CHAPTER FOUR: HEALTH AND SOCIAL CARE
4.1. Many people with communication support needs are first identified by the health services, whether this is young children with slow development seeing their health visitor, or the people with aphasia who are admitted to hospital having had a stroke. In many cases, people may actually be ill and continue to need active medical involvement, although this is not necessarily the case. The effect is that historically the field of communication disabilities has been intricately linked with a range of health disciplines. This primacy effect has coloured the way that many people are perceived by the system. This is exacerbated somewhat by the fact that speech and language therapists, the group of professionals to whom people with communication support needs are most commonly referred, are employed in the health system. There has been a shift in this emphasis in recent years, driven by the move towards a more social model of disability, but this pattern is very apparent for many groups.
4.2. People with communication disabilities often report that they find it particularly difficult getting their needs met in primary care (Law, Bunning, Byng et al. 2005, Murphy 2006). In part this is a function of the training of the medical staff involved which, in the main, excludes any emphasis on these individuals. However, it is also true that, whereas in secondary or tertiary care the diagnosis has already been made and the medical procedures are more likely to have a momentum of their own, in primary care the role of the patient in negotiating their needs with the primary care team is paramount. This is part of a broader agenda related to the quality of communication between doctors and their patients (Charles, Gafni, and Whelan 2000). Problems with doctor-patient communication experienced by the general public can be magnified for patients with communication impairments. For example, poor communication skills make it difficult to take patients' histories, can lead to poor compliance with management plans, consultation time constraints and difficulties with examinations and problem determination (Lennox, Diggens and Ugoni 1997). A recent focus group study looking at GPs' knowledge about communication disability and the use of appropriate strategies to manage consultations with people with communication disability identified that they were frustrated in not being understood and in not understanding their patients, but there was a lack of awareness of the reasons behind the difficulties (Murphy 2006). GPs relied heavily on carers to convey messages. People with communication disabilities identified a range of difficulties in having their needs met in primary care, both in terms of the manner of the interaction and in the transfer of messages about specific procedures or medication. It was found that "[w]here patients find GP consultations stressful or unsatisfactory they lower their expectations, attend less and feel generally disaffected. This results in ineffective healthcare" (p.9 Murphy 2006).
4.3. The largest single study of the views of people with learning disability included 2893 people across all ages (Emerson, Malam, Davies et al. 2005). The use of health services in this group is high. 61% said that they had an illness or disability that they had had for a long time, twice as many as would say this in the population as a whole (see Figure 4.1). But this may go beyond a matter of co-morbidity. Mencap's Treat Me Right report highlighted the health inequalities of people with learning disabilities and attributed some of these inequalities to issues related to communication (Mencap 2004).
Figure 4.1 Percentage of people with learning disabilities who have specific long standing illness or disabilities (taken from Emerson, Mallam, Davies et al. 2005)
4.4. The number of people with identified difficulty speaking is not as high as might be expected given the developmental level of many of the respondents, but this is probably because "speaking" tends to be quite specific and does not refer to broader language difficulties. The majority of people were registered with their GP and three quarters had seen their GP in the past year. Half said that they would choose to go to their GP for help. The study did not ask how easy respondents found it to access health services but it is noteworthy that no more than a quarter of women had ever had a cervical smear or had breast screening. This suggests that this population may not be making very effective use of GP services. Other findings show that individuals with learning disability make the same amount of GP visits as the general population but are less likely to receive health checks. For example the Emerson et al. study's findings are supported by another study, which found that only 19% of women with learning disabilities had received cervical smear tests compared to 77% of women in the general population (Disability Rights Commission 2005).
4.5. One of the problems is that understanding of communication support needs is generally fairly rudimentary and rests largely on the experience of the practitioner concerned rather than their training. This means that training input tends to be somewhat ad hoc, based on the approach of local speech and language therapists or the development of specific guidelines such as the Primary health care workers project related to stammering (Christie, (unpublished).
4.6. Although primary care is an obvious focus because this is where most people with chronic conditions are managed, the need for effective communication is just as important in the secondary and tertiary health sectors. We're still waiting: deaf people's experiences of the struggle to improve their health and well being is a publication from the Scottish Human Services Trust (Henderson and Weston 2004) which, as the title implies, highlights the shortcomings of the health system in addressing the needs of a particular group of people with communication support needs. The experiences of members of the deaf community were used to highlight the sort of problems that can arise if health staff are not aware of the communication needs of the patient. Similarly, people with learning disabilities have been reported to experience considerable difficulty in general hospital settings. On the one hand this can be attributed to the fact that they have a higher level of medical need than the population as a whole, for example associated with increased rates of gastro-intestinal and respiratory disease. On the other hand they experience difficulties in communicating their needs and in understanding their illness and treatment and there has also been a tendency for "diagnostic overshadowing" whereby the individual's behaviour, often associated with the stress of the intervention, is attributed to the learning disability rather than being separately treatable (Brown and Macarthur 2006). The example below describes a situation where a patient with CSN was inappropriately labelled due to the staff's inability to communicate with them in a manner that was suited to their CSN:
" She was only in hospital for 3 or 4 days when she got labelled as having dementia because they could not communicate with her. I had visited her up to that time and was able to have good conversation with her (although she was frail and profoundly deaf). But the staff just didn't seem to understand at all how to communicate with her (ie. much more slowly, clearly and using eye contact) so her death certificate marked her as having dementia. Her husband was just distraught and I was furiously angry."
Henderson and Weston (2004) p.6
4.7. Many individuals with CSN may have to rely on the use of Alternative and Augmentative Communication ( AAC) systems. AAC refers to any form of communication used in addition to or instead of speech ( i.e. when speech is not functional as the primary mode of communication). AAC systems are specific to the individual and these can vary from pictorial symbols to computer based messages with text processing and synthetic voice output (Augmentative Communication in Practice 1998). For individuals who use AAC to communicate, the limitations of the technology itself can be a barrier to obtaining adequate healthcare. For example AAC systems may not contain the relevant vocabulary to discuss intimate aspects of healthcare such as making reference to body parts or voicing concern over sexual health (Lever 2003).
4.8. Individuals with CSN may engage with health and social care services, not just to meet their own needs, but also in the capacity of a parent. A review of the issues in supporting parents with learning disabilities revealed that all of the 13 parents on the advisory group, with the exception of one couple, had had their children taken into care at some point as a result of inadequate support (Tarleton, Ward and Howarth 2006).
4.9. The shift in emphasis towards quality of life as a potential outcome for health services necessarily raises the question of how best to elicit those attitudes in the populations concerned, especially in those who have poor functional communication. There has been a tendency to assume that it is possible to rely on carers to indicate how the person feels about a given issue. The study of quality of life measures in relation to children with communication support needs is currently in its infancy (Markham and Dean 2006). It has been much more comprehensively developed in relation to adults and particularly with aphasia following a stroke (Hilari et al 2003). Indeed the question has now been raised about the comparability of the judgements about quality of life from the perspective of patient and carer (Cruice, Worrall, Hickson et al. 2005). This study compared the response to quality of life measures between patients with aphasia and their family members and friends, finding that the latter tend to have much lower ratings of global health and physical quality of life, although they were comparable for feelings, daily activities and well-being.
4.10. The attitudes of health practitioners are key to the judgements that they make. If they interpret a set of signs in a given way it is likely to lead to certain conclusions. For this reason the ability of the practitioners to judge the severity of communication impairment is important. A recent study has suggested that doctors tend to assume that acquired dysarthric speech reflects poorer overall intellectual abilities of the individual (Fox and Pring 2005).
4.11. Parents with learning disabilities reported the attitudes of others as major barriers to accessing adequate parenting support (Tarleton et al. 2006). Professionals supporting this group report that these negative attitudes are particularly true of staff with no specialist experience with adults with learning disabilities. This is illustrated in the following statement:
" There is, in general, a negative attitude from many professionals involved with these parents. That having a learning disability prevents them from being 'good enough' parents. That the parents will not be able to learn to parent more effectively, or that it will take more time and children cannot wait. Also that giving families additional support will be prohibitively expensive."
(Tarleton, Ward & Howarth 2006 p23)
Parents commented that they felt staff in support services were constantly waiting for them to make a mistake. Often parents felt that they were expected to meet unrealistic standards of parenting that parents without disabilities would not be expected to meet. Furthermore, inconsistency in staffing meant that they constantly had to adapt to varied and sometimes conflicting ideals of what makes a 'good parent'. For example one mother received both praise and criticism from professionals for leaving her child with a grandparent one day a week to go to college.
4.12. There is sometimes a tendency to see communication disabilities as being stable and long-term. It is expected that individuals with communication support needs will need long term support. The reality is rather different, with people feeling better able to cope at some stages and perhaps needing more support at difficult times such as when they leave hospital. There are many groups who experience changes in their pattern of difficulties, ie. they get better or worse. For example, people who stammer commonly report "relapses", when they return to earlier behaviours and lose the ability to control their stammer (Crichton-Smith 2002). Studies of people with aphasia, a communication impairment that commonly occurs following stroke, suggest that different pressures and obstacles arise as the person moves through different life phases and life events (Parr, Byng and Gilpin 1997). For example, helping children with their homework, advising a young person, supporting a sick family member, moving house and dealing with illness or bereavement can all put particular pressures on communication skills. As life events unfold, people may need to enlist the help of different public services. In other words, communication impairment is not just a 'one-off' static condition but is continually exposed to changing circumstances.
4.13. Primary care has been identified as an area where people with disability have particular difficulties (Macdonald and Ritchie 2005). They identified a series of factors which help promote good practice:
- Effective partnership working
- Consultation with disabled people
- Awareness of the needs of disabled people
- Effective use of resources
- Support for staff
- A learning culture including evaluation and feedback.
4.14. Two key changes have been taking place in recent years which have a bearing on the provision of services for people with CSN within the health system in the UK. Firstly, concerns about the communication skills of doctors have been highlighted in recent documents related to medical training and practice (Scottish Executive 2003b). In the main these are generic guidelines and communication skills training exercises which teach a very basic level of communication skills to help the patient feel more positive about their experience of visiting their doctor and ultimately to reduce litigation. This has the potential to make a considerable improvement to the experience of the majority of individuals. However, it does not generally include training about effective interaction with patients with communication support needs. Secondly, the expectations about the provision for people with disabilities has increased considerably. Although the disability legislation such as the Disability Discrimination Act (1995) now requires employers and service providers to pay attention to the needs of people with disabilities, the emphasis remains firmly with their physical needs (Disability Rights Commission 2004, 2005). However, there have been recent signs that communication access needs are being taken into consideration, at least as far as access to health services is concerned ( DRC 2006). It is obvious that this focus is necessary if basic modifications to service delivery and the development of public spaces is to become the norm, but it is not in itself sufficient to meet the needs of a great many service users. One way to address this is to include specific competencies within the jobs of those working in health and social care. There is evidence that such frameworks have been developed for example by the Scottish Qualifications Authority but it unclear how this translates into outcomes as far as the service user is concerned.
4.15. The area which has probably had most attention is services to people with learning disability. The health needs for this group have been extensively documented in Scotland ( NHS Health Scotland 2004) and the recently published best practice statement is a good example of the range of modifications that need to be made by healthcare providers. These include a number which relate primarily to communication inclusion ( NHSQIS 2006). For example there are appendices with an extensive range of tips for effective spoken and written communication in the health setting. Clearly these sort of recommendations have the potential to be invaluable across all aspects of the public and private sector and can be generalised to a wide range of groups of people with communication support needs.
4.16. One of the primary needs is simple and efficient methods to improve communication between people with communication disabilities and their doctors. There are various methods of doing this which are readily available and have a developing evidence base (Law et al. 2005, Murphy 2006). But this is more than a matter of a specific procedure. For example there is a real need for people with communication disabilities, their families and their carers to be better informed about what to expect within a hospital setting. Materials such as Stroke Talk, a communication toolkit, have been developed specifically for people with aphasia, in order to address this issue in an accessible format. This resource is used by patients and hospital staff to discuss and understand stoke and stroke care through the use of simple language, keywords and illustrations provided in the toolkit (Cottrell and Davies 2006). As consultations with service users have demonstrated there is a wide range of improvements to services, for example concerning involvement with families, the development of accessible and appropriate information and the appropriate involvement of people with communication support needs, which will need to be made before the needs of individuals are likely to be met. A number of such consultations have recently taken place in Scotland with specific reference to people with aphasia following a stroke (Dare Foundation 2005, Wood 2006, NHS Forth Valley 2007 and Law, Pringle, Irving, et al. (forthcoming)). While needs are now relatively well recognised it is by no means clear whether all the recommendations made have been implemented.
4.17. This has been taken one step further in the "Better Health through Better Communication" project (Hartley 2003). This was designed to improve access to primary health care services for a range of different groups of people with communication difficulties. It included development of an array of materials to modify the environment of the primary care practitioner's premises. Similarly, good practice guidelines for working with people with CSN have been produced for support workers and personal assistants (Scope 2002). The charity SENSE have published a toolkit for working for older people who have hearing and visual impairment, which provides a list of guidelines for promoting communication access over a variety of communicative media such as one to one interaction, communicating over the telephone, by text phone or in written correspondence (Sense 2006).
4.18. One of the key issues is the level of training received by those likely to be working with groups of people with CSN in health and social care settings. One such programme, called the Communication Access Toolkit has been developed for providers of health, social care, voluntary and private services. (Parr, Pound and Hewitt 2006). Developed by Connect (a voluntary sector organisation based in London) with and by people with aphasia, the Communication Access Toolkit is a training programme and resource that enables service providers to make their service accessible to people with a range of communication disabilities. The training is structured into eight modules that build up a set of core concepts and strategies that service providers can use to make their services communicatively accessible. Part of the programme involves enabling service providers to understand and identify the barriers faced by people with communication disabilities when using services. This is done through thinking about stories, drawn from the experiences of people with aphasia, that depict different types of obstacles as they are played out in different service settings. Six different scenarios are used: visiting a GP, admission to a hospital ward, an outpatient appointment, routines in a residential care setting, taking part in a volunteer led support group and having a service provider make a home visit. Service providers then develop practical skills and techniques to make their service accessible, by attending to and adapting their service interactions, documents and environments.
4.19. Healthcare professionals should also receive training in involving patients with CSN in the decision making process as a means of removing barriers to healthcare service. For example a study for improving communication access in healthcare decisions for people with aphasia trained professionals by providing those involved with the knowledge and skills of supporting communication access. The study successfully increased team members' knowledge and skills in communication access, their understanding of access and inclusion for aphasia. There was also a shift in attitude from placing the responsibility for communication access upon the individual to a shared responsibility by all parties (Simmons-Mackie, Kagan, Christie et al. 2007).
HEALTH AND SOCIAL CARE - KEY POINTS
- Healthcare services are still failing to meet the needs of individuals with CSN.
- In spite of initiatives to improve the communication skills of healthcare staff, their knowledge and understanding of CSN may be limited; e.g, communication difficulty may be misinterpreted as a sign of poor cognitive function.
- Poor communication between healthcare staff and people with CSN may compromise accurate diagnosis and effective treatment. The specific vocabulary required to describe and understand symptoms and illness may be unavailable to people with CSN.
- There is an over-dependence on carers to report the symptoms and feelings of individuals with CSN.
Potential for improvement
- All staff working in healthcare would benefit from communication training which fosters awareness and understanding of the needs of CSN individuals.
- Simple changes to the physical environment may improve communication between people with CSN and their doctors.
- All healthcare contexts ( i.e. hospitals, residential, home settings etc) and all aspects of service delivery (including written correspondence and instructions) could be improved by being considered in relation to CSN.
- A few initiatives are already under way that are focussing on developing the knowledge and skills of service providers. Some have very specific service users in mind (eg the Sense toolkit) whereas others are working towards opening up communication access to services for people with a variety of communication issues (eg The Communication Access Toolkit).