Of love, kindness and appreciation

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

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

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)

Being Human, But Why?

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.