The Author of Our Own Story How many of us go through life without truly thinking about growing old? Yes, on a July morning on the Central Line, I’m probably not the only one daydreaming about a later part of my life by the sea. But, I mean truly thinking. Thinking about what our lives will look like when we’re 75, 80 or 99. Many of us, myself included avoid thinking or talking about growing old. This might be because it’s unknown. We don’t know what our lives will look like in 20, 30 or 40 years and therefore we don’t think about it or discuss it. But, isn’t it true that we talk about lots of things that are coming up in the future that we can’t predict? We talk about retirement plans, travel dreams and what technology might look like in 30 years. So why not about old age? For many of us, I suspect, it’s because old age comes with fear. Fear about our health deteriorating but more than this, fear of what we think inevitably comes alongside a decline in health. An increase in the care and support we need and therefore a handing over of the pen with which we’ve so far written our own story, a handing over of the ability to shape those final chapters of our lives. This fear, in my opinion, derives from our experiences. Our experience seeing our grandparents separated into different care homes because they have different “needs”. Seeing our older neighbour who used to be in the garden every day with her home carer watch her beautiful plants wilt from the window because she’s been told that it’s now a falls risk. Seeing the voting canvassers during election time pass by the supported living accommodation at the end of the road. Seeing that since moving into the care home, Bobby’s seat of 40 years at St James’ Park is now empty. In one of my favourite books of all time, Being Mortal: Medicine and What Matters in the End, Atal Gawande, writes: “Our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer.” He makes his case, as we base our fears, through stories of his family, friends and patients. What does this have to do with human rights? Legally, our rights do not change when we turn 65, the Human Rights Act applies to all of us regardless of age (or any other status). Our grandparents still have the right to Family Life (Art 8, HRA), our elderly neighbour still has the right to Liberty (Art 5, HRA). Those in supported living still have the right to Free Elections (Art 3, Pro 1) and Bobby still has the right to cheer on his beloved Newcastle United whether he lives in a care home or not (Art 5 and 8, HRA). We all have the right to be treated with dignity, respect and without discrimination. And we all have the right to make our own decisions about what makes our lives worthwhile. There may come a time when some/certain aspects of our non-absolute rights may have to be restricted to protect us from harm but this cannot be applied arbitrarily when you turn a certain age. This must be done in a way which involves the individual and which is lawful, legitimate and proportionate. Our Human Rights Act provides the framework required for public authorities to respect, protect and fulfil human rights. So why is this not always case? The answer, because it takes more than legislation to safeguard people. It’s crucial that the law exists but without the people that we interact with being confident and knowledgeable in applying it, we may not see or feel (when our time comes) it’s impact. For the Human Rights Act to protect older people, we need empowerment. Empowerment of individuals, their families and their communities to understand their rights and challenge decisions which infringe them. And, we need all of the public officials we interact with when where our health deteriorates to be fully trained to support us in a rights respecting way. Putting it in to practice This is what we do at BIHR. One of our largest projects this year is with Tees, Esk and Wear Valleys NHS Foundation Trust (TEWV), who provide mental health and learning disabilities services across County Durham, Teesside and North Yorkshire. The project is focused on supporting leadership and staff to embed a rights based approach in mental health recovery and empowering service users and communities to understand and claim their rights. One of the pilot teams is a Mental Health Team for Older people, made up of professionals who have always been devoted to upholding human rights but who through BIHR’s training and support now feel that that have the knowledge and confidence to do so. We are 5 months into a 15 month project and already we have witnessed an incredible change in practice. Below are some quotes from practitioners; “I used the Human Rights Act to challenge a decision to detain someone for inappropriate verbal comments.” “I now feel confident in ensuring a person’s human rights are met even if this is not what the family want.” “After human rights training, I now always consider least restrictive practice and I encourage clients to challenge decisions.” “In discussion with local services I have used Article 8 of the Human Rights Act to ensure a person can maintain contact with family.” These are just 4 quotes from 4 practitioners and already we can see that the lives of the older people they support have been changed through their knowledge of human rights law. As the project progresses we will be sharing these stories in more detail. There is much more work to be done and TEWV as an NHS Trust is the exception not the rule here. We need all public authorities to make human rights training mandatory. It cannot continue that risk management is considered mandatory training but upholding the Human Rights Act is optional. For old age to stop being something we dread we need to ensure that those who support us are trained to do so using human rights. Embedding a human rights approach in health and care services is what will ensure that we can all continue to be the author of our own story, until the last page.