Rights Made Real – Addressing fears around human rights

Am I violating this resident’s human rights? The balance between encouragement and enforcement

One member of staff was anxious and asked, “Am I violating human rights if the resident says they do not want to take part in an activity but I encourage them to do it because I know they have enjoyed it in the past?”

We explored this scenario and balanced out the person’s right of self-determination: (article 8 of the Human Rights Act 1998 which covers personal autonomy) coupled with the staff’s knowledge that the individual’s diagnosis of dementia can make her apathetic but when she joins in she really enjoys the activity and it gives her a boost for the rest of the day and improves her mental and physical wellbeing.

The staff member said that she would never force the resident to go but would encourage her and observe the resident and if they were getting anxious or upset during the activity, she would support the resident to leave. However, this has never happened and she has always enjoyed herself when she has attended.

We also explored how our approach can have a profound effect on how someone perceives the idea of doing an activity – a fresh face can help if someone has been having an unsettled morning with the same support worker. We also spoke about never assuming – just because someone has said no 100 times in the past, we could naturally assume they don’t want to try an activity – or by having an “this is the way it has always been” attitude we can hinder someone’s right to personal choice of trying new experiences. It is very important to remember to be curious and never assume you know what a person’s reaction will be, they might just surprise you. This is as much true of relationships in care as it is in everyday life. What remains important is that the encouragement is balanced and proportionate and never gets to the stage of enforced coercion, bullying and manipulation. To achieve to our potential and to gain psychological and physical integrity is a core part of the realisation of our Article 8 rights.

The idea of balance and proportionality lies at the heart of most caring and support relationships. We often become who we are and reach our potential through the encouragement and support of others to go that extra mile. We concluded in this case that gently encouraging someone to do an activity you know they have enjoyed before is not a violation of their human rights. PHEW! However, staff need to remember that the person has the right to not participate too if they really show they do not want to or are not enjoying it.

The staff team said this was really bothering them and they were happy now that they had the knowledge and confidence that they were working within the right ethical boundaries

Wellbeing 1.25: “I can choose to have an active life and participate in a range of recreational, social, creative, physical and learning activities every day, both indoors and outdoors.”

1.26: “I can choose to spend time alone.”

 

Rights Made Real – What has helped the projects link their practice to human rights?

Linking practice to health and social care standards

One project looked at the health and social care standards and thought how they link in in terms of anticipatory care planning. They agreed that no resident should be discriminated against in terms of the services available to them due to status as a care home resident or a diagnosis of dementia, by exploring the preference of final days being spent at family home and how the care home could help to facilitate this, upholding their right to private and family life (article 8 of the HRA 1998).

Dignity and Respect - 1.2: “My human rights are protected and promoted and I experience no discrimination.”

Workshops as a forum to explore basic human rights knowledge and dilemmas in practice

Respecting resident’s human rights at the end of life

The art of balancing the resident’s last wishes with that of their relatives and how to do this sensitively came up on several occasions.

As a support provider we should always respect a resident’s last wishes even when they look different to our own views and cultural beliefs. We should always support the person to achieve their wishes even if it is not what their family want. (Right to freedom of thought, conscience and religion article 9 of the HRA 1998). An example the group discussed was of a resident that was very vivacious in life but wanted a private funeral. We explored how that made staff feel and they came to their own conclusion that they had to respect the resident’s wishes to privacy even though it was difficult to know they could not attend her funeral.

Feedback from workshops

Some of the managers gave us feedback on how their staff about the human rights in practice workshops.

 

‘It was an absolute pleasure having you come along to [care home] and deliver [human rights workshop] to my staff. It was great success - the staff are still regaling about it and how it sparked memories and made them reflect on their practice past and present’.

 

The manager commented that the workshops and input have changed the attitudes of staff from, “this is an awkward conversation that neither party would like to have, with a tick box form, to an attitude of .. wanting to personalise the process to help staff find out what is important to the resident, their relatives and learn how to help to include them to live a life they want to right up until the last days and hours”.

Rights Made Real – Dignity within activities

Dignity within activities

Dignity is an inherent principle of human rights legislation with its beginnings seen many times throughout the UN Universal Declaration of Human Rights document. Indeed Article 1 of the Declaration states that:

‘All human beings are born free and equal in dignity and rights.’

Dignity is therefore tightly connected to humanity, freedom and equality from birth. It can be most prominently seen to be included in article 3 of the Human Rights Act 1998 – the right to freedom of torture and inhumane or degrading treatment. Having an awareness of what could be compromising a person’s dignity or identity is vital in being able to deliver high quality care and support that is right for that individual, especially for those who have protected characteristics for example a diagnosis of dementia.  

 

With help from the learning partner Tamsin, the staff have been practising their observation skills to notice a resident’s demeanour during an activity and recognising the extra support someone with a visual impairment may need and what they sensory stimulation they benefit from.

“There was a vibrating coming from a lamp and we thought this was too loud – the resident said she liked it, she could feel her feet on the floor, felt grounded. “

Staff have realised from this it is always good to check out with residents as they are the experts of their own experience. This builds trust between staff and the resident, addressing the power imbalance and promoting the level of control they have over their lives.

Wellbeing: “I am supported to make informed choices, even if this means I might be taking personal risks.”

A member of staff sharing what they could see during a Hawaiian themed day, what was around them, the smells and the colours of the garlands. One resident said

‘I really enjoyed that, I could visualise myself on the beach’.

“This resident never compliments us and it really helped me realise how important it is to explain the resident’s surroundings to them and to ‘be their eyes’. I will do this more now with other residents.”

Compassionate: 2.8 “I am supported to communicate in a way that is right for me, at my own pace, by people who are sensitive to me and my needs.”

When thinking about activities of daily living in the project around anticipatory care planning, staff take care not to exclude people as their physical condition deteriorates and still help them to have control over their decisions as much as possible. When dignity might be compromised then activities come to the person in their room and are specifically tailored to what they like and what helps to relax them. Often this focus towards individual activity in bedroom is driven by the presence of family who want to spend time with the person which often happens in the privacy of their own room and meets a host of the person’s human rights whilst working to the health and social care standards.

Compassion: 1.6: “I get the most out of life because the people and organisation who support and care for me have an enabling attitude and believe in my potential.”

Responsive care and support: “My health and social care needs are assessed and reviewed to ensure I receive the right support and care at the right time.”

“My care and support adapts when my needs, choices and decisions change.”

Rights Made Real – Human rights and human connections are not defined by our role

Everyone is involved in activity e.g. chef chatting with residents and finding out what people like to eat. One of the residents wrote a braille letter to the chef for the lovely selection of food that reminded him of his late wife’s cooking.

The musician knew the residents well, he knew some of their names and knew how they liked to engage, e.g. what songs they like

A support worker assisted a resident to a football match and commentates the game for him.

The support worker said to activities coordinator, “I’ve supported you, can you support me?” Teamwork is vital in helping each other grow in confidence of their own abilities.

With each activity, there is an opportunity for staff to learn about residents’ behaviour and preferences, for example, one lady sat further away during a music activity as the staff knew she didn’t like to be too close to the noise and she liked to hear from a distance.

Compassion 1.6 : “I get the most out of life because the people and organisation who support and care for me have an enabling attitude and believe in my potential.”

Rights Made Real – Resident led activities and creative approaches

Resident led activities

Two of the projects are focusing on resident led activities, however all the care homes are involved in providing activities that the residents enjoy and find meaningful in their lives. Activities don’t have to be all singing all dancing, activities ca meaningful care, experiences and spending time with a resident doing things they enjoy, no matter how small.

Creative approaches are needed

Staff in one project noticed that boards weren’t being used to their full potential, so the activities coordinators created photo frames using coloured paper and placed photos of residents participating in activities at eye level throughout the home to remind residents of activities they have previously taken part in. This has been a great conversation starter and it has also encouraged people to walk around the home to look at the photos. With one resident commenting “Is that me? Is that really me?”

Families and visitors also enjoy looking at the photos too and it keeps them up to date on what has been going on for those that do not attend a residents meeting.

Be included - “I am included in wider decisions about the way the service is provided, and my suggestions, feedback and concerns are considered.

Rights Made Real – Using a Visual Inquiry Tool

Visual inquiry tool to explore and develop understanding

Using images has been helping staff express what human rights means to them in their own language. The visual inquiry tool created by My Home Life can help to build connection between people, as they share in real and meaningful ways, while staying safe and only sharing what they feel comfortable with. Other benefits to using this method are that the images can evoke ideas, thoughts and feelings that the person participating was previously unaware of themselves. For example, one person selected the image to the right and explained:

 

 

We only see the top, we don’t see what is hidden.

This tree has its own shape, it is allowed to grow as it needs to, also it is sheltering the birds, there is protection.

 

 

Feedback from staff on using the visual inquiry tool

  • "If we were asked the question outright we would talk about the theory – this helps us go to a deeper level and use our imaginations."
  • "It would be good for reviews – at the moment we tend to talk around rather than with – reviews are focussed on what is keeping someone alive rather than what matters and what helps them to feel alive."
  • "Useful to use at the beginning and end of the project to gauge people’s attitudes and feelings around a subject."
  • "I’ve changed my mind about using images, I thought I didn’t like it and found it hard but it helped me go with my gut reaction."

If you would like more information on the use of images in practice please click on the link below.

Visual Inquiry Tool link

Rights Made Real – A Summer Update

Over the Summer there has been lots of progress within the Rights Made Real in Care Homes Project.

  • Three human rights workshops successfully completed with another two dates set before the end of the year.
  • Two projects are coming to the end of their project and had a celebration event to reflect on all they have achieved and how they plan on embedding the learning.
  • The sensory garden in Tiree is blossoming and is due to be completed in the next month
  • Group Zoom call on the 11th September was a great success where we explored the progress of each project that was represented, different tools such as curiosity cards and the use of language in human rights. Our next group Zoom call is on 6th November

We are also excited and preparing for a two-day learning and sharing event in Perth, where all the projects no matter where they are on their journey are coming together to:

  • reflect and celebrate how far they have come
  • share their journey with others
  • think about how their practice has changed in terms of “I used to but I now….”
  • think about 'why YOU are so important in the realization of human rights'
  • future form – 'how do we embed this learning and where do we go from here?'

We can’t wait to share the findings from the upcoming learning event with you all in the near future.

 

On Tuesday and Friday on the next few weeks we will be sharing reflections from the projects across each of the following themes: