Freedom to choose and dignity in care
Supporting people’s dignity involves recognising their equal right to freedom, choice and control over their lives.
Freedom in practice
Freedom in the UK is defined by the Human Rights Act 1998. How do we get from ideas like ‘freedom’ and ‘autonomy’ to everyday choices in adult social care?
The FREDA principles were developed specially to help clinicians and care professionals understand and use the core values of the Act. These are:
All of these are fundamental to the kind of dignified, personalised care we want for ourselves and our families. Autonomy means making your own decisions – big and small – about your own life. By extension, it means being supported (if you need and want support) and informed (if you need and want information); but not influenced, manipulated, ignored or bullied.
I just think I’d like to be involved in decisions or involved in my care, as opposed to having my care given to me. I want to be part of it. You know, I’d like, you know, the small things, like what would you like to wear or, you know, if I didn’t fancy doing something today then I don’t want to do it today.The meaning of dignified care (University of Glasgow, 2014)
Rights in roles resource pack: resident engagement Open
… ‘autonomy’ isn’t just about the big issues of abuse and neglect. ‘Low level’ autonomy matters too, including issues such as choice over food and drink.
Thinking proactively about these issues can help prevent a slippery slope of gradually lessening autonomy in relation to the bigger things in people’s lives. Ultimately this can help prevent people’s rights being threatened.
’Rights in roles resource pack: resident engagement’ (brap 2016, p 8)
What’s it like to live in a care home? Open
The staff just pull things out of the wardrobe and say “That’s nice” and put it on me. They don’t ask me what I would like to wear.
Care home resident
One carer will give me jam and bread for my breakfast. I do not like this carer. The other one will give me beans on toast or eggs or ask me what I want.
Person receiving home care
It can be hard not to ‘take over’ and do the things that the carer thinks should be done, e.g. clearing up for a client when actually they quite like all their papers in piles! Often social services think they know what is best for a client, and have not even discussed their care package with them.What’s it like to live in a care home? (Healthwatch, August 2017)
Over to you
Look at the following extracts:
Dignity: Common core principles Open
Constantly remembering that the needs and preferences of individuals are placed at the heart of their care and support, helps keep our focus where it should always be. It’s about listening, understanding, honouring and implementing the individual’s personal perspectives and preferences, thereby giving choice and control. Person-centred care and support is not something extraordinary, but is part of everyday life and should be something everybody engages with.
Dignity: Common core principles (Skills for Care, 2013)
It’s still personalOpen
Personalisation recognises people as individuals who have preferences and puts them at the centre of their own care and support. The traditional service-led approach has often meant that people have not been able to shape the support they want.
Personalised approaches such as personalised commissioning and Personal Budgets involve enabling people to identify their own needs and make choices about how and when they are supported to live their lives. A person should decide how any funding should be managed and how best to spend it to meet their needs and achieve their agreed outcomes.
Discussions about taking personalisation further are happening in a very difficult financial climate. Many local authorities have worked hard in challenging financial circumstances to give people greater choice and control. Personalisation encompasses a broad range of approaches in adult social care: self-directed support, co-production, self-management, empowering information and community capacity building.
These remain as relevant as ever and vital tools to ensure a high-quality adult social care system.
It’s still personal (Association of Directors of Adult Social Services, 2017)
Guardian partner zone Open
For people who access care and support, knowing what wellbeing specifically means in different contexts is vital to ensure that activities have the best possible outcome. ‘Likes going out’ is not enough if someone’s interpretation of that means an individual goes to a place they don’t like, with no way of leaving by themselves.
This understanding of wellbeing is particularly important when you think about how a local community might be involved in supporting vulnerable people. You have to look beyond simply what a community offers, and carefully explore what people will actually get out of it.
Guardian partner zone (Skills for Care, 2018)
Now read the following story and think about the FREDA principles. Use ideas from the examples in the drop-down boxes above.
Greg is 56. When he was a young man, he was attacked in the street at night. The head injuries he received have left him with physical and cognitive impairments. As he gets older, he has developed other health problems. He lives in a supported group home.
His favourite activity is cheering on the local football team. They’re playing at home next Tuesday night, and he’s desperate to go. This is the ‘one thing’ he wants to do!
The care staff say ‘no’ because: Tuesday is film night in the home, and if someone goes with Greg, the evening will be disrupted for everyone else. It’s too risky for him to go alone on the bus, in the dark and among the crowds. They say, ‘Enjoy the film with everyone else.’
Make a list of the difficulties or queries which arise from this choice. What are the barriers? How they can be removed so that Greg’s autonomy is protected?
What does the CQC look out for?
How do risk management policies and procedures minimise restrictions on people’s freedom, choice and control, in particular for people who lack mental capacity?
CQC KLOE: C2.2
Free to take risks
Personal budgets (PBs) have been part of social care policy for more than a decade. The idea, of course, is to put independent choice about services firmly in the hands of the person who needs them by giving them the funds to buy them. The Care Act 2014 confirmed their importance by requiring councils to assign a PB to all people who are eligible for support.
Initially there were doubts about the safety of people receiving PBs. Would they be at increased risk of abuse or manipulation? The evidence on increased risk remains unclear. In order to safeguard recipients of PBs 'Practitioners should work with care users, family members and other supporters to co-produce approaches to care delivery that minimise risks of harm as an integral part of PB support and planning' (Ismail et al, 2016).
In some areas, the PB policy has led to the growth of flexible and diverse services, offering real choice. Look at the example in this video.
What does the CQC look out for?
How are risks to people assessed and their safety monitored and managed so they are supported to stay safe and their freedom is respected?
CQC KLOE: S2
How is the process for seeking consent monitored and reviewed to ensure it meets legal requirements and follows relevant national guidance?
Preventing autonomy through ‘restraint’
Following widely-reported cases of abusive restriction, guidance from the Department of Health in 2014 tackled the issue of physical restraint in health and social care settings. This was followed by a two-year initiative, ‘Positive and safe’, designed to embed change in practice. The policy was ‘about ensuring service user and staff safety, dignity and respect’.
'Restraint' includes the use or threat of force, and physical, chemical or mechanical methods of restricting liberty to overcome a person's resistance to the treatment in question (Health and Social Care Act 2008 (Regulated Activities) Regulations 2014: Regulation 13).
A human rights issue
Restraint and ‘restrictive interventions’ remain a potential problem in all kinds of social care settings, wherever careworkers perceive the behaviour of people using their service to be challenging, obstructive, baffling or just too difficult to deal with.
Restraint, even if used to ensure someone's safety and wellbeing, must be an absolute last resort and can only be used in an emergency or with a lawful authorisation.
Instead we should be using methods such as positive behaviour support (PBS). This is a person-centred approach to people with a learning disability and/or autism, who display or are at risk of displaying behaviours which challenge.
It involves understanding the reasons for the behaviour and considering the person as a whole – including their life history, physical health and emotional needs – to implement ways of supporting the person.
What does the CQC look out for?
How does the service make sure that people’s behaviour is not controlled by excessive or inappropriate use of medicines?
CQC KLOE: S4.5
Free to choose your own way of life
People are complex, and come in all shapes and sizes. The kinds of choices we have to make are very difficult, at any age. 'Independence’ does not necessarily make people happy, as this film from the University of Birmingham discusses.
But there is plenty of evidence that people make people happy, and that the relationships they retain from their past, and form in the present, are central to their sense that life is worth living.
Practice example: The Eden AlternativeOpen
The Eden Alternative, a care home concept originating in the United States, has a philosophy based on a sort of deficit-model but with a refreshing twist.
They believe that boredom, loneliness and helplessness are the three ‘plagues’ responsible for the bulk of suffering among older people. Eden Alternative care homes are run on the basis of alleviating these three conditions.
They prioritise close relationships with staff members, providing genuine choice and control and offering a wide range of opportunities for meaningful activity.
‘Doing care differently’, (Independent Age 2017)
Contested choices: sexuality
One of the biggest single barriers to good practice in care for older LGBT people is the notion that sexuality no longer matters in old age.Safe to be me (Age UK, 2017)
[As the myths and issues below reveal], being lesbian, gay, bisexual or trans embraces many different aspects of a person’s sense of self, irrespective of age.
Some of the complexities of choice are highlighted if we think about an issue that is controversial at the best of times. The idea that some of the many thousands of older people living in care homes might have an interest in sexual activity has only really come into the open in the past decade. Given the current emphasis on the individual, on the care home as ‘home’, and life there as a real continuation of the person’s previous life, this shouldn’t come as a surprise.
While acceptance of consensual sex between older heterosexual adults and their former, or new, partners may be growing in residential care, this is not true of every care setting. There is evidence that the right of people with dementia to sexual expression is limited. And younger people with physical or learning disabilities in supported housing may well find that their autonomy stops short of intimate relationships.
And what about LGBT people? Their equal rights are protected by the Human Rights Act, equality law, and the Public Sector Equality Duty, but practice can be slow to change.
Freedom to choose is fundamental to person-centred, dignified care. But to achieve it, you have to make use of all the FREDA principles.
This section has looked at the connections between choice and autonomy, and dignity. It has shown that freedom of choice supports a person in continuing an individual path in life, according to their own ambitions and capacities.
Enabling autonomy involves understanding:
- Rights in roles: resident engagement (brap, 2016)
- Principles to practice: uphold the responsibility to shape care and support services around each individual (Skills for Care, 2013)
- It’s still personal (ADASS, 2017)
- Safeguarding service users from abuse and improper treatment (CQC)
- Deprivation of Liberty Safeguards (DoLS) at a glance (SCIE, 2017)
- Liberty Protection Safeguards (LPS) (SCIE, 2019)
- Living options (video) (University of Brighton)
- Doing care differently (Independent Age, 2017)