On Sunday the world seemed to stop and rest for a moment in remembrance of the millions who gave their lives in the First World War and in memory of all those since who have died after the war to end all wars. Remembrance Sunday was a day full of words and music, poetry and prose, pageant and solemnity. It was also, I suspect, for many a day when more personal stories and memories were brought to mind and shared with family and friends. For me it was a day when I remembered my own grandfather who left his Skye village as a boy and returned years later a man who whilst he carried a medal for his bravery also brought back the scars of encounters and experiences that would fragment his living and ache his heart until he died. Remembrance is many things to many people. It is both an act of literally ‘re-membering’, of putting back together the stories of a broken past but it is also about a resolve and a conviction that the lessons of that painful past need to be so real and so vital that the journey into darkness can never be repeated. In a few days’ time many of us will be gathering in Glasgow for the annual Scottish Care conference which is this year called, ‘A Caring Place.’ In thinking about it I could not stop recollecting the first person I ever met in a care home on a visit as a child. I forget his name but I remember his face etched with lines of laughter and fun, and the fact that he was introduced to us children as an old soldier of the First World War. Characters like him are long since gone from our communities and our care homes, but Friday in its own way at the conference is about remembering, putting together stories and developing resolve to learn from the lessons of the past. Scottish Care’s policy and research manager, Becca Gatherum will be publishing her latest report. This report is an exploration of the role of care homes, past, present and into an uncertain future. It is a remembering of the role of care homes through good and ill, it is a challenge to the casual myths and stereotypes which still dominate the public perception of care homes, and it is an articulation of what the future needs to be if we are to continue to celebrate the best of care. Care homes are very much ‘caring places’. Places where those with memories fragmented by the awful disease which is dementia are able to find assurance, comfort and a degree of purpose; where those who are living with palliative and end of life conditions are able to live to their fullest until the moment of their end; where those who have grown into frailness find the support and strength to still contribute, be valued and have purpose. Care homes are marvellous places of care … But there are still too many times when care homes are painted as places of negativity, of emptiness and abandonment. But there are still too many colleagues in health and social care who do not value the work of those whose skill we will be celebrating at our Care Awards on Friday evening, who do not see the professionalism and recognise the excellence happening in care homes up and down Scotland every moment of every day of the year. But there are still too many in places of policy development and decision-making who have an image of those who reside in care homes and what care homes do which is dangerously out of date and unappreciative of the reality of complex compassionate care. But there are still too many who decide upon resource allocation and strategic priority who dismiss the ‘homely setting of our ‘caring places’ as spaces beyond our contemporary need and purpose without realising the tremendous untapped potential of care homes in the modern era. Remembering the past can become a dangerous illusion if we remain in the memory but can be the most enormous strength if we use the energy that it gives to change the world around us and find new purpose and direction. The Scottish Care conference on Friday is both a reflection on the contribution of care homes in the past but much more importantly it is a looking forward to how these places can become the heart of our compassionate communities, how they can become oasis of belonging for the thousands who live in loneliness in our villages and towns, how they can be at the forefront of innovation, person-led dignity and rights based choice and control for all. Come and join us at ‘A Caring Place.’ Dr Donald Macaskill
Today is the International Day for the Eradication of Poverty. Since the first Day in 1992, it has become a day during which we are invited to give some thought to the grinding reality of poverty across the world. When our television screens are full of the faces of starving children in Africa or India it is probably easier for us to recognise the reality of poverty. It is probably less easy to see that reality in the lone parent struggling to make ends meet, in the child without the material possessions its peers take for granted or in the hidden life of an older neighbour too afraid to put the heating on in winter for fear of spending savings they no longer have. Poverty in our midst and in our community is often less visible and more hidden unless it is quite literally enshrined in a body sleeping rough and destitute on a doorstep. The United Nations has declared Fighting Poverty to be one of the key aims of their Millennium Development Goals. It is a recognition that poverty only grows unless direct action is taken both to address and eradicate it. The impact and effects of poverty are increasingly recognised and known not least in terms of attainment, education, life quality and importantly upon personal health. As a society we are much more in tune today than in the past with the need to address poverty especially as it impacts itself upon children and young people, recognising as we do the detrimental results this can have on the whole of their lives. One area we are less aware of or even open to discussing is the reality of poverty amongst older people. Indeed there is a growing public mantra which suggests that today’s older person has never had it so good and that those who follow will never ever enjoy the same benefits and wealth. At a factual level it is undoubtedly true that there has, especially in Scotland, been a sharp decline in what is often termed ‘pensioner poverty.’ That has to be acknowledged but the starting point of the improvement were the shockingly high levels of pensioner poverty a couple of decades ago. Acknowledging improvement also risks ignoring the reality of acute poverty, emptiness and detrimental health outcomes for a sizeable minority of older people in Scotland today. According to Scottish Government statistics:
- In 2014-17, before housing costs are accounted for, 19% of children, 16% of working age adults and 17% of pensioners in Scotland were living in relative poverty.
- After housing costs, 24% of children, 19% of working age adults and 13% of pensioners in Scotland were living in relative poverty.
By any calculation those are shameful statistics for a society as developed and relatively wealthy as ours. Behind every statistic is a story of personal pain. Thankfully there are no shortage of programmes and projects – and indeed Government focus – to address child and adult poverty and the mental health distress that results. But what is there for the 17% of older people living in relative poverty? Sadly and comparatively not as much as there needs to be or could be. Undoubtedly measures like free prescriptions, support with fuel, free bus travel and elements of free personal care have and are making a difference .. but… more could and needs to be done to address the issues of poverty, older person’s mental health distress, loneliness and isolation affecting too many older Scots. We are rightly appreciative that life expectancy has increased for both men and women. However, the length of time spent in ill health is also rising as the incidence of health problems increases with age. There is an inextricable link to living less and being unhealthy and the poverty an older person experiences. The lower a person’s social status, the more likely they are to enter older age in poor health and die younger than people from higher social classes. This is especially evident when we see the impact of the social patterning of chronic diseases such as heart disease, stroke and cancer. It is quite right that attention is given to child and adult poverty for that will significantly impact on older person health but it is dangerous – I would suggest – to ignore the factual reality of the impact of poverty upon some older Scots today and to primarily focus on poverty and older age as a future challenge. I met Joan a few months ago. She was born to a family which looked after the pounds as she put it. She was brought up with a canny Scottish appreciation of what she had and a desire never to be beholden to another. She worked hard as a secretary and saved the small amount of extra she was left with. She never married and although she had nieces and nephews they have moved away and become strangers. Joan is now in her nineties, lives in a small flat which she has rented for years, and she struggles every day. She laments the fact she can’t look after herself better, doesn’t go out as her friends have all ‘passed’ and doesn’t receive any services or support. Joan is poor but she would never ever use that word and would be affronted if she knew anyone used it to describe her. But Joan eats one small meal a day usually uncooked which in her own words gets smaller as she gets close to pension day; she massively relies on her fuel allowance but it still isn’t enough to keep the cold away in winter; she never sees anyone as she no longer can manage to go to church; she doesn’t watch television since her old set broke and she can’t remember when she last bought herself some clothes. Yet Joan proudly declares she has enough to bury herself – although no one has had the heart to say that what she has saved will never be enough. There are too many folks like Joan living as our neighbours, the quiet forgotten ones in our midst, their silence speaking to the heart of our vibrant communities. They are not included, rarely noticed, and not missed. They do not show their poverty, yet its truthfulness is as real as that we see in those more visible. Joan is poor. Her poverty is not just of material belonging but of connection, contribution and value. Today’s Day for the Eradication of Poverty should encourage us all to continue the struggle to recognise the poverty of older age, which is so easy to ignore and which all too often remains hidden. Dr Donald Macaskill CEO Scottish Care @DrDMacaskill
I worked as a Local Integration Lead in Glasgow and East Renfrewshire for many years and about 18 months ago, I took up the Local Integration Lead post in South Lanarkshire. It was an interesting challenge as although the post was the same, suddenly I knew no one and no one knew me. As with any new job, it takes time to be accepted and to know what is happening in the area.
Soon after starting in South Lanarkshire I noticed posters etc about John’s Campaign and wondered what it was. I was invited to the Launch of Johns Campaign in Lanarkshire hospitals, and then began my journey.
John’s Campaign was founded after the death of Dr John Gerrard in November 2014. John had been diagnosed with dementia in his mid 70’s but was still managing to live a good life at home. He was admitted to hospital to treat leg ulcers, during his five week stay family visits were severely restricted due to an infection outbreak and his decline was catastrophic. Family said, “ My father went into hospital articulate and able: he emerged a broken man.”
All three hospitals in Lanarkshire had signed up to this campaign and the launch day was a pivotal moment for me, as I heard first hand from staff and families as to how things had gone wrong and people with living with dementia had not always been given the care they required when they required it. There in the room that day it was obvious that staff were passionate about good care and wanted to improve the experience in hospitals for people with dementia. Johns’s Campaign supports the rights of carers to be involved from the moment of admission until the moment of discharge and this has been proved to give better quality of care and improved outcomes. Carers of people with dementia must have the freedom to be with them when they are most needed, not to an imposed time table. All Lanarkshire Hospitals now have open visiting to allow carers to be with their loved one as much as they wish.
I reflected later on this and thought how beneficial it would be if care homes could also be part of the campaign. I explained to care home managers that families would take comfort knowing that all our hospitals and care homes were all signed up to John’s Campaign.
Knowing that care homes already have open visiting, it was an easy step for me to take information from John’s Campaign to independent care home managers and discuss, I explained to care home managers that families would take comfort knowing that all our hospitals and care homes were all signed up to John's Campaign. Without exception they all agreed to sign up and be partners in this campaign. As I prepared to have a launch for John’s Campaign, I asked the Care Home Liaison Team to join with me to prepare for a large launch in the Banqueting Hall of the council buildings, this was to be on “What matters to me day”, their help was crucial and they suggested that we should also involve the council care homes. The council care home managers were all keen to be involved and all signed the pledge as well. The launch day was very well attended and was a huge success.
Edinburgh Care Homes have now also signed up to John’s Campaign. Patricia Chalmers, the new in post Local Integration Lead for North Lanarkshire is now leading on John’s Campaign for that area supported by myself and the Care Home Liaison Team.
Local Integration Lead, South Lanarkshireuntitled
Karen Mack is the Local Integration Lead for Fife – a role she has been on secondment from the Care Inspectorate since April 2017.
Recently she took part in an evaluation capturing the positives generated by the role for both Scottish Care and the Care Inspectorate and the wider HSCP.
Here she is talking about the shape of the post in the past 18 months including the many and varied opportunities for sharing sector developments and learning.
Karen also describes how the roles and responsibilities of the two posts have been managed.
At the heart of the social care sector in Scotland there is a systemic discrimination that is often not named or called out for what it is – it is a discrimination based on sex or gender. Over a year ago in its exploration of the Gender Pay Gap, the Economy and Fair Work Committee of the Scottish Parliament in its important report ‘No Small Change’ identified that gender segregation was a real phenomenon within the care sector in Scotland. Indeed, the evidence submission from Scottish Care to that Inquiry argued that gender discrimination was at the root of a great deal of the issues facing the sector. Yet more than a year later has anything changed? – absolutely nothing other than a wider dialogue and acceptance of the challenges of gender discrimination in care and all that entails. Indeed part of this wider valuing of social care has seen the same Parliamentary Committee’s acceptance of the important economic contribution of social care to the overall economy of Scotland. (See Scotland’s Economic Performance) So at the risk of simplification what do I mean by discrimination and why is it an issue? Put simply discrimination is when you treat one group or sector in society in a manner which is less favourable than the way you would treat another person or group. We can easily recognise the racism which considers one group as being less than another because of their county of origin or the colour of their skin. We have become increasingly aware and critical of the way someone who might define their sexual orientation as lesbian, gay, or bisexual might be the victim of homophobia and hate crime. But I would contend that we have become almost blase, dismissive or immune to gender and sex discrimination? Maybe we shouldn’t be surprised. The great strides of the feminist movement in the 1960s have passed into history. There are increasingly very few folks around who remember the fact that a woman employed by a public authority when she returned to work having had a child was often demoted had she been in a management post. Such occurrences seem the stuff of history text books and yet they were happening less than 50 years ago. We have come a long way in some areas and yet in others we have stood still or even gone into reverse. One such area is the way as a society we think about care as a personal responsibility and care as a professional role. We still think of care as primarily a female activity, almost as if the male of the species has not been endowed with the biological attributes to care for someone other than their own self; as if the skills of empathy, compassion and affectiveness were solely female genetic constructs. I would suggest in the face of this that we need to develop a response to this sex and gender discrimination – a response fit for the new age we find ourselves in. Such a response, I would contend, has numerous strands to it but at least must include the following: • A re-designed early years and child support system that enables real participation of all in the workplace. There has long been widespread recognition that a critical enabler of female and male participation in the workplace is a coherent, high quality and affordable child care and early years system that gives parents confidence to go out into the workplace. Despite improvements we are some distance from achieving this in Scotland. Childcare is still ridiculously expensive and for many the thought of working in the care sector when they have young children is simply unaffordable. Our Government could significantly incentivise investment in social care by giving special credit status to enable care workers to benefit from reduced or even free child care. • An increased emphasis in challenging stereotype and gender segregation in primary and secondary education. We know that many children have consolidated their sense of occupational identity and thus role segregation by mid way through primary school. We must give children opportunities to understand that care is without gender and is both a responsibility of and opportunity for all. The increased emphasis on inter-generational working and shared facilities is serving to put a spotlight on what can be achieved in changing attitudes to older age and frailty. Significant investment from central Government and making this a key cultural and economic priority would consolidate these early foundations. • A real focus on workforce in social care – and that is a whole system and a root and branch reformation of practice. On the one hand there is a growing recognition that social care is an enabler of economic performance and community wellbeing but on the other the way we reward and remunerate those who care suggests a low societal esteem and community value. Undoubtedly the Scottish Living Wage sought to be a step-change but it’s patchy implementation has brought even greater fragility to the care sector. Pay on its own won’t address the challenges of fair work though failing to adequately resource a decent wage will remain damaging of future development. But more needs to be done. This includes addressing the reality that in the medium to short term most of our workforce will be older. As a result we need to address one of the major barriers presented by those who return to or enter the care sector later in life. That is, alongside low rates of pay, the costs of retraining and qualifications. The work of Scottish Care in its recent report ‘The Experience of the Experienced’ has helped to focus upon the unique and distinctive contribution of the mature workforce. It has also highlighted that we need to re-frame and re-design our current learning and qualification frameworks to enable greater appreciation of prior-learning and skills than that which currently occurs. But re-framing conditions has to also be inclusive of the principles of fair work. Is it fair that in social care we effectively electronically tag our frontline workforce? Can we expect fairness in work practice when the way we commission care fosters a lack of trust, embeds low value in the worker and creates employment practices which are less than they could be? • We need a re-gendering of the whole care sector. The inescapable reality of our history is that because the care of our most vulnerable has been seen as women’s work then we have accepted it as a task constituting low skill and worthy of lower financial remuneration. We have not done the same for equivalent male dominated areas of work at a similar skill level. There should be an immense shame in the fact that despite nearly 50 years of equal pay legislation we still have women paid less than men for equivalent jobs. Indeed why is it that men undertaking manual jobs are paid so much more? – well the answer is probably pretty obvious – the financial and political decision making not least in both local and national government have been for long dominated by men. We need a dramatic challenge to the gendering of the role and task of care – better paid workers with fairer conditions employed by providers who operate under realistic and properly resourced contracts. We need a re-conception of care which is evident across the whole of society from children’s books to the latest soap opera. This has to be broader than social care commentators. It entails a cultural and societal multi-media strategy. The American Pulitzer Prize winning journalist Susan Faludi famously wrote in 1991 a book called ‘Backlash: The Undeclared War Against American Women.’ In it she argued that the 1980s saw a backlash against feminism, especially due to the spread of negative stereotypes against career-minded women. Her work has become a classic text of gender and sociology and warns women of every generation that the gains of feminism should not be taken for granted but that re-defining and valuing contribution is a continual challenge. With some glorious exceptions, such as the #metoo social movement, I suspect she has been largely prescient. The care sector in Scotland has huge potential to contribute yet more to the Scottish economy, to re-frame our communities as places that welcome older age and frailty, that recognise care is the responsibility of all regardless of gender. We have the potential of creating a dynamic, valued and skilled social care workforce. But it will involve a dramatic shift in cultural thinking and current social norms – re-defining care so that it becomes gender inclusive means that that task becomes all our concern and not just a woman’s work. Donald Macaskill @DrDMacaskill The Scottish Care workshop ‘Kaleidoscope of Care’ on Friday 28th September explores many of the themes covered in this blog.
This week I gave evidence at the Health and Sport Committee on the proposed Health and Care Staffing Bill, specifically in relation to Part 3 of the Bill relating to social care. Last week, colleagues from the NHS presented their perspective. Whilst the intention of the Bill may be well-founded, the unintended consequences of introducing it could have significant limiting effects for the sector. Social Care in Scotland has come a long way to begin to create the conditions required for improvement and innovation; you can see this in our policy such as the Health and Social Care Standards introduced earlier this year, our legislation such as the Self Directed Support (Scotland) Act, and in our practice such as the new methods of inspection implemented by the Care Inspectorate. I am proud to represent an ever-evolving sector which retains at its heart an asset-based individualised approach to providing care that is grounded in Human Rights. As human beings, and as a society, our wants, needs and wishes change, and this means that to be able to meet the needs of our older citizens, and others who access care and support, we must be flexible to those demands. On top of this, the market itself is ever-changing as we are living longer and in times of austerity, we need to be able to think differently about how care and support is delivered. The biggest concern that I have is that the purpose of legislation is to freeze its components and the proposal to enshrine the use of a tool in statute puts at risk several things:
- It does not allow for professional flexibility, or for a multi-disciplinary approach, or the development of the new models of care and workforce development that the sector so desperately needs to be sustainable.
- It does not consider significant parties to the process such as commissioners who would need to respond to the potential increased demand in resource, or, social workers, who would need to be available to assess those who access care and support in order to provide the data for the staffing tool.
- There is a real risk of the legislation directing resource, meaning that limited funding may be directed towards meeting staffing requirements, or towards meeting the potential additional administrative burden upon a sector who already have to report both to the Care Inspectorate and to their commissioners.
- Most significantly however is the potentially devastating impact upon the recruitment and retention crisis that the sector currently faces. The SSSC workforce data report published last month shows a Stability index of 77.1% that means almost a quarter of staff are changing roles or leaving. Our own data shows that more people leave than enter the sector within their first 6 months of employment, and that the nursing vacancy rate is currently at 32%. This cannot continue, as evidenced by last weeks headline news that 19 care homes closed because they cannot recruit nurses. We must too bear in mind that last year some of our providers were paying £1200 per night for an agency nurse, and that whilst the number of nursing agencies has increased by 18% in the last year, there is no greater pool to draw from. Creating legislation does not in itself create nurses.
The whole issue that the Bill has been created to address needs a solution that is co-produced from across the health and social care landscape, offering opportunity and flexibility to free up systems and allow the optimisation of the workforce through a multi-disciplinary approach, with career pathways which value our staff and enable them to progress, and to allow for the use of technology and other solutions which the National Workforce Planning Group may already be exploring or which may not even exist yet. A care home is not a clinical setting, it its by its very definition, a home. People who live there are surrounded by their own possessions and sometimes their furniture and décor. And as is also the case for our care at home workforce, they build relationships with those who both live and work there. We need to enable our skilled workforce across the sector to exercise their expertise and professional judgement and allow them time to just ‘Be’ with the people they support. Fundamentally, the Bill in its current format puts that at risk. Our evidence is in, next week the regulatory bodies will be presenting, and thereafter the committee will make their decision on how to proceed. Every single vote will count. #careaboutcare You can watch live or pre-recorded on SPTV and you can see our submission here Karen Hedge National Director, Scottish Care
#Every3seconds – the Third Dementia Strategy One Year On
September 2018 marks the seventh World Alzheimer’s Month, an international campaign to raise awareness of dementia and to challenge stigma. This year’s campaign promotes the important message that every 3 seconds someone in the world develops dementia. That is a startling and arresting figure highlighting the extent of dementia as a worldwide health challenge. It has also forced me to reflect on what has happened since the launch of the Scottish Government’s Third Dementia Strategy which was published just over a year ago on the 27th June 2017. The Strategy states boldly in it’s Executive Summary that: ‘Our shared vision is of a Scotland where people with dementia and those who care for them have access to timely, skilled and well-coordinated support from diagnosis to end of life which helps achieve the outcomes that matter to them.’ It has numerous action points and recommendations. A blog isn’t the place to reflect on each of these in depth but I do wonder how much closer are we to achieving the vision of the Strategy? So … here are three brief thoughts… Workforce: a core part of the Strategy is the recognition that equipping and skilling up the workforce is essential for the delivery of effective dementia support and care. In some parts of the system – and I’ll be frank – in the NHS we are getting there with a good degree of resource improving excellence and championing the cause. But I lament the inadequacy of resource being allocated to the social care workforce which delivers the vast majority of support to folks living with dementia in Scotland. We’ve got the courses and the programmes, the talent and the willingness – what we lack is the capacity of organisations to free up their staff to do the training and develop their practice. In particular care at home organisations are struggling in the face of rising costs and reductions in fees to be able to survive never mind equip their staff to achieve dementia excellence. I hear from so many sources that because of their own financial pressures that local authorities are cutting training and learning budgets to the bone. Put simply we can never achieve a skilled dementia-confident workforce in social care unless we pay for it. Palliative care and end of life. Most palliative care and end of life support is delivered by social care staff. It is they who are present to reassure and offer comfort, to chasten fear and grant solace as people struggle with dementia and with what that means. Yet we support them so poorly. Countless workers are leaving their jobs because of the emotional fatigue which is the real cost of delivering human centred palliative care and yet something simple like attempts to create bereavement support for this group of staff are continually frustrated. Add to that the existence of effectively electronically tagging our workers and the obscenity of 15 minute visits which treat people with dementia with such indignity and it’s little wonder we have an increasingly burnt out workforce. Thirdly, the Strategy recognises the invaluable and fundamental role of informal carers in providing dementia care in Scotland. We now have a Carers Act. The aspiration of that Act is to support family carers and to enable them to continue to support their relative who might be living with dementia. Even though it’s still early days the comments I am hearing suggest to me that this is yet another good Government policy and legislative intervention which is well intentioned but poorly implemented because of inadequate funding. Care providers and their staff daily work alongside informal carers and I know that in exactly the same way that paid staff are emotionally drained then so too are countless hundreds of our army of thousands of family carers. This has been compounded by the dramatic loss over the last year or so of local day services and opportunities to offer respite and rest to families. So the vision and aspiration of the Third Strategy seem a distance away from the reality of many lives being lived with dementia across Scotland. The Strategy also states: ‘At the heart of this strategy is a recognition of the need to ensure a person-centred and flexible approach to providing support at all stages of the care journey.’ The 21 commitments might be being partially achieved but I find it hard to be persuasive of that to the person who spoke to me recently and who told me the story that because her local authority had needed to save some money on its budget that it had changed the supplier of continence pads – she has had to use the savings she had put away for a holiday to buy extra supplies which work for her husband with late stage dementia. I can’t really face her and say we are now one year into our Third Dementia Strategy and are doing as well as we could or should. Dr Donald Macaskill @DrDMacaskill
Three months ago I wrote a blog (Social Care Luddites) arguing that the social care sector was amongst the most innovative around in terms of technology and digital design and usage. I argued then and still would that the sector has not been as fully recognised, valued and involved by others, as it should have been, should be and must be as we move into the new technological future. I am therefore delighted that on Friday Scottish Care, with the invaluable support of the Clydesdale Bank, will be hosting TechCare, CareTech. This sold out event brings together a whole range of developers, designers, providers and staff from across the care home and homecare sectors in Scotland to explore issues of technology in the care of older persons. It’s been a busy few months. On a personal level shortly after I wrote the blog I had a conversation with a friend who just happens to be a senior academic at Oxford University who researches and teaches in the area of Big Data. We sat in my living room and she spotted I had an Amazon Alexa. Within 30 minutes of a conversation I had disconnected the machine and put it in its box where it has remained ever since. There then started several weeks of personal learning and research – including some very interesting holiday reading! What began as an exercise in me collating my own thoughts on technology ended up in a 60 page report ‘TechRights: human rights, technology and social care’ which will be published tomorrow at the TechCare event. I am extremely grateful for all those who sent me books, articles and papers to read and spent time in conversation with me. Why have I spent so long on this area of interest? Well probably because the more I read and heard the more I was convinced that issues of technology and data and the way we use Artificial Intelligence, Big Data and the Internet of Things present us with some of the most significant ethical, moral and human rights challenges of our generation. When I then went on to consider what all these developments meant and might come to mean for the way in which we care for and support some of our most vulnerable citizens, I was convinced that these issues needed to be highlighted as of real significance and priority for the social care sector and for wider society. The advances in technology – not least in the ability to process gargantuan volumes of data, to develop and use smart technology for the person and in the home, the developing use of robotics and Artificial Intelligence – are happening at break-neck speed. What was impossible last year is this year considered routine; what was unimaginable a decade ago is now technology which is redundant and obsolete. The way we decide, as a society, to respond to and develop further technological innovation, will to a large extent, determine the sort of future we create for both ourselves and our children. It is, I believe, as fundamental as that. So the range of issues that TechRights explores include the role of Big Data and data platforms; the necessity of creating robust ethical and human rights frameworks around the work we do; the importance of the citizen being involved in the design, ownership and control of the data which is gathered upon them. But given its focus on older persons care, one of the main themes is that of robotics. We have already seen care homes across the world begin to use robots in the care and support of older persons. Indeed in Japan the use of robotics has been significantly culturally accepted as normative. What about Scotland? Do we want to address the workforce challenges we face by using robots to care? Do we want to free up the over-stretched care home staff by using robots more? Do we envisage a time where the robot has the conversation with someone living with dementia rather than the human carer? The human rights frameworks that we work within and under were developed shortly after the Second World War. Indeed this year we celebrate the 70th anniversary of the United Nations Declaration of Human Rights and that legacy down through the years has been invaluable in shaping modern society. But I would argue we have now reached a stage in human history where we need to re-articulate those frameworks and human rights to speak to a new age and new circumstances. We need to develop a human rights and ethical framework for a technological age of AI, robotics and Big Data. Simple reliance through case law and other juridical means we have will no longer protect our inalienable human rights. At the heart of this, I would suggest, is the discussion about whether or not we should have a human right to be cared for by a human being? Is that as inalienable a human right as the right not to be tortured or the right to life itself? At the very least we need to start to have that debate and begin to articulate the parameters and boundaries of what we believe human rights mean in social care in this technological age. I hope ‘TechRights’ will make a small contribution to that discourse. I leave you with the words of one of the foremost developers of Artificial Intelligence, the American Joseph Weizenbaum, who wrote:–
‘to substitute a computer system for a human function that involves interpersonal respect, understanding and love, is simply obscene.’
Dr Donald Macaskill CEO, Scottish Care @DrDMacaskill
Apologies for the delay in writing up this blog but it is something I did not wish to write. For some time my mum has been living with dementia. As a family we adjusted to my mum’s needs as she progressed in her journey; from thinking that there was something wrong, which she could never put her finger on to visiting the doctor and discussing worries, ultimately receiving a diagnosis. To be honest the diagnosis was largely confirmation of what we already suspected and gave us a focus for discussing how we could adjust the support we offered to my mum to ensure she could continue to live well. As a family we thought we had been proactive and put plans in place for future needs. Power of Attorney, DNR had been openly discussed and agreement reached about how to honour my mum’s future wishes. However although meaningful discussions had happened, what we were not prepared for was the emotional impact of having to follow up with some of these decisions. My mum started to leave her home at night, and concerns were raised about her safety and the risk to her wellbeing, this ultimately led to a hospital admission and numerous reviews and plans for her long term care. We attempted to support my mum back home and enjoyed a weekend with her in her home. However this required 24 hour support with my brother or I present to maintain safety, which was not sustainable in the longer term but was an attempt to honour my mum’s wishes as expressed in her POA which was that she would live and die within her home with extra support if this was required. Ultimately my mum moved to a care home and slowly we are adjusting to this change. My mum is taking an active part in the routines of the home in maintaining the garden, doing some cleaning up of dishes after meals and has a sense of pride in what she has been able to achieve in the short time she has been there. I have been working in care for over 30 years and hope that I have been able to advocate on behalf of providers and the positive impact that they can make but my own reflection would be that the decision to support my mum to move into care has not come without a profound sense of loss and guilt. My mum has been a strong independent woman, who has dealt with major events throughout her life in a resilient fashion and shown that not only would she survive but also thrive. The move to a care home appeared to shrink her as she attempted to adjust to her new environment, which I think she believes to be a hotel she is temporarily living in, the gardening and cleaning being something she is expecting to be paid for, which my family are happy to help facilitate. The fear associated with my mum moving into care is wrapped up within feelings of my mum losing her sense of self and the coming to terms with how we can support her to maintain a level of independence and a sense of agency. My mum has been supported by some wonderful staff who when spending time with her appear to intuitively have developed an understanding of how to best approach my mum, they know that gentle banter and a humorous interaction will be more successful in fostering a relationship with her. My mum’s consistency in reaction to these individuals gives me a sense of content that when supported by such staff that she is safe and well and family members are of the same opinion. We are a reasonably articulate family with experience of health and social work services and reflecting on the last year I am aware of outstanding issues which I do not think have been resolved to our satisfaction. On diagnosis I expected and requested post-diagnostic support, more than a year after diagnosis we still await this and when it is, if it is offered, it will be at a point when my mum is not able to use it meaningfully. Attempts to arrange home care and daycare opportunities did not appear to be supported by statutory services and the response from statutory services appears to be have been in the light of major concerns about health and safety, concerns about imminent danger, rather than a planned therapeutic intervention which may have delayed the move into a 24 hour care setting. Brian Polding Clyde Local Integration Lead, Inverclyde & West Dunbartonshire
When is a village not a village?
I come from a long line of villagers! Indeed my siblings and I are the first in a family line stretching back hundreds of years who were not both born and brought up in a village. So the nature of village life and the difference between that and other forms of settlement has always intrigued me. My interest has increased in the last few months with the growing number of people talking about ‘care villages.’ So I set out to try and discover what these ‘villages’ were all about. Care villages have been with us for some time. They are commonplace in the United States, Australia and to a lesser extent in parts of Scandinavia. In the US, about 6% of all over-65s live in self-contained retirement flats or bungalows with communal facilities and on-site care provision. Their growth and development in the UK have been slow but is now gaining rapid pace, indeed there is even a London based organisation called the Associated Retirement Community Operators (ARCO) dedicated to their development and increased prominence in the health and social care landscape. However, a lot of the commentary in the last year about care villages has come from a growing awareness of what has been happening in Holland. The principal idea behind the care villages is that you buy or rent your own apartment within a built environment and as a result have access to care and support services when you need them within close proximity to your flat or house. They are all different. Some have on-site shops, cafes and restaurants and offer a range of activities ranging from golf or fishing, tennis to bowls. Others have dedicated buildings to support you when you grow older and less independent, develop dementia or have had a stroke etc. Recent criticism around some of the care villages has centred around so called ‘exit fees’ which, depending upon the length of stay in a village, can be up to 10% of the original property purchase price. However, in some cases it can be as high as 30% after just a few years. The Law Commission in England has declared that such fees are causing ‘anger and distress’. Providers argue that such ‘exit fees’ enable weekly or monthly charges to be kept low. Without getting into the contractual detail, it’s worth exploring some of the much vaunted Dutch models. The community which is often quoted and heralded is at Hogeweyk, thought to be the world’s first ‘dementia village’, which is near Amsterdam. This is a self-contained village for individuals who have advanced and ‘severe’ dementia. It has its own supermarket, beauty salon and leisure centre. Hogeweyk is a gated community where 150 residents live in six-room houses, each designed around one of four ‘lifestyles’. These are selected for residents after tests and interviews alongside their families. Residents are placed according to their former lifestyles which is meant to establish continuity based on reminiscence therapy and its focus is on familiar environment. There is a permissive philosophy which grants small ‘freedoms’ to individuals within a boundary of support and self-contained security. There is a developing desire in many parts of Scotland of the need to adopt the environmental reminiscence model which Hogeweyk has successfully promoted. However it would be erroneous, I believe, to think that reminiscence environmental and design approaches can only be adopted within a ‘village’ as understood at Hogeweyk. This is also care which comes with a price, partly because of the strong State support for such models within the Netherlands. The Netherlands spends 4.3% of its GDP on long-term care, the highest in the OECD. Scotland spends a lot less. So what does all this have to say to social care in Scotland. Well, firstly there is a growing number of ‘care villages’ in existence, being planned and starting to be developed.  But might I suggest that it is important that we take a step back and reflect on what it is that is being developed in our midst. There have been a number of voices being raised in concern at such developments. Some are alarmist, others are worthy of attention. Have ‘care villages’ a validity and is this a trend which is illustrative of societal change at a fundamental level? Or are they a concept which might lead to exclusion and fragmentation within communities? The classic dictionary definition of a village is that it is ‘a group of houses and associated buildings, larger than a hamlet and smaller than a town, situated in a rural area.’ But most folks who live in a village, such as the generations of my family, would very quickly say that that definition only paints part of the picture of what village life is really like. They will rather talk about it being a place where they belong, where you feel connected and involved, included and valued, where you feel safe, are known and recognised; that each has its own character- and that each has its own characters! Now granted this is maybe a bucolic image – because for some people villages can exclude, can make you feel you don’t belong or fit in or feel welcome. But, in general and for the majority, villages are more than just a set of buildings – it is the people who make the village. But what about care villages? Recently I wrote a piece for Architecture and Design Scotland called ‘Re-imagining Age and Home’ about the concept of the city centre becoming a place where older people could feel as if they belonged; where care homes and accessibly designed individual accommodation could flourish, and which in turn would become caring places. I suggested that we are now faced with a real potential to redesign our city and town centres as positive locations to grow old in and to become places of age acceptance. Technology enabled care can re-connect and renew not just individual lives, but entire communities. Is there an issue that some models of ‘care village’ serve to withdraw people from connection or at least only enable connection and relationship with a limited few? Do we want to isolate the reality and visibility of people living with advanced dementia and palliative and end of life into locations separated off from the mainstream community? Is there a socio-economic issue that we risk creating communities of the like, both socially and by default diminish diversity? Is there a danger that we are sub-consciously creating a message that older age needs to be distant from the centre rather than at the heart of our society? Or are we just recognising the changing nature of the human person which wants increasingly, some would argue, to be ‘an island apart from the main’? I acknowledge many of the proposals and plans speak about inter-generational living but it might be argued that a gated community (for whatever reasons the gate is there and in whatever form the gate exists) is still a community excluded from the rest? I think we need to start to ask these questions and also to, as a society, begin to explore what our answers might mean. But I also wonder if we need to re-vision our concept of the village and create it into an urban model for care and support? I mean by that, why cannot we re-imagine a care village – to make it not a community that is gated and separate but rather a ‘physical but invisible’ bonding and binding of a set of physical buildings in a community, such as a housing with care building, a care home, a specialist dementia unit, a community care hub, an inter-generational centre, a mixed nursery and older person’s day support centre? The connections would be not that they are all behind a physical boundary but rather that they are in a real connected partnership. They are places who collaborate together, share commitment and share resource. There is, I believe, a real opportunity for homecare, housing support and care home providers to re-imagine care around the person and to form partnership and co-productive re-design models not just with those organisations who provide care and support but those who receive it and their families. That might be a model for a village or town with care at its centre. The Scottish Care National Care Home Conference, ‘A caring place’ will explore some of these issues and ideas in different sessions throughout the day, and indeed we are pleased to announce that the University of the West of Scotland and the School of Innovation at the Glasgow School of Art are starting a project with us in the next few weeks around the future vision for care homes in Scotland. To paraphrase the old African saying, that it takes a ‘village to raise a child’, I would suggest it ‘takes a village to grow old in’ – it’s just that we might need to change what we define as a care village? Dr Donald Macaskill  https://www.lawcom.gov.uk/project/event-fees-in-retirement-properties/  For the story of Hogeweyk see https://www.theguardian.com/society/shortcuts/2018/mar/12/life-dementia-village-development-kent-hogeweyk  Some links to existing villages and recent news stories about plans for new villages in Fife, East Renfrewshire and elsewhere: http://nethanvaleretirementliving.org.uk/ http://www.heraldscotland.com/news/13157026.Plans_revealed_for_Scotland_s_first_retirement__mini_town_/ http://www.scottishhousingnews.com/19442/plans-unveiled-new-methil-care-village/ http://www.scottishhousingnews.com/19362/250-home-retirement-village-planned-newton-mearns/