In What Ways Can Service User Involvement Help to Address Power Imbalance in Health and Social Care
The Changing Face of Social Care
This essay will look at what power is and why it is important in health and social care and how it impacts the relationships of the service user and provider. It will also assess the different forms of power that the service user may go through and how some of those forms may not be so obvious. The essay will look at an article from the British Journal of Learning Disabilities (BJLD), "It’s Only Right That We Get Involved: Service-user Perspectives on Involvement in Learning Disability Services" (Hoole and Morgan, 2010), where service users are involved with their care and compare it to theories such as those of Ivan Illich, Arnsteins Ladder, Kwok-TFu Wong and Henderson and Pochin (reference). It will also address the importance of advocacy and citizenship as part of the framework to a service user’s input to their package of care and care needs good overview of approach to essay
Power in health and social care is part of everything in the sector from service users to groups to organisations and institutions. However, people may feel an imbalance of power if, even in the best intentions, a care package has been put in place which has been assessed for them by doctors and social workers and has not included the service user’s input (MacKian, 2010, p.9). As the origins of the health and social care sector is about eliminating disease, there is still an element of control within the sector which underpins the "medical model" (MacKian, 2010, p.10). This focused on segregation and control. Doctors had power using the Mental Deficiency Act 1913 to diagnose sickness and insanity as well as non-pathological conditions. Ivan Illich (cited in MacKian, 2010, pp. 10 – 11), social critic, looked at what he saw as the two key contributions to the power relationship between service user and provider. The first was the professionalism of care and how the medical side of the sector becomes separated from care giving. Medical terms are used and this language alone can cause a barrier. The second was the medicalisation of society, where Illich suggests that conditions such as shyness and anxiety as well as emotional and behavioural conditions have now been medicalised and fallen to the social care sector.
New attitudes: Learning disabilities is/are one such condition that is now part of the social care sector, whereas before people would have been institutionalised under the medical model. The BJLD article Hoole and Morgan (2010) outlined that people with learning disabilities need to feel empowered as they are the experts in the care they need, but they are left feeling disempowered and not listened to as they felt they were being treated by a still very institutionalised model of care. One service user that was interviewed for the article described their experience of dealing with staff as being dictatorial; whenever the individual spoke to a member of staff from the home they lived in, the conversation would be dismissed or a question would not be repeated. The choice of playing a part in the discussion was paternalised, leaving the service user feeling let down and the care not meeting their needs. An example of this was when a service user discussed that they wanted to move into a bungalow with their friend. There was no discussion, and the member of staff would not even agree to a compromise (Hoole and Morgan, 2010). Out of the seven participants interviewed for the article, not being listened to or "heard" was the main complaint and that their "feelings" were not considered. There is a clear power imbalance between the staff and service user and a feeling the service user not being able to "do anything about it." Inequality is being shown here and the participants of the interview were not given the same rights as the rest of society . This type of power is demonstrated in The Framework of Power by Wong (2003) as cited by Tilley et al (2010, p.54) where the member of staff has developed the capacity to have "power-over" and is overruling the service user’s needs or wishes.
Studies by Edwards and Elwyn have shown that people who participate in decision-making about their care are less anxious and are more likely to partake in the care plans (Turner et al, 2010, p.25). The government is also encouraging person-centred care, which is far removed from the ‘doctor knows best’ ethos and the medical model. Person-centred care is having the service user participate in the type of services they think will benefit them and many models have been used to interpret the participation of people who use the health and social care services.
One model is the Arnstein lLadder of Participation created by Sherry Arnstein (Turner et al, 2010, p.27). The first three rungs of the ladder are non-participation of "Manipulation, Therapy, and Informing." This is where the service users in the article found themselves; they had no voice and they were not able to participate in any discussions regarding where and who they lived with. The next three rungs on the ladder are tokenism "Informing, Consultation, and Placation." The last three rungs of "Citizen power" demonstrate "Partnership, Delegated power, and Citizen control."
It must be noted that even though it is useful to use Arnstein’s ladder of participation as a guide, it is still open to criticism. Some have argued that it is too focused on the outcomes and final goals and not the act of participation itself as a goal (Turner et al., 2010, p. 27). Some service users may choose to use their power not to participate in the discussion of their care at all as that is their choice. Some of the service users in the article reflected on how they felt that they could participate in some of the social care services they were accessing. They talked about being able to talk to the staff at the day centre, their support workers and other people who were in their professional support network that they felt listened to them. One service user also felt that they could voice their opinion on discussing that they wanted to participate in who was selected to move in with them as currently they did not have a choice and felt it was time this changed. This type of participation also elevated the service user to citizen power.
Citizen power is part of citizenship and acknowledges the rights and responsibilities of working together and focusing on the person’s needs, on what they can contribute and what they will gain from it (Turner et all, 2010, p.40). However, not all resources are available to underpin participation and, as mentioned earlier in this essay, not everyone wishes to participate in "citizenship"; this could be due to social and/or cultural circumstances. It is argued that participation is designed to concentrate on including people who may feel excluded. The BJDL article Hoole and Morgan (2010) echoes this statement by clarifying that the idea of participation is to help people such as those with learning difficulties to gain control over their lives and to become involved in discussions. It also acknowledged their rights throughout the project, their right to sufficient information about the project, as well as the right to say no and to withdraw consent from the project at any time. It is important that service users understand the reasons why they may not feel they can participate in conversations about their health needs, which may be down to either lack of information on their care or how that information is communicated in the first place. It is crucial that the service provider takes time to get to know the service user and provide them with the information in a language they understand to make an informed choice . This demonstrates Wong’s framework of "Power – with" and of developing the capacity of cooperation (Tilley et all, 2010, p.54). If the service user is still not clear on how to achieve this in order to make an informed choice, then an advocate may be useful.
Advocacy is where another person helps another individual to be heard and can challenge power in the health and social care profession. Henderson and Pochin describe advocacy as a three-pronged way of helping people achieve what they want. Firstly, choice: by removing obstacles, a person has the right to pursue a choice. Secondly, access: choices can be made by accessing relevant information. Lastly, justice: for the wrongs that have been inflicted on people (Tilley et al, 2010 p.49).
Advocacy takes many forms. By developing "Power-with" to support them, people make choices. Giving them "Power-to" is essentially about speaking up for oneself and developing self-confidence and self-esteem (Tilley et al, 2010 p54). It is important that the advocate does not make choices for the individual as this would risk "Power-over" in the relationship and the advocate must be on the side of the individual and be non-judgemental. The advocate may find that they have to exert ‘power over’ professionals, which requires negotiation and knowledge skills for the advocate to act on an individual’s behalf.
There are four forms of advocacy: i) citizen advocacy is a one-to-one relationship between an advocate and the individual that can last for months or years; ii) casework advocacy is where advocates have caseloads of individuals they may work with for a short period; iii) peer advocacy is where the advocate has experience of the same issue or discrimination and has knowledge of the health and social care system; iv) crisis advocacy deals with one specific issue such as financial or if a person is being discharge from hospital.
In addition, self-advocacy is where the individual speaks up for themselves. Survivors of the mental health system and disabled people with learning difficulties, such as those who were interviewed in the BJDL article, form a self-advocacy group to support each other. These were the people who felt they could have increased involvement in their care services and felt empowered to speak up for others at house meetings and at the Learning Disability Partnership Board meetings. Speaking up for themselves can break down barriers such as prejudices, inequality and discrimination . Where others may feel too frightened and vulnerable to speak up for themselves, a self-advocacy group will support their members to achieve what they feel is right. One individual who participated in the project felt it was important to include people who they felt were ‘hard to reach’; those who had severe physical and challenging needs and that in the past would have been institutionalised. The individual was "making it their business" to get those people a choice in participating in their care needs. Everyone that took part in the interview knew their rights and had ideas on how to attain those rights. The participants in the article who were part of the self-advocacy group felt that they had meaning by being part of this group and were empowered by working together and advocating on behalf of others. They had developed "Power-from-within" (reference) and a strong sense of confidence and self-esteem and trust in their knowledge, such as their rights.
In conclusion, there is still a long way to go for people to be clear about their rights and for them to participate in their care needs. It must also be seen that people with learning disabilities or other severe or physical disabilities are given the choice to participate (or not) and that this is respected and not just given as a token gesture. It must also be acknowledged that professionals must change their views on how to involve service users without prejudice and judgement and not see service user participation as a threat to their work. Service users should feel confident to ask questions regarding their service and, when necessary, ask if an advocacy group is available to speak to. Individuals require an individual service package, as people’s needs vary. This is a far cry from old school institutionalisation where no one had a voice and everyone was treated with the same service of "care." However, the participants in the article were interviewed in 2011 and there is clear evidence that they felt then that there were still barriers to overcome to have "meaningful involvement in services" (Hoole and Morgan, 2010). The most important element that stood out throughout the interview was the right to be heard.
Hoole, L. and Morgan, S. (2010). ‘It’s only right that we get involved’: service-user perspectives on involvement in learning disability services. British Journal of Learning Disabilities, [online] 39(1), p.no-no. Available at: http://dx.doi.org.libezproxy.open.ac.uk/10.1111/j.1468-3156.2009.00563.x [Accessed 27 Jan. 2017].
MacKian, S. (2010) ‘Chapter 9: ‘Understanding power and participation for people who use services, K217 Book 3: Exploring power and participation, Milton Keynes, The Open University.
Tilley, L. Walmsley, J. Bornant, J. Goodley, D. (2010) ‘Chapter 11: ‘Understanding advocacy -justice, choice and access, K217 Book 3: Exploring power and participation, Milton Keynes, The Open University.
Turner, A. MacKian, S. Woodthorpe, K. (2010) ‘Chapter 10: ‘Understanding participation, empowerment and citizenship in health and social care, K217 Book 3: Exploring power and participation, Milton Keynes, The Open University.
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