Carers' Guide to Dignity in Care
It's Dignity in Action Day on 1st February 2021. Awareness days are important to raise the profile of an issue, and few would dispute that dignity in care should occur every day.
It should be something we see championed and endorsed daily with best practice shared - to inspire others. And we can be part of that. Everyday.
"Dignity Action Day highlights a more respectful way of behaving towards vulnerable people."
source: Dignity in Care
What is Dignity in Care?
At its base level, dignity is about respect. A good question to ask ourselves is - how would we feel? How would it feel if someone made all of our decisions or ignored our preferences? From "small" things like how many sugars we want in our tea, to big things like what we wear home from a hospital discharge. Is a nighty ever appropriate?
How would we feel if this was happening to us? As paid carers this mindset, is critical. As unpaid carers, this may (uncomfortably) be balanced with how much we can give and still maintain our own self respect and self-dignity. What if meeting all our cared for needs, means we ignore our own? How do we know if we have carer burnout? So true self-care (not just a wellness mantra) and boundaries are very important.
We see dignity is complex, daily in our own caring roles, and from the feedback in our community. We sadly see that there are many examples of dignity in care being completely disregarded, either through poor training, or lack of time and resources. In some cases, this appears to be systemic. Unpaid carers in our community have shared their collective wisdom and advice on supporting someone with a mental health condition - and tips for managing the system.
Depending what wishes or basic human rights have been ignored - we or our cared-for, could experience a range of emotions from frustration to anger or humiliation. There may be a long term effect on mental health too. Studies show that when people are ignored or invalidated, they stop contributing and engaging.
And how can we or our cared-for express our personalities and preferences, once engagement has ceased?
"People who are ignored eventually become overwhelmed by feelings of sadness that can sometimes lead to depression."
A great resource is the "10 Dignity Do's" from Dignity in Care.
What does good dignity in care look like?
We believe that dignity in care is summed up really well by person-centred care.
"Being person-centred is about focusing care on the needs of individual. Ensuring that people's preferences, needs and values guide clinical decisions, and providing care that is respectful of and responsive to them."
We may wish to extend this wish, to include dignity and respect for the carers too. A deeper understanding of our needs along with awareness and acknowledgement of us.
And for those of us who are the voice of our 'cared-for', that we are extended meaningful dignity of our beliefs and judgements over the care they receive. From the way your son is put into a hoist, to ensuring your mother has a shower, not a bath, if you know this would be her preference.
How carers can protect dignity
1. Pause to consider current care interactions
Pause and think about what we want, what our cared-for want (if they can tell us), what is right, and what concessions we may have made previously that don't sit well now.
A time to pause and think - is everything OK right now? Are we happy? What is niggling us?
2. Set Expectations
There is nothing awkward about setting expectations. In fact, most paid carers and professionals would appreciate the clear signposting of what, when and how care should be delivered. Remember sometimes it's the seemingly small details, that can lead to bigger problems, such as respecting that the cared-for likes their hair styled in a particular way. It's not always the big, obvious personal care moments. Details matter.
There are 'bigger' moments too though - such as hospital discharge. Sadly, we hear many stories of our cared-for being discharged in nightwear, or to cold, empty homes. It's worth knowing this so that we can be forewarned to articulate what we expect and demand for the person we care for. We can then express exactly what a dignified and respectful hospital discharge would look like to us and our cared-for.
You may like to refer to The Human Rights Act 1998, which we talk about further down.
We are allowed to challenge paid care, professionals and in fact any service we engage with - from supermarkets to hairdressers and everything in between - when we experience something that doesn't feel right or is plain wrong.
Ways to escalate
In hospital, we can raise issues with the Ward Matron or The Patient Advice and Liaison Service (PALS).
A simple chat with the person may be enough to resolve a situation. We can ask why someone does something a certain way. This often opens a conversation well.
If escalation is required, log times and experiences and always use email or letters - not just phone calls, to build an evidence log.
4. Raise Awareness
Why not share moments of 'best practise' where respect and dignity were clearly demonstrated. Praise those that 'get it', either directly or publicly, using social media to raise the profile of dignity on Dignity in Action day and on every other day of the year.
Praising success, inspires more success.
There are various legal frameworks we can refer to, when needed. These include The Human Rights Act and The Equality Act. We have given a brief introduction below, but recommend seeking legal advice if you are faced with an apparent breach.
Human Rights' Act 1998
"Human rights are the basic rights and freedoms that belong to every person in the world. In the UK, these rights are contained in the Human Rights Act 1998. If a public authority breaches or doesn't respect your human rights, you can take action under the Act."
Source: Citizens Advice
If a public authority has treated us or our cared-for poorly, we may have grounds to hold them accountable against the Human Rights' Act. Public bodies include (but are not limited to);
Private care homes funded by a local authority
Local authority and NHS funded care homes
The Human Rights, most applicable in a caring situation include:
article 8 - the right to respect for private and family life
article 3 - the right not to be tortured or treated in an inhuman or degrading way
article 5 - the right to liberty
article 2 - the right to life
article 14 - the right not to be discriminated against.
Source: Citizens Advice
The Equality Act 2010
The Equality Act 2010 is about ensuring we are not at a disadvantage or treated unfairly by public bodies and employers, based on our personal characteristics, including disability.
The Act also protects us against Discrimination by Association, that is - we may not be discriminated against because of our cared for's disability.
The Citizens' Advice, has a helpful guide to your rights.
How to take legal action
We would recommend taking legal advice. And in the first instance, the Citizen's Advice website offers support and advice on how to take legal action forward.
What do you think?
How do you ensure dignity in your care? Are there any steps you take to ensure the care provided by others is dignified and considerate? Do let us know by sending us an email.