Privacy and dignity in care
Dignity in privacy
Privacy – the right to keep important parts of yourself to yourself – is central to dignified care. And courtesy – the everyday practice of ordinary politeness – supports it.
Of course, it’s right to offer support, practical help, opportunities and advice to people who use adult social services. But a personalised service will also protect the right of an individual to defend what’s unique and special about them: their thoughts, their identity, their relationships, their personal space and their body.
Privacy and the care system
I feel I have to fit around staff times, rather then they fit around me. They are too busy … I have waited 30–60 minutes when I have buzzed for help to go to the toilet.What’s it like to live in a care home? (Healthwatch, 2017)
The call bell is always ringing, and staff respond eventually, but you have to wait some time.
A starting point for thinking about dignity and privacy is the situation of people who have to depend on family or paid carers for intimate, personal care. This may be because of health needs, physical or cognitive disabilities.
Anyone who has had a spell in hospital will recognise the idea that – for a limited time, anyway – we somehow are prepared to suspend our self-esteem. We allow clinicians to have control of our bodies until we are discharged. This only works for us if every attempt is made to protect our privacy. For example, by:
- having curtains round the bed for examinations, or intimate care
- having discussions about our symptoms or our future, held discreetly – not within the hearing of the entire ward
- avoiding ‘accidental exposure’ – from flapping hospital gowns, or rumpled sheets.
In the same way, personal care in the home or in a residential setting may either destroy a person’s self-esteem and dignity, or preserve it – by thoughtful, polite and sensitive care.
The ‘small’ things matter: people don’t want their private space invaded, or their personal needs ignored, until they make a public fuss.
Privacy for people’s relationships and attachments is also fundamental. Space to continue to meet, talk to and communicate with friends and partners in private is an important part of ensuring a person’s dignity. The right to private contact also includes post, phone calls, email and other web-based communication – through social media, for example.
No one should feel that they have to hide who they are because of stigma and discrimination. But at the same time, every citizen has the right to a private life, and what a person chooses to keep private must be respected.
Over to you
When we say things are ‘central’ to dignified care, what does that really mean? Take a few moments to look at the different sections in this guide, and think about the answers to the following questions. How does privacy relate to:
- identity, personal history and self-respect
- cultural and religious difference, and equalities
- resilience, strengths, and stigma
- wellbeing, and feeling good about yourself and your life
- appropriate communication
- autonomy – making up your own mind
- personal choice and control
- relationships, and an adult’s right to sexual expression
- technology – to support and inform, or restrict?
What does the CQC look out for?
How does the service and staff make sure that people’s privacy and dignity needs are understood and always respected, including during physical or intimate care?
CQC KLOE: C3.1
What arrangements are there to ensure people have access to appropriate space:
- in gardens and other outdoor spaces
- to see and look after their visitors
- for meaningful activities
- to spend time together
- to be alone?
Equality and diversity
The Care Quality Commission states that ‘there is a strong link between the quality of care and equality for staff’. We can only expect staff to treat people with respect if they, themselves, are respected.
Respecting equality and diversity in the care sector can make a real difference to people’s lives:
It was such a relief when the Age UK befriender enabled me to open up about being a lesbian after so many years of hiding. She didn't push but she gave plenty of positive messages that she didn't have a problem. At 78 I finally feel I'm safe to be me.Safe to be me (Age UK)
The biggest challenge is enabling people to understand that equality and diversity is the thread that runs through everything and not a standalone issue. Clear, consistent and regular communication for both staff and the people we support has facilitated this, alongside our vision and the rationale of our equality and diversity business case.Lisa Govier, Equality, Diversity and Inclusion Manager, in Equally outstanding (CQC, 2017)
Personal, confidential information about a person using a service will normally be held by the managers in any social care setting or agency and only shared with other staff in the organisation on a need-to-know basis.
The law relating to data protection was updated in May 2018 when the EU General Data Protection Regulation (GDPR) 2016 came into force. .
The GDPR sets out seven key principles:
- lawfulness, fairness and transparency
- purpose limitation
- data minimisation
- storage limitation
- integrity and confidentiality (security)
Social care managers and employers will also need to be aware of how the new regulations will affect employment practice. Skills for Care produced helpful guidance: GDPR – implications for Social Care Employers.
Privacy and disclosure
Confidential conversations with staff are important to people who use services. Research has shown that people value opportunities for one-to-one conversation and advice. (University of East Anglia, 2015)
But what are you to do when someone discloses abuse of some kind – to themselves or another person – in the course of a confidential conversation?
It’s clear that offering confidentiality can’t be the same as promising secrecy.
Concerns about abuse or neglect must always be reported in line with your internal policies – usually to your line manager.
She was just prepared to listen, she listened basically and where she felt that she needed to give some counselling, advice, whatever, she would offer it to me but she wouldn’t force it on me.A review of the literature concerning what the public and users of social work services in England think about the conduct and competence of social workers
Looking out for each other
Managers and safeguarding leads will decide whether information should be shared with external agencies. Those who make these decisions will need to be familiar with issues of consent and the law relating to information sharing.
See SCIE’s guide on Safeguarding Adults: Information sharing
Over to you
Anna moved into her current care home (where you are a care worker) three years ago. She has a number of long-term conditions, including mild dementia. Her English is not very good, but she gets by, and has made good friends among the other residents.
One morning, when you are helping her get dressed, she tells you in strict confidence that one of her friends is being physically abused by a male resident, She asks you not to say anything because she is worried this might make things worse, she’s also worried about repercussions for herself.
What must you do?
Ted lives alone in a flat, and has severely reduced mobility as a result of a traffic accident some years ago. He receives daily support from you. His only local relative is a nephew, who sometimes visits at weekends.
One day Ted admits to you that over the past few months he has given most of his savings to the young man to help him buy an expensive new car. Ted is now short of money for essentials.
What must you do?
What does the CQC look out for?
How do systems, processes and practices safeguard people from abuse?
CQC KLOE: S4.5
Technology, safety and privacy
Technological solutions are being explored in many areas of social care: commissioning, recruitment, management, training and the development of partnerships. More recently, the focus has been on the potential of reducing risk without restricting freedom.
I hear the buzzer on my iPad, and I open it up. ‘Take tablets’, it says … And it gets me thinking. I pull the calendar down from the wall and start to fill my iPad with important dates, times and reminders – Doctors’ appointment, friends’ visit, a daily reminder to take my tablets, to put the rubbish bins out. I hesitate over 17 October, Sarah’s birthday, just a few weeks away. Surely I would never forget a date as important as that. But just in case …'Somebody I used to know a memoir of living with young onset dementia’, by Wendy Mitchell, with Anna Wharton (Bloomsbury 2018)
We know about the value of technology to communication, retaining contacts and relationships, stimulating memories and supporting interests. Some people living with dementia can be helped by a digital memory as their own begins to let them down.
We have seen that some applications may be useful in relieving loneliness, and consultations by Skype may enable care or clinical staff to reach a wider group of people. It is important that all of this goes alongside a real commitment to personal, individual care and relationships based on trust.
More controversially, in some care settings, owners and managers have become interested in technology that enables them to monitor the movements of people who use their service.
New surveillance technology (called ambient assisted living – AAL) is being developed for use in private homes as well as institutions. Its use is not always wrong, but it has to be handled sensitively as well as in accordance with the law. Research has shown that acceptance of these developments – by people who use services, and the general public – depends on trust. See Using surveillance.
Is this an invasion of privacy? Have the individuals given consent? Are they fully aware of what is happening?
To begin answering these questions, let’s take a look at the following situation about Alice.
Over to you
Alice, aged 79, has dementia. She also has very severe arthritis, reduced mobility and poor eyesight. She lives in a bright, welcoming care home where there is clear signage and use of colour coding. She has her own room, with her picture on the door, and all her personal photos arranged on the walls. She also has her own bathroom.
She tends to wander at night and has fallen, which has sometimes alarmed other residents. Occasionally, she has become lost in the garden, putting herself at risk.
What can be done? The care home staff meet to discuss possible steps they can take.
- Install a movement-sensitive camera in her room, which turns on the lights and sets off an alarm.
- Install a pressure-sensitive mat beside her bed, which turns on a low-level light and sends a message to night staff.
- Install closed-circuit television (CCTV) throughout the building and grounds, which will protect all the residents.
- Give Alice a locket to wear at all times, which she can press when she is lost, to activate help.
- Move Alice from her room, to one where her movements can be more easily tracked.
- Tell Alice that, when she wakes, a carer will come to help her to the toilet, or make her a hot drink.
- Warn the other residents about her.
At a glance, you can see that some of the ‘solutions’ outlined above protect the dignity of Alice and other residents more than others. There are other questions that need to be answered. For example:
- Does Alice have capacity to consent to the intrusion on her privacy?
- Do some of the suggested measures constitute a deprivation of her liberty?
- How can Alice’s views and wishes be at the centre of what is decided?
- Take a moment to think about the different solutions you could provide after considering the above
- Respecting people’s privacy is a major part of caring with dignity. In surveys, many people who use services put privacy as their second most important requirement, after safety.
- Under the Human Rights Act (1998), we are all entitled to a private life wherever we live.
- Social care policy and practice is clear about the need to protect the privacy of the body. Loss of this protection is an automatic attack on a person’s dignity.
- Data protection legislation is clear about a person’s rights to confidentiality in respect of their personal identifiable information.
- Rights to confidentiality extend to phone calls, post, emails, social media and all web-based communication.
- The right to privacy includes the right to be alone and to be quiet, and to have private feelings, which are not necessarily explained.
- Not every situation is clear-cut. Social care professionals will need training to recognise and deal with situations which need a balanced judgement between:
- solitude and social isolation
- confidence, disclosure and safeguarding
- the right to private relationships, and potential abuse, and
- safety and intrusion.