Dimensions clau per a l'estudi de la exclusió/inclusió de les dones en les TIC

In their original manifesto in 1997, the UK governing political party, Labour, called for increased participation of the ‘service user’ in the re-design and modernisation of services (DH 1997). A greater emphasis was placed on the ‘patient voice’ following which the term ‘patient-centred’ was frequently used (DH 1997). Over the next three years, from 1997-2000, Labour’s ‘Third Way’ planned to re-shape the NHS into a more ‘patient- focused’ service. Interestingly, the benefits of patient-centred care such as respect, being heard and the ability to inform and shape services were highlighted in Derek Wanlass’ report (Wanless 2002). A later white paper published by the Department of Health (2005a): ‘Creating a Patient-led NHS Delivering the NHS Improvement Plan’ aspired towards developing an NHS that was ‘patient-led’ and outlined the key attributes of a patient-led service predicated on the human rights of patients underpinned by respect and understanding from the professionals involved in their care. Other policies used to promote patient-centred care included the Expert Patient Programme (NHS 2007), which has since implemented a range of programmes to empower patients to become experts through dedicated educative strategies. The patient and public involvement has subsequently paved the way for a more integrated approach to care in which the patient is believed to have a voice (Gillespie 2002).

Interestingly, a different language evolved within the context of learning disabilities, which had debated ‘person-centred’ planning for over 30 years (Dowling et al 2006). Here, a focus was placed on the person as opposed to the patient that culminated in the Department of Health white paper ‘Valuing People’ in 2001, which promoted active involvement of people with learning disabilities and their carers and families to improve their lives. This white paper was followed by the advent of the ‘Personalisation Agenda’ within the white paper: ‘Putting People First: A Shared Vision and Commitment to the Transformation of Adult Social Care’ (DH 2007), which had been introduced to empower disabled people and facilitate choice and control of their lives (Dickinson & Glasby 2010). As a result of the introduction of personal budgets and direct payments, the Personalisation Agenda represented a key government policy to support and empower

34 adult services predominantly within social care and for people with long term disabling conditions. Originally, the aim of person-centred planning was to achieve equality and empower people to live as independently as possible. This involved constant planning, review and importantly, learning and listening (DH 2001a) whilst taking into consideration the views of the individual, significant others and their ‘personal network’. It was acknowledged that this approach to care could benefit individuals and families in many ways.

In 2006 Dowling et al evaluated the person-centred approach and highlighted similar approaches to care within mental health and gerontology where they acknowledged that in these contexts, ‘person-centred planning’ was often referred to as ‘person- centred care’ and suggested that the changeable terminology emphasizes the philosophical foundations of practice. Although there were differences in terminology, person-centred planning was thought to be at the heart of learning disability services across health and social care and personalisation was acknowledged as being ‘a cornerstone of the modernisation of public services’ (Department of Health, 2008: p. 4). An earlier and perhaps broader definition suggests that personalisation was ‘the way in which services are tailored to the needs and preferences of citizens; equally, the overall vision is that the state should empower citizens to shape their own lives and the services

they receive’ (HM Government Policy Review, 2007: p. 7). However, similar to Wanless

(2002), problems associated with the concept of person-centred care and lack of clarity about how care may be personalised were mooted between professional groups. Ultimately, the Personalisation Agenda was designed to empower disabled people through advocating consumers as ‘co-designers’ of service. Choice, partnership and self- care are thought to be at the heart of service design based on approaches to listen and respond. Yet as Dickinson & Glasby (2010 p3) reported, there remained a ‘high degree of confusion over what personalisation is’ and the mix of idioms used by different professional groups to describe the concept appears to have exacerbated this ambiguity. This ambiguity persists and, has been mirrored in UK coalition government policy in which the rhetoric of the ‘patient’ voice has recently re-surfaced (DH 2010) and services

35 that are ‘patient-led’ are advocated (see Table 3). However, whilst the political ideology of the ‘patient’ has been used to underpin adult health services; mental health, gerontology, rehabilitation and learning disabilities services and policies have continued to focus on the concept of the ‘person’.

1) Shared decision-making will become the norm: no decision about me without me.

2) Patients will have access to the information they want, to make choices about their care. They will have increased control over their own care records.

3) Patients will have choice of any provider, choice of consultant-led team, choice of GP practice and choice of treatment.

4) The system will focus on personalised care that reflects individuals’ health and care needs, and encourages strong joint arrangements and local partnerships.

5) We will strengthen the collective voice of patients and the public through arrangements led by local authorities, and at national level, through a powerful new consumer champion.

Table 3: Department of Health. (2010) Equity and Excellence: Liberating the NHS

Although the political rhetoric reflected a move towards empowering patients to become involved in care, the extent to which the idiom of ‘patient’ as opposed to ‘person’ or service user was influenced by political ideology was unclear. Concerns about the language used to support political policy have been previously reported, and in particular, the use of idioms such as ‘patient’ or ‘service user’ has influenced debate. For example, William’s (1998) examination of the context of person-centeredness presents a plausible rational for the contrary language used in policy which reports that the term ‘people-centred’ is favoured because of the belief that ‘people’ centred referred to services being shaped around ‘people as people’ rather than ‘objects of interest’ (p84). The effect of language used in policy remains contentious and politically sensitive, and explains Williams & Grant’s (1997) sceptical assumptions about the symbolic link between client-centred care and consumerism which concluded that;

“To be people- centred and to value individuals requires an appreciation of the totality of the individual and not concentration on a specific role. ….. in treating people as patients they have reduced the individual and thus devalued them. To treat people solely as consumers is surely a similar act” (Williams & Grant’s, 1997, p86).

36 Ironically, the use of the term ‘consumer’ within health policy appears to have ignored calls for the use of more appropriate terms as suggested by the recipients of care themselves. For example Stock’s (1997) survey of psychiatric patients’ perceptions about the term ‘consumer’ discovered that this term was thought to be pejorative because it removed the caring adjective of ‘patient’ or ‘person’ to one that was based on the consumption of a service. The term ‘patient’ and ‘client’ are synonymous in the literature and have been used interchangeably in policy. For some, the extent to which this reflected person-centred care was a concern and it is acknowledged that the political idioms used may not have considered the impact of using terms ‘patient’ or ‘client’ had on care. In addition, some have suggested that the term ‘patient’ disempowers the individual (McCormack 2003) and its persistent use in health care policy may exacerbate rather than reduce paternalism. Equally, language used by different professional groups to describe the ‘patient’ may be predicated on divergent ideologies, which ultimately inform services and care. This concern was discussed by Lloyd et al (2001) who explored professional preferences to care descriptors and identified a split between professional ideologies. Lloyd et al’s findings suggested that doctors preferred to use the term patient whereas allied health professionals liked the term client. Lloyd concluded that health professionals needed to listen to the voice of recipients, which includes understanding how they would like to be referred to. The inappropriate terms used to refer to people receiving care concurred with Wing’s (1997) and Nair’s (1998) findings and similar to McCormack (2003) suggested that terms such as client and service user may be considered inappropriate and disempowering. The literature highlighted that the influence of professional ideologies on language was significant and is discussed next.