Making Human Rights Ordinary

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By Dr Donald Macaskill, CEO, Scottish Care

This year, we celebrate the 70th anniversary of the establishment of the United Nations Universal Declaration of Human Rights.

The Declaration was the first step in the process of formulating the International Bill of Human Rights. These are the world’s key human rights charters and regulations.

The reason we have our Conventions and laws is that, 70 years ago the world was still waking up from the nightmare of the Second World War. In that obscene period hundreds of thousands of people had their basic rights removed or obliterated – their right to life and health, and to being treated with dignity and as human beings. The women and men who gathered in New York in 1948 to draw up these new laws were not motivated by a desire to develop a complicated legal structure but by the overwhelming passion that humanity could never ever again go back to where it had been in the 1930s and 40s.

Although it’s easy to think that human rights are a complicated legal code or set of rules, they are first and foremost about people. They are in some senses very ordinary.  They are an inherently commonplace set of commitments about how we should live and relate to one another.  They are statements about what it means to be human.

The problem is that we have forgotten the ordinariness of human rights, and we’ve turned them into something which people study, lawyers ponder and politicians debate. We aren’t sure what they are or what they mean.

A few years ago I carried out an exercise in which I asked a group of residents in a care home what they thought of when they heard the words human rights. Their responses were probably reflective of the good and bad press that human rights has wherever you might ask that same question in Scotland today. Some of the responses were negative, others were positive. A not untypical response came from one woman who said – ‘That’s all these rights that stop us from sending terrorists back to their own land.’’ Others were, however, very clear about the relevance of human rights to them. ‘Listen son,’ one older man said. ‘I lost my best friends in a war which was about human rights – though we didn’t use that word then. That’s the world I was fighting for.’ An older woman said to me after some quiet reflection, ‘Human rights – aren’t they about just being human after all.’

It might strike you that human rights aren’t really an issue here in Scotland, that there are very rarely instances where the lives of individuals are under threat, or where they are being abused or oppressed.  But unfortunately there are times when human rights are being restricted or abused right under our own noses, in our own nation and communities.

There are times when, as much by neglect as by design, our human rights are being ignored or downplayed. Such times might include when we grow older, when we develop life limiting conditions or indeed when we move from our own home into hospital, supported accommodation or a care home.

Over the last few years Scotland has led the way in a whole range of efforts to make human rights ordinary, make them the concern of citizens, and in every sense to make them commonplace. One of the really positive developments that has taken place in the last couple of years is the introduction of the National Care Standards. They are a set of practice principles by which every Health and Social Care Service should be delivered. Their emphasis is upon how you, the receiver of care and support, the citizen, should experience and feel about that care. Does it enhance your dignity? Are you being listened to and heard? Are you being treated with respect? Are you able to exercise as much choice and to take as many decisions as you can? These are not always easy questions to answer and not all services are as good as they might be about enabling rights to become real in the delivery of care and support.

Several months ago the Life Changes Trust, in conjunction with Scottish Care, established a £300,000 grant scheme to offer small grants to support care homes to explore how they can better support human rights in the care and support of residents who are living with dementia. Dementia can be a frightening condition, with loss at its heart – loss of identity, loss of confidence, loss of relationships – and it can be all too easy for an individual to lose their sense of being in control, of being able to make choices, of exercising their own human rights. The Making Rights Real project is about turning that on its head. It’s about helping staff in care homes, families and individuals, recognise the role that upholding and advancing human rights can play in supporting and caring for people at very vulnerable points in their lives.

Seven care homes have been selected for the initial phase of this funding. Representing care homes from across Scotland and from very different communities, the projects which have been funded are equally diverse.

What they all have in common is that their work is grounded in human rights. They are about making rights real. They are about making human rights ordinary and commonplace.

People who enter care homes or indeed people in the latter stages of living with dementia do not give up their rights when they grow older. There are still ways in which they continue to contribute to their families and their communities. These exciting projects are about trying to find new, creative and innovative ways in which the human rights of some of our most vulnerable citizens can be better supported and enhanced.

Human rights lie at the heart of quality care and support which puts the individual at the centre of all that happens in a care home. They aren’t about compliance or ticking boxes. They are all about relationships. The work of embedding and realising human rights is about re-orienting the way we care for and support others. How can I get better at hearing from you what it is that you are trying to communicate to me? How can I get better at understanding that you have needs which are unique to you? How can I learn to let you take charge even when you have been diagnosed as having no ‘legal capacity?’ At their best, human rights are a dance, where the carer learns to listen to the rhythm and movement of the music which the person being cared for uniquely creates. This is the stuff of making human rights ordinary and yet, at the same, time extra-ordinary.

I sometimes think we have lost the power to listen deeply to the unique rhythm of every human being, to listen to the story and song which a person has created throughout their living and to hear the direction and movement an individual wants to take. It is much easier for us to think we know what someone needs, to finish their conversation, to direct them where they should be going.

At its best human rights is a new dance, a new language, a new song – not of law and legislation – but of relationship, where the individual and their humanity, is the centre of our caring and community.

The pioneers who created the United Nations Universal Declaration of Human Rights had a dream of creating a world where human rights would become commonplace and ordinary. The Life Changes Trust grant scheme is a remarkable contribution to making Scotland a place where everyone, regardless of place, condition, background or behaviour, has their rights respected and supported. It will be an enjoyable dance of rights made ordinary.

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Dr Donald Macaskill, CEO, Scottish Care

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Reading Friends – a new project is coming to life!

This blog is courtesy of Katie Pekacar from the Reading Agency

In June 2016 The Big Lottery Fund awarded The Reading Agency £2.1 million over four years to develop Reading Friends, a new programme designed to reduce loneliness and start conversations with vulnerable and isolated older people through reading.

At the time it seemed almost impossible to imagine that we would be hosting an event in the Library of Birmingham less than one year on, with representatives from six projects ready to launch their reading activities in communities across England, Scotland and Wales. But that is exactly what we did a few weeks ago – and it has been a busy year to get to that point!

The project has been entirely co-produced with older people, including people with dementia, carers and disabled people. At several points we’ve changed our ideas completely as a result of this process – for example, the design of the leaflet, how we describe the programme and even the format of the programme itself, moving from a reading challenge, to a more inclusive befriending model.

We have also developed important partnerships with Literature Wales and Scottish Book Trust, who will help us develop Reading Friends so that it meets the need in those nations. Our partners also include a number of national charities and the network of public libraries across England, Wales and Scotland, to ensure we’re building on existing work and infrastructure.

So last week we all met up and heard from each of our six test projects about their exciting proposals to adapt and deliver Reading Friends to meet the needs in their area over the next 12 months. Although we can’t do justice to all their plans, here are some short examples:

  • In Sheffield, Dementia Action Alliance is working with Sheffield Libraries to start conversations through reading with diverse audiences across the city, including a local Pakistani men’s reading group who are interested in Pakistani heritage and a dementia reading group meeting in an antiques shop
  • In Conwy in Wales, Conwy library service will be working with isolated older farmers, many of whom have Welsh as their first language
  • In Newcastle, Age UK Newcastle and Newcastle Libraries will be working together to bring Reading Friends to an existing befriending service
  • Three different organisations across West Sussex – Age UK Horsham, Dementia Support in Chichester and the Abbeyfield Society in Horsted Keynes – will be trialling a networked approach to Reading Friends with West Sussex Libraries providing the infrastructure support and access to a wide range of digital and assistive technologies
  • In Stirling the library service will be looking at how oral storytelling can be used to engage isolated older people, especially those with Gaelic as a first language
  • Oldham Library service will be using an asset based model to engage deprived and socially isolated communities in Oldham with designing and delivering Reading Friends so that it meets their needs.

The Reading Friends team left the meeting feeling excited by all the brilliant ideas, energy and enthusiasm shown by the test projects. We look forward to continuing the journey of discovering what Reading Friends is and can be together with all our partners and the communities they engage over the next year.

Read more about Reading Friends here: https://readingagency.org.uk/adults/quick-guides/reading-friends/

If you want to find out more about Reading Friends email readingfriends@readingagency.org.uk

Language and Dementia: what’s the problem?

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Today we have a guest blog by Kate Swaffer (@KateSwaffer) on (in)appropriate language use in dementia. Right in time for our #demphd chat today at 11 am British time! Your #demphd team ( Grant, Julie, Paul, Clarissa) 🙂

Dementia is heavily covered in the media. From Dementia Awareness Weeks to national guidelines and documentaries, dementia becomes ever more present in everyday life. With such a heavy media coverage of, it is likely that there are some issues that we people with dementia feel are inappropriate.

The problem is that too often, the rights of many people with dementia are not being respected when it comes to the way we are talked about, or referred to publicly, by people without dementia, such as journalists, health care professionals and care partners.

Yet again, during another two recent Dementia Awareness Weeks, we have been blitzed by articles and stories in the print, radio, television…

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A day in the life of a peer mentor

This blog was written by Nicky Gavin, a volunteer peer mentor with VOCAL (Voice of Carers Across Lothian).  VOCAL provide both one-to-one and group peer support to carers of people with dementia. This service is one of the Trust’s 13 funded dementia peer support and befriending projects.

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Today, as I am looking after my granddaughter (which I do every Friday to allow my daughter-in-law to work), I find myself thinking about the past week.

I have been volunteering with VOCAL – Voice of Carers Across Lothian – for a year now and this has been my busiest week with them so far.

I had so much support from VOCAL when I was new to caring for my father, that I was really keen to give something back.  Then Jane Greenacre, who is VOCAL’s Assistant Director and peer mentor co-ordinator, approached me to get involved as a volunteer. We discussed a few roles and I did try working in the carers centre for a bit, which I enjoyed, but when the mentoring project was mentioned, I knew it would be better for me.

I learned so much caring for my Dad and consider myself a people person so it felt a good fit.  Going through the training programme, I grew more confident that peer mentoring was something I wanted to do as I would not be giving advice (which I don’t feel qualified to do – what was right for me and Dad might not be right for others), but telling my story, letting others take the things they want to from it, and sharing experiences.

Last week was particularly busy, as I am currently mentoring two different people and we also had a team meeting. On Wednesday, I had my final meeting with a person I have been mentoring for a while.  We met in the same quiet cafe we have used for our previous meetings and, at her request, our meeting focussed on my role as my Dad’s power of attorney, so I shared quite a lot about the practicalities of this but also how I felt doing it.

This is something I always try to do, as often my mentees have a good understanding of processes but find it difficult to use them due to the intense emotions involved.  Saying our goodbyes was quite difficult as I will not see her again, but I left feeling upbeat as she kindly thanked me for my time and told me that it had been really useful to talk to someone who has been though the same thing as she had – none of her friends had been carers before.

On Thursday I had a first meeting with a new mentee so we met in the Carers Centre (first meetings are always in the VOCAL offices). I got there a bit early to make sure I had the kettle boiled to ensure a warm welcome.  My new client was particularly interested in behavioural changes and how I coped with them.

When I talk about this, I always think back to my training and am mindful of identifying the learning from my story, the positives, and the things I would do differently.  It might not be too helpful to share all the struggles I had without providing some light at the end of the tunnel!

The meeting went well and I was pleased that said she would like to meet me again.  She had been unsure that we would have enough in common as she was caring for her husband, and I was a carer for my Dad, but she found it useful and we scheduled a meeting for two weeks time and she seemed to head off a little lighter than she came in.  A number of new clients have been concerned that my Dad’s dementia was different from their own experiences with a loved one.  That’s true, but what is common are some of the challenges that we face as families.

The team meeting was good as always. I like going to the Centre and catching up with the staff but the peer mentor team meetings are the only time I see the other mentors.

I like these meetings, as we really got on well as a group when we did our training, but also as it gives me a chance to learn from their work too. The meetings are quite structured by Hazel (the carers support worker who manages us) but she always allows us time to catch up as well and it gives us all time to reflect on how we do our work.

My mentoring journey has so far been really rewarding, and I am glad that it’s a journey I chose to embark on.

With thanks to Nicky Gavin, volunteer peer mentor with VOCAL (Voice of Carers Across Lothian)

A festive thank you!

As the festive period is well and truly upon us and another year draws to a close, I wanted to take this opportunity to reflect briefly on our journey over the last twelve months and to thank everyone who has worked with and for the Trust – helping to make it such a successful and rewarding 2015.

Our Annual Review for 2014-15 – which you can find here – highlights what we have already funded and our future funding plans. I hope you share my view that it’s inspiring to read about the benefits already achieved for care experienced young people and people affected by dementia through our funding to date – for example, our two individual award pilot schemes. I also hope you feel as excited as we do about the potential benefits our active and planned future funding awards will bring to our beneficiaries in the years ahead.

We held our first National stakeholder event, in November 2015. The event was called “Connect, Build, Transform” because the Trust believes it is only when we really listen to what people affected by dementia and care experienced young people want and need and empower them to connect and work with others to achieve positive change – that their lives be truly transformed for the better.

The Trust has now been active for two and a half years and, as this year closes, I think we have made good progress on our journey to becoming an effective funder – enabling those we fund to improve the quality of life and well-being of people affected by dementia and care experienced young people across Scotland.

Warmest wishes for a happy and peaceful festive period, and my heartfelt thanks for helping to make 2015 a better year for so many.

Maddy Halliday
CEO
Life Changes Trust