Social models concentrate more on the communication process itself, rather than the notion of message sending (Pearce 1994). From this perspective, improving communication is not a simple matter of improving physiotherapists’ skills of expressing and listening to information. Communication is ‘meaning-making’ rather than ‘information processing’ and meanings are constructed between people. Communication is both based on and generates our perceptions, descriptions and understandings of the world or, more specifically, physiotherapy.

There are a number of important aspects to a social model of communication. Interpersonal communication is viewed as an interplay between people in which participants are both active agents, affecting the interplay, and reactive agents, affected by the interplay. There is no simple one-to-one correspondence between acts of communication and the meaning expressed. The context is all important. Silence, for instance, can ‘say’ more than words, but has no meaning outside the particular interpersonal and social context. It could be taken to mean the person is experiencing boredom, fear, respect, deep mutual understanding, passion, hatred – the list is potentially endless. Even signals that usually have a well defined meaning, such as raising the hand to signal ‘stop’, depend on the context of the two-way flow. If accompanied by a smile, for instance, the raising of the hand could be meant as, and understood to be, a joke. Furthermore, this model is holistic. Meaning-making is constituted through the organisation and system of a conversation with the whole being greater than the sum of the parts. Physiotherapy–client communication is not just a means for undertaking physiotherapy practice: the participants are creating physiotherapy practice through their communication.

Barriers to communication from the viewpoint of clients

• Inequality of professional–patient relationships.

• Attitudinal barriers.

• Barriers to access to services.

• Barriers to access to information.

• Lack of concern on the part of professionals with emotional issues.

• Lack of disabled professionals.

This takes us into clients’ experiences of services, concentrating on barriers to communication, recognising that any analysis of barriers to communication needs to identify the complexities of the communication process itself and the diversity of clients’ experiences (Figure 10.1). Such an analysis also needs to recognise the inequality of professional–client relationships. Professional dominance can be seen in assessment procedures where, for example, the professional’s observations are viewed as ‘objective’ whereas the patient’s perceptions are viewed as ‘subjective’, and where pseudo-scientific language serves to mystify and confuse service users (French 1993). Because of the specialisation of the various professional groups, definitions of need tend to be narrow, their scope being dictated by specialised knowledge and interests. The needs of disabled people, however, tend to be multifaceted. As Marsh and Fisher (1992: 50) point out:

Figure 10.1 Barriers to communication, a means of oppressing women, or a symbol of personal, cultural and religious identity?

If the process of assessment becomes one of professional discovery of ‘need’, rather than a negotiation of problems, then users tend to feel hemmed in by the definitions used to describe their circumstances and trapped by the choices they are faced with.

Attitudinal barriers are commonly referred to by disabled clients. Boazman (1999: 18–19), for instance, had mixed responses from health professionals when she became aphasic following a brain hemorrhage:

Their responses towards me varied greatly, some showed great compassion, while others showed complete indifference. I had no way of communicating the fact that I was a bright, intelligent, whole human being. That is what hurt the most.

… when you can’t communicate they treat you like a kid and that is just so frustrating … A handful of doctors were just awful. You just wanted to say, ‘Do you know what this is like?’

Pound and Hewitt (2004) write of the equation of communication disability with ‘having nothing to say’ and ‘being stupid’ which, they believe, illustrates the ‘Does he take sugar?’ syndrome (Figure 10.2). In another, small-scale study involving people with speech impairments, it was found that most difficulties were encountered within medical services. Doctors’ and dentists’ receptionists were singled out for particular criticism (Knight et al. 2002: 19). Mary, one participant, recalled:

My most embarrassing incidents have been with my doctor’s and dentist’s receptionists. I have had more trouble with them than with any other group. They were impatient and rude when I tried to make appointments, and would talk to my carer when I was trying to ask questions.

Another participant described his encounters with hospital consultants:

They have excluded my carer from any discussion despite me indicating that I preferred to have my carer lip-read to avoid having to use my oesophageal voice.

Another common complaint of the research participants in this study was the means of access to services that generally depended on the telephone.

People with speech and language impairments are often compelled to wait long periods of time for the communication equipment they need. A survey conducted by Scope (Ford 2000: 29) found that nearly a fifth of people waited for more than a year. Professionals may also have control of when the equipment can be used. One of the research participants said:

Physiotherapists at school have recommended the Delta Talker be removed from situ during travelling because of possible safety problems. They also used to request removal of the talker at meal times.

Deaf people have complained about the insistence of professionals that they use speech rather than sign language. A deaf person interviewed by Corker (1996: 92) states:

I hated learning speech – hated it – I felt so stupid having to repeat the s,s,s …. I was asking myself ‘Why do I have to keep going over and over it, I don’t understand what it all means’ …. It was just so stupid, a waste of time when I could have been learning more important things.

In interviews conducted by French (2004a: 99), two participants spoke of their experiences of occupational therapy:

I’ve often thought about OTs [occupational therapists] in rehab, if only they could think about the context from which their patients came. I was received as head of department of a girls’ comprehensive school, head of physical education, and this OT said to me, ‘Now you’ve really got to learn to type because that’s what you’ll be doing.’ She negated the whole context of my professional life – I was just a patient.

It was a case of being treated like a patient. I felt like my feelings were being ignored, that they were just going through a routine and they would give me exercises to do which I couldn’t understand the purpose of because they didn’t explain. I had enough speech to ask, but I didn’t ask, because I didn’t have the confidence to ask.

Information can also be given in an insensitive way as Joan (interviewed by French et al. (1997: 37)) explained:

When I came back for the negatives, oh it was terrible. He lifted them up to the light and he said to the nurse ‘Macula degeneration in both eyes, sign a BDS form’ or whatever it is. Then he turned to me and he said ‘There’s nothing we can do about it …… You’ll always be able to see sideways but you’ve got no central vision’ …. So I came home feeling very upset about it.

Being unable to access information is a problem faced in all areas of life by visually impaired people, with potentially hazardous consequences of unreadable notices and loss of privacy when documents are unreadable by the intended recipient. Vale (2001) reports that appointment letters continue to be sent out in standard-size print, even by many hospital eye clinics, and only one third of National Health Service (NHS) hospitals offer general patient information in large print.

It is important to recognise that social divisions, for example gender, age and ethnicity, intersect disability and also produce communication barriers in some instances. Summarising the evidence from several studies of the experiences of disabled people from ethnic minority communities, Butt and Mirza (1996: 94) state:

The fact that major surveys of the experience of disability persist in hardly mentioning the experience of black disabled people should not deter us from appreciating the messages that emerge from existing work. Racism, sexism and disablism intermingle to amplify the need for supportive social care. However these same factors sometimes mean that black disabled people and their carers get a less than adequate service.

In their study of young black disabled people’s experiences and views, Bignall and Butt (2004: 49) conclude:

Our interviews revealed that most of these young people did not have the relevant information to help them achieve independence. Hardly any knew of new provisions, such as Direct Payments, which would help with independent living. Most people did not know where to get help or information they wanted, for example, to move into their own place or go to university.

Begum (1996) takes institutionalised discrimination as her basis for analysing difficulties in the relationship between disabled women and their general practitioners (GPs). She explored physical, communication and attitudinal barriers, and found that they deny opportunities to women with impairments and can impede access to the services they require. Disabled women, for instance, often find that information is withheld from them. One of her respondents explained that she had not been told that multiple sclerosis had been diagnosed, yet her husband had been told two years before she was informed. It also seems that the flow of information from disabled people to GPs is liable to distortion and failure. This is, at least in part, owing to GPs’ responses to impairment. One respondent in the research said: ‘Sometimes I find that a GP – particularly one who is only here for a short time and fairly new – is more interested in my sight problem, or my child’s sight problem, than in what I’ve come to ask about’ (Begum 1996: 83–84). Age can also be a factor that distorts communication. Olwen (interviewed by French et al. (1997; 35)) talking about the attitude of professionals to her loss of sight said: ‘Even though I’m older they were “…at your age what can you expect?”. You know they talk to you like that.’

Disabled professionals stand in an interesting position in an analysis of communication between professionals and disabled people. It can both be argued that the barriers to communication have discriminated against disabled people wishing to be service providers and also that the acceptance of more disabled people into the professions would be a significant factor in developing inclusive communication. A visually impaired physiotherapist interviewed by French (2001: 140) spoke of poor communication with her colleagues:

I’m a registered blind person but they haven’t got a clue … If I stay in one building I’m fine, it’s only when I go over to G … that I get really lost … and one of the physios says, ‘So you’re not talking today!’ because I’ve walked right passed them … and I’ve worked with them for years; oh dear … I just say ‘I didn’t see you’ but they don’t seem to learn.

Other health professionals have spoken of the advantages they have when communicating with ill and disabled clients (French 1988: 178). A disabled doctor explains:

Very many people have told me they can talk to me because I know what it feels like to have an illness. Once you get over that hump of being accepted for training then you can use your disability.

Cultural differences

Definition

Culture is a general term for the symbolic and learned aspects of human society. A set of basic assumptions – shared solutions to universal problems of external adaptation (how to survive) and internal integration (how to stay together) – which have evolved over time and are handed down from one generation to the next.

Here, our focus is on inequality of power, locating culture within its socioeconomic, political and historical context. One layer of power is provided by the wider social relationships in which everyone in health and social care – service users and service providers – are embedded. In this broader social context, there are significant and constantly changing differences in power between people belonging to different groups embedded in different cultures. Some groups have greater power, resources, status and better health. Others can face discrimination – including members of ethnic minority groups, disabled and older people – in a variety of areas, including access to required services.

Definition

Institutionalised discrimination is unfair or unequal treatment of individuals or groups that is built into institutional organisations and can result from the majority simply adhering unthinkingly to the existing organisational rules or social norms.

Language, in terms of cultural issues, is often seen as the main barrier to effective service provision. It is, therefore, assumed that an adequate supply of leaflets in appropriate languages and interpreters will solve the problem. However, communication consists of more than language skills and literacy. Research by Banton and Hirsch (2000: 32) suggests that even among UK-born English-speaking Asians, there is considerable lack of knowledge of what services are on offer. They state:

Communication problems are identified in all work in this area. Such problems are partly to do with language differences, but also arise from the separate lives led by different ethnic groups in our society and the consequent unlikely coincidence of communications about services arising through informal contacts.

Perhaps the most consistent recommendation from research has been the necessity for the direct involvement of disabled clients, including black disabled clients, in the planning of services (Butt and Box 1997). Again, this needs to be understood within the context of multiple discrimination. Concluding their study with young deaf Asian people and their families, Jones et al. (2001: 68) state:

… identities are not closely tied to single issues and young people and their families simultaneously held on to different identity claims. To this extent, it is not a question of forsaking one claim for another and choosing, for instance, ‘deafness’ over ‘ethnicity’, but to negotiate the space to be deaf and other things as well. It is only through addressing these tensions that services will adequately respond to the needs of Asian deaf people and their families.

In 1991, Hill drew attention to the extremes of oppression faced by black disabled people. She stated that the cumulative effect of discrimination is such that black disabled people are ‘the most socially, economically and educationally deprived and oppressed members of society’ (1991: 6).

Studies of the families of Asian people with learning difficulties also provide evidence of high levels of poverty, with 69% of families having no full-time wage earner and half of the families being on income support (Nadirshaw 1997). Significant language barriers were found in the same study with 95% of carers being born outside the UK and only a minority able to speak or write English.

There are dangers, however, in such statistics. Firstly, they can feed presumptions and stereotyping which belie diversity. In her study of Asian parents, for instance, Shah found that ‘the majority of parents had a good command of English and, for some, English was their first language’ (1998: 186). She also cites language barriers as an example of preconceived notions of discrimination experienced by Asian families. Secondly, there is a danger of over-simplifying language barriers. Language engages us in freedom of expression, release of emotion, developing cultural identity and sharing values. A common language, therefore, is no guarantee of shared understanding. At the attitudinal level of institutional discrimination, there is a lack of understanding among the majority population concerning the life style, social customs and religious practices of people from ethnic minority groups (Atkin et al. 2004). Discrimination has sometimes been denied and rationalised through myths that, for instance, black families prefer ‘to look after their own’.

Comparable analyses of the experiences of the interaction of other social divisions, for example disabled and old, disabled and female, disabled and gay or lesbian, and disabled and working-class, indicate that there are parallels. For instance, in the most extensive research into the views and experiences of disabled lesbians and bisexual women, there was evidence that they felt marginalised by lesbian and gay groups: ‘…many disabled lesbian and bisexual women have experienced alienation rather than nurturing and support from the lesbian and gay community’ (Gillespie-Sells et al. 1998: 57).

Another, more recent, addition to the list of groups with fragmented identities whose interests are not fully taken into account by single issue movements is disabled refugees and asylum seekers who ‘constitute one of the most disadvantaged groups within our society’ (Roberts 2000: 945). Disabled refugees and asylum seekers are ‘lost in the system’ because both ‘…the disability movement and the refugee community focus their attention … on issues affecting the majority of their populations and fail to engage adequately with issues which affect a small minority’ (Roberts 2000: 944).

Context of relationships

Inequalities in health

To the busy physiotherapist with many patients to treat and assess, it may seem that illness, impairment and accidents ‘just happen’ and that whether somebody has a fractured hip, a chest infection or a stroke, is largely a matter of chance. All the major research reports over the years, however, demonstrate that mortality, morbidity and life expectancy are strongly correlated with socioeconomic class with those in the lower social classes being at a considerable disadvantage (Townsend and Davidson 1982; Whitehead 1988; House of Commons Health Committee 2009). Although the UK has become healthier and wealthier over the years, health inequalities persist; in fact, the gap between the richest and poorest sectors of society has widened (Asthana and Halliday 2006; Wiles 2008).

Definition

Socioeconomic status is the structural position in society of an individual or a group compared with other individuals and groups. It is a central term in the social sciences and a subject of considerable controversy. In official statistics, people are generally classified on the basic of their occupation and income.

Certain groups within society such as old people, people from ethnic minorities and disabled people are also disadvantaged partly because of their over-representation in the lower socio-economic groups (Power and Kuh 2006). There is also something of a north/south divide with people in the north of the UK having more ill health than those in the south, although there is much variation (Naidoo and Wills 2008).

This section of the chapter will examine the meaning of health inequalities. In order to do this it is necessary to consider what is meant by ‘health’.

Definition

Definitions of health differ between individuals, cultural groups and social classes. One view is that health is the absence of disease or illness. From a broader perspective, health includes the physical, psychological, behavioural, social and spiritual aspects of a state of well-being and recognises the importance to individuals of realising aspirations and needs.

In 1946 the World Health Organization (WHO) defined health as, ‘A state of complete physical, psychological and social well being and not merely the absence of disease or infirmity’ (WHO 1946, cited in Ewles and Simnett (2003: 6)). Although this definition moved the concept of health away from a biological and towards a more holistic understanding, it was criticised for being idealistic and unrealistic, and for failing to recognise that people define their health in a variety of ways based on their knowledge, values and expectations, and whether or not they can fulfil roles of importance to them (Jones 2000a). In 1984, the WHO (WHO 1984 cited in Ewles and Simnett (2003:7)) redefined health as:

… the extent to which an individual or group is able, on the one hand, to realise aspirations and satisfy needs; and, on the other hand, to change or cope with the environment. Health is, therefore, seen as a resource for everyday life, not the objective of living; it is a positive concept emphasising social and personal resources as well as physical capacities.

This holistic definition of health is reflected in the book Meeting the Health Needs of People Who Have a Learning Disability (Thompson and Pickering 2001) which contains chapters on self-concept, meaningful occupation and life transitions. It can be argued that unless we feel good about ourselves and have meaning in our lives, such as going to work, raising a family, learning new skills, visiting friends, helping others or pursuing hobbies and interests, we cannot be fully healthy. Having a sense of control over our lives and being connected to the people around us are also important for health and well-being (Naidoo and Wills 2008; Wiles 2008).

There are many influences on all aspects of our health. Dahlgren and Whitehead (1995) depict these as layers piled on top of each other. At the bottom of the pile are biological factors over which we have limited, or no, control. These include our sex and age, and the genes we inherit from our parents. Many diseases become more common as we grow older (e.g. cancer and cardiovascular disease), some diseases are specific to men or women (e.g. prostate and ovarian cancer), while others are genetic or congenital in origin (e.g. cystic fibrosis and congenital heart disease). When the NHS was established in 1948 it concentrated on this biological layer. It was hoped that improvements in health would eliminate health inequalities but although the overall health of the population has gradually improved (mainly through improved living conditions) the gap between the social classes has widened (Asthana and Halliday 2006; Wiles 2008).

The second layer focusses on our personal behaviour. This includes whether or not we smoke cigarettes or eat too much, the amount of exercise we take and how well we attend to our health needs in the broadest sense. Most policy initiatives from government have focussed on this layer, where attempts have been made to change peoples’ behaviour in order to improve their health, for example anti-smoking campaigns (Jones 2000b; DH 2004; Wiles 2008). This emphasis on personal behaviour has, however, been criticised. Asthana and Halliday state that ‘…the government’s strategy suggests an implicit assumption that health inequalities can be reduced without changing overall levels of inequality’ (2006: 98). There is also a denial of the ways in which the social setting affects our behaviour and reduces our control.

The next layer concerns social and community influences. The people around us, including family members, neighbours, colleagues and friends, can influence our health by giving meaning to our lives and providing assistance and support in times of illness, difficulty and stress. Conversely, these people can have a detrimental effect on our health by neglect, abuse or failing to take account of our needs. Organisations such as the church and self-help groups may also be important (Asthana and Halliday 2006). Berkman and Melchior (2004) point out that social networks provide opportunities for support, access, social engagement and economic advancement, allowing individuals to participate in work, community and family life. Social networks can, however, also lead to discrimination, hostility and exclusion.

Living and working conditions comprise the next layer of influence. It is well known, for instance, that the type of house in which we live and our environment at work can affect our health. Work pressure or noisy neighbours may cause depression and anxiety that can lead to physical ill health (Leon and Walt 2001), and physical hazards, such as dampness, poor architectural design and dangerous work practices, can cause disease and injury (Siegnal and Theorel 2006). Living in deprived neighbourhoods also increases the risk of ill health and mortality, regardless of the individual’s personal situation (Steptoe 2006; Wiles 2008). Much of the legislation passed by the Victorians improved people’s health by tackling problems at this level (Brunton 2004). Various factory, housing and sanitation Acts, for example, reduced the incidence of serious diseases, such as tuberculosis (TB) and typhoid, as well as improving the quality of people’s lives generally. Le Fanu (1999) claims that there was a 92% decline in TB before the introduction of curative drugs. Similar evidence has been put forward by McKeown (1984) who notes that many life threatening and disabling diseases, such as poliomyelitis and diphtheria, had radically declined before the introduction of inoculation. Naidoo and Wills (2008) conclude that medicine has had only a marginal influence on health and mortality rates, although Hubley and Copeman (2008) believe that the under-utilisation of health services, especially preventative services, is a contributing factor to the ill health of the poorer sectors of society.

The outermost layer affecting our health concerns general socioeconomic, cultural and environmental conditions. This includes the economic state of the country, the level of employment, the tax system, the degree of environmental pollution and our attitudes, for example towards women, old people, ethnic minorities and disabled people. Increasingly, these factors have taken on an international dimension as globalisation accelerates (Pryke 2009). It is at this level that government can be particularly influential by implementing policy and passing legislation to bring about wide social change, for example seat belt legislation (Figure 10.3), banning smoking in public places and equality legislation, such as the Sex Discrimination Act (1975), the Disability Discrimination Act (1995) and the Human Rights Act (1998).

Figure 10.3 Seat belt legislation – influence of government policy.

It is clear that these levels all interact and influence each other. If the economic state of the country is favourable, for example, people are likely to have more disposable income which may improve their health by allowing them to buy good quality food and housing of a better standard, engage in leisure pursuits, give their children more opportunities and enjoy relaxing holidays to reduce stress. Similarly, if a person is attempting to give up drugs, success is more likely if community support is strong and if government is willing to act by establishing and financing supportive policies.

Despite the various influences on our health, the evidence suggests overwhelmingly that broad social factors concerning housing, income, educational level, employment and social integration are more important than our individual behaviour or medical practice and advances (Ewles and Simmett 2003). People of the lowest socioeconomic status are at far higher risk, not only of physical illness and early death, but also of accidents, premature births, mental illness and suicide. Smith and Goldblatt (2004) report that of the 66 major causes of death, 62 are more prevalent in the lowest two social classes. It is also the case that men in professional occupations live, on average, seven years longer than men in manual occupations and that the children of manual workers are twice as likely to die before the age of 15 years than the children of professional workers (Naidoo and Wills 2008). In addition, Hargreaves (2007) reports that in 2002–4 infant mortality was 19% higher among manual workers than professional workers, and that the gap had steadily widened. Wiles states that ‘…across the lifespan there are inequalities in people’s health that follow from their economic position. Poor people are more likely to be in poor health and to die at an earlier age’ (2008: 52).

It is important to realise, however, that the health status of a country does not equate to its wealth, but rather to how fairly the wealth is distributed (Eberstadt and Satel 2004). Asthana and Halliday (2006) note that longevity rises in societies which are more equal and socially cohesive, especially when infectious diseases have been controlled. They contend that psychosocial stress is related to feelings of relative disadvantage and subordinate status which, in turn, can lead to physical and mental ill health.

It can be disconcerting for healthcare professionals to realise that there is no obvious correlation between healthcare and health status in any population; indeed, the health service has sometimes been referred to as an ‘ill health’ service as it tends to respond when the damage has been done. This is not to imply, however, that inequalities in health and healthcare facilities should be tolerated. Healthcare should be distributed fairly and in accordance with need. There is evidence, for example, that the uptake of preventative services, such as birth control and screening, is low among poor people (Hubley and Copeman 2008). This is because of a range of factors that were summed up by Tudor Hart (1971) in his notion of the ‘inverse care’ law.

The inverse care law

The inverse care law states that those who are most at risk of acquiring illness and disease are least likely to receive medical and social services. This is because of a wide variety of factors relating to social inequalities and the availability of services.

People with low incomes find it harder to access healthcare services because of social isolation and lack of facilities, such as a car. It is also the case that the areas in which they live tend to have poor facilities and that health professionals tend to give them less time and attention than people who are perceived to be culturally similar to themselves (Naidoo and Wills 2008).

There are still many people in the UK who do not fully benefit from the facilities of the NHS. People from ethnic minorities are not well served (Atkin et al 2004) nor are people with learning difficulties (Mencap 2004; DH 2009). As noted in the section on culture, this is a result of a variety of factors, including poor and inadequate communication, racism, disablism and lack of cultural sensitivity.