Healthcare

K219   Critical issues in health and wellbeing

Learning Guide 4 Caring about the individual

Dr Jonathan Leach (with contributions from Dr Sara MacKian)

This publication forms part of the Open University module [module code and title]. [The complete list of texts which make up this module can be found at the back (where applicable)]. Details of this and other Open University modules can be obtained from Student Recruitment, The Open University, PO Box 197, Milton Keynes MK7 6BJ, United Kingdom (tel. +44 (0)300 303 5303; email [email protected]).

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The Open University, Walton Hall, Milton Keynes MK7 6AA

First published 2018

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2.1

Contents

· Activity planner

· Introduction

· 1 Defining ‘care’?

· 1.1 Health and social care

· 1.2 Dilemmas in care

· 1.3 Core principles of care

· 2 Ethics in care

· 2.1 Ethical dilemmas

· 2.2 How should we care?

· 3 Power in health and social care

· 3.1 Understanding issues of power for people who use services

· 3.2 Whose responsibility?

· 4 Advocacy for people who use services

· 5 Referencing sources

· Conclusion

· References

· Acknowledgements

Activity planner

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Activity	You should allow ...	You will need
Activity 4.1: Your experience of receiving and giving care	1 hour	Table
Activity 4.2: Tricky request, Part A	30 minutes	Case study
Activity 4.2 Tricky request, Part B	10 minutes	Online poll
Activity 4.3: Caring is…	1 hour	Reading 4 Table
Activity 4.4: Observations on ethics, part A	1 hour	Text of email exchange
Activity 4.4: Observations on ethics, part B	1 hour	Text of email exchange
Activity 4.5: A challenging situation	1 hour	Case study Extracts Code of Practice
Activity 4.6: Where does the power lie?	30 minutes	Case study Table
Activity 4.7: The UK’s caring welfare state?	1 hour	Online article
Activity 4.8: Definitions of advocacy	25 minutes	Case study
Activity 4.9: Purposes of advocacy	25 minutes	Case study Table
Activity 4.10: Advocacy in practice	1 hour	Audio 2.1 Audio 2.2
Activity 4.11: Referencing sources	20 minutes	Case study Online readings

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Introduction

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It is likely that most people consider ‘care’ to be important – even fundamental – to their daily lives.

(Robinson, 2011, p. 1)

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Welcome to Learning Guide 4 in which we look at the topic of ‘care’. Care is a fundamental part of our everyday lives. We care about others, we care for others, and we are, in turn, cared for ourselves. But what do we mean by care, and what underpins it? You’ve already spent time in this block reflecting on what contributes to our sense of health and wellbeing, and how this has been linked to theoretical ideas. This week you are to reflect on what it is we are caring for and about when we think about caring for individuals. This leads inevitably to issues around values, ethics and power.

Receiving care can be associated with feelings of weakness, disempowerment or dependency. Yet having some sense of power, or even control, over how we are treated when ill and vulnerable can be crucial for developing resilience, maintaining wellbeing and ensuring recovery, therefore issues of power in caring practice are important.

The learning guide addresses three key questions:

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Key questions

· What does the word ‘care’ mean in a health and social care context?

· Why are issues of power, ethics and values important in relation to experiencing care?

· How can advocacy help people who use health and social care services?

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1 Defining ‘care’?

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Is it possible to sum up your definition of 'care' in one doodle?

View description - Is it possible to sum up your definition of 'care' in one doodle?

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What [she] wanted was to be listened to by someone who really cared about her, not the kind of relationship you get in a counselling situation.

(Informal carer quoted in Leach , 2015, p. 76)

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As the quote above, from a university student who was giving support to a friend with depression, indicates, people may have different ideas about what it means to be ‘caring’; why would a counsellor not be a caring person? In this first part of the learning guide you will consider what is meant by ‘caring’ and will have the opportunity to weigh up a tricky dilemma faced by a carer. There are three activities in this study session and you should expect it to take approximately three hours.

1.1 Health and social care

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The word ‘care’ is widely used and has a range of meanings, both as a noun and a verb, depending on the context. For example:

· ‘Would you care for a cup of tea?’

· ‘You’d better take care!’

· ‘She really cares for him.’

· ‘He doesn’t have a care in the world.’

· ‘I couldn’t care less!’

In K219 ‘care’ refers to the range of activities in health and social care services and beyond, carried out to meet a person’s needs. Such activities may be focused on curing ill-health, enabling participation in the routines of daily living, developing abilities and capacities such as the confidence and skills needed for independent living, or providing physical or psychological therapy.

Care can be about ‘looking after’ people who cannot do things for themselves such as: washing, toileting and preparing food. Care can also encompass providing emotional support for people who are distressed. Many people provide care – paid practitioners working in a health and social care job, and informal carers looking after friends and family. ‘Formal care’ suggests that the person doing the ‘caring’ is doing it as a paid worker or as a volunteer in a care-providing organisation. By contrast, ‘informal care’ comes from family, friends, colleagues and other people who know the person concerned and can often be seen as a form of ‘social support’ (Leach, 2015).

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Activity 4.1 Your experience of receiving and giving care

Allow 1 hour

Part A

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Thinking about ‘care’ in relation to the health and social care context, what examples can you think of when you have provided and received care? Enter these examples in the table below. You are invited to list your examples under the heading of ‘formal care’ and ‘informal care’. If you have never given or received care in one or more of these categories, don’t worry, just leave that section blank. Similarly, if there are experiences you would prefer not to dwell upon, then feel free to omit any part of this activity, but do still read the examples given in the discussion which follows this activity as these will help you understand the nature of ‘care’.

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Giving care

Formal care	Informal care
Provide your answer...	Provide your answer...

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Receiving care

Formal care	Informal care
Provide your answer...	Provide your answer...

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End of Question

View discussion - Part A

Part B

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Reflecting on the experiences you captured in Part A, now write a few sentences describing how you felt, at the time, about giving and receiving care. If you can’t remember how you felt at the time, record your feelings about it now. We have provided text boxes which you may wish to use to record your responses. If you have experiences you do not feel comfortable exploring then feel free to skip any part of this activity, but do read the discussion which follows it.

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My feelings about giving care:                                                             My feelings about receiving care:

View discussion - Part B

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As these activities may have illustrated, there may be many different forms of care and many different feelings associated with giving and receiving care, and some of these are explored in this learning guide. Next, you will look at how facing a dilemma in a caring situation can raise issues of values and ethics as well evoking strong feelings.

1.2 Dilemmas in care

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Everything we do, in our personal and professional lives, is underpinned by different values. Often these are so commonplace that it’s hard to identify what they might be until we come up against a challenge or dilemma where we have to make a difficult choice. People working in health and social care are faced with almost constant dilemmas in their work.

Before you start the next activity make sure you have somewhere to immediately record your impressions, thoughts and feelings as you read the case study, so that you can make a note of these as they occur. We have provided a text box which you can use for this purpose if you wish.

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Activity 4.2 Tricky request, Part A

Allow 30 minutes

Start of Question

Read the case study below and make a note of your reactions to the scenario and your immediate thoughts:

1. What was your initial reaction to the scenario?

2. Did you focus on Carl’s needs most or on Ellie’s?

3. What do you think − should Ellie help Carl?

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Provide your answer...

View discussion - Activity 4.2 Tricky request, Part A

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Case Study: Carl and Ellie

Carl is 25 years old and lives in staffed accommodation, and never shops unaccompanied. He has indicated a wish to buy, with his weekly allowance, a somewhat provocative T-shirt that has the slogan ‘Make Love not War – Ask Me for Details’, but Ellie, his key worker, feels quite uncomfortable about the idea of helping him with this request.

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Activity 4.2 Tricky request, Part B

Allow 10 minutes

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Now take part in the module-wide poll below to vote ‘Yes’ or ‘No’ to the question: ‘Should Ellie help Carl to buy the T-shirt with the slogan that he wants?' Check back occasionally during the week to see how many students have voted for each option.

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This simple scenario shows just how complex it is to do something as simple as caring for another human being. Further on in this learning guide you will have the opportunity to consider Ellie and Carl’s situation again in relation to issues of power.

1.3 Core principles of care

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It may be difficult to define precisely what care is. However, it is important to identify some core principles if a shared understanding of caring is to emerge. This is the subject of this next activity.

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Activity 4.3 Caring is...

Allow 1 hour

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Now read Reading 4 'Caring is …' either as a pdf or as a webpage .

Then look back at your responses to Activity 4.1 (both parts), and the discussion of Activity 4.1, where examples of care were listed along with feelings about them. Reflecting on these previous responses, can you relate your previous responses to the core principles set out in this reading? How are the core principles reflected in your experiences of giving and/or receiving care? How did the ethical nature of care present itself in your experience of care? Complete the table below with an example for each core principle.

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Core principles of care…	Example
A human trait	Provide your answer...
An ethical practice	Provide your answer...
An affect	Provide your answer...
An interpersonal interaction	Provide your answer...

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End of Question

View discussion - Activity 4.3 Caring is...

End of Activity

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To sum up...

By comparing your thoughts with those given by one of the module authors you may now have begun to realise that people can have different assumptions about what the word ‘care’ means in the context of health and social care, and different thoughts or experiences concerning how that care is carried out. These assumptions can influence the way people care for others and how they approach their own caring relationships. A lot of our approach to caring depends on our own ethics and values, and you will explore this in the next study session.

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2 Ethics in care

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[…] ethical and value issues thread their way through the totality of ordinary, everyday health care practice.

(Pattison and Heller, 2001, p. 32)

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Caring for people raises a number of issues – both for those providing care and for those on the receiving end. It may seem that it is really only necessary to consider ethics and values when big life-and-death issues are under the spotlight. However, as you explore in this study session, ‘ethical and value issues thread their way through the whole of ordinary, everyday health and social care practice’ (Pattison and Heller, 2001, p. 32).

The academic discipline or subject area of ethics is often referred to as ‘moral philosophy’ and is the study of ‘right’ conduct and ‘good’ character. The term ‘ethics’ is also given to the range of values and principles that are discussed, debated and applied to problems, decisions and dilemmas where people are uncertain about what to do or need guidance to ensure that they are ‘doing the right thing’.

The term ‘values’ is used in this learning guide to refer to the principles or standards that people hold in relation to how they and other people should behave and should expect to be treated. One such principle, for example, is to treat others with respect and not to favour one person over another when providing them with care.

There are two activities in this study session and you should expect it to take about three hours.

2.1 Ethical dilemmas

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Can you think of ethical dilemmas you've read about?

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Ethics and values are often perceived as being involved when decisions about life and death − such as abortion or euthanasia − are in the spotlight. By contrast, we suggest that ethical and value issues underpin the totality of everyday health and social care practice. They help both to create and to maintain an organisational ethos in which certain values, actions and attitudes are regarded as normal and implicitly desirable, while others come to be regarded as unacceptable.

When people consider what ‘being ethical’ involves, they normally think about doing the right thing or doing what is moral. You may also be familiar with the idea of ethics in terms of ‘ethical dilemmas’. Care providers typically encounter ‘ethical dilemmas’ when they have to make a choice between two courses of action that both have ethical implications (Purtilo, 1993) or when either course of action could compromise one ethical value in favour of another (Beauchamp and Childress, 2009). Care providers in all areas of practice face ethical dilemmas on a regular basis about what course of action they should take.

This section introduces four ethical principles: beneficence (‘doing good’), non-maleficence (‘doing no harm’), autonomy (‘self-determination’) and justice (‘equality and fairness’).

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Ethical principles

Beneficence − The obligation to provide benefits, and to balance benefits against risks, in the way that care is provided and people are treated. Beneficence requires the care provider to take positive steps to help others, rather than simply abstaining from (potential and actual) acts of harm.

Non-maleficence − The obligation not to inflict harm or to deprive others of the goods of life.

Autonomy − The obligation to respect the individual’s ability and freedom to be able to make decisions about their own life. It refers to the right to self-rule, free from controlling interference by others. It also refers to the requirement to ensure people are adequately informed so that they can make meaningful choices.

Justice − The obligation to treat people fairly, equally and justly. It is about the even-handed, apt use and fair distribution of care.

(The Open University, 2012)

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The following activity, based on an exchange of emails, illustrates something of the nature of everyday ethics and values and the way that these thread themselves fundamentally, but almost unnoticed, through health and social care practice.

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Activity 4.4 Observations on ethics, part A

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In this activity you will consider correspondence between the authors of an email exchange resulting from observational visits that Stephen Pattison, an ethicist, paid to Tom Heller, a general practitioner, in the latter’s surgery.

Read the first email from Stephen to Tom in which he outlines some of the issues that he thinks arise in Tom’s ordinary practice.

As you read the email pay attention to the ethical issues that Stephen identifies in Tom’s practice. Which ethical principle do they exemplify? Highlight the issues in the relevant colour or make a note in the table below.

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Principle	Example
Beneficence	Provide your answer...
Non-maleficence	Provide your answer...
Autonomy	Provide your answer...
Justice	Provide your answer...

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View discussion - Activity 4.4 Observations on ethics, part A

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Activity 4.4 Observations on ethics, part B

Allow 1 hour

Start of Question

Now read Tom’s responding email and reflect on how his reply relates to your own responses recorded in Part A. Are you surprised by Tom’s reaction?

Make a note of anything that has confirmed or changed your mind about what you previously thought (based on Stephen’s observations) about the ethical aspects of Tom’s practice. There is a text box for your notes should you wish to use it.

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To: S.Pattison

From: Tom.Heller

Subject: Re: Your observations…

Dear Stephen,

Thank you for spending time with me at my work and for the thought and analysis which you have shared in your email.

The two ‘classic’ moral dimensions you observed (the abortion request and the person worried about driving with deteriorating vision) illustrate very much the core work of general practice. I have an active debate going on in my own mind about the issue of abortion, often with vivid images involved. At the same time I have come to an externalized rationale for the way that I behave when trying to help someone requesting an abortion. My own internal doubts and unease are covered up as an essential part of the routine. There is a sort of cascade of priorities going on, and I act only in response to what I consider to be the most dominant one, viz. that I believe in the woman’s own right to choose in these circumstances. What happens to my own underlying thoughts and feelings?

The dilemma about the man’s driving ability taps into a rich seam of problems that I also wrestle with regularly. My predominant notion is that I am working as an advocate for any person who comes to consult with me. Often this can become adversarial against other official or professional agencies. For example, it might involve putting forward the best case for someone who is applying for additional benefits, or for a change of housing. I usually have no problems with bending the truth as much as it takes to get the family an extra bedroom, or egging the pudding when describing someone else’s mobility problems. In the case you observed, my duty as an individual advocate was certainly tempered with a wider responsibility. What if he causes a terrible accident because of his visual impairment? Sending him for further testing could be defended because of the importance of the decision for him as an individual... or was it me not wanting to recognise the limits of my personal advocacy for him and be seen to take the inevitable side of authority?

Which brings me on to one of the more general themes from your observations about paternalism and the use of language. I hadn’t realized previously that I call people ‘love’ all the time, or that I say ‘well done’ at the end of physical examinations. Your interpretation that this could be a sign of a superior-inferior attitude is important for me to take seriously. I suppose there are instances where the use of ‘superior’ knowledge, if not of status, may be important. It is inevitable that I have come to know more than many of the people who come to see me about the technical side of their medical care, and even of their biological internal workings. What does this do for our relative positions in a social hierarchy? And is this important? Or is it more to do with putative family dynamics? Is it within my inherent make up that I constantly, but usually sub-consciously, want to be a father figure and that medical practice is the best way to act this out? I suppose that this is where I need help to understand where the boundaries of ethics meet with psychodynamics.

In any event your observations about my general ‘style’ of working with opiate drug users forces me to think seriously about what is going on here. For a long while I seem to have been personally attracted to work with drug users and I have published various articles about my relationship with drug users (Heller 1993, 1994,1998). Is this work a manifestation of my need to exert power over the group of people with the very least possibility of exerting power back over me? The fact that you were able to observe my behaviour in respect to drug users ‘as a group’ is especially worrying for me. For years I have tried to move away from stereotypical labels for people who find themselves addicted to opiates, and here I am observed actually treating them similarly to each other and differently from others who come for help.

Finally, the points you make about the relationship between health care and budgets and how this may relate to individual episodes of ‘care’ are very apposite. I do ‘confess’ that I do take every single decision during my working life in relation to its potential cost. Money is on my mind whenever I order any test, write any prescription or refer anyone to specialist care. Furthermore, since becoming ‘executive partner’ at the practice, exploring the costs of every wider action within the medical centre is part of my explicit duty. On a regular basis I get reports of how much money I personally, and the practice in total, have spent on medication, laboratory tests, staff, referrals, etc. Understanding the balance-sheet and accountancy reports has become as much part of my working life as trying to interpret pathology reports, X-rays or letters from the hospital. For me this is another ‘sub-text’ of reality playing as a constant theme in my mind as the face to face work with individual people continues.

You can tell from my response that your visits to the surgery and your report have stimulated me in several ways. Your comments have made me observe again many elements of my practice and resolve to try to understand and improve my actions and reactions. I have been goaded to see my professional life through ‘ethical spectacles’ and I feel that some of my usual practices have been disturbed!

Yours

Tom Heller

End of Reading

Your thoughts on reading Tom’s response to Stephen:

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Provide your answer...

View discussion - Part

End of Activity

Stephen and Tom (Pattison and Heller, 2001) hoped in sharing this exchange of emails to spark similar conversations or dialogue among others in health and social care practice. Ethical and value issues in everyday life and practice are a matter of interpretation, and more than one interpretation is usually always possible. Given this uncertainty it can be important for health and social care practitioners to receive some guidance which informs and shapes their practice in relation to care. This is the topic of the next section.

2.2 How should we care?

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How can a social care worker help?

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As you have already explored, the way in which we might go about caring for someone is influenced by our own underlying assumptions and principles. The nature of the demands placed upon society to provide care is also changing. There is an ageing and diverse population as well as an increasing number of younger people living with long-term conditions that influence their own care needs and their ability to care for others. These factors are likely to pose challenges for how we all approach caring in the future.

In response to this growing need for care workers the role of the social care worker has become more clearly recognised and defined. Social care workers often work with ill or disabled people in their own homes, or within sheltered accommodation, helping them to meet their basic needs for food, cleanliness, safety and a comfortable environment. As part of this the General Social Care Council has issued a Code of Practice for Social Care Workers. You can read the Code of Practice (which is a reasonably short document) on the Social Care Institute for Excellence homepage .

The Code contains six statements describing the standards of professional conduct that are expected of a social care worker. Here, particular attention will be given to Points 1 and 3.

Point 1 looks at protecting the rights of service users.

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1 As a social care worker, you must protect the rights and promote the interests of service

This includes:

· Treating each person as an individual;

· Respecting and, where appropriate, promoting the individual views and wishes of both service users and carers;

· Supporting service users’ rights to control their lives and make informed choices about the services they receive;

· Respecting and maintaining the dignity and privacy of service users;

· Promoting equal opportunities for service users and carers; and

· Respecting diversity and different cultures and values.

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Point 3 is concerned with promoting the independence of service users.

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3 As a social care worker, you must promote the independence of service users while protecting them as far as possible from danger or harm.

This inludes:

· Promoting the independence of service users and assisting them to understand and exercise their rights;

· Using established processes and procedures to challenge and report dangerous, abusive, discriminatory or exploitative behaviour and practice;

· Following practice and procedures designed to keep you and other people safe from violent and abusive behaviour at work;

· Bringing to the attention of your employer or the appropriate authority resource or operational difficulties that might get in the way of the delivery of safe care;

· Informing your employer or an appropriate authority where the practice of colleagues may be unsafe or adversely affecting standards of care;

· Complying with employers’ health and safety policies, including those relating to substance abuse;

· Helping service users and carers to make complaints, taking complaints seriously and responding to them or passing them to the appropriate person; and

· Recognising and using responsibly the power that comes from your work with service users and carers.

End of Reading

Start of Activity

Activity 4.5 A challenging situation

Allow 1 hour

Start of Question

Although the Code of Practice emphasises the importance of respecting the rights and wishes of individual service users, what happens when what that individual wants or does could result in discriminatory behaviour on their part?

Read the case study below and then take another look at Sections 1 and 3 of the Code of Practice. Select what you think would be the two most relevant items in Section 1, and again in Section 3 of the Code for Shirley and Lilian. Then make some short notes stating how you think the issues arising from the items selected should be addressed by the care home manager.

You can record your responses in the text box provided below.

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Provide your answer...

View discussion - Activity 4.5 A challenging situation

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Case study: Shirley and Lilian

Shirley is a care worker in a care home in Birmingham. She is Afro-Caribbean and has been working in the home for three years. A new resident, Lilian, is admitted to the home. Lilian, a white British woman aged 70, had suffered a stroke and had been admitted to accident and emergency in a hospital in Birmingham and then transferred to a stroke rehabilitation hospital. Although she has a daughter living nearby, her family did not have the capacity to support Lilian in her home after her discharge from hospital and so they found her a place in residential care.

Shirley goes to Lilian’s room to introduce herself as the care worker for that section of the home. Lilian looks away from her and doesn’t reply to her. Shirley thinks that this may be that Lilian has suffered some cognitive impairment or has speech difficulties following her stroke. Shirley goes and re-checks Lilian’s notes and there is no mention of cognitive impairment or speech difficulties. Later that day, Lilian’s daughter and son-in-law visit her and Shirley hears Lilian speaking quite clearly and cogently to her relatives. However, when Lilian sees Shirley approaching them, they start to speak in hushed tones.

The following morning Shirley goes to speak with her and again Lilian ignores her. Shirley discusses this with her manager. Her manager seems very embarrassed when Shirley raises this issue and is unsure of what to say. She says to Shirley that Lilian has never met ‘coloured’ people before and did not really want a ‘coloured’ person caring for her.

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To sum up...

What you may have realised in this section on ethics and values is that the relationship between the carer and the cared-for person is affected by power dynamics. Who holds what power and how that influences their actions in relation to others can have a profound impact on care experiences and outcomes. You will explore these issues further in the next section.

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3 Power in health and social care

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Sharing my experiences with other service users helped me realise I was not alone in the way I felt. I also wasn’t judged or isolated.

(Service user quoted in Leach, 2015, p. 65)

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As the above quote indicates, service users can feel vulnerable and powerless without the right support. The examples of care that you have encountered this week should have demonstrated that power is a fundamental part of any caring relationship. The term ‘power’ can be used in a number of ways. In this learning guide it is about having some influence over things that happen. Here is a dictionary definition of 'power':

Start of Quote

· ‘The ability or capacity to do something or act in a particular way.’

· ‘The capacity or ability to direct or influence the behaviour of others or the course of events.’

(Oxford English Dictionary online, 2018)

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Sometimes the issue of power is very obvious and manifests itself physically, as in the example in Activity 4.2 of Carl having to rely on someone to help him buy the T-shirt he wants . At other times it is less obvious and hidden in the routine words, phrases and actions we use in daily interactions, as highlighted in the exchange between Stephen and Tom in Activity 4.4.

Power is at play between individuals, across social groups and within the practices of organisations and institutions. In general, having power helps us to get things done because it allows us to influence people, resources and events (Thompson, 1998).

However, when this ability to influence people turns into manipulation, force, threats or coercion, power is being used in a very controlling manner. Such abuses of power can be very difficult for an individual to deal with.

In this study session, you explore why power is important when considering health and social care and the services that are provided by those working in this sector.

There are two activities in this study session, which should take you 1.5 hours.

3.1 Understanding issues of power for people who use services

In our everyday lives, being able to make basic decisions is a key factor in maintaining wellbeing. Most adults expect to have the power to make reasonable choices around where they live, what they eat and who they socialise with, and to be treated with dignity and respect. If they don’t, for instance in the case of someone detained and given compulsory treatment under mental health legislation, they have some power to challenge this, either by directly confronting those involved in making the decision or by using legal processes linked to the right to appeal.

People who use services expect fair treatment, to be cared for with respect, and to have a degree of power over what services they are offered and how these are provided. Yet these experiences can also be frightening, unsettling and disconcerting. Often this is because of a power imbalance between those who use services and those who provide them. Power is therefore a core issue in health and social care.

As has been previously suggested in this module, the biomedical model may sometimes undermine the power of lay people to get the care they need, or even to feel valued as a person. Service user ‘power’ has emerged as a key concept in contemporary British health and social care systems. The use of terms such as ‘patient choice’ and ‘shared decision making’ suggests that people who use services might exercise some degree of power. However, how much power do people who are in receipt of care services really have?

Health and social care service providers confront issues of power routinely in their working lives. They have important responsibilities: people come to them needing care or help, and they face difficult decisions, for instance about whether to remove a child from a home, to detain a patient in hospital or to make a particular treatment available. In these types of situations, they wield some authority and status. They are also subject to other powerful forces such as the demands of their manager, the needs of the institution or the legal frameworks within which they operate.

People who use services have other forms of power despite the authority of service providers. They have the power to complain and they can make demands. They can decide to seek a second opinion, find information and support from other service users, use their own identity and status to exert power, or decide to self-care and maybe even sidestep formal service provision completely.

Power is not always clearly visible. Formal power may come through the authority of a particular uniform, title or position. Informal power may be subtle and difficult to recognise but it can also sometimes be more obvious. It can be linked to someone’s personality, self-confidence and to the way that they present themselves in social situations (Blau, 2017). In this activity you will consider again the case study of Carl and Ellie in relation to issues of both formal and informal power.

Start of Activity

Activity 4.6 Where does the power lie?

Allow 30 minutes in total

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4.6 Part A The exercise of power

Allow 20 minutes

Start of Question

Think back to Carl and Ellie. Despite her concern, Ellie decided to help Carl buy the T-shirt. Carl intends to wear it to a Saturday night social gathering that provides an opportunity for young disabled people to mix. Ellie does not feel that it is appropriate for Carl to wear this T-shirt as she thinks it will make some of the young women present feel uncomfortable. Carl, on the other hand, thinks that the T-shirt will amuse them and will be a good way of getting into conversation with women as the first stage in finding a romantic and sexual partner.

How might issues of power come into this situation where Carl’s and Ellie’s wishes are in conflict? Think of ways that Carl and Ellie might try to exercise both formal and informal types of power to determine the outcome of their difference of opinion and note your ideas in the table below.

Start of Table

	Informal power	Formal power
Carl	Provide your answer...	Provide your answer...
Ellie	Provide your answer...	Provide your answer...

End of Table

End of Question

View discussion - 4.6 Part A The exercise of power

4.6 Part B What do you think?

Allow 10 minutes

Start of Question

In Activity 4.2 you had the opportunity to take part in a module-wide poll on whether or not Ellie should help Carl to buy the T-shirt with the slogan he wants. Now that she has done so, do you think Ellie is justified in trying to prevent him from wearing it to the social event?

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View discussion - 4.6 Part B What do you think?

End of Activity

Clearly, power is an important issue to consider when thinking about providing or receiving health and social care services. Simple things can impact directly and profoundly on individuals in unforeseen ways. However, as you will have started to see in the examples you’ve worked with so far, this isn’t just about power between individuals. Anybody who is in need of using health and social care services is also situated in a much wider web of power; one that is often easily overlooked when focusing on the immediate needs of a particular individual at a particular place and moment in time. You will move on to explore that in the next section.

3.2 Whose responsibility?

This learning guide is focused on care at the level of the individual; later learning guides explore the wider relationships, organisations and societies that care is situated within. However, it is almost impossible to think about the individual without being aware of the wider organisational, political, ideological and economic forces that shape their personal life experiences. You will explore that now with the example of David Clapson.

There is one activity in this study session and you should allow 1 hour.

Start of Activity

Activity 4.7 The UK’s caring welfare state?

Allow 1 hour

Start of Question

Read this article about David Clapson who died in a state of extreme poverty. What do you think this suggests about the ethical position and values of those people who decided to use the state’s power to treat potentially vulnerable individuals in such a way? Use the box below to make a note of your thoughts about David’s situation and what might be done to prevent it happening again to others in the future. If you have a Twitter account, use the hashtag #OUK219Clapson on Twitter to share your thoughts.

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Provide your answer...

View discussion - Activity 4.7 The UK’s caring welfare state?

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David Clapson was a victim of circumstance caused by a particular institutional response towards the politics of care. If his had been a one-off case of an individual dying following benefit sanctions it would be easy to dismiss this as an individual failing. Yet in 2015 an estimated 80 people a month were dying after being declared fit to work under the same social security system (Department for Work and Pensions, 2015). It could therefore be argued that the issue was something more systemic.

Whatever your view, at its core, David Clapson’s story poses moral questions which go beyond the responsibilities of one individual for their own health and wellbeing, to the wider responsibilities of the society they live in. If we try to ignore wider issues this can result in victim blaming and the provision of services which are simply inadequate to deal with the fundamental causes behind so much ill-health and disability in society. It is important, therefore, that even at this stage of thinking about the individual and their care needs, you are always conscious of the wider context in which those individual needs emerge.

One thing that can help individuals when they are in a disadvantaged and powerless situation is the use of advocacy services to help them find a voice. This is the topic of the next section of this learning guide.

Start of Study Note

To sum up...

In this section it has been suggested that power is an important factor in the experience of giving and receiving care. That power can be exercised in both formal and informal ways. The source of power may be close to the person concerned e.g. coming from their care worker, or may be at a distance as in the case of the UK government determining how people on benefits are treated. The fact that service users can feel powerless at times suggests the need for additional support, such as that provided by advocacy services.

End of Study Note

4 Advocacy for people who use services

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Despite policy developments, such as the Care Act of 2014 for England, that appear to offer people who use health and social care services greater opportunities for choice, knowledge and participation, a number of individuals continue to be marginalised or vulnerable within the health and social care system. It can be difficult for these individuals to assert their rights and to voice their wishes. Quite often, people are not even aware of what choices are available to them. Sometimes, otherwise confident people find that a new set of circumstances makes them feel unusually powerless. Advocacy plays an important role in supporting such individuals to ‘have a voice’. It requires either some form of speaking for others, or even for yourself, in ways that put the disadvantaged individual’s aims and ambitions in the public arena. It also plays an important role in challenging power, particularly the power of health and social care professionals, systems and services.

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Definitions of advocacy:

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1

Advocacy takes many forms but is essentially about speaking up – wherever possible for oneself, but sometimes with others, and where necessary, through others.

(Atkinson, 1999, p. 5)

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Start of Quote

2

Advocacy can be described as the process of identifying with and representing a person’s views and concerns, in order to secure enhanced rights and entitlements, undertaken by someone who has little or no conflict of interest.

(Henderson and Pochin, 2001)

End of Quote

Start of Quote

3

Advocacy services assist people in getting heard and getting the services they need. Advocacy also assists services in becoming more responsible and meeting the needs of people more effectively.

(Department of Health, 2009)

End of Quote

End of Box

Advocacy can take different forms, depending on the context. These can be split broadly into informal advocacy (which might be undertaken by family members, friends, some health and social care practitioners, and campaigning groups in the voluntary sector) and formal advocacy (undertaken in the context of established advocacy organisations). Different types of formal advocacy are outlined below:

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Types of formal advocacy

Individual advocacy

This refers to a one-to-one relationship between an advocate spokesperson and their disadvantaged partner. Many advocates are volunteers, although some advocates who also organise, supervise and train other advocates may be in paid roles. Sometimes individual advocacy involves the development of an advocacy partnership that lasts months or years, which is usually described as ‘citizen advocacy’. At other times advocates will have a caseload of people for whom they are providing support on a short-term basis, to deal with specific issues. This is sometimes described as ‘casework advocacy’.

· Some individual advocacy takes the form of peer advocacy. This is when the advocate is an ‘insider’ – someone who knows through personal experience what it is to live with a particular label, or has experience of the health and social care system.

· Individual advocacy may also take the form of crisis advocacy, which deals with one-off crises, for example supporting a person being discharged from hospital, or helping someone to deal with urgent paperwork, such as mounting bills.

· Individual advocacy has also been made available on a statutory basis in certain circumstances. For example, following the passage of the Mental Capacity Act 2005, the government introduced Independent Mental Capacity Advocacy (IMCA) in England and Wales. The purpose of IMCA services is to support people who are facing important decisions about their health and social care but lack capacity and/or are unable to speak for themselves.

· Similarly, but with particular reference to people with diagnosed mental health problems, from 2009, people subject to certain aspects of the Mental Health Act 2007 in England and Wales have had access to Independent Mental Health Advocacy (IMHA) to help protect their rights when faced with compulsory treatment.

Self-advocacy

This is speaking up for oneself, most closely associated with disabled people, people with learning disabilities, and service users of the mental health care system. However, a number of self-advocacy organisations have emerged among other service user groups, such as people with HIV/Aids.

(The Open University, 2012)

End of Box

One form of advocacy is that practised by people who are experiencing, or who have experienced, similar difficulties to those they are advocating for. This is known as ‘peer advocacy’ and is featured in the next activity.

Start of Activity

Activity 4.8 Definitions of advocacy

Allow 25 minutes

Start of Question

Below is a case study about peer advocacy from the Action4Advocacy website. It features the experiences of ‘B’ who, following the onset of a severe mental health problem, was treated as an inpatient on a psychiatric ward. Please read the account, which was written by a peer advocate, and think about why B needed an advocate. Makes some notes to capture your thoughts.

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Provide your answer...

View discussion - Activity 4.8 Definitions of advocacy

End of Activity

Start of Case Study

Case study: ‘B’

When I first met B, as an inpatient, he had a variety of issues and he stated that he did not want to be discharged until all the issues and concerns he had had been addressed to his satisfaction. He had the following concerns:

· Discharge: In our first meeting, B explained that the doctors wanted to discharge him, but he did not want this to happen as he had feelings of vulnerability and symptoms of being mentally unwell.

· Housing: B wanted to be moved from the shared flat he was living in that had support from the housing association’s support worker, but the support he was receiving was not meeting his needs and he did not have a good relationship with one of his flatmates.

· Rent arrears: B had arrears because he had not received a rent card with which to pay his rent. Also, there was the potential he was going to be evicted due to non-payment of rent. The housing officer wanted B to pay a lump sum amount towards his arrears as well as a weekly charge, in addition to a weekly arrears amount. B was simply not in a position financially to do this.

· Medication: B wanted to have this revised and have an increase in the dose of one of his medications, as the symptom for which the medication was prescribed was not responding to the dose he was taking.

· Referral to long-term therapy: B had concerns that he had no idea where he stood on the waiting list to receive long-term therapy and how long the wait would be and, in the interim, what support he would receive.

· Benefits: B had his Disability Living Allowance (DLA) stopped and he did not know where to go to get support to sort this issue out.

· Complaints: B had many complaints, principally that his confidentiality had been breached while on the ward, and he also had an issue with the new care co-ordinator he had been assigned, and so wanted to change to another. He had also made a complaint about the housing officer he was dealing with for his rent arrears.

From the start of our working relationship, I informed B that it was most likely going to be a long process and the things he wanted done may not have a result he would be happy with, but that I would do my best to support him through the process. Regarding the complaints, the ones pertaining to the hospital were dealt with at B’s ward rounds; non-hospital complaints were dealt with through the various complaints procedures of the organisations the complaint related to.

As it turned out, in the period I worked with B (approximately eight to nine weeks) he got virtually every outcome he wanted, and his questions were answered. Initially, his SHO (Senior House Officer – a senior hospital doctor) agreed to postpone his discharge. Ultimately, his consultant psychiatrist agreed to allow him to stay until his housing issue had been resolved. He requested and got a new care coordinator. He made an arrangement to pay off his arrears that was acceptable to him. Because we do not deal with welfare benefits as a general rule, I notified B of the welfare rights officer at his local Community Mental Health Team (CMHT).

B’s reason for using advocacy was that he had been trying to access mental health services, and his consultant psychiatrist had promised to write him two letters of referral when he had seen her three months previously. He had his next appointment in the coming two weeks and wanted to communicate to her before the meeting the fact the above agreed course of action had not been done. B also wanted an advocate present at the meeting so that he had a witness to what occurred.

I suggested we write a letter to his consultant in which to state his dissatisfaction and also what he wanted to happen. As a result, at the meeting which I attended with B, the consultant apologised for her inaction and made the two referrals.

(Action for advocacy, 2007)

End of Case Study

You may have picked up that some aspects of this case study are about power. The case study is a story about power while other case studies are about the sheer complexity of dealing with the many issues that arise from having a severe mental health problem which can affect housing, benefits, relationships and the ability to make choices about one’s own health and social care needs. Professional practitioners can appear quite knowledgeable and confident, in contrast to one’s own sense of vulnerability, so advocacy can help service users feel more empowered in their encounters with practitioners and with other people with whom they need to interact in order to get their needs met.

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Purposes of advocacy

Henderson and Pochin (2001) suggest that advocacy fulfils a range of purposes. They argue that, among other things, advocacy has the aim of helping people to achieve the following:

· choice (acquiring the ability to pursue a choice by removing obstacles)

· access (supporting people to access the relevant information and experiences to know what their choices might be)

· justice (redressing wrongs that have been inflicted on people).

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Start of Activity

Activity 4.9 Purposes of advocacy

Allow 25 minutes

Start of Question

Building on what you've just read about the purposes of advocacy, this activity offers you the chance to develop your skills in relation to an important aspects of writing successful assignments: Using case study evidence to create or back up ideas, theories or arguments.

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Part A

Start of Question

Do you think advocacy in B’s case has fulfilled its purpose, namely to help B achieve:

· choice

· access

· justice?

Read the information in the box below to help you start thinking about how you might be able to justify your argument.

End of Question

Part B

Start of Question

The three factors mentioned at the start of this activity have been turned into statements and put into the table below for you to complete. In each case look at the case study for relevant evidence and decide whether to place it in the category of either confirming or refuting the statement. You may find examples of both, in which case you need to ‘weigh up the evidence’ to see if there is a stronger case for either confirming or refuting the statement.

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Statement	Confirming evidence	Refuting evidence
Advocacy has helped B to achieve choice.	Provide your answer...	Provide your answer...
Advocacy has helped B to achieve access.	Provide your answer...	Provide your answer...
Advocacy has helped B to achieve justice.	Provide your answer...	Provide your answer...

End of Table

End of Question

View discussion - Part B

End of Activity

Start of Box

Providing evidence to back up ideas, theories or arguments

There are two main aspects of considering evidence:

· Is the evidence relevant to the idea, theory or argument in question?

· If it is relevant, does it support or refute that idea, theory or argument?

The best way to do this is to construct statements against which the evidence can be compared.

Start of Example

Example

Statement: Advocacy has helped B to achieve choice.

Confirming evidence: B's discharge from hospital was postponed.

(For guidance on how to reference the source for the evidence in an essay, please see Section 5 .)

End of Example

End of Box

Start of Activity

Activity 4.10 Advocacy in practice

Allow 1 hour

Start of Question

Listen to the two audio clips below, in which two people talk about their experiences with advocacy. Julie Cartwright-Finch is an advocate from Dhiverse, which is a voluntary organisation that provides advocacy support to people with HIV/Aids. You also hear a service user with HIV who has received advocacy support from Dhiverse.

As you listen, make notes in response to the following questions:

· What did Julie do to support the service user as an advocate?

· Can you think of any ways in which Julie could have improved the way she worked with this service user?

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Audio 2.1 Julie Cartwright-Finch

View transcript - Audio 2.1 Julie Cartwright-Finch

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Start of Media Content

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Audio 2.2 A service user

View transcript - Audio 2.2 A service user

End of Media Content

End of Question

Provide your answer...

View discussion - Activity 4.10 Advocacy in practice

End of Activity

While advocacy might sometimes be difficult to define, the Dhiverse example shows that it emerges from people’s need for practical and compassionate support at a point when they are particularly vulnerable. Advocacy aims to enable people to make decisions for themselves wherever possible, but outcomes are highly dependent on the skills and values base of the person or organisation providing advocacy support. As such, power is an inherent aspect of the advocacy process.

Start of Study Note

To sum up...

Advocacy helps people speak up for themselves but can also involve others speaking on their behalf. The goals of advocacy are to help vulnerable people achieve choice, access and justice in their dealings with powerful others. There are various forms of advocacy including peer advocacy in which someone who has had similar life experiences, e.g. of mental health problems, advocates on behalf of another person who needs support. The final section in this learning guide helps you to develop your skills in referencing sources of information.

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5 Referencing sources

In your academic writing it is important to acknowledge your sources and reference them correctly because:

Start of Box

· 'your references show you have read around the subject

· your academic argument will be stronger if it’s supported by evidence from other people’s research (see Activity 4.9 )

· others will be able to find and use the same sources that informed your work, which in turn allows them to check the validity and authenticity of your work, as well as develop and enhance their own understanding of the subject.'

(The Open University, n.d.)

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If you are not sure about what constitutes plagiarism, check the Being Digital page with its four short activities, which take you through what plagiarism is and how to avoid it.

The OU has guidelines on how to reference materials using the Harvard system, as explained in the OU's Harvard guide to citing references .

For an introduction to referenceing, check the Being digital page with five activities on referencing different types of sources, including Open University materials.

Start of Activity

Activity 4.11: Referencing sources

Allow 20 minutes

Start of Question

Using Section 7.3 of the Harvard guide to citing references , try to correctly reference the following quote from the case study used in Activity 4.8:

‘As a result, at the meeting which I attended with B, the consultant apologised for her inaction and made the two referrals.’

Don't forget that you will need an in-text citation and an entry for the reference list.

End of Question

View discussion - Activity 4.11: Referencing sources

End of Activity

Start of Study Note

To sum up...

Correct and accurate referencing is an important academic skill. This final section has provided you with the opportunity to check that you can reference sources, including Open University materials, correctly.

End of Study Note

Conclusion

This learning guide started with the following key questions:

Start of Study Note

· What does the word ‘care’ mean in a health and social care context?

· Why are issues of power, ethics and values important in relation to experiencing care?

· How can advocacy help people who use health and social care services?

End of Study Note

In this learning guide you have explored the meaning of ‘care’ in the context of health and social care environments. You have considered various aspects of giving and receiving care and had the opportunity to relate these to your own experiences.

The case studies have demonstrated that providing care is not always straightforward and carers can face some tricky dilemmas. An understanding of ethical principles can sometimes help practitioners work out the best course of action when a difficult decision has to be made.

Furthermore, this learning guide has covered some aspects of the code of practice for care workers, which requires them to provide a fair and equitable service.

You have looked at the issue of power in relation to the provision of care and how this can have both formal and informal aspects. Individuals can seem, and may be, relatively powerless in relation to professionals, organisations and the state, but at least they may find a voice through the provision of advocacy services or through learning to practise self-advocacy.

References

Action for advocacy (2007) a4a [Online]. Available at https://www.actionforadvocacy.org.uk/ (Accessed 30 August 2018)

Atkinson, D. (1999) Advocacy: A Review, London, Pavilion/Joseph Rowntree Foundation.

Barnes, M. (2006) Caring and Social Justice, Basingstoke, Palgrave Macmillan.

Beauchamp, T. L. and Childress, J. F. (2009) Principles of Biomedical Ethics, 6th edn, Oxford, Oxford University Press.

Blau, P. (2017) Exchange and Power in Social Life, New York, Routledge.

Bubeck, D.G. (2002) ‘Justice and the labour of care’, in Kittay and Feder (eds)(2002).

Cavaye, J. (2006) ‘Experiences of hidden carers’, in Cavaye, J., Hidden Carers: Policy and Practice in Health and Social Care 3, Edinburgh, Dunedin Academic Press.

de Jonge, J., Le Blanc, P.M., Peeters, M.C.W. and Noordam, H. (2008) ‘Emotional job demands and the role of matching job resources: a cross-sectional survey study among health care workers’, International Journal of Nursing Studies, vol. 45, no. 10, pp. 1460–69.

Department for Work and Pensions (2015) Mortality statistics: ESA, IB and SDA claimants. DWP Crown Copyright.

Department of Health (2009) Valuing People Now: a New Three-Year Strategy for People with Learning Disabilities [Online]. Available from: http://webarchive.nationalarchives.gov.uk/20130105064234/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_093375.pdf (Accessed 18 July 2018).

General Social Care Council (2010) Codes of Practice for Social Care Workers, London, General Social Care Council.

Harris-Kojetin, L., Lipson, D., Fielding, J., Kiefer, K. and Stone, R. I. (2004) Recent Findings on Frontline Long-Term Care Workers: A Research Synthesis 1999-2003, Washington, DC, Institute for the Future of Aging Services.

Henderson, R. and Pochin, M. (2001) A Right Result? Advocacy, Justice and Empowerment, Bristol, The Policy Press.

Hochschild, A. (1983) The Managed Heart, Berkeley, University of California Press.

Kubiak, C. and Sandberg, F. (2009) ‘Paraprofessionals and caring: tensions between individual views and normative expectations of providing care’, paper given at the European Conference on Educational Research, Vienna, Austria, 28–30 September 2009.

Leach, J. (2015) Improving Mental Health through Social Support: Building Positive and Empowering Relationships, London, Jessica Kingsley.

McGregor, J. (2007) ‘“Joining the BBC (British Bottom Cleaners)”: Zimbabwean migrants and the UK care industry’, Journal of Ethnic and Migration Studies, vol. 33, no. 5, pp. 801–24.

The Open University (2012) K217 Glossary, K217 Adult health, social care and wellbeing [Online]. Available at https://learn2.open.ac.uk/mod/glossary/view.php?id=1075174 (Accessed 10 July 2018).

The Open University (2012) 'What is advocacy and why is it needed?', K217 Book 3: Exploring power and participation [Online]. Available at https://learn2.open.ac.uk/mod/oucontent/view.php?id=1075263&section=3.1 (Accessed 10 July 2018).

The Open University (n.d.) Developing Good Academic Practices [Online] Available at https://learn1.open.ac.uk/course/view.php?id=100043 (Accessed 29 August 2018)

Oxford English Dictionary (2018) [Online]. Available at https://en.oxforddictionaries.com/definition/power (Accessed 10 July 2018).

Pattison, S. and Heller, T. (2001) ‘Swimming in the sea of ethics and values’, in Heller, T., Muston, R., Sidell, M. and Lloyd, C. (eds) Working for Health, London, Sage/Milton Keynes, The Open University.

Purtilo, R. (1993) Ethical Dimensions in the Health Professions, 2nd edn, Philadelphia, W. B. Saunders.

Robinson, F. (2011) The Ethics of Care: A Feminist Approach to Human Security, Philadelphia, Temple University Press.

Sevenhuijsen, S. (2000) ‘Caring in the third way: the relation between obligation, responsibility and care in Third Way discourse’, Critical Social Policy, vol. 20, no. 1, pp. 5–37.

Stalker, K. (2003) ‘Carers: an overview of concepts, developments and debates’, in Reconceptualising Work with Carers: New Directions for Policy and Practice, London, Jessica Kingsley Publishers.

Thompson, N. (ed.) (1998) Promoting Equality: Challenging Discrimination and Oppression in the Human Services, Basingstoke, Macmillan.

Tronto, J.C. (1993) Moral Boundaries: A Political Argument for an Ethic of Care, New York, Routledge.

Acknowledgements

Grateful acknowledgement is made to the following sources:

Text

Activity 4.7 Article about David Clapson: © The Guardian

Illustrations

Introduction: © PeopleImages / iStock / Getty Images Plus

Section 1: © kimberrywood / DigitalVision Vectors / Getty Images

Section 1.1: Photo by Nathan Anderson on Unsplash

Section 1.2: Photo by Miroslav Kuruc on Unsplash

Section 1.3: Photo by Jonas Vincent on Unsplash

Aection 2: © Direct Selling Association

Section 2.1 (man reading paper): Photo by Priscilla Du Preez on Unsplash

Section 2.1 (stethoscope): Photo by Hush Naidoo on Unsplash

Section 2.2: Photo by Ben White on Unsplash

Section 3: Reproduced with kind permission from Power: a health and social justice issue © NHS Health Scotland and Glasgow Centre for Population Health. This work was carried out through the Public Health Evidence Network (PHEN).

Activity 4.6: Photo by rawpixel on Unsplash

Section 4: Photo by Nik MacMillan on Unsplash

Every effort has been made to contact copyright holders. If any have been inadvertently overlooked the publishers will be pleased to make the necessary arrangements at the first opportunity.

Activity 4.1 Your experience of receiving and giving care

Part A

Discussion

A module author gave the following examples which demonstrate how it is possible to be both the giver and receiver of care. How do your examples compare?

Start of Table

Giving care	Receiving care
Formal	Informal	Formal	Informal
Working with young adults with learning disabilities, helping them to get dressed, fed and take part in daily activities.	Supporting my wife when she was incapacitated by a chronic condition. Doing extra cooking, cleaning, shopping, child-care and providing emotional support.	Support for a distressing mental health problem from my GP. Regular appointments to talk through my difficulties. Prescription of medication.	Hugs and emotional support from family members, friends and colleagues when going through a mental health crisis.
Working with adults with mental health problems, helping them to recover through work therapy.	Supporting a friend who was depressed following the break-up of a relationship. Being there for him to talk about his feelings.	Treatment from a psychological therapist, enabling me to recover from a traumatic experience.	Friends offering a listening ear when I was distressed.

End of Table

Caring for someone, or being cared for, is not a neutral process and the next activity invites you to consider the feelings associated with the examples of care you identified in the previous activity.

Back to - Part A

Activity 4.1 Your experience of receiving and giving care

Part B

Discussion

What were your feelings about giving and receiving care? Were they all positive, negative or a mixture of the two? The module author who completed Part A said:

Giving care

My feelings about providing care were generally quite positive. In the case of the formal care that I provided through my work in health and social care settings, I felt pleased that I was able to make a difference to the lives of other people. It was very meaningful work in which there were needs which clearly had to be met and I seemed to be good at it. There were times when I felt emotionally and physically tired by the demands of caring, but overall I was glad to be doing it.

In the case of providing care for my wife when she was very ill, I often felt overwhelmed as I was doing this in addition to my work. I was, of course, very concerned for her, but also for the impact on our child and myself. This was very different to the care I provided in my work as I was personally involved and it was not boundaried in the same way; e.g. I couldn’t walk away from it at the end of the day. In the case of my friend, it was distressing to see him feeling so low, but I was pleased to be able to be there for him and I know he’d do the same for me.

Receiving care

At first I felt embarrassed about asking for formal help from my GP and from the local psychological services. After living with the problems for a few months, I had to admit that I wasn’t going to get better by myself and that I needed professional support. My GP was particularly caring, offering me regular appointments whilst I was on the long waiting list for specialist treatment, as well as providing regular support during and after the psychological treatment phase. Throughout this time she listened carefully to my concerns and offered sympathy, advice and reassurance. The first psychological therapist I saw didn’t really seem to get my problem and made lots of assumptions about me and then left for another job after a few sessions, leaving me feeling upset and abandoned. By contrast, the second therapist was consultative, kind and expressed reassuring confidence that the treatment would be effective.

The informal support I received from family members, friends and colleagues was wonderful. I don’t think any of this informal care alone would have ‘cured’ me, but it gave me the strength to go on and to have the best time that I could, under the circumstances.

Back to - Part B

Activity 4.2 Tricky request, Part A

Discussion

A module author said:

1 Initial reaction

For some young people, expressions of interest in sex are quite common and Carl in that sense is no different to many other men of his age.

2 Focus on Carl’s or Ellie’s needs?

As his key worker, Ellie’s role is to support Carl to lead as independent and ‘normal’ a life as possible. So perhaps she should put her own feelings aside here.

However, Ellie is also a person with her own needs and emotions. Perhaps she feels uncomfortable helping him buy this T-shirt because she has religious beliefs which she feels would be violated. Or maybe she feels such material contributes to women’s mistreatment by men and that the T-shirt might make female residents in the sheltered accommodation feel uncomfortable.

I found myself thinking initially that Carl has every right to enjoy the same things as other men of his age. Just because he may find it difficult to access goods in shops doesn’t mean he should be prevented from making his own choices. But, I also felt very strongly for Ellie. I realise it’s her job, and perhaps at work we have to put aside our own values and prejudices, but I couldn’t help empathising with her. Then I wondered whether maybe her objection was on religious grounds, and I know we have to respect people’s religions, but at the same time religious beliefs shouldn’t interfere with us carrying out roles at work which would be expected of others.

3 Should Ellie help Carl?

It’s a difficult one. I feel very strongly that oppression in all forms in society should be challenged, and messages of a sexual nature can certainly be seen as a form of oppression towards women and may be a contributing factor in the wider abuse of women in society. But stopping Carl wearing a T-shirt with a provocative slogan isn’t going to change that bigger picture!

Back to - Activity 4.2 Tricky request, Part A

Activity 4.3 Caring is...

Discussion

The same module author who contributed the examples in Activity 4.1 reflected on those experiences as follows:

Start of Table

Core principles of care…	Example
A human trait	Providing care for others met my need for meaningful connections with other human beings. Similarly, the experience of receiving care when I had a mental health problem reminded me of the kindness and concern of the people around me.
An ethical practice	Thinking back to when I worked in a mental health service, it was important to respect the confidentiality of the people I was working with and to only share information about them with selected others when there was a concern for their safety or the safety of other people.
An affect	I found that giving and receiving care was quite an emotional affair, especially in the case of informal care. It is difficult engage in a caring relationship without having feelings about the other person and about the situation that it puts me into.
An interpersonal interaction	In my experience of both giving and receiving care it is always better when there is a two-way relationship between the carer and the cared-for. One person may be in a better state than the other, but that doesn’t mean that the cared-for person doesn’t have something to contribute. It is important not to disempower the other person by doing things to them rather than with them.

End of Table

Back to - Activity 4.3 Caring is...

Activity 4.4 Observations on ethics, part A

Discussion

This is how one module author completed the exercise. You may have found different examples for the principles or matched the issues with other principles, because the issues raised can involve more than one ethical principle.

Start of Table

Principle	Example
Beneficence	Woman wanting an abortion Calling patients ‘love’	Tom is respecting the woman’s wish to do what she feels is right for her. This could be seen as being friendly or was it inappropriate?
Non-maleficence	Giving patients what they asked for	Patients could be asking for something that would provide them with what they needed to live, e.g. proof that they are ill enough to receive welfare benefits.
Autonomy	Man with deteriorating eyesight Saying ‘well done’ to patients	Tom may not want the man to lose his independence through not being able to drive. Was this reassuring or patronising? Did it emphasise the GP’s power over the patient?
Justice	Managing the financial aspects of the medical practice Interacting with drug users	Tom would have to keep budgets in mind so that some patients were not treated at the expense of others. Perhaps Tom did not treat these patients with the same respect as others? Or was his more directive approach what they needed?

End of Table

Back to - Activity 4.4 Observations on ethics, part A

Activity 4.4 Observations on ethics, part B

Part

Discussion

It is interesting to hear Tom’s own thoughts about what Stephen had written. He was clearly weighing up a lot of ethical issues while interacting with patients. Tom seems to be someone who is very much on the side of his patients while being aware that there are wider factors to consider. A good example of this was the balancing need for autonomy of the man with poor eyesight against the desire to not harm others (non-maleficence) should that man cause a traffic accident. It was interesting that Tom did not seem very aware of the way he related to his patients and of the words he used with them or to the way he spoke to drug users. By contrast, he was very aware of the impact that financial aspects of the work could have on patients.

Back to - Part

Activity 4.5 A challenging situation

Discussion

One module author responded as follows:

This is interesting and challenging because Lilian’s wishes not to be cared for by a ‘coloured’ person are not only potentially upsetting and offensive for Shirley, but also challenge the care home’s policies on equality of opportunity. At the same time I can see that, if Lilian has reached the age of 70 without mixing with people from diverse ethnic backgrounds, she might find it difficult to adjust at this late stage in her life. Although the Code of Practice is there primarily to protect the service user, I think it contains useful principles that cover the relationship between carers and those they care for.

From Section 1 of the Code of Practice I selected:

· 1.2 Respecting and, where appropriate, promoting the individual views and wishes of both service users and carers.

· 1.6 Respecting diversity and different cultures and values.

From Section 3 of the Code of Practice I selected:

· 3.4 Bringing to the attention of your employer, or an appropriate authority, resource or operational difficulties that might get in the way of the delivery of safe care.

· 3.8 Recognising and using responsibly the power that comes from your work with service users and carers.

With regard to the items from Section 1, I felt that the care home manager should not be expected to respect Lilian’s attitude or wishes not to be cared for by a ‘coloured’ person, but would need to understand the problems it raises for both Shirley and Lilian and should play an active part in helping them develop a good working relationship. She could explain to Lilian and her family the care homes values of respecting diversity and different cultures.

The items I selected from Section 3 suggest that it is important to identify and address any issues that affect the delivery of safe care. If Lilian won’t talk to Shirley, then Shirley can’t help her to get her care needs met. Although Lilian seems to be setting the agenda, it has to be recognised that the care home staff and management are in a position of power relative to Lilian and that they need to take into account that she may be feeling vulnerable in this new situation.

I would hope that Shirley’s manager will support her during this time and, through daily contact with Shirley, that Lilian will begin to recognise that she is in fact dealing with a fellow human being whose only wish is to support her in her new life in the care home.

Back to - Activity 4.5 A challenging situation

Activity 4.6 Where does the power lie?

4.6 Part A The exercise of power

Discussion

This is how a module author thought power might show itself in the situation described:

Start of Table

	Informal power	Formal power
Carl	Carl could use his personal powers of persuasion to argue that he should be allowed to wear the clothes of his choice. Alternatively he could threaten to be uncooperative with Ellie if she does not let him do what he wants to do.	Carl could appeal (or threaten to do so) to someone in a senior position to that of Ellie asking for his rights of freedom of choice to be acknowledged.
Ellie	Ellie could tell Carl directly that she is not happy about his wish to wear the T-shirt in hopes of persuading him to think again. In her behaviour she might be less friendly towards him as a warning that if he persists in his wish it will damage their relationship. Alternatively, Ellie could try to convince Carl that it is not in his best interest to wear the T-shirt. For example, she could suggest that other people will laugh at him or be less inclined to socialise with him.	As a formal carer Ellie is in a position of authority and may well be wearing a uniform which emphasises her status and that they are in a formal care relationship. This implies that she has a level of expertise and knowledge, and therefore a degree of authority – and power – in this situation. Ellie could tell Carl that she is not going to allow him to wear the T-shirt because the message on it contravenes the organisation’s code of conduct, or because she is charged with protecting other vulnerable residents from distress.

End of Table

Back to - 4.6 Part A The exercise of power

Activity 4.6 Where does the power lie?

4.6 Part B What do you think?

Discussion

Whatever the rights and wrongs of a situation such as Carl and Ellie’s, the power that each party possesses is going to influence the outcome. Given that many people who need care are vulnerable, and thus likely less powerful than those who provide care, what can be done to empower the users of services? One solution – advocacy – is discussed in the final section of this learning guide.

Back to - 4.6 Part B What do you think?

Activity 4.7 The UK’s caring welfare state?

Discussion

How you and other students responded to David’s story will partly depend on your value systems and your personal ideological beliefs about whose responsibility it is to care for vulnerable and disadvantaged individuals. I was shocked that such a thing could happen in a supposedly civilised society and how politicians could consider it ethical to pass legislation that seems to go against their duty to care for the more vulnerable members of our society. It made me wonder about the training of those who work in the welfare benefits system and how the culture of that system could be changed to promote more caring values among its staff.

Back to - Activity 4.7 The UK’s caring welfare state?

Activity 4.8 Definitions of advocacy

Discussion

B was in a vulnerable state. Both the actual experience of mental ill-health and the experience of becoming an inpatient before moving into support housing are likely to have affected his confidence and ability to speak up for himself. Furthermore, B needs to make his case to medical professionals, but may have felt relatively powerless in relation to them. B had a variety of other issues to deal with, involving different agencies, which could easily feel overwhelming without having someone alongside him to help find the best way of resolving them.

Back to - Activity 4.8 Definitions of advocacy

Activity 4.9 Purposes of advocacy

Part B

Discussion

Here is one way in which the table could be completed:

Start of Table

Statement	Confirming evidence	Refuting evidence
Advocacy has helped B to achieve choice.	B’s discharge from hospital was postponed. B made an arrangement to pay off his rent arrears that was acceptable to him.
Advocacy has helped B to achieve access.	B was referred to a welfare rights officer. ‘As a result, at the meeting which I attended with B, the consultant apologised for her inaction and made the two referrals’.
Advocacy has helped B to achieve justice.	B ‘got virtually every outcome he wanted, and his questions were answered’.	We don’t know the outcome of B getting help with the reinstatement of his welfare benefits.

End of Table

In fact some of the same evidence could be used more than once. For instance, the consultant agreeing to make two referrals could be seen as evidence of both achieving access and achieving justice.

This approach to evidence is something you can do throughout the module to help you use case studies to back up an argument or idea.

Back to - Part B

Activity 4.10 Advocacy in practice

Discussion

You probably realised that the service user you heard speaking was the same person in the story that Julie described. It is a powerful example of the work undertaken at Dhiverse. Through providing ongoing personal support to develop the man’s self-esteem and confidence, as well as highly important technical work relating to the hospital complaints process, Julie supported the service user to access the resources that would enable him to address a major injustice he had experienced. She supported him to make choices, and emphasised the importance of enabling people to make their own decisions, regardless of how difficult it may be, or how long it might take. Suppressing one’s own views is a central tenet of being an effective advocate, according to Julie. The service user also conveyed that, in hindsight, he was grateful that Dhiverse had given him the time and space to come to his own conclusions.

However, you may have also questioned the way the case was handled. Although the service user appreciated the time and space in which to come to his own conclusions, you may have wondered if things could have been moved on much more quickly. Perhaps the pace reflects a reluctance to push harder for fear of ‘rocking the boat’. Maybe if the advocate had suggested other options, things could have been resolved much more quickly. However, the transcripts suggest that Dhiverse’s advocate focused on the ‘purity’ of the person-centred advocacy process, keeping pace with the service user’s needs.

Back to - Activity 4.10 Advocacy in practice

Activity 4.11: Referencing sources

Discussion

Following the OU Harvard Guidelines of referencing, the following quote would be referenced like this:

In-text reference:

‘As a result, at the meeting which I attended with B, the consultant apologised for her inaction and made the two referrals.’ (Open University, 2018)

References list:

The Open University (2018) ‘4 Advocacy for people who use services’, K219 Week 4 Learning Guide: Caring about the individual [Online]. Available at https://learn2.open.ac.uk/mod/oucontent/view.php?id=1359923 (Accessed 12 November 2018).

Back to - Activity 4.11: Referencing sources

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Is it possible to sum up your definition of 'care' in one doodle?

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Can you think of ethical dilemmas you've read about?

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How can a social care worker help?

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This is an abstract illustration of three groups of people. The group on the left consists of three figures: a male figure holding a walking stick in one hand and holding with the other a child's hand. A second child is standing next to them. The group in the middle consists of a man and a woman. On the right are two figures which seem to resemble businessmen. one is wearing a tie and holding a briefcase, the other a handkerchief in the breast pocket. The figures are connected by several dashed lines. At the top of the image the heading reads: Power doesn't belong to any one person but exiats in the relationships between people.

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Audio 2.1 Julie Cartwright-Finch

Transcript

People living with HIV and their families and carers come to us for advocacy services around their HIV status, because they don’t feel empowered sufficiently to take those particular issues forwards themselves.

One case I’m thinking of was for a gay man who was diagnosed with HIV under circumstances in which his confidentiality was breached. He felt that he was not listened to, that he was deeply discriminated against by the staff in a particular department in a hospital. This man was late 30s, professional businessman, used to being confident in his professional and personal life, not the sort of person that is usually associated with somebody who asks for and needs advocacy services. However, what he does exemplify is the fact that no matter what your personal circumstances, there can be situations where you simply don’t feel strong enough on your own to oppose a force that is trying to disempower you. What happened in this particular case, was that I worked with him very closely to unravel his own understanding of the situation, how he felt it should have been dealt with, and what he would like done about it. That probably sounds really easy, as though that’s an easy exercise to go through, but it really isn’t.

The challenges for the advocate, for instance, can be seeing a situation that we believe to be wrong and wanting to fix it in a particular way. And, in fact, that’s the absolute opposite of advocacy. In advocacy, only the person in front of you is the one whose views matter. Your only job is to help them find the way forward that is going to satisfy their needs: to be heard, understood and taken into account. So, in fact, the sessions during which we had these conversations were quite lengthy. I have no intention of rushing people to conclusions to find swift answers. People need to process, and they need to be helped to process, in a way that’s going to lead them to resolution. Equally, what I aim to avoid is to fuel somebody’s anxiety. So we’re not there to stoke up their rage so that they go in after revenge. That’s not the job of an advocate either, and it simply won’t help them in the longer term, because the need that’s been suppressed in the situation will not really be identified. In fact, it won’t be identified. And the person needs to own what it is they’re feeling, and to feel responsible for what happens, to arrive at redress, even if they don’t feel that they personally want to take those steps.

In this particular instance we worked very closely together in trying to engage the hospital, actually, that had offended this particular man, and despite the length of time that elapsed between his first connection with the organisation and the final resolution, we maintained contact throughout at exactly that same level of making sure that he was the one setting the pace, not the hospital’s processes and procedures, and so on. Their responses were resolutely negative, I have to say, until the very last, when, in fact, everything changed. We started to have far more personal conversations and, in fact, by the end of the two years, the guy felt strong enough to be able to join in and advocate on his own behalf, which was fabulous as an outcome. He’d started where he didn’t feel able to do that, and through the process of advocacy, keeping his needs and his wishes at the forefront, letting him dictate the pace, he began to feel far more confident. He started doing a number of things that were just wonderful that nobody could have predicted right at the beginning. He contributed to the lives of other people with HIV, he contributed to the organisation, to the staff team, as well as arriving at the point where he could then speak for himself.

One important aspect of advocacy that we are challenged on by people who come to us asking for advocacy services and support with different issues, is that we are not advisors, we’re not here to tell people what to do. It’s a really strong practice for us − even sitting before somebody who is clearly deeply distressed, frequently alone, cut off from their family, friends and any other forms of support that we do not succumb to the temptation to make choices for people. That isn’t our job. In terms of advocacy in its purest sense we have to make the effort to connect with people, in the depths of their distress, and help them find the need that is really present with them through their distress, their anxiety, their anger, and help them connect that with something that’s going to help them. They need to be helped to make the choices themselves, and as unlikely as it may seem from these scenarios, it always happens. It takes patience, it takes focus. I would say it takes committed compassion to stay with somebody appropriately while they’re in a deep pit, if you like, of distress and anxiety, rage, fury, shame often. Stay with them, the answer comes. It surprises them frequently, and it surprises us, in terms of the content, the choice they actually make.

Back to - Audio 2.1 Julie Cartwright-Finch

Audio 2.2 A service user

Transcript

I was diagnosed HIV positive. After my diagnosis I sort of panicked a bit, you know, ‘What do I do?’ Although I knew a bit about HIV anyway, I just felt I wanted to speak to somebody who could reassure me, I suppose. Up at the hospital they can be great but they don’t have the time to sit down with you and basically have a chat with you, listen to your concerns. They do what they can but there’s always the next patient waiting for them to see. But an organisation like Dhiverse you can literally come in, you can have a cup of coffee, sit down and a chat. And that was what I needed when I was first diagnosed.

In the advocacy work that Julie did for me it took a burden off my shoulders, because I knew that I wanted to do something. Something bad had happened to me, I didn’t want it to happen to anybody else. To have somebody breach your confidentiality over something so sensitive is … It’s devastating. But I didn’t know where to start. So I would meet with her, to start with … probably once every week or so to get the ball rolling, to actually get the complaint in place. Because I obviously had to explain to her what had happened, what had been said, dates, times, all that sort of thing, so that she had a clear picture of what had happened, so that she could then go away and formulate a strategy, which is something I didn’t feel capable of doing myself because I didn’t know who to speak to. I didn’t know all the regulations to quote and she did. I mean, she did a letter for me, the initial letter, and it was this huge, long letter, and she quoted all sorts of legislation and, you know, everything to back up my complaint. And that was all the stuff that I didn’t know, and without that service, I don’t think I would have achieved what I achieved in the long run.

I had a meeting at the hospital with somebody quite high up and also the head of the patient and liaison service, about the complaint, and as a result there was input into their diversity policy. So it achieved quite a lot that wouldn’t have happened without Julie’s input.

Julie was always very adamant that she would not make decisions for me. She would provide me with the information, and the options, and help me to come to a decision, but it was always my decision what happened, and I think that’s a very important quality. Looking back, it’s very important that I made all the decisions myself. At the time it would have been easy for me to say to her ‘You make the decision, do what you feel that we should be doing’. But that didn’t happen. She always put the decisions on to me, which is quite difficult, but from a sense of personal growth and feeling a sense of achievement at the end of the process, that was quite important because I had input. An advocate can’t take control of the situation for you. They have to support you in what you’re doing and enable you to do what needs to be done.

Back to - Audio 2.2 A service user