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This paper will consider some aspects of user and carer participation in theory and practice in relation to the case of a seventy two year old man named Harold.
Different Levels of Service User Participation
Service user participation is an integral part of social work practice and stems from the concept of the empowerment of service users. This ranges from consultation on an individual level…to user control and management of services (Carr, 2005, p.14). Service user participation is a principle that is quite often difficult to put into practice, although new initiatives such as Direct Payments which allow service users to choose and pay for the services they want go some way to alleviating this, in the case of a person such as Harold, who has complex needs, this is not always straightforward. There are power implications in the relationship between service users and social work professionals, and this makes it hard for service users to know whether their concerns are being taken seriously. This is even more problematic in situations where the person concerned does not appear to have any interest in what happens to them and this is discussed without reference to the service user as appears to be happening with Harold.
Harold has told his sons that he can’t be bothered to get washed or cook a meal… The sons have recently spoken with the day centre manager about their concerns regarding their father… he is spending most of his time in bed, and he is not eating regularly… he sometimes seems to be slightly confused and distant.
It is difficult to assess how far user participation might apply to Harold under these circumstances he no longer wants to attend the day centre and is not looking after himself so it is difficult to know whether he would be able to be involved at any real level in an assessment of his needs. This case does provide a dilemma for social workers on the one hand they have a duty of care, and also in terms of ethical practice, to take into account what the service user actually wants for him/herself. Service user participation often takes place in groups so that the service user does not feel overwhelmed by professional involvement, but this does not seem to be an option in Harold’s case. He sometimes gets confused and he also prefers to be on his own. If, on the other hand, the day centre manager and the other professionals (social worker, a Physiotherapist, Occupational Therapist, and a Community Psychiatric Nurse) involved with Harold take too much notice of the sons then they could be addressing their needs rather than Harold’s and it is difficult to see what level of service user participation would be applicable in Harold’s case.
An Approach to Service User Empowerment
Harold does not object to people coming to the house and perhaps user participation for Harold might best be achieved through the services of an advocate who could present Harold’s views in the best light. As a group older people can be disadvantaged and it is often forgotten that they are people who are as entitled to be treated with respect and consideration as are other groups. Since the 1960s there has been a growing movement in Britain which has come to be known as advocacy. Advocacy involves speaking on behalf of someone, it is an attempt to enable and empower people who might otherwise be disadvantaged. An advocate is there to promote the interests and views of the person they are speaking for. Dunning (2005) maintains that there are a number of stages in people’s lives (particularly those of older people) when advocacy should be a requirement, and especially if there is:
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..a decline in physical and mental health, sensory impairment and the need for health and social services (Dunning, 2005, p.10).
This is a clear description of how things are in Harold’s case, he loses his way around the local shops and his GP has recently diagnosed that Harold has Parkinson’s Disease. Harold is becoming increasingly divorced from reality he acts as though his dead wife is still in the house with him and is unaware of the professional concern and considered involvement in his case. Under these circumstances it would seem clear that Harold is in need of someone who will act in his best interests and speak on his behalf if he is to have any control over his own future. An advocate would, hopefully, be able to establish what Harold should be asking for and what he might be entitled to in terms of services and support. Whether Harold would be empowered by knowing what is on offer is difficult to assess because of his tendency to become confused, but an advocate could make a case for the fact that Harold wants to stay in his own home and this would alleviate any fears he has of residential care. Quinn (2003) is of the opinion that information and advocacy are themselves services and can be the building blocks of …enabling older people to receive the services they require (Quinn, 2003, p.3). The team mentioned above have all received referrals for Harold, an advocate would try to elicit what Harold really wanted and convey this to the team so that his wishes are made known, and as far as possible, catered for. In this way an advocate would give Harold a voice and thereby empower him.
Factors that Promote and Limit Service User Involvement in Decision Making
Ongoing debate on the needs and rights of older people highlight the fact that while there has been a move to ensure individual’s rights to equality of service, older people may still face discrimination. Under these circumstances it is vital that factors relating to power imbalances between service users and professionals be acknowledged. It is only with this acknowledgement that the parties can then work together to at least lessen those factors that contribute to the marginalisation and exclusion of some service users (Carr, 2004). These factors might include a tendency of some professionals to ignore service users views or to at least misinterpret them so that rather than being enabled service user participation can result in service users feeling further disempowered. Institutional barriers need to be overcome, as does a continuing use of professional jargon which can also serve to exclude service users from the decision making process. Carr’s (2004) research found that service users often cited language gaps as a disempowering and exclusionary factor, however, once this was brought to light most professionals were more than happy to try to modify their language in order to encourage greater service user participation. Research tends to suggest, and Harold’s situation is a case in point, that greater and more effective service user participation cannot be achieved in a unitary way. There is a need for different models and levels of participation depending on the service user’s circumstances. Some service users will be so empowered by participation that they will go on to be involved in how services are delivered, still others are not able to be truly involved at any recognisable level without the intervention of a third person. Thus advocacy is an important element of lower levels of service user participation. An advocate can help to empower people in Harold’s situation because service users will then have someone who is impartial, who can inform them as to what is available in terms of services and support and who will promote their best interests among other professionals and make sure that their wishes are made known.
Harold, for example wishes to remain in his own home, he does not want to attend a day centre, neither does he want to go into residential care. Carr (2004) notes that the service user movement has been instrumental in promoting the rights of people’s entitlement to as ordinary way of life as is possible.
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Working with Service Users and Carers in an Ethical and Anti-Oppressive Manner
Society often views old people as of little use because they no longer contribute to society in the same way as when they were younger and at the same time they are greater consumers of health and welfare services (Moore, 2002). Clearly it is not always easy working with older people because they may have multiple and complex needs, nevertheless under the 1998 Human Rights Act, they are entitled to be treated with dignity and local authorities have a duty to abide by the requirements of this Act. Any move to force a person like Harold to attend a day centre when he clearly does not want to is arguably not good practice. In order to deal with a person like Harold in an ethical and anti-oppressive manner it is vital that he is listened to. If his confusion makes this difficult then again, this is where the services of an advocate could play a vital role. An advocate would be able to see that Harold’s voice was heard they would also be able to express the concerns of his family. Harold may not be aware how concerned his sons are, he needs to be informed of their concerns but this does not mean that their concern for him should take precedence over his own desire not to attend day centres or to go into residential care. The professionals involved with Harold should not be persuaded by the arguments of his family because this could result in oppressive practice. Anti-oppressive and ethical practice has to consider the rights and needs of the service user as prior to the concerns of those close to him. Ethical and effective social work should involve a thorough assessment of Harold’s needs and a care package that takes his health and his wishes into account. It should be tailored to suit his individual needs and there should be room for changes and adjustments if the care package is not to become an imposition (Kerr et al, 2005). Where a person is not fully cognisant of what is happening then anti-oppressive practice should involve the use of an entirely independent advocate. This would be advisable in Harold’s case where there could be a conflict of interests between what his family wants for him and what he wants for himself, or what the care team may consider is best for him. An independent advocate would be the best way of ensuring that the team were consistently mindful of the need to engage in ethical and anti-oppressive practice. This is often achieved by those involved being reflective in their dealings with service users.
How Reflective Practice Informs Social Work Practice
In the contemporary climate social workers are often faced with a conflict of interests between bureaucratic requirements and targets and the needs of their clients. This is unfortunate because it negates the claim that effective social work is client centred, Schonn (1991) has argued that:
Professionals claim to contribute to social well-being, put their clients’ needs ahead of their own, and hold themselves accountable to standards of competence and morality. But both popular and scholarly critics accuse the professions of serving themselves at the expense of their clients, ignoring their obligation to public service, and failing to police themselves effectively (Schon, 1991:11-12).
When people reflect on what they are doing then they are more inclined to recognise people’s individual worth and therefore to act in an ethical manner, one that works towards the best interests of the client. Ruch (2002) maintains that reflexive practice results in a deeper understanding of a person’s self and the role it has in professional practice it makes them more open to new and different ways of working and thus it is now becoming an integral part of social work practice. In Harold’s case a reflexive practitioner may find it easier to balance the conflict of interests between Harold and his sons and with the help of an advocate empower Harold in his role as service user.
Carr, S. 2004 Has Service User Participation Made a Difference to Social Care Services? London, SCIE
Department of Health (2002b) Information Strategy for Older People (ISOP) in England. London: Department of Health
Dunning, A. 2005 Information, Advice and Advocacy for Older People York, Joseph Rowntree Foundation
Jordan, B (2000) Tough Love—Implementing New Labour’s Programme: social work and the third way (London: Sage).
Kerr, Gordon, Macdonald and Stalker 2005 Effective Social Work with Older People
Moore, S. 2002 3rd Edition Social Welfare Alive Cheltenham, Nelson Thornes
Quinn, A., Snowling, A. and Denicolo, P. (2003) Older People’s Perspectives: Devising Information, Advice and Advocacy Services. York: Joseph Rowntree Foundation
Ruch, G. 2000 “Self and social work: Towards an integrated model of learning” Journal of Social Work Practice Volume 14, no. 2 November 1st 2000
Schon, D. 1991 The Reflective Practitioner: How Professionals think in Action Ashgate Publishing, Avebury
http://www.scie.org.uk/publications/positionpapers/pp03.asp Has Service User Participation Made a Difference to Social Care Services accessed 27/4/06
 http://www.scie.org.uk/publications/positionpapers/pp03.asp Has Service User Participation Made a Difference to Social Care Services accessed 27/4/06
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