Reviews and Contributions

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A review of adult social care is underway in Scotland. A huge exercise to be concluded in a short period of time. Out of interest, I have taken the opportunity to read several submissions, most of which are thorough, detailed and well intentioned. I have however, been struck by the fact that had these submissions been anonymous, devoid of any logo or signature, it would have been clear which organisation or part of ‘the sector’ they had come from.

A common thread running through these documents is that problems with the adult social care lie elsewhere, whilst solutions reside in doing more of what those who have written the submissions believe they do well. Each contributor in this, at least partially, dysfunctional system points elsewhere for the root of the problem, whilst simultaneously attempting to shore up the territory on which they reside.

Terminology used in these submissions can confuse even the most discerning reader. Words with meaning and heft become blandishments through overuse. ‘Person centred’ is one such phrase. It is used to convey the idea of individual agency and involvement. However, I am reminded of at least one long-stay hospital I was involved in closing, which had a Person Centred Planning Co-ordinator. In a place where most residents slept with a curtain around their bed and didn’t have a choice of whether they had sugar in their tea (it was made in an enormous teapot and you took it as it came), this seemed at best odd.   

Being person centred is not a badge an organisation can award itself. To do so is oxymoronic. Organisations may try to ensure their practices are person centred, however the only credible evidence to support that assertion is if people being supported say it is so. Person led is far clearer terminology. It supports greater accountability for the provision of evidence illustrating individual agency. It also requires greater humility about what is being achieved.

Words are important. They can provide clarity but can also be used camouflage that which should be exposed. So, rather than considering the priorities each constituent element of the social care system may find beneficial and navigating from there, might we be bolder? Could we take this opportunity to raise our gaze and consider the most effective lens through which to survey the adult social care landscape and bring reality into sharp relief? A human rights based approach would provide a focus through which to examine the current system and how effectively it operates to respect, protect and realise the human rights of all those who live, love and work in Scotland. Whatever the outcome of the current review of adult social care, the fulfilment of these rights should be the vision, the North Star by which we navigate future developments. The vehicles we use to make that journey may be open to debate, the direction of travel however should not be.

Human Rights and Covid-19

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Greater equality does not occur by treating everyone equally. This truth should be self-evident. We do not experience our physical, emotional and social worlds in the same way. Many barriers impede disabled people’s access to the range of opportunities available. Some are physical, others environmental or economic; often it is a combination. Other barriers exist in latent form, and are manifest in times of crisis. Pressure on systems can reveal underlying assumptions about the perceived worth of disabled citizens.The response to the pandemic, Covid-19, is one such example.

In the early days of the virus, concerns were raised about health guidance that appeared to discriminate against disabled people. Following protests and legal scrutiny the guidance was amended. Similarly, concerns were raised about the propensity to apply Do Not Resuscitate (DNR) notices to disabled patients records. Such actions appeared to be based on the erroneous assumption that having an impairment was the same as having an underlying health condition. In this context, it is not enough to support disabled people to ‘take their chances’ in a health and social care system under pressure and expect equal outcomes. From a human rights perspective, it was necessary to take practical steps to mitigating predictable risks arising from such systemic discrimination.

Such steps included working with individuals and their families (where appropriate) to review their Communication Passports, in readiness for any potential hospital admission. Supporting individuals to secure, from their GP, a ‘letter of comfort’ detailing that their disability was not an underlying health condition. Also, that any such conditions that did exist, was well managed. Individuals, families, team members and wider networks of multi-agency support actively worked together to ensure human rights were respected, protected and fulfilled.

Everyone has not experienced the pandemic in the same way. We do not achieve greater equality by denying the impact of this crisis has fallen more heavily on some than others. It stands to reason that if disabled citizens are disproportionately detrimentally affected by this pandemic, they should be prioritised for measures to offset these impacts. This includes financial aid, access to support and of course priority access to vaccine roll out.

On international Human Rights Day, we consider the impact on a global and national scale. It is also incumbent upon us to seek the opportunities we all have to repect, protect and fullfill human rights obligations in ‘those small places close to home’. Knowing that, ‘without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world’ (Eleanor Roosevelt, 1958)

Sam Smith – C-Change CEO

Of love, kindness and appreciation

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Wedding rings (2)

 

The following post is an adaptation of a Twitter thread I wrote last year. It is a tale of love, kindness, thanks and appreciation. As I said at the time, I am a private person such personal commentary was, and still is, unusual territory for me.

B and I have just celebrated our one year wedding anniversary and as I look back we have so much to be grateful for.

Reviewing events from a distance, and as the world rocks with the impact of a pandemic for which there is no cure, I am struck by the need to focus on that which we can do, rather than those things that feel outwith our control.

We can be kinder to each other; we can take a little more time to notice and to listen. We can engage with humanity and humility and allow quiet space for others to fill in their way, without proscription. We can look after each other, as friends, as families and as strangers. We can wear a mask; our way of saying you are important to me, you are me and we, us and together.

The following is a brief tale of a tumultuous week one year ago.

B and I got married on Friday 12th July 2019. After 30 odd years together, we said “I do” in the Intensive Care Unit (ICU) of the Queen Elisabeth Hospital (QEH).

B made his way there by ambulance, anaesthetist on hand, blue lights flashing, from the Beatson Cancer Care Unit on Monday 8th.  He was initially admitted to the High Dependency Unit (thankyou NHS).

On Wednesday 10th I received a call from QEH asking me to “please make your way to the hospital”. B’s health had deteriorated. He was moved to the ICU and placed on a ventilator.

It was breathing in and out. Awake, he spoke in whispers of the Consultant stroking his hand (everyday kindness).

Thursday 11th the Consultant explained the options. There were discussions and stark choices. B decided there was to be no intervention if things took a downturn (such compassion and respect).

Our focus narrowed. B and I had spoken of getting married but not quite got around to it. I called our friend, JJ, a superhero. She made it her mission (the power of friendship).

Our wedding was arranged within less than 24 hours. B’s Consultant wrote that B may not survive the 28 day lying period required; he asked for an exemption. The Registrar pulled out all the stops. The hospital Chaplain dropped everything to be of service. Our best people abandon their plans and witnessed our ceremony on Friday 12th July 2019 (surrounded by compassion and commitment).

B had few breaths and fewer words. The Chaplain kept it simple and shared a poem (such thoughtfulness).

The ward staff bought our wedding feast and were witnesses at our wedding. Nurse M was our wedding photographer. M&S donated our wedding bouquet (small acts of kindness).

B loves reading and good journalism. Out of necessity and with no time for other, our wedding rings were made from the Financial Times newspaper (simple special things).

The next day, L, whose husband lay 2 beds away called to me in the corridor. She gave me the biggest hug. She said our wedding had brought her joy in a time of sadness.  She wished me all the love in the world and hoped that I would be as happy as she had been. Her husband sadly died; I think of her generosity often (such love and kindness).

B is getting stronger. We walk each morning, slowly a bit further each day. We were sitting resting one day when Nurse M (our wedding photographer) saw us. She was so delighted that B was looking so well and was excited to go back to work to tell others (so much more than a job).

B and I were supported through this period by wonderful friends, family and colleagues without whom it would have been so much harder (the importance of great support).

As a society we face even greater challenges than B and I faced one year ago. Covid-19 is putting our society to the test and Health and Social Care is at the sharp end of this struggle. It is my hope that, as a society, we can marshal the same resources that B and I were so fortunate to draw on during our own personal crisis. It is what saw us through and, in my humble opinion, is what makes life worth living.

How reputations are made: Edward and the butter knife

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Edward was the first person C-Change ever supported. He had moved several times over previous few years, as place after place said ‘no, he can’t live here, we can’t ‘manage’ his behaviour.’

He moved from the Assessment and Treatment Unit (ATU) into his own wee home, in the East End of Glasgow in 2001. He had been involved in recruiting his team. For the sake of continuity, he continued getting ‘day support’ on a 2:1 basis from another organisation that had been supporting him in the ATU.

He had been in his house less than 2 months. At the end of a multidisciplinary meeting I was attending, the Head of the Complex Needs team said, ‘I hear one of your guys has stabbed someone with a bread knife.’

Err, news to me! I checked in with colleagues. Yes, there had been an incident at Edwards home.

There are however, at least two versions of the story.

Version 1.

Two day support workers arrived. Edward’s team member left him finishing his breakfast. It was a lovely day and the day support workers had plans to go to Strathclyde Park. Edward was taking a long time to finishing his toast, so they started physically assisting him. Edward became ‘non-compliant’. He lifted a knife and threatened them. They left and called the police. Two police cars turned up, sirens sounding. When the police entered Edward’s home, he was sitting finishing his breakfast.

Version 2.

Edward was enjoying his breakfast, relaxing and taking his time. Two day support workers arrived, they had plans to go the Strathclyde Park. Edward didn’t want to go to the park. He found it difficult to say no to people, but he told them by eating his toast slower and slower. They did not listen. They started pulling him up from the table. He shouted at them and lifted the butter knife off his plate. They left and phoned the police. Two police cars turned up, sirens sounding. When the police entered Edward’s home, he was sitting finishing his breakfast. People in the street wondered why the police were at their new neighbour’s house. He seemed such a nice man.

In memory of Edward, the gentleman who always called me ‘my darling.’

The goldfish and the bearded dragon

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William and I first met over 6 years ago. William was being supported by another organisation. C-Change was going to begin working with William and I was introducing myself and the organisation.

William shared his support with others in a congregate living setting. He had his own flat, had a tenancy, was not under any statutory restrictions.

During our first conversation William asked me an unexpected question. He said ‘Can I have bearded dragon?’

My first question back to William was,’why are you asking me that William?’

He told me that he had previously asked if he could get a bearded dragon. He had been told to get a goldfish. If he could prove he could look after a goldfish, he might then be able to get a bearded dragon.

For the avoidance of doubt, William had never expressed an interest in having a goldfish!
There is a lot of power and discrimination loaded into the assertion that William, an adult, be expected to prove he can look after a goldfish, he never wanted, before ‘being allowed’ to get the bearded dragon he had set his heart on.

William got his bearded dragon.

Goldfish and the Bearded Dragon (Audio by Sam Smith and William Rae)

Leadership and the Coronavirus

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It came upon us like a seventh wave. We knew it was coming, we had witnessed its effects on our human family in China, Italy, Iran, Spain and beyond. We had taken deep breaths, preparing as we could, but when it crashed around us, everything was upturned.

One cannot truly prepare for something so far beyond the imaginable.

The preparation we had put in place, provided buoyancy as we tumbled over and dispersed to our homes, unanchored by a base.

And now, many weeks in, we are beginning to find our feet. The adrenalin has subsided, a bit. We have worked out how to stay connected from the little islands on which we have been cast adrift.

We now virtually wave at each other, using video conferencing technology. We count ourselves in and out each day, checking on the wellbeing of the people we support and our colleagues who support them. Checking that everyone has the necessary supplies to keep themselves and others safe and well.

Daily we recognise the skill, the commitment and the ingenuity of our colleagues, working out how to make it work. Rising above the challenge, offering each other hope and encouragement. Approaching their roles with a heroic balance of humility and courage.

It feels now is the time to lift our heads up, to look forward, to gaze at that more distant horizon and consider what that future holds.

Click below to listen to an earlier version of this blog, shared as an audio recording internally within C-Change on 17th April 2020.  

stormy-sea

Being Human, But Why?

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Tuesday 28th August 2018, marks the fourth in a series of Being Human conferences hosted by the organisation I work for, C-Change Scotland. The organisation is a charity and by all accounts is a service provider organisation. It works with disabled people with additional support needs assisting them to live their good life. So why has the organisation been spending time talking about human rights, is that not someone else’s business, like policy makers, lawyers or the courts?

We think not, we think human rights and the debates and discussion about them are absolutely the stuff of social care. Dignity, the founding principle of human rights is the bedrock of good social care, indeed of any relational interaction. The problem is there seems to be a gulf between policy and practice and rhetoric and reality. The conference also heralds the launch of the book I have written, Human Rights and Social Care, Putting Rights into Practice. The book attempts to make inroads into that gap by connecting case law and practice examples. The book uses the PANEL principles of Participation, Accountability, Non-discrimination, Empowerment and Equality and Legality as a navigational tool to guide practice.

Book launches usually take the form of an author’s lecture and drinks reception. This conference and book launch is more of a celebration of the evolution and the potential of developing a human rights based approach to social care in Scotland. It provides the forum to showcase human rights in action across a range of areas of social care including work with children, women , disabled people and those affected by Alzheimers. We are also very fortunate to have Professor Alan Miller provide the keynote presentation.

Human rights requires leadership. In Scotland we have strong and positive cross party political support for the human rights agenda. However this is not enough, we need to strengthen our citizen leadership. For people to exercise their rights they need to know about them. The aim of the conference and the book is to raise awareness of the potential of adopting a human rights based approach to social care.

We hope you can join us on the day but if not please follow us on social media using the hashtag #rightsintopractice.

 

A Curious Grapevine

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Human rights are our rights by the very nature of our being human. They link us together in our common humanity. They provide, through international human rights conventions and domestic laws, agreements about how we should live together and treat each other based upon respect for human dignity.

Someone once said to me “I knew I had rights but I didn’t know they were the same as other peoples”. Unless people know their rights, they cannot exercise them. They cannot draw on their connective power.

It was this idea that informed the writing of the book Human Rights and Social Care Putting Rights into Practice. I wanted to explore the transformative potential for adopting a human rights based approach to social care. The PANEL principles of Participation, Accountabilty, Non-discrimination, Equality and Empowerment and Legality provide a steely core upon which the work of C-Change Scotland is based.

Eleanor Roosevelt, the Chair of the inaugural United Nations Commission on Human Rights, expressed a desire that a “curious grapevine” would carry the idea of human rights into every corner of the world. The hope is that this book adds one small branch to that ever expanding “curious grapevine”.

Human Rights and Social Care: Putting Rights into Practice (Policy and Practice in Health and Social Care) is available now via amazon.co.uk: https://www.amazon.co.uk/Human-Rights-Social-Care-Practice/dp/1780460678

Human Rights and Social Care: Putting Rights into Practice

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SamBook_edited-2

I have written a book Human Rights and Social Care: Putting Rights into Practice (Policy and Practice in Health and Social Care), which was published last month.

The book draws inspiration from the following famous Eleanor Roosevelt quote.

Where, after all, do universal human rights begin? In small places, close to home – so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual person; the neighbourhood (s)he lives in; the school or college (s)he attends; the factory, farm, or office where (s)he works. Such are the places where every man, woman, and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger ).[1]

I have taken the audacious liberty of slightly amending the quote (in brackets) to address the gender-specific nature of the original statement. The book aims to act as a counter balance to the notion of human rights, and human rights law, as the preserve of lawyers, court rooms and judges. This is not to say that the legal profession and the court of law are not important in the realisation of human rights. They are, and careful attention has been paid in each chapter to significant case law that has contributed to the development of human rights jurisprudence.

The focus of the book is, however, on the universality of human rights and the role of the citizen in manifesting and bringing these rights to life, in the living breathing reality of our day-to-day lives. Its aim is to contribute to a growing understanding of the power and potential of human rights in the many different roles citizens fulfil daily, as family members, as colleagues, as those in receipt of additional support and as professionals working in the field of social care. Human rights are, if understood, owned and exercised, a set of shared values and aspirations that form a common lexicon of oneness in our humanity, that transcends age, gender, race, religion, disability and sexual orientation. In that, they can be the source of great inspiration, power and solidarity and act as a catalyst for meaningful progressive social change.

HumanRightsAndSocialCareA formal launch of the book is planned for late August and I will talk more about this as we near the date.

Human Rights and Social Care: Putting Rights into Practice (Policy and Practice in Health and Social Care) is available now via amazon.co.uk: https://www.amazon.co.uk/Human-Rights-Social-Care-Practice/dp/1780460678

 

 

[1] Excerpt from a speech at the presentation of ‘In Your Hands: A Guide for Community Action for the Tenth Anniversary of the Universal Declaration of Human Rights’, Thursday, 27 March 1958, United Nations, New York. As head of the Human Rights Commission, she was instrumental in formulating the Universal Declaration of Human Rights, which she submitted to the UN General Assembly with these words: ‘We stand today at the threshold of a great event both in the life of the United Nations and in the life of mankind. This declaration may well become the international Magna Carta for all men everywhere.’