Dignity in care - Research into individual Dignity Factors

• Choice and controlOpen

  Choice and control (also known as ‘autonomy’) is a key factor relating to the dignity of older people and is set within the context of human rights and equality. Dictionary definitions of autonomy include: 'the power of self direction’ and 'the ability to make independent choices’.

  Choice and control is about freedom to act, for example to be independent and mobile, as well as freedom to decide. Having choice and control over one’s life and involvement - in day-to-day living and the wider community - supports autonomy and self-esteem. For example, being given support to cook a meal will help the person to remain in control and be far more rewarding and meaningful than passively waiting for staff to cook the meal. In terms of involvement in the wider community, being supported to continue with routine daily tasks such as shopping, walking a dog or going to a place of worship, as well as involvement in community activities such as social clubs, can be instrumental in maintaining a person’s autonomy.

  The issues of choice, control, involvement and self-determination are at the forefront of current government policy. Department of Health (DH) research (DH, 2005b, DH, 2006d) found that health and social care recipients value having information to make choices and decisions for themselves, and that feeling confident and maintaining control is important. Putting People First (2007) outlined a shared vision for social care and radical reform. Autonomy - through maximum choice, control and power for people over the services they receive – is central to the values outlined in the paper. Information, advice, advocacy and support with decision-making, are all key to ensuring that people can exercise autonomy.

  Choice and control is particularly at risk where a person needs support to meet their most basic and private needs (Dignity and Older Europeans Consortium, 2004), during hospital stays (Randers and Mattiasson, 2004, Scott et al., 2003, Jacelon, 2004) and (due to the permanence of placements) in residential care (Hickman, 2004). Choice and control is more easily lost where people have impairments that affect their ability to communicate, including dementia. As one carer points out, this can have a detrimental effect for care workers as well as the cared for:

  Careworkers who are bossy, over-controlling, or who scold or argue with people with dementia, are not only compromising the autonomy of the person with dementia, but are actually creating a situation in which resultant frustration, anger or self-loathing can boil over into resistant or aggressive behaviours or actual physical violence. By breaching that sense of autonomy, care workers can actually create a dangerous situation for themselves and others. (Barbara Pointon, carer and member of Alzheimer’s Society)

  Direct payments and personal budgets can offer increased independence, choice and control for people using social care services. It is important that people have the support they need to cope with the administrative and human resource management aspects of the schemes.

  The issues raised here point to the provision of person-centred care, which can be achieved through enabling people to make their own decisions with regard to all aspects of their care. People want care that is driven by the person receiving it and not by bureaucratic systems, targets or staff priorities. A major culture shift is required to support the autonomy of people within the health and social care systems.

  In a Swedish study (Randers and Mattiasson, 2004), the identification of 'authentic autonomy’ was found to be dependent on 'full documentation of a patient’s previous history, preferences and habits’. Patients in a US study (Jacelon, 2004) found that 'consciously reviewing their previous lives and achievements’ was a strategy that helped them to maintain a positive attitude and to 'resist the demoralising effects of their situation’. My Home Life: Quality of life in care homes (Owen, 2006) asserts that maintaining a sense of identity is key to retaining self-esteem. For people with dementia, reminiscence activity has been used for many years to reaffirm the identity of individuals based on their own personal history. Life story books are also a useful tool for those working with people with cognitive impairments.

  The Older Europeans study (Cardiff University, 2001 – 2004) found that personal identity and human worth were the most often mentioned aspects of dignity. There are many components that form a person’s identity, from appearance to forms of address and, very importantly, personal history. Perhaps one of the reasons for the failure to respect dignity in care services is the failure to see the person for what they are rather than to see them in terms of their illness, condition, behaviour or disabilities. It is very important that care providers ensure that staff understand the importance of a person’s identity by ensuring time is taken to understand and know the person, their previous lives and past achievements. Over reliance on short term or agency staff may significantly undermine the development of positive relationships between staff and the people they work with.

  Advocacy

  The three key principles of advocacy are: independence, inclusion and empowerment. Advocacy services form an essential part of the inter-agency framework for the protection of vulnerable adults (DH, 2000) and the Mental Capacity Act now gives a right to independent advocacy in some circumstances.. A recent study by the Older People’s Advocacy Alliance (OPAAL) UK defined advocacy as:

  A one-to-one partnership between a trained, independent advocate and an older person who needs support in order to secure or exercise their rights, choices and interests. 
(Wright, 2006)

  The study found that:

  • older people thought awareness should be raised about advocacy
  • advocacy had been used for a number of reasons: protection from abuse; combating discrimination; obtaining and changing services; securing and exercising rights; being involved in decision-making and being heard
  • participants identified two sets of successful outcomes - those relating to tangible or material gains (for example, obtaining a service) and those bound up in feelings of greater confidence and self-esteem and of being better equipped to deal with life situations themselves.

• CommunicationOpen

  In order to maintain control and independence, people need information about what they are entitled to and what they can expect from services, and they need it at the right time. The Department of Health (DH) online survey (DH, 2006d) indicated that the way in which information is communicated, and the way in which day-to-day communications take place, will have an impact on the maintenance of dignity.

  Respect has been summarised in terms of courtesy, good communication and taking time (Davies et al., 1997, Woolhead et al., 2004, Woogara, 2005, Calnan et al., 2005, Birrell et al., 2006, Bayer et al., 2005). Older people want to be treated with respect and part of this includes the way they are addressed and the way they are spoken to. A number of studies have highlighted concerns about 'staff and family attitudes, and patronising and disrespectful ways of addressing older people’ (Bayer et al., 2005).

  In a DH survey, culminating in the report files/nowifeeltall.pdf" target="_blank" title="Link to PDF file - opens in new browser window">Now I feel tall (522kb PDF file) (DH, 2005b), good patient experience was seen as synonymous with 'having information to make choices, to feel confident and to feel in control’.

  Essence of Care (384kb PDF file) (DH, 2003c) defines communication as: 'a process that involves a meaningful exchange between at least two people to convey facts, needs, opinions, thoughts, feelings or other information through both verbal and non-verbal means, including face to face exchanges and the written word'.

  In the DH survey on dignity in care (DH, 2006c) people raised concerns about acceptable levels of English among health and social care staff and a small study into care homes (PG Professional and the English Community Care Association, 2006) found that relatives of residents had concerns about the language barrier between residents and staff caused by the numbers of overseas workers.

  Even where staff are fluent in English, strong accents may affect the older person's ability to understand, particularly for people with dementia, communication difficulties or hearing impairments. Difficulties with staff recruitment and retention in health and social care are widespread and the value of overseas workers cannot be underestimated, but it is important to ensure that they receive the appropriate support and training to ensure that their communication skills are adequate.

  Good written communication between workers is also vital to providing a consistent service in line with peoples’ needs and preferences. Again, employers should ensure that workers have adequate literacy skills in English to facilitate good communication.

  There may be difficulties where a service user is unable to speak English. Where there are no staff who speak the same language, translation services should be provided. Where the care is provided on a long-term basis, culturally appropriate services should be sought.

  Issues of continuity - a key aspect of good communication - have also been highlighted in relation to staff retention: 'Staff retention is important, residents feel more secure by seeing the same faces every day’ (PG Professional and the English Community Care Association, 2006). In a study into the views of health and social care staff on dignity, staff raised some problems associated with the use of agency staff: '... expense, a lack of continuity of care, and a lack of interest in and personal involvement with patients' (Calnan et al., 2005).

  Good communication is vital in ensuring person-centred care and this presents particular challenges for managers, in terms of recruitment, retention and training for frontline staff.

• Eating and nutritional careOpen

  Nutritional care is a consistent feature in the research on dignity and there is a profusion of information and guidance on the subjects of food, mealtimes, nutrition and hydration. Despite this there are still serious concerns about nutrition in the health and social care sectors. The Department of Health is taking these issues very seriously; in October 2007 it published a joint action plan, ‘Improving nutritional care’ , and set up a delivery board to ensure implementation. The Council of Europe’s 10 Key Characteristics of good nutritional care offers a concise summary of the meaning of good nutritional careSome of the guidance available gives conflicting advice and information, particularly with regard to specific nutritional matters. Good nutrition depends on the needs of the individual. People may be over or under eating and may have health conditions that affect their needs. Obesity is increasingly a problem and obese people can also be malnourished through eating the wrong sort of diet. Messages about ‘healthy eating’ need to be understood in the context of individual needs. ‘Healthy eating’ usually refers to the consumption of foods that are low in fat, salt and sugar but, for an older person who is at risk of malnutrition, healthy eating could mean increasing their calorie intake. It is very important to assess each person to ascertain their needs and preferences and to tailor their diet accordingly.

  See the Food Standards Agency's general guidance on healthy diet and Nutrient and food-based guidelines for UK institutions and also the Council of Europe’s 10 Key Characteristics of good nutritional care in the Helpful resources section.

  For social care staff, only a basic knowledge of nutrition is necessary in order to tackle malnutrition in older people. The fundamental point is that older people should undergo routine screening and have access to food that:

  • is adequate in amount and of good quality
  • is well prepared in a safe environment
  • meets any specific dietary, cultural and religious requirements
  • is provided in an environment conducive to eating.

  Most important of all, older people should receive the time, help and encouragement they need in order to eat the food provided.

  Much of the media attention and campaign focus to improve nutrition has been on hospitals. A report by the Patient and Public Involvement Forums entitled ‘Hospital food, could you stomach it?’ (Commission for Patient and Public Involvement in Health, 2006) found that more than a third of hospital patients have left their food uneaten, and issues were raised about choice, the temperature and presentation of food and people not receiving the help they need to eat their meals. Age Concern also published a compelling report ‘Hungry to be heard’ into the scandal of malnourished older people in hospital which strongly argues that it is a change in culture and practice that is required. It is clear, however, that the problem also exists for many older people who access social services, including residential, day care, extra care and domiciliary care.

  Older people, for a number of reasons, are more likely to suffer from malnutrition and this increases for those using health and social care services. The largest nutritional screening survey, Nutrition Screening Survey in the UK 2007 was carried out by BAPEN, the British Association for Parenteral and Enteral Nutrition. The survey found that between 19 and 30 per cent of all people admitted to hospitals, care homes or mental health units were at risk of malnutrition. The 2008 survey is available on the BAPEN website (PDF file). The UK Home Care Association estimates that up to 90,000 people who receive home care services could be at risk of malnutrition (Grove, 2008).

  Some conditions that affect people in later life, such as stroke, Parkinson’s and Alzheimer’s disease, can affect a person’s ability to feed themselves and to swallow. Even where there is no particular health condition other age related issues, such as ill-fitting dentures or loss of appetite, can affect the older person’s nutritional intake. Consideration should also be given to the impact of eating difficulties on the social aspect of mealtimes. A Swedish study (Sidenvall, 1999) noted that older people affected by debilitating physical or mental conditions strive to retain their independence and dignity when eating, and that such loss of skill can be painful and can cause embarrassment. It is important that support is provided in a discreet, sensitive and respectful manner that does not draw attention to the person’s difficulties.

  Mealtimes and nutrition are important to older people in relation to their quality of life and as a measure of the quality of service they receive. Evidence for this comes from a range of studies into different types of health and social care provision. Mealtimes and nutrition ‘have been raised repeatedly... as an opportunity to respect residents’ dignity, or undermine it’.

  Meals and mealtimes affect the quality of life for older people and are indeed the ‘Highlight of the day’ for many people in residential care (Commission for Social Care Inspection, 2006) (link). A small study into care homes found that, for residents, food is a definer of the quality of a home (PG Professional and the English Community Care Association, 2006). In the Department of Health (DH) online survey (DH, 2006d) respondents complained that not enough help is available to those who need assistance with eating. The analysis of British data from the Dignity and Older Europeans study supports this: ‘participants said patients were often not fed by nurses and this was often a problem for older people who could not feed themselves’ (Calnan et al, 2003). As the research overview found, not having appropriate help with eating and drinking can have more serious consequences for people with dementia or depression.

  Click here for further information on Research into eating and nutritional care.

• Pain managementOpen

  Badly managed or unacknowledged pain has emerged from consultation as one of the most powerful threats to older people’s dignity. In a Department of Health survey of almost 300 dignity champions, pain was rated fourth out of fifteen issues relating to dignity.

  Pain management is defined as ‘any intervention designed to alleviate pain and or its impact, such that quality of life and ability to function are optimised’ (Essence of Care, pending publication)

  A number of studies have looked at the issue of pain in older people and found that they are more likely to suffer pain due to physical conditions, eg arthritis, but that they are less likely to complain about it (Schofield and Reid, 2006). Pain can be wrongly viewed, even by older people themselves, as an inevitable part of old age (Kumar and Allcock, 2008), but if it is identified and managed it can hugely improve the quality of life of individuals.

  It is important to acknowledge that people with dementia, learning difficulties or communication problems including language barriers may be unable to say when they are in pain. People who display challenging behavior may be experiencing pain but unable to communicate it in another way (Kerr et al, 2006). Use of bank and agency staff, as well as inadequate training for night staff (Kerr et al 2008), can reduce pain recognition simply because pain related behaviours either go unnoticed or are wrongly attributed to dementia.

  Pain is often a particular issue for those nearing the end of life. At this time, the relationships between people and the care professionals that support them are very important, and good pain management is a vital component in ensuring dignity is promoted and protected. It is particularly important for people to remain in control so that they are able to prepare for death with their loved ones in a way that they choose. Careful consideration of pain relief that affects consciousness or cognitive ability is therefore essential.

• Personal hygieneOpen

  Hygiene and personal appearance were highlighted in the Department of Health (DH) online survey (DH, 2006d) as factors in maintaining dignity for older people. An analysis of UK data (Woolhead et al., 2004) from the Dignity in Older Europeans study (Cardiff University, 2001 - 2004) found that the self-respect of older people could be undermined by neglect of patients’ appearance and clothing and that, even in death, maintaining a respectable appearance is very important to people.

  A person’s appearance is integral to their self-respect and older people need to receive appropriate levels of support to maintain the standards they are used to. Personal preferences should be respected, as well as choice in how support is provided. For example, choosing when and how to carry out personal care tasks, using your own toiletries, choosing what to wear and how to style your hair and having clean, ironed clothes that fit are all ways of maintaining control and identity. Particular care should be taken in residential settings to ensure that personal laundry is treated with respect and not mixed up or damaged.

  Aspects of hygiene and personal appearance include:

  • washing, bathing, showering
  • shaving
  • oral hygiene and denture care
  • hair care
  • body and facial hair removal
  • nail care, including chiropody and podiatry
  • using the toilet and continence needs
  • dressing and undressing
  • laundry.

• Practical assistanceOpen

  The Older People’s Inquiry, 'That little bit of help' (108kb PDF file) (JRF, 2005), found that: 'older people really valued support which enabled them to live in their own homes - for example, help with cleaning, DIY, gardening, care of pets, chiropody, transport and befriending’. The absence of such ‘low level’ support can restrict independence and undermine dignity. For people residing in residential care practical assistance to support the highest possible levels of independence can also support dignity.

  Section 2 of the Chronically Sick and Disabled Persons Act 1970 placed a duty on social services to provide practical assistance to older and disabled people in need of support in their own homes. In recent years, however, there has been increasing concern about the difficulty in accessing such support. Resources for social care are increasingly stretched by the growing numbers of people needing services and, as a result, councils have raised thresholds for access to social care services. The application of Fair Access to Care eligibility criteria has frequently excluded the provision of low level support such as domestic support and practical help (Henwood and Hudson, 2008).

  “People care about the state of their homes and gardens; when their world is reduced to little more than their four walls these issues become disproportionately important.”

  (Henwood and Hudson, 2008).

  There is evidence to suggest that providing practical assistance to people improves  quality of life (Henwood and Hudson, 2008) as well as making economic sense (PSSRU, 2009). For example, adaptations to the home or assistance with small DIY jobs could prevent accidents or falls that could have long term consequences for the quality of life of the individual and may be costly in terms of health and social care service provision.

  The evaluation report of Partnerships for Older People Projects (PSSRU, 2009)  reported on significant improvements in Health Related Quality of Life (HRQoL) for people receiving practical help such as ‘small housing repairs, gardening, limited assistive technology or shopping’. The study found that people using services of this type reported:

   “a far higher change in their HRQoL than might be expected from such simple focused services. It could be argued that those services that provide simple aids and adaptations can change the ease of self‐care. A grab‐rail attached to a lavatory, bath or shower can make washing easier. Similarly, providing gardening services or making simple repairs can reduce user anxiety.”  Furthermore there was evidence of “98% probability that such projects are cost‐effective compared with ‘usual care’. [and] Commissioners putting in place such projects could be reasonably confident that only around 0.2 projects in 10 would not be cost‐effective.”

  (PSSRU, 2009)

  A clean and tidy house and a well-kept garden are important aspects of maintaining dignity in daily living and general wellbeing. Poor garden maintenance or a home in a poor state of repair can give out the message that a person is unable to cope and in some circumstances could highlight the vulnerability of an individual and increase the risk of abuse, for example distraction burglary (Thornton et al, 2003).

• PrivacyOpen

  Privacy is closely related to respect and features as a prominent issue throughout the related literature. People responding to the Department of Health (DH) online survey (DH, 2006d) raised the importance of being medically examined in a private area, having an acceptable amount of personal space and being dressed in clothes which do not expose your body. An analysis of UK data from the Dignity in Older Europeans study (Woolhead et al., 2004) found that self-respect can be undermined 'by exposure, lack of privacy in personal care, and mixed wards’.

  Eliminating mixed-sex accommodation for hospital inpatients has been difficult to implement. The Department of Health states that 97 per cent of NHS trusts meet single-sex accommodation standards but this may include those with divisions within wards and patient groups continue to campaign on the issue (DH - Privacy and dignity).

  The National Service Framework for Older People (DH, 2001) acknowledges that privacy can be undermined in hospital, and Essence of Care (384kb PDF file) (DH, 2003c) has a series of benchmarks relating to the subject. A recent study (Woogara, 2005) found that Essence of Care benchmarks were not being met and that: 'the 'little things' which would protect the patients’ privacy and dignity were often forgotten’. Aspects of privacy include:

  Modesty and privacy in personal care - ensuring that people receive care or treatment in a dignified way that does not embarrass, humiliate or expose them. The desire for single-sex wards has been highlighted in a number of studies (DH, 2006d, Woolhead et al., 2004, PRIAE/Help the Aged, 2001, Cardiff University, 2001 - 2004) and is of particular concern to some minority groups (PRIAE/Help the Aged, 2001).

  Confidentiality of treatment and personal information - ensuring that personal files and records and financial information are kept confidential, and only shared with the consent of the person concerned. Discussions about a person’s well-being, treatment and any personal information should be carried out where others are unable to hear. Conversations of a very confidential nature, for example about medical diagnosis or toilet arrangements, should be discussed in a private space and not with only a curtain between the individual and others. Privacy of conversation with family and friends should be facilitated through access to a private room or telephone and personal mail should be received unopened. Particular care should be taken to ensure privacy when using interpreters. In small communities the person and interpreter may know each other or have common friends. This can cause a great deal of anxiety in terms of confidentiality and alternative solutions should be sought. A study of people who use interpreting services (JRF, 2004) found that many people prefer to use family members or to have the same professional interpreter on each occasion so that trust can be built.

  Privacy of personal space - staff should gain permission to enter and demonstrate respect for personal belongings and boundaries. It is important to achieve a balance so that vulnerable people are not either isolated by privacy policies or put at risk, for example through providing privacy for personal and sexual relationships. My Home Life: Quality of life in care homes (Owen, 2006) reports that: 'offering couples space for intimacy and privacy and using skilled observation and emotional literacy to understand their needs will help residents feel they have the right to express their sexual identity' (Forte et al., 2006, Heymanson, 2003, Springfield, 2002). Staff need appropriate training to ensure relationships can be positively, respectfully and safely supported.

• Social inclusionOpen

  Older people have repeatedly identified social inclusion as important to their quality of life and independence. Opportunities to participate, and make a positive contribution to community and society, are integral to autonomy and therefore dignity. In the Department of Health (DH) online survey (DH, 2006d) older people raised a number of issues and concerns including lack of social contact with others, lack of activities and wanting to feel needed and to have a purpose.

  In research that formed the basis of ''A sure start to later life  ' not working(SEU / ODPM, 2006) older people 'stressed the importance, amongst other things, of good relationships with family and friends, of having a role, feeling useful, and being treated with respect’. The Social Exclusion Unit (Social Exclusion Unit and Office of the Deputy Prime Minister, 2006) defines social exclusion in terms of its causes such as 'unemployment, discrimination, poor skills, low incomes, poor housing, high crime, ill health and family breakdown’. The English Longitudinal Study of Ageing measured social exclusion across the following dimensions:

  • social relationships (contact with family and friends)
  • cultural activities (such as going to the cinema or theatre)
  • civic activities (such as being a member of a local interest group, undertaking volunteering or voting)
  • access to basic services (such as health services and shops)
  • neighbourhood exclusion (feeling safe in your local area)
  • financial products (such as a bank account, or long-term savings)
  • material consumption (such as being able to afford household utilities and an annual holiday)

  (Barnes, 2006)

  The Cabinet Office acknowledges that there is no clear definition of social exclusion but offers the following: Social exclusion is a complex and multi-dimensional process. It involves the lack or denial of resources, rights, goods and services, and the inability to participate in the normal relationships and activities, available to the majority of people in a society, whether in economic, social, cultural or political arenas. It affects both the quality of life of individuals and the equity and cohesion of society as a whole. Levitas et al. (2006)

  Age discrimination, sometimes alongside other forms of discrimination, can contribute to the social isolation of older people. The risk of social exclusion is greater for people living alone (DH, 2006f) and the very elderly (Barnes, 2006). Some life events, such as bereavement, loss of work or poor health can also increase the risk (Office of the Deputy Prime Minister, 2006).

  The research also associates ageism and other forms of discrimination with the lack of respect for older people and, clearly, there are implications here for wider society. Intergenerational community work has been suggested as one way of tackling ageism.

  Employment promotes social inclusion and older people particularly, because of retirement, age or ill-health may be forced to stop working. Restrictions to existing age discrimination laws allow employers to compel people aged 65 or over to retire. The European Court of Justice ruled, in 2009, that this is lawful. The Government have committed to review the default retirement age this year and there is continued pressure from the Equality and Human Rights Commission for the government to abolish the through the Eguality Bill.(Equality and Human Rights Commission 2009)The resource allocation for older people in social care also reflects age discrimination and can restrict the provision of activities that promote social inclusion. For example, the cost of residential placements is generally much lower for older people for disabled adults of working age and this impacts on the ability of the service to support people to participate in community activities.

  My Home Life: Quality of life in care homes (Owen, 2006) argues that: 'feelings of helplessness and powerlessness associated with chronic disability affect motivation levels and are compounded if there is a lack of structure and meaning to the day. These feelings can be alleviated by a motivating and challenging environment with opportunities to socialise and become involved in meaningful activity.’ Contact with local community centres, schools and volunteer organisations can support this, as can person-centred activity planning.

  The promotion of social inclusion features prominently in current policy across government departments. The White Paper, 'Our health, our care, our say' (DH, 2006f) acknowledges that social exclusion, isolation and loneliness can contribute to the incidence of mental illness, particularly depression. The report emphasises the need for a universal approach to inclusion from services such as transport, health and housing. The government is clear that the involvement of members of the community with public bodies is vital to the implementation of its policies. 'Firm foundations'  (Home Office, 2004) a report on capacity building, sets out a framework for development. The report defines community capacity building as: activities, resources and support that strengthen the skills, abilities and confidence of people and community groups to take effective action and leading roles in the development of their communities.

  The Joseph Rowntree Inquiry (JRF, 2005) identifies: ’a need to engage locally with volunteers and like-minded organisations to tap the potential of local communities and community-development approaches’. The involvement of older people at all levels of service planning and delivery is an important part of getting it right. In addition, the participation of older people will provide meaningful activity, community participation and a civic role for the individuals involved. The inclusion of people from diverse communities will also bring a range of knowledge and expertise to service planning and delivery. Local authorities need to ensure that support is available to local communities to enable individuals and groups to develop the skills and confidence to facilitate active participation.

What the research says about...

• WhistleblowingOpen

  It takes a great deal of courage for an individual to raise concerns about poor practice or abuse within an organisation. Where organisational culture tolerates bad practice an individual challenging this can become the focus of attention (Dadswell, 2000). They may be labelled with negative words and seen as the wrongdoer. Members within the organisation may see the whistleblower as a traitor (Greene, 2004). Fear of legal action and compensation claims can deter organisations from acknowledging and dealing with whistleblowers’ disclosures.

  As Martin (Martin, 1999) points out: 'the organisation has all the advantages. It has far more money, unlimited time and usually little individual responsibility. It can stall, resist giving information, hire expensive lawyers and mount attacks.’ But there are many cases where people have chosen not to blow the whistle - with disastrous results. For example, witnesses in the Bristol heart scandal said they had been afraid to come forward even though they knew there was something wrong (BBC, 1999). In April 2009 the case of Margaret Haywood reinforced the dilemma for employees. Margaret carried out covert filming for a television documentary to expose the neglect of elderly patients. She felt that her managers would not listen and that her actions were “the only way to get something done about the complaints which were received”(Nursing Times 2009)  Margaret was found guilty of misconduct and struck off by the Nursing and Midwifery Council (NMC) but, after a public campaign, she was reinstated and given a one year caution. Although Margaret was ultimately vindicated, by the public and her peers at least, this case demonstrates that whistleblowing still poses a significant risk to the whistleblower.

  Investigations into cases of abuse invariably lead to calls for the implementation of whistleblowing policies. It is vital that whistleblowers are supported and protected and that enabling whistleblowers to come forward is seen as an aspect of excellence within organisations.

  Attitudes towards whistleblowers have changed over time (Benn, 2000), but a lot still needs to be done to ensure that workers feel safe enough to air concerns. For organisations there are clear advantages to supporting whistleblowers - these can include safeguarding the safety of staff and the people using the service as well as the organisation’s reputation (Holihead, 2000). Failure to implement appropriate policies will lead to lack of public confidence.

  New members of staff are often in a position to be more objective than existing staff members, who may have become accustomed to certain practices over a period of time (Dadswell, 2000). It is therefore important to ensure that new employees are supported to feed back on what they observe and that whistleblowing is covered during induction.

  If whistleblowers are protected and viewed in a positive rather than negative light, then more people will be willing to disclose concerns about poor practice. The consequence of this will undoubtedly be better protection for people using health and social care services.

  Since July 1999 whistleblowers have been protected by the Public Interest Disclosure Act 1998. The Act offers protection to public, private and voluntary sector workers from victimisation in employment following a disclosure which fits into any of the following categories:

  • a criminal offence
  • the breach of a legal obligation
  • a miscarriage of justice
  • a danger to the health and safety of any individual
  • damage to the environment
  • deliberate covering up of information tending to show any of the above (Health and Safety Executive, 2006).

  Further information is available on the Health & Safety Executive's Whistleblowing website. Where there is no threat of immediate danger, whistleblowers should protect themselves by ensuring they prepare carefully to make a disclosure. It may help to gather evidence (for example, record dates, times and the names of any witnesses), seek support and take external advice, possibly from a voluntary advice service or union.

  Public Concern at Work (PCaW) is an independent organisation that offers support to whistleblowers. It was established in 1993 'in response to a number of disasters and public scandals. Almost every official enquiry revealed that staff had been aware of the dangers but had not felt able to raise the matter internally or to pursue it if the concern was not taken seriously’ (Van Den Hende, 2001). The organisation supports both individuals and employers by:

  • offering free, confidential advice to people concerned about crime, danger or wrongdoing at work
  • helping organisations to deliver and demonstrate good governance
  • inform public policy
  • promote individual responsibility, organisational accountability and the public interest.

• End of life careOpen

  For people nearing the end of life and needing health and social care, dignity is vitally important. Government policy has increasingly drawn attention to this area of practice and published the End of Life Strategy in 2008.

  Research has shown that dignity is threatened by suffering, and dying with dignity involves – amongst other things - control of suffering, maintenance of a respectable appearance and not dying alone (Woolhead et al 2004). People's choice about how and where they die is very important to them, and maintaining control for as long as possible is key to maintaining dignity. In particular, care should be taken to ensure people’s needs are met in relation to their culture and religious and spiritual beliefs, failure to do so could cause unnecessary, and in some cases extreme, distress.

  Advance care planning enables people to plan their future care and treatment and can offer greater choice and control where people may lose capacity to make some decisions. An advance care plan can include preferences and wishes with regard to future care as well as advance decisions, which would be legally binding, to refuse all or some forms of medical treatment if they lose mental capacity in the future. A person could also appoint someone to have Lasting Power of Attorney to make specific decisions on their behalf if there comes a time when they are unable to do so themselves.

  The task of enabling staff to support people who are dying should not be underestimated, 'knowing how to provide comfort requires insight into the whole landscape of a dying patient's experience” (Chochinov, 2006). People who are nearing the end of life may wish to share their thoughts and fears about death, indeed some people may express a desire for death. As friends and peers die, the impact of death may be experienced more frequently. To some extent death remains a taboo subject and people around the dying person may feel uncomfortable with discussing it.

  Death is inevitably nearer for older people and it is therefore an issue for many people providing health and social care services for this group. It may be easy for staff to overlook the personal experience of those they support who are nearing the end of life, reasons for this may be, for example, avoidance of reflection on one’s own life and the need to properly prepare for death, the fear of death and the emotional impact. The concept of 'fear of future self' (Nelson, 2005) may act as a barrier and affect the ability of staff to empathise with the dying person.

  Staff need to receive training and support to enable them to listen effectively and respond appropriately to those they support. The End of Life Care Strategy (link) states that 'End of life care should be included in induction programmes, in continuing professional development and in appraisal systems.' (DH, 2008)

  Retention of identity is key to maintaining dignity and particularly important to people at the end of life as they evaluate their life and achievements. A Canadian research group led by Chochinov has developed a ‘Dignity Model’ for identifying threats to dignity for terminally ill people. The model draws attention to illness-related issues, psychological and spiritual issues and external influences that affect dignity (Chochinov 2006). The Dignity Therapy developed by the group is based on the principle that recognising patients as people with histories and legacies to leave promotes their dignity and reduces distress.

  ‘Although every individual may have a different idea about what would, for them, constitute a “good death”, for many this would involve:

  • being treated as an individual, with dignity and respect;
  • being without pain and other symptoms;
  • being in familiar surroundings; and
  • being in the company of close family and/or friends.’ (DH, 2008)

  Research has identified six overarching elements relating to the end of life:

  • burden – distress at having to depend on others
  • suffering – anguish and distress
  • hope – sustained meaning or purpose in life
  • dignity – self-esteem, respect, wellbeing and pride
  • decision-making – planning for change and end of life
  • control and autonomy. (Gruenewald and White 2006).

  These elements give direction as to how health and care professionals can best support people who are dying. Practice should aim to enable people to keep control and to minimise suffering through good clinical and social care. The feeling for the individual of being a burden, whether it is real or perceived, will be lessened by the provision of good support for carers. This should include carers assessment, involvement in decision making, information about the person’s condition and about services, practical and emotional support and bereavement support (DH, 2008).

• ComplaintsOpen

  Many people find it difficult to complain for a number of reasons. It may be difficult for them to find their way around the system, for example because English is not their first language, or because they have a cognitive impairment. Some people are reluctant to complain because they worry that their service may be withdrawn. They may fear being seen as a 'trouble maker’ and being treated differently as a result of their complaint; this concern was raised repeatedly in Healthcare Commission inspections (Healthcare Commission et al., 2006).

  Being able to complain without fear of retribution was also raised in the Department of Health (DH) online survey (DH, 2006d), alongside a need for clear and simple complaints procedures. It may be particularly difficult to make a complaint about someone providing a face-to-face service on a daily basis - for example a home-care worker or residential staff - particularly if the complaint only applies to one aspect of their otherwise good work.

  As part of the drive to ensure dignity in care the Department of Health has issued new regulations on complaints procedures for adult social services. The new procedures emphasise the significance of providing an accessible, customer-focused service that encourages people to speak out about their experiences - both good and bad - and to challenge poor practice when they come across it.

  In addition, timescales for resolution at all stages of the process have been shortened and the independent review panels now have a more precise and focused brief to ensure less variation between local authorities and a more consistent response to complainants against measurable frameworks. The new procedures, Learning from Complaints, came into force on 1 September 2006.

  There is also guidance for NHS complaints managers: 'Supporting staff, improving services - guidance to support the implementation of the NHS (complaints) amended regulations 2006'.

  There is a commitment in the White Paper, 'Our health, our care our say' (DH, 2006f), to introduce a single complaints process covering both health and social care in the near future.

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