22.00 hours.

(Le Granse et al. 2006, p. 151)

Access to Community Occupational Therapy

In community settings, from a service user perspective, access to occupational therapy may depend on the availability of transport, and on being able to meet transport costs. This introduces a paradox, whereby low attendance (for these logistical reasons) may even lead to much needed services being scrapped on the basis that they are not financially viable. Service users may also be denied access to community resources due to differing referral criteria and risk assessment policies, reflecting different organizational priorities. Occupational therapists may have little or no control over these issues. Individual service users will have even less control over them. Ownership of occupation and commitment to the occupational therapy process cannot begin to take place when the service user’s agency, in terms of being empowered to make choices, is effectively thwarted from the start. The issue of access does not just apply to the first point of contact with occupational therapy, but at every stage. Overcoming barriers can be achieved by sharing and negotiating the meaning of occupational therapy as it unfolds.

NEGOTIATING MEANING

To service users an occupational therapy assessment may have profound, unanticipated implications for the assessed person’s sense of identity. The individual may interpret the assessment as a judgement, wondering ‘What is the OT seeing that leads them to think I need occupational therapy?’

How first encounters are handled is vitally important. To use the old adage, there may not be a second chance for an occupational therapist to make a good first impression, as one occupational therapy service user’s experience highlights:

This member of staff showed me around and I saw this guy doing mosaic on glass. I love working with colours and that grabbed my attention. I asked if I could do that too but the member of staff said ‘no’ I could not do it because this other person was already doing it and so I was shown to a table where these women were doing some sewing. Now I hate sewing, it just isn’t me but she was adamant it would be a good activity for me. That was the end of my interest in OT. In fact I never went back to the unit. There was no explanation as to why only one person was allowed to work on this particular activity I was interested in (was it an issue of supervision?); they did not try to find me a similar activity, they just went for the simplest and easiest solution for them. This was not about my needs in the end but about theirs. The effect was that they had lost me, and any potential connection with me, even before I signed up to OT’.

In this situation, there is no sense of the staff member relating to the service user as an individual. It may be said that ‘occupational therapists need a high level of empathy and to have a sense that tunes in to our needs and feelings even when we can’t speak’ (College of Occupational Therapists 2006, p. 12).

‘Tuning in’

Where occupational therapy does ‘tune in’, it can resonate at the core of the person’s sense of identity, providing a life-changing experience, as one service user’s account of woodworking testifies;

I argued and argued to be allowed to use my grandfather’s carpentry and marquetry tools; this was met with counter-arguments about health and safety rules which seemed more important to them. In the end common sense prevailed. This experience allowed me to connect with a part of my family history in ways I had never known before. The aim was also a challenge to myself, to be able to create an object from a simple lump of wood; it still takes pride of place at home. I do believe my grandfather would have been proud and that was important to me at that point in time.

Another service user’s experience of pottery makes a similar point:

I had never done it before. I enjoyed it. When I was discharged I looked for more opportunities to do pottery and found an organization with a rarely used pottery which I used. I ended up teaching pottery to others and would now like to work in this field. It helped me find an activity, to reach my potential and to, in turn, empower other people.

(College of Occupational Therapists 2006, p. 9)

Overall, the therapy process and the context must be, or become, meaningful to the service user. Under the pressures and constraints of everyday practice, missing the opportunity to ‘tune into’ the service user can have serious, ongoing, implications – as a service user explains:

I spent the first 18 months of an eight year spell in OT glued to a corner of the room by the window. There were the very few odd days when I was desperate for someone to come and take me away from my spot but mostly I would have liked to just stay there until the end of time. Being there, in that spot, was what I had to do to remain alive. In time, I came to realize that one person, a secretary (note, not the OTs who spent most of their time in the office), would come and talk to me after the session had ended, while I was plucking up the courage to go home. She never judged me. She realized how paralysed and disconnected I was. She was the one who told me I was entitled to lunch but even then I would never have been able to get it myself. Gently she encouraged me and, month by month, bit by bit, I slowly found the courage to make a cup of coffee in public and to finally grab the packed sandwich on offer on the trolley. Years later, when I read my medical notes, my spell by the window was described as ‘refuses to engage’. More to the point I was unable to ‘engage’ and they did not try to ‘engage’ with me either. And yet, had not the secretary known how to ‘engage’ with me, just using patience and her humanity?’

Exploring the Purpose of Occupations

Service users can sometimes struggle to see the purpose of occupational therapy;

Many of us had had very good experiences of occupational therapy whilst in hospital but felt that, despite this, we didn’t always know what it was, what it provided, or what we could expect from it. We also felt that access often depended on knowing about it first. If we knew that it existed, then we were much more likely to get access to it than those of us who had little or no knowledge of it.

(College of Occupational Therapists 2006, p. 15)

In hospital settings, occupational therapy may be experienced as a place just to pass the time or do activities which sometimes appear meaningless (Craik et al. 2010). In a story which appeared earlier, the opportunity for the service user to ‘do some sewing’ was deeply uninspiring, even though others seemed to be enjoying it. It was not the way she saw herself. It is therefore not surprising that some people will question their own identity in relation to a suggestion by an occupational therapist that they engage in an occupation which has not been negotiated first. For example:

It was not relevant to me: baking fairy cakes and cooking English meals and playing the drums were not relevant to me … I felt my life was passing me by.

(College of Occupational Therapists 2006, p. 20)

The therapeutic intention, to help someone acquire cooking skills, gets lost. A more positive example of tuning in to the service user is given by Le Granse et al.:

The occupational therapist discovers that the client is interested in classical music. She encourages the client to borrow a couple of CDs at the public library. The client, however, is afraid to travel by bus to go to the public library. The occupational therapist and the client therefore decide to go together, until the client feels free and is ready to travel alone to get his CDs.

(Le Granse et al. 2006, p. 150)

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