Ai and human rights: the urgency of ethical action.

Last Tuesday, the 10th of December was the annual international Human Rights Day. It’s a day which gives the global community an opportunity to focus on the importance of protecting the human rights of all citizens. Here in Scotland in a video message for the day I mentioned that it’s important on the international stage that we don’t lose sight of the work being put together to create a Convention on the Human Rights of Older Persons about which I wrote a few months ago. But I also reflected in my message on why it was important that Scotland should seek to re-introduce the Human Rights Bill which had earlier been proposed and around which I have already written. The decision of the current Scottish administration not to continue with the Human Rights Bill is very disappointing not least because in times of straightened budgets and real challenge in the world of social care the rights and dignity of older persons needs a special attention and focus, and a legal framework of rights enables that to happen with a sharper intensity.

More broadly, however, the issue of human rights in social care and aged care in particular has been uppermost in my mind. I’ve been very honoured to have chaired a small working group of individuals who have been concerned about the developing role of artificial intelligence in the delivery of aged care. The group has been working under the auspices of the Oxford Institute for Ethics in AI and the Digital Care Hub. It has developed a set of principles and guidance together with case studies to describe what we considered to be the key components which should lie behind and influence the use of artificial intelligence models and tools in the delivery of Adult Social Care.

This I think is really important because it is in the interface of technology and social care that there can be a danger that the rights and dignity of older persons or indeed any other group of people can be at risk. This is especially, I think, the case in these current times when decisions might be made on economic grounds rather than on the basis of the best interests of individual citizens.

So, I want in what remains of this blog to explore these principles but also to examine what is happening in the wider world of Ai around the practice of ethics and human rights not least in the various codes and conduct documents which have been developed to reassure those outside the tech industry that there are appropriate balances and safeguards which are there to protect us. Whilst many of these are indicative of a robust approach, I want to suggest that for those of us who operate in the world of social care that we need to increasingly be watchful and therefore the Oxford ethical approach and model for social care is all the more important.

The first thing to note is that it is certainly true that for bodies such as the United Nations and leading tech firms the establishment of frameworks to guide the responsible use of Ai has become an issue of real importance in the last couple of years. Take the United Nations for instance. In September 2022 the UN System Chief Executive Board for Coordination endorsed what they called the Principles for the Ethical Use of Artificial Intelligence in the United Nations System. In essence these ten principles emphasise the following:

  • Do No Harm: Ensuring Ai applications do not cause harm to individuals or communities.
  • Defined Purpose, Necessity and Proportionality: Utilising Ai for clear, legitimate purposes aligned with UN values.
  • Safety and Security: Safety and security risks should be identified, addressed and mitigated
  • Fairness and Non-Discrimination: Preventing biases and ensuring equitable Ai outcomes.
  • Sustainability: Artificial intelligence should be aimed at promoting environmental, economic and social sustainability
  • Transparency and Explainability: Maintaining openness about Ai systems and their decision-making processes.
  • Responsibility and Accountability: Assigning clear accountability for Ai operations.
  • Privacy and Data Protection: Safeguarding personal data within Ai applications.
  • Human Autonomy: Ensuring Ai supports human decision-making without undermining autonomy.
  • Inclusion and participation: Organisations should take an inclusive, interdisciplinary and participatory approach and promote gender equality.’

We have also witnessed similar frameworks being developed by the major tech companies such as Microsoft who adopted ethical Ai principles focusing on fairness, reliability, privacy, inclusivity, transparency, and accountability. Google established AI principles emphasising socially beneficial Ai, avoiding harmful applications, and incorporating privacy design and IBM have sought to implement Ai ethics guidelines prioritizing trust and transparency.

This flurry of ethical activity led to eight global tech companies in February 2024 committing to applying UNESCO’s Recommendation on the Ethics of AI, integrating these values into their Ai development processes.

The Oxford Institute for Ethics in AI outlines seven ethical principles for AI in social care: truth, transparency, equity, trust, accessibility, responsiveness and humanity. These align closely with both UN and tech companies’ frameworks:

Truth and Transparency: Correspond with the UN’s emphasis on transparency and explainability, and tech companies’ focus on open Ai operations.

Equity: Reflects the UN’s fairness and non-discrimination principle and tech firms’ stated commitments to unbiased Ai.

Trust: Parallels the UN’s responsibility and accountability, fostering confidence in Ai systems.

Accessibility: Aligns with inclusivity efforts, ensuring Ai benefits are widely distributed.

Humanity: Echoes the UN’s human autonomy principle, ensuring Ai supports rather than replaces human roles.

Despite these alignments, certain gaps persist which I think will pose particular challenge and priority for those of us who work in social care in the months and years ahead, specifically

Implementation and enforcement: While principles are established consistent implementation and enforcement across very different contexts remains a challenge. What will be really important for the Oxford Principles is that they are continually evaluated, tested and assurance is sought that they are being implemented in as robust a manner as they should be.

Secondly addressing bias. There needs to be an ongoing effort to identify and mitigate biases in the Ai systems in order to prevent discrimination. It is sadly the experience of many of us who work in and deliver aged care services that the unconscious and sometimes subconscious age discrimination bias which exists within wider society is evidenced in so many of the systems of support and models of intervention. We need to make sure that Ai systems aren’t just non-discriminatory in terms of other characteristics but that they are definitively age unbiased.

In addition, it is important that we prioritise global inclusivity ensuring that Ai governance includes diverse perspectives from the whole global community and not solely those nations often described as being ‘developed’.  We risk a real marginalisation of communities and nations in the ongoing development of Ai not least in aged care if we do not ensure global inclusivity.

And lastly, transparency. Operationalising transparency and complex Ai systems requires continuous refinement. We are some distance away from that degree of sophistication which would ensure the absence of bias, consistent application and the enforcement and robust adherence to ethical principles whether that be the ethical framework developed by the UN or by the major technology companies.

I would suggest that these all to some extent align themselves with the common ground which the Oxford Institute Principles for Social Care describe. It is positive that there is such a convergence, but that reality also highlights the need to engage in continuous dialogue between those who are developing Ai tools and models, those who commission, contract and purchase such tools and fundamentally those who are impacted in the way in which they live their lives as individuals who use and access social care support.

There is a real possibility that Ai can positively revolutionise the support of some of our most valued citizens but if Human Rights Day shows anything it shows us the urgent continuous need to be ever watchful to ensure the realisation of human rights for all across our shared world.

Donald Macaskill

Photo by Markus Spiske on Unsplash

Human Rights Day 2024 Blog

Human Rights Day is celebrated globally on December the 10th, the day serves as a powerful reminder to protect fundamental rights for all. In Scotland, organisations like Scottish Care use the occasion to highlight challenges and progress in social care. Scotland also observes this day with organisations, activists, and communities hosting events, discussions, and campaigns to raise awareness about ongoing human rights challenges and celebrating advancements in this field. 

At Scottish Care, we utilise this day to celebrate the amazing work from our members and colleagues championing human rights in their communities. One standout example is the Silver Pride Project, where our colleagues in Ayrshire are contributing to creating safe and inclusive spaces for older LGBT adults living with dementia. It showcases how celebrating the right to freedom of expression can translate into practical change for marginalised communities. 

Scottish Care also celebrates the work of our colleagues in Ethical Commissioning, which emphasises integrating human rights into social care contracting. In 2023, workshops highlighted how current social care procurement models can infringe on the rights of those who access care and support. Recommendations from the subsequent report included making rights-based care a contractual prerequisite and ensuring shared accountability between providers and commissioning bodies. This approach aims to enhance the dignity, independence, and outcomes for those accessing care. 

However, despite these examples, systemic issues persist. For one the Scottish Government’s 2024 Budget. This budget allocated £21 billion to health and social care but failed to provide ring-fenced funding for social care services. Scottish Care’s response to the budget highlighted that this omission places providers under immense financial strain, exacerbated by unaddressed National Insurance increases. We are working actively to address our concern with the Scottish Government.  

Another issue that persists is the pushback of the Human Rights Bill. This Bill was supposed to create a legal framework for the Scottish Government to embed international human rights within domestic law and drive transformative, positive change for people. We responded to the call for consultation of the Bill, though we had concerns we supported the ambitions of the Bill. However earlier this year the Bill was taken out of the 2024-2025 programme for government, with no clear plan of a way forward. 

As part of the Scottish Food Coalition, we are advocating for the reintroduction of the Scottish Human Rights Bill into the Scottish Government’s agenda for this term, through the #BringBackTheBill campaign. The delay in the Bill’s progress has sparked widespread concern amidst worsening economic conditions. This event will unite organisations, grassroots groups, and individuals under the banner #OurRightsOurFuture, urging the government to prioritise human rights protections.  

Demonstration details:  

  • Date: Tuesday, 10 December 2024 
  • Time: 10:00 – 14:00 GMT 
  • Location: Scottish Parliament Building, Edinburgh 
  •  More information is available via Eventbrite 

 

The invisibility of social care: the failure of the Scottish Budget.

The Scottish Budget was published on Wednesday and to say that the social care sector in Scotland was disappointed would be a massive understatement.

I think it is fair to say that regardless of organisation type, charitable, public or private most people involved in social care delivery in Scotland at this time are deeply troubled at the failure of the Scottish Government to own up to the crisis currently being endured by and the risks being faced by the sector.

The reality on the ground behind the rhetoric of claims of additional spend and funding for social care is that Health and Social Care Partnerships in order to balance their budgets are having to make horrendous decisions to cut services. It seems truly perverse that whilst there is significant additional funding going into the NHS (including into delayed discharge work) that the social care sector is facing some of the most savage cuts it has ever had to endure. That means only one thing – people will die.

Now that might sound like scaremongering, but it is sadly what has always happened when social care services are cut and withdrawn. I have written before about this, indeed nearly a year ago I shared the data which shows that every day two people die in Scotland whilst waiting for or not receiving the social care support they need to stay alive. Anyone at the frontline today knows that a year on the situation is so much worse.

The truth behind the fable of parliamentary debate is that care providers and employers will enter this winter not by increasing services and meeting the growing demand, including from delayed discharge in hospitals which are at record levels, but instead will be making staff redundant, closing units in care homes and handing back packages of homecare to local authorities who have themselves no capacity to meet the needs of those who are desperate to be supported. And this is all without the nightmare caused by the UK Labour Government through the changes in Employers National Insurance which unless mitigated risks whole system collapse.

If you turn on the television screens in the last couple of days you will hear frontline clinical staff in the acute NHS sector talk of the pressures being faced across the UK, and that includes Scotland, from what has been termed a ‘quademic’ of RSV, influenza, Covid and norovirus cases. Respiratory conditions at this time of year put inordinate stress and pressure on our social care and health systems so one would have hoped for a targeted and specific focus on social care in this week’s Budget.

What we got instead on Wednesday was the reality of a lack of priority. In a parliamentary debate lasting most of the afternoon social care was virtually invisible – it was mentioned 12 times in the thousands of words and only four times by the Finance Secretary who did, however, acknowledge that:

“social care funding,… is absolutely vital if we are to tackle delayed discharge and look at the system as a whole system, including both the NHS and social care. That is why we have put record investment into social care, including, of course, by ensuring that our social care workers get the pay that they deserve.’

No one is denying the record sums but if they are not enough, they are not enough no matter what records are broken. Equally no one is going to deny the importance of paying the Living Wage to frontline care and support staff though in truth that level is a very very low level to seek to be pleased to be achieving.

But it seems nonsensical to be faced with the reality that care staff and care home nurses are being laid off this past week not because there is no work to do but because organisations cannot afford to deliver the care needed by what they are paid, and commissioners cannot afford to allocate packages because they have run out of money. Knowing you are getting more money tomorrow rings hollow when you lose your job today.

Paradoxically today is Small Business Saturday which is now in its 12th year and has a focus every year on encouraging an increased awareness of the needs of small local businesses.

The vast majority of social care provision in Scotland is not delivered by large corporate organisations but by small businesses, whether charitable, not for profit or private. Many of these are small family run businesses with some being in families across the generations. They are often in remote and rural parts of the country but also in areas where in the town or village concerned they are the largest employer.

I find it increasingly ironic that we hear our political leadership emphasising the criticality of small businesses to our economic wellbeing as a nation, and yet at the same time one of the largest sectors in the small business world are our social care providers.

Indeed the Scottish Government recognises that small businesses are a critical part of the Scottish economy and the Government’s own national strategy asserts that:

‘We aim to grow our economy by making Scotland one of the best places in the world to do business. This means supporting and listening to small and medium-sized enterprises (SMEs) and working to deliver the right support at the right time.’

I find this fiscal silence around Scotland’s small business social care employers and providers truly baffling if only because it makes no economic sense whatsoever to say nothing of its lack of health whole system thinking.

Investing in small and medium-sized enterprises (SMEs) within Scotland’s private social care sector offers substantial economic and societal benefits. Indeed, the Independent Review of Adult Social Care in Scotland – the Feeley Report – emphasised that social care support is an investment that creates jobs and economic growth.

It makes complete sense to invest in small social care businesses not just as economic contributors and drivers in our communities, but critically as a key partner in the nation’s health and wellbeing. Instead of investment at this time we are faced with restriction and closure.

The Budget last week has failed Scotland, it has failed our small social care businesses and the sector as a whole, and shows that there is little or no understanding of the critical issues facing those who deliver care and support or indeed those who use social care services.

In the discussions and negotiations, the debates and deals before the Budget is settled in February, we simply have to put social care as a whole sector at the centre of our focus rather than the invisible sector it has been turned into.

Donald Macaskill

Is there a ‘life beyond death? The role of synthetic resurrection in bereavement.

It isn’t often that there is a happenstance coming together of events – on the 2nd to the 8th December next week we will mark National Grief Awareness Week and then it will be UNESCO World Futures Day on the 2nd December. The latter is a day which is a global event inviting countries to embrace the future and develop their capabilities in terms of foresight and readiness, ‘and proactive policy-making to ensure sustainable development for future generations.’

I am struck by this juxtaposition because of conversations I have been having recently about the nature of bereavement and grief especially as it relates to the emerging concept of synthetic resurrection.

Synthetic resurrection can be described as the use of advanced technologies, particularly AI, digital media and holography to recreate aspects of deceased individuals. This can include generating digital avatars, voice replicas, and interactive personas that simulate the presence and behaviour of a deceased person These are now astonishingly life-like and wholly believable and are only going to get better.

One of my recent discussions mentioned the work being done by the organisation Deep Fusion Films to create a podcast series called ‘Virtually Parkinson’ which features an Ai-generated version of the late Sir Michael Parkinson. In the publicity and discussion around the announcement of the project in late October, Deep Fusion made it clear that they were not trying to deceive anyone and would make it very clear that this was Ai-generated, the result of analysing over 2,000 interviews. But with the aid of a generated synthetic voice these will be new and unscripted interviews with contemporary celebrities.

Undertaken with the consent of his son and family, these interviews will no doubt bring the idea and reality of synthetic resurrection right before the public when they are aired.

It is perhaps stating the blindingly obvious that synthetic resurrection raises complex ethical, human rights and moral considerations. But it is also stating the obvious to say that these cannot be ignored and that the growth of such techniques and approaches is here to stay. How we manage the ethical questions they raise and how we adjust our societal and individual expectations is what will determine whether new approaches will bring individual and societal benefit or not. Wishing the science had not been invented will not make the reality of existence go away.

I want to explore what the future use of such approaches might augur in terms of both positive and negative aspects.

First some ethical and human rights considerations:

The most obvious issue is the extent to which a deceased person has control over consenting to the replication of their image or personality. Who actually owns the digital likeness of a deceased person and the whole issue of digital legacy is at the moment an area fraught with contradictory views and the legality is as yet unresolved.

However, we still retain certain though not full rights of privacy posthumously. The use of personal data including voice recordings, texts, videos or photographs both of the deceased or anyone else they may interact with including family could be a breach of the fundamental right to privacy.

Then who decides that such synthetic modelling should happen. It is one thing if it is the deceased in an informed and consensual manner it is another if it is other family members or even strangers. And even if one member of a family agrees to synthetic resurrection, what about the risk of disputes or family breakdown?

There is also the risk as technology develops and the possibility of commercialising avatars and associated models becomes commonplace that grieving individuals might be emotionally vulnerable and susceptible to exploitation from those who offer synthetic resurrection services. Such services could make an individual dependent upon them – perhaps for fiscal benefit.

It is a natural stage of grieving to work through the pain of loss and to learn to live without the deceased and to re-orientate your living. What if you started to use a synthetic resurrection service which prevented such a critical part of mourning and grieving? What emotional and psychological harm could result in such ‘avoidance’ of grief? Is a grief delayed, and a resolution started something which could result in greater psychological and physical harm? What would be the risk of psychological harm as a result of such over-dependency and the inability to move on in life?

Because these technologies are so new there is limited research available about their impact on an individual or upon their grieving. Is there a risk that such synthetic resurrection might pathologise ‘normal’ grief and foster an unhealthy attachment where a person could not ‘let go’ and indeed where the very finality of death was ignored?

Death and grief are culturally sensitive and rooted experiences, not least in terms of many religious and belief traditions. What does synthetic resurrection say to the Christian understanding of resurrection? There are other cultural traditions and humanistic philosophies which emphasise the finality of death as part of the human experience. Is there a danger that the very sacredness of life could be turned into a programmable phenomena? Synthetic resurrection might conflict with these views and result in a changing of moral norms.. Nothing wrong with that in principle but it is often desired such change occurs through popular and common consent.

There are also a whole host of considerations behind the nature of the interactions with synthetic resurrection services. We have referred above to the risks within the bereavement journey, but they also surely raise issues relating to the authenticity of human relationships and dialogue per se. What is the meaning of a relationship which one fosters with a piece of technology, it is after all not the ‘real’ person, even if a sense of response may become so sophisticated that it could portray masked reciprocity? What impact might the use of such technologies have on the exercise of authentic human memory when true physical interactions are masked with inauthentic constructions of the moment? Is there a risk that such interactions become uni-dynamic and are not shared with others? Are there not also questions around the potential misuse of such technologies to create misleading content or a risk of the exploitation of the likeness of the deceased?

So far, I have detailed ethical and human rights concerns and objections, but there are strong advocates of the use of such synthetic resurrection approaches who state that there are clear benefits.

It is argued that they could offer comfort, and potentially closure in situations where death and loss was traumatic and sudden, where the person was not enabled to resolve issues, and where that lack of resolution is preventing them from moving on in life.

Others have suggested that the use of such approaches enables a family to preserve the legacy and share the memories of those who have died not least with generations, perhaps a child who was unborn to a deceased parent, and that such sharing and creating of memory can bring real benefit.

One could also see the way in which the use of such avatars and synthetic models of famous individuals and personalities could enhance the continuation of history within educational and learning environments.

It is further stated that if properly used with clear ethical boundaries they could be tools that helped an individual create self-healing personal and individual experiences that benefitted them, and that with appropriate ethical and human rights standards that there is no reason why such services could not be safely utilised. This might especially be the case in the support and care of those living with neurological conditions such as dementia.

At the moment it is likely that synthetic resurrection approaches will only be available to those who are wealthy – but that will soon change, and it is therefore really important that as a whole community and society we develop appropriate ethical and human rights frameworks that assist the bereavement and grief journey whilst being sensitive to the realities of technology that is here to stay.

In this coming National Grief Awareness Week, we are already faced with the challenges of World Futures Day and of a future of grief and loss unlike anything we could have imagined a decade ago.

Synthetic resurrection offers profound opportunities for grieving and psychological support, yet its ethical, human rights, and moral implications demand thoughtful consideration, regulation and ultimately respect for the sacredness of the human experience.

Donald Macaskill

Photo by Maxim Tolchinskiy on Unsplash

Stir Up Sunday: mixing together the future of social care in Scotland.

Well winter has well and truly arrived in the past week. Chatting to care providers in parts of Scotland they have been reflecting to me the struggles of staff getting through snow and ice to work in local care homes or to deliver care and support in the homes of their fellow citizens. Every year I am reminded of the astonishing professional dedication and no little sacrifice of those who in all weathers epitomise the essence of caring compassion and who get through to their place of work despite all the seasons throw at them.

As the first frosts of November glisten on the grass, there is also a sense of our communities moving into the quiet, reflective rhythm of winter as we hunker on down from cold and ice and today as I sit and write this also as we batten down the hatches from the gales and stormy blasts which seem to take up residence at this time of year.

All this meteorological change is resonant of years gone by and is uppermost in my mind as I reflect that tomorrow is Stir Up Sunday, the day traditionally set aside for preparing the Christmas pudding. The tradition dates back to Victorian times when the family would gather five weeks before Christmas to stir the Christmas pudding and, on a Sunday, church congregations uttered the prayer ‘Stir up, we beseech thee, O Lord, the wills of thy faithful people; that they, plenteously bringing forth the fruit of good works…’

Maybe not so much now but in the past families would gather, sleeves rolled up, each person taking their turn to stir the mix, add a wish, and fold in the ingredients that will mature into something rich and sustaining for the festive season. Nowadays I suspect with the pressure of time we simply have to get the job done or there will be no pudding or cake on the main day.

But if you allow me this week, I want to use Stir Up Sunday as a metaphor to share some reflections on social care in Scotland – a sector and community in urgent need of collective action, vision, and hope. Much like a pudding, the care system relies on a delicate balance of ingredients, each essential, each contributing to the whole. But as frost signals the arrival of winter, the cracks in the system remind us that some key elements are missing, and time is running out to prepare for the challenges ahead.

So, what are the ingredients we must urgently focus on to ensure the resilience and future of social care in Scotland?

Workforce: the flour that holds it all together.

No pudding rises without flour, and no care system thrives without its workforce. Across Scotland, dedicated care staff are the backbone of our communities, and evidence that dedication as I said, in all weathers and conditions. Yet they are overworked, underpaid, and often undervalued. This winter, we are faced with the bizarre situation that we risk losing some highly skilled individuals because we are not recognising and rewarding them sufficiently. How can we with any sense of achievement declare that paying the Living Wage is the pinnacle of our ambition? We should and could value social care and its workforce by paying so much more, and that inevitably means that as most social care is bought by the public purse that the Scottish Budget needs to recognise this with adequate funding for local authorities.

Scottish Care is soon to publish a statement on the Scottish Budget which will be presented to the Scottish Parliament on the 4th December and I hope at the heart of that Budget will not just be an agreement to fund the Living Wage but to seek to go much further and truly embed Fair Work commitments.

We also need the UK Government to urgently address the failing immigration system which is preventing people from being attracted to work in social care in Scotland. It appears to me that the current Labour administration at Westminster is just repeating and carrying on the failures of their Conservative predecessors – just doing it more quietly and subtly and all to the demerit of Scotland in particular.

We must stir with urgency to address fair pay, improved conditions, and recognition for the critical role care workers play.

We need more than words of gratitude. We need investment that reflects the true value of care, creating a sector where workers are supported, respected, and empowered. Without this fundamental ingredient, the structure collapses, and the system crumbles.

A sustainable sector: the sweetness of inclusion

The dried fruit in our pudding brings sweetness and depth, much like a human rights-based approach brings dignity and fairness to social care. As we work towards embedding the principles of Scotland’s National Care Service, we must remember that all parts of the sector need to have a voice at the table around which decisions will be made about its future.

The recent debates around the National Care Service have been fractious and territorial and one thing I am clear on is that reform is urgently required and that cannot be the continuation of a status quo where control and power are vested in the interests of local government. There needs to be a power-shift towards those who use and work and deliver care and support and not those who contract and commission, and control in their own vested interest.

There needs even more immediately to be a recognition that the charities and private organisations that deliver the majority of social care in Scotland, must be heard when we say that we are simply not sustainable. Urgent attention to the National Insurance issue both in terms of Westminster mitigations but also in terms of the Scottish Budget is an imperative. The media has rightly picked up our concerns about the care home and hospice sector, but it is even more fundamental that we address the fact that without intervention large parts of our homecare sector will simply collapse.

If a care home dedicates around 75-80% of its running costs to staffing that figure is closer to 90-95% for most homecare organisations. If you are as they are then faced with a 30% increase in staffing costs because of the UK Labour Government Budget including NI then the sums simply don’t compute and there is only one answer and its closure. If care at home organisations close in large numbers in Scotland, people who require support in their own homes will have to be admitted to hospital and those in hospital will not be able to return home. The scenario is nightmarish in proportion.

Integration and collaboration: stirring together for strength.

A pudding’s ingredients only become cohesive when stirred together with care and intention. Similarly, social care cannot operate in isolation. The urgent need for true integration between health and social care must be prioritised – not as an afterthought but as a foundational principle. We are light years away from such integrated, cross sectoral working and it dismays me that work in this area is the first to be cut when budgets are stretched.

Stirring collaboration means breaking down silos, aligning policies, and ensuring that care is seamless across every stage of life. From hospital discharge to home care, the journey should feel like a single, supported path. Winter reveals the weaknesses of disjointed systems; we must mix and work together for strength. If we are not all working together, we are working apart.

Community and solidarity: the binding spirit.

Finally, no pudding is complete without the touch of brandy, whisky or spirit to bind it all together. In social care, that spirit is community – our shared responsibility to care for one another. This is not about maintaining people as they are but working to enable them to live their life to the fullest in care home and own home.  As the frost deepens, the cost-of-living crisis bites harder, as people really begin to experience the devastating and potentially deadly effects of the withdrawal of the Winter Fuel Allowance as a universal benefit in Scotland, and vulnerable individuals face greater challenges, the power of community becomes even more vital.

Social care is not just about services; it’s about people, relationships, and connection. We must weave solidarity into every decision, ensuring that no one is left behind, whether they are a unpaid family carer, a supported person, or a family member navigating the complexities of the system.

As Stir Up Sunday approaches, let us each take a turn to stir the mix for social care in Scotland. The ingredients are before us: workforce investment, a sustainable and funded system, integration and whole system working, and community. But it will take collective effort, political will, and a shared vision to create something that truly nourishes and sustains us through the challenges ahead.

The frost may be appearing, but winter is not a time to despair. It is a time to prepare, to strengthen, and to stir hope into our efforts. Together, we can ensure that social care in Scotland rises to meet the needs of its people – rich, robust, and full of promise.

I leave you with some of the words of the Scottish poet Gerry Cambridge who captures the interplay between winter’s harshness and the promise of renewal in his poem “Processional at the Winter Solstice.” The poem portrays the desolate end of the year, with imagery of darkness and frost symbolising death and stillness. However, it also hints at the return of light and the rebirth of the sun, reflecting a sense of hope and the cyclical nature of seasons.

Now, let us roll up our sleeves. The pudding won’t stir itself.

Processional at the Winter Solstice.

He has gone down into darkness at the wrecked end of the year
And is lying, gaberlunzie, in the needled nest of frost.
The arctic thrushes call for him although he cannot hear,

And the worm too understands him in the chilled grip of its dark,
And the ptarmigan in blizzards where no thought is worth a crumb,
And treecreepers in shivering puffs in Wellingtonias’ bark.

Shop windows glint in city lights like ice and sky, but still
No tinsel gifts can touch him, freed to silence like a stone’s;
His face is white as paper’s white in miles-high midnight chill.

He lies as plain as frost-dust where those starving thrushes call,
And his lime and ray-struck armoury could hardly be less small
On the anvil of beginnings in the sun’s gate on the wall.

Gerry Cambridge

from Notes for Lighting a Fire (Glenrothes: HappenStance, 2012)

Processional at the Winter Solstice by Gerry Cambridge – Scottish Poetry Library

Photo by Bruna Branco on Unsplash

Donald Macaskill

Visible, Viable, Valued and Visionary: the imperative of social care in Scotland.

There is never a dull moment in the world of social care in Scotland. In the past week we have ongoing debate about the National Care Service culminating in the decision of the Scottish Government to pause the Bill Stage 2 process and to return to the matter in 2025. This decision has been met by some who think it means the end of the Bill and by others who wish it did, and yet others who are both confused and disappointed.

I mention all this because yesterday was the Scottish Care Care Home conference. This annual event brought together care home providers, managers and workers, together with other stakeholders and partners from across the country. It was also an opportunity to hear from some of our political leaders, including the Cabinet Secretary Neil Gray, about their position on a whole range of issues, not least the National Care Service.

However, for most of those there the number one issue was not the future shape of social care (however critical that is) but whether they would be around to see it. Yesterday Scottish Care published a summary of some of our latest consultation with our members about the implications of the Westminster Labour Government’s intention to increase the National Insurance threshold and rates. Our research indicated that of those who responded to a survey in the past week, nearly half (48%) of care home and homecare organisations noted the very real possibility of service closure as a result of this increase.

In our media statement I said that:

“These additional pressures on social care providers created by the UK Budget announcement are unworkable in the current climate and a solution, either through exemption or funding, must be found in order for the social care sector to be sustained. Scottish Care is incredibly alarmed at the figures presented in our survey, not least around service closures, with many providers indicating that this may very well be the straw that breaks the camel’s back. It is no exaggeration to say we will lose swathes of social care provision in Scotland unless urgent, practical and resource-based solutions are progressed for the sector. If not, the impact on individuals, communities and public services will be catastrophic.”

It was in the context of such a troubling background that together with my colleague, Scottish Care’s Deputy CEO, Karen Hedge we ended the conference by focussing on the Four V’s which lie at the heart of Scottish Care’s recent Strategy document. What follows is a summary of what we shared:

Visible

Social Care that works for Scotland ​

In order to move forward you need to know who you are …

Scottish Care is essentially a membership organisation – we represent the greatest diversity and range of providers of social care in Scotland indeed probably in Europe – from care home to homecare, housing support to respite support. From small single operators to large corporate organisations; from rural to remote and urban to town.

We are an organisation driven by social values. We aim to ensure that social care in Scotland is not only sustainable but also exemplary, reflecting the high standards and compassionate care that our communities deserve.

The problem is that a lot of people do not know what social care is – we have got to the stage of it being seen as the release valve for the NHS on the one hand (not least around delayed discharge and avoidable admission) or as a set of services which is about maintenance and keeping people safe – it is so much more.

It is about flourishing and thriving – about citizenship and contribution, it is about challenging the discrimination of age and the limitation of conditions such as dementia.

social care is rather:

‘The enabling of those who require support or care to achieve their full citizenship as independent and autonomous individuals. It involves the fostering of contribution, the achievement of potential, the nurturing of belonging to enable the individual person to flourish.’

It is time for social care and care homes to be seen for what they are  – contributors and not costs, enablers of life and not limiters of freedom, places of thriving lives and not ante-rooms of the end days.

As a society we need to shout loudly about the brilliance of compassion and the dedication of our care homes staff and managers in the delivery of a society which values all.

We are here to build the possibility of a society that truly values care, and walks the talk of the rhetoric of priority.

Viable

Scottish Care also published yesterday our report on Ethical Commissioning which states clearly that we need to radically reconceive the way in which we commission and contract care services into a model which embeds human rights at its heart. It centres its focus on rights, respect and redistribution. People deserve high quality social care and support focussed upon human rights

Social Care is experiencing an increase in demand at the same time as a decrease in resource and it remains a net contributor to the economy. It is time to think differently and sustainably.

We need to start thinking about the potential for social care to be an economic and societal driver rather than using the language and mindset of cost and drain.  We need to focus on human rights – work collaboratively across the health and social care system in the preventative space and beyond, to make sure that people can live with autonomy for longer.

This all requires that we approach each other with mutual regard and transparency, creating trust in a system built upon robust cost of care modelling and funding this by reducing duplication and bureaucracy, bridging the implementation gap through a redistribution of funds.

We also need to support our amazing social care workforce through the implementation of Fair Work principles and sectoral bargaining, but we need to do this in a planned way with appropriate procurement measures. The implication and implementation of the Employee Rights Bill and the UK Budget have to be recognised both at Scottish and UK level. Almost half of our members responded to a survey on the budget saying that they may not be viable with the changes to National Insurance contributions alone, if these are not carried through into funding.

What we have stated before of net-zero is true still of commissioning:

“Many of the concerns circle back to the long-standing issue of insufficient funding available in the sector and the undervaluing of social care. Changing mindsets to focus on sustainability in the commissioning and procurement processes would be beneficial to implementing long-term change”

We no longer have a National Care Home Contract which is fit for purpose ands indeed the financial gap between true cost and public funding is between £4-500. Such a contract limits and the moral step away from funding the true cost of care cannot be excused.

Valued

At some point, everyone in Scotland is likely to experience care and support either directly themselves or indirectly for their loved ones.

It’s time to celebrate social care, a sector that makes a difference every day for the people of Scotland, whether you access, work in or provide it.

Despite the shelved human rights bill, we put human rights at the front and centre of our work, we know that value lies in people, not process but we need to do more to address discrimination in our society. Discrimination in our legislation which excludes older people living in care homes from access to self-directed support,  discrimination which has become so pervasive against older people we do not even notice it is there.

And societal discrimination in the form of microaggressions which for instance maintain that it’s women’s work, worthy only of a living wage, rather than a professional wage for professionally qualified and regulated individuals. That it’s women’s work, thinking which a recent study as part of IMPACT showed that deters men from considering a role in social care because they are too worried what their family might say thus perpetuating the myth.

Everyone in this room knows the worth of social care and support through the significant contribution it makes to society and our economy. Through the difference that it makes to our lives and in the measurement of humanity.

It’s time we broke through those barriers and set things right. It’s time for a care revolution to bring us social care that works for Scotland.

Visionary

All of us recognise that the seeds of change are rooted in the present moment, that the future is not an alien country but one we must all be citizens of. We can never stand still, we must always be re-imagining our today in a new direction.

So that is why Scottish Care is continually committed to asking the hard questions – what will a care home need to look like? How do we make services and support truly person-led with the citizen in charge and our services and staff there to enable them to direct their living?

That’s why technology and digital solutions and the emerging role of Ai are not a fad or a distraction but central and critical for the delivery of quality and rights-based care and support.

That’s why we will use design approaches to work with a range of stakeholders so that the people in this room and those who use services and support in care homes are at the forefront of coming up with a vision of tomorrow.

Whether through our work on data or research and policy we will continue to listen to the best the world of aged care has to offer in all corners of our globe, bring insights into this place and help to re-shape plans and possibilities into realities and revolution.

An American actor once said:

“Tomorrow is the most important thing in life. Comes into us at midnight very clean. It’s perfect when it arrives and puts itself in our hands.”

We all of us have the potential to create a vision of the possible for social care in Scotland, we can work together from all political standpoints to put aside short term self-interest and partisan positioning and identify what we can agree on and re-shape that tomorrow.

Tomorrow is fresh and full of possibility, if we dare to allow all that stops us from working together to be set aside.

Donald Macaskill

Karen Hedge

Photo from Joshua Sortino from Unsplash

Flexibility and innovation: the future of remote and rural social care in Scotland: a thought piece.

In a previous blog I mentioned that I had had the privilege of visiting Australia where I had the opportunity to meet with and discuss the challenges of delivering aged care in that vast country. Part of these conversations related to how providers navigated the challenges of remote and rural care delivery.

In many ways the challenges faced by care providers in Scotland are not dissimilar – issues of workforce recruitment and retention, transport, cost of living, depopulation and lack of whole system thinking. I’ve previously written about what some of this means for the Highlands of Scotland and argued that at the very least we need to develop specific funding streams to address these issues, but in truth it is more than additional resource which is needed. The criticality of these issues is self-evident with growing numbers of care homes closing and public intervention required to avoid further social care withdrawal.

In this piece I want to suggest that there are some practical solutions which might aid us in the short term but also that if we are serious in addressing the challenges of depopulation then we need radical new (and old) approaches to our delivery of social care and health services. What follows is an attempt to describe some aspects of this in brief and to initiate a wider conversation.

Going back to move forward.

I have long been interested in the work of Eileen Younghusband. Eileen was a pioneering British social worker, educator, and researcher whose work significantly shaped social care practices, especially through her emphasis on community-based social work and a holistic, person-centred approach to care.

The Younghusband Report (1959) was a landmark document that analysed social services provision in the UK and made recommendations for integrating social work with health and community support. Her ideas laid a foundation for modern social care practices, particularly in settings where tailored, community-oriented approaches were essential.

In many senses she was the forerunner of our modern attempts at the integration of health and social care but critically her starting point was the local community and not national systems, and her focus was on the person living in community and primary care/social care and not on secondary and acute clinical care.

Younghusband’s work was grounded in the belief that social workers should operate within communities rather than distant institutions. She promoted integrated care models that involved close collaboration between social services, healthcare, and community organisations, enabling social workers to respond more effectively to local needs and provide tailored support. It all sounds remarkably prescient but sadly much of her report and recommendations remained on the shelf and unimplemented.

Her approach did however chime with many of those behind the development of the Social Work Scotland Act of 1968 not least in its emphasis upon a holistic approach to wellbeing rooted in universalist and communitarian principles.

Younghusband argued for a holistic model that viewed individuals within the context of their families, communities, and broader social environments. This approach encouraged social workers to address not just immediate social needs but also the underlying factors impacting an individual’s well-being, such as housing, employment, mental health, and social relationships.

Critically for our context today she also focussed on the importance of preventive measures in social care, including early intervention, education, and ongoing support to help individuals maintain independence and prevent crises. She also argued for the need for flexibility around the scope of roles and activities within professional groups, being critical of role protectionism and an unwillingness to work beyond scope and registration. I would suggest her work has much to teach us today around rural and remote health and care delivery.

Alongside this philosophical UK grounding of a communitarian primary and social care model it is worth reflecting on the Australian context which I came across.

Australia is actively working to improve access to and the quality of aged care services, particularly for those in rural and remote areas and from diverse cultural backgrounds. It is doing so by utilising several distinctive programmes including:

The Multi-Purpose Services (MPS) Program which has a primary aim to deliver integrated health and aged care services in rural and remote communities that cannot support standalone facilities. As a result, older people can remain in their communities, closer to family and friends, while accessing necessary care. The program encompasses a range of services including residential and home care, acute and subacute care, emergency, allied health, and primary health services. It is all funded jointly by the Australian Government and state and territory governments, with funding shared between them.

The National Aboriginal and Torres Strait Islander Flexible Aged Care Program aims to fund culturally appropriate aged care services for older Aboriginal and Torres Strait Islander peoples, primarily in rural and remote areas. It does so by recognising the importance of cultural safety in aged care, ensuring services respect and support unique cultural identities and needs. A key element of its success is that it emphasises worker registration and regulatory flexibility, cultural appropriateness, and accessibility, thus empowering communities to tailor services to their needs rather than expect people to fit into pre-existent structures and models.

Lastly the General Practice in Aged Care Incentive seeks to encourage continuous and quality primary care for older people residing in aged care homes by their regular GP and practice. Financial incentives are provided to GPs and practices registered with Incentive for providing regular visits and care planning. This has already resulted in improved continuity of care and a reduction in avoidable hospitalisations.

There are certain key themes in all these programmes including a stress on ensuring equitable access to quality aged care services for all Australians, regardless of location or cultural background. They seek to promote models that integrate various health and aged care services to provide holistic care and improve outcomes. And being very aware of issues of fiscal and demographic/geographic sustainability they directly address the challenges related to funding, workforce, and infrastructure to ensure the long-term viability of aged care services.

What does all this mean?

In rural and remote areas of Scotland, where communities are dispersed, resources are limited, and access to healthcare and social services can be challenging, Younghusband’s approach combined with some Australian insight offers, I would suggest, a potentially valuable framework for effective social care and health delivery. I would suggest four key aspects.

There needs to be a greater flexibility in the registration of services. The introduction of one registration requirement for any and all social care services would enable providers to exercise greater flex in the delivery of services. So, a residential care provider could also work in the community delivering care at home and day care/community supports. Whilst this is technically possible at the moment the process of dual registration and all that comes with it is cumbersome and stymies creativity and investment. Australia is rich in examples of the benefits of such a flexible approach to registration.

Clearly one of the major challenges is attracting and retaining a workforce. Again, Australia evidences what can be achieved when it is the person who is registered to work across multiple settings rather than limited in their scope and practice to one service or model of care and support. This serves to attract new workers because there is a clear appeal in working across environments, in the variety this offers a practitioner and in the positive ability of a worker supporting an individual across settings, transitioning from community through respite provision into permanent residential or advanced care.

Part of Younghusband’s work was her eagerness that such flexible approaches to professional role would become commonplace in integrated environments. We are not seeing this in Scotland, and I think this offers a direct challenge but also opportunity to nursing and social care colleagues. Many of us still remember the early models of district or community nursing which had a critical component of ‘social care’ and preventative approaches within them. Even if they were not always explicit, they existed in practice. These have largely been lost, but I would contend that in our rural and remote communities there is a real opportunity to re-envisage the role of community nursing in partnership with social care practitioners. Some lessons might be learnt from what is increasingly happening in our care homes in the relationship between senior carers and nursing staff. Faced with demographic challenges and a lack of available staff we need to be creative and positive about re-designing roles to fit population need rather than limiting the demand to fit traditional roles.

Thirdly, Australia also evidences a much more flexible approach to regulatory oversight and its role in service improvement and delivery. In Scotland today the role of the regulator is detached from service delivery and still dominated by a policing and compliance ethos rather than a collaborative, mutual partnership where critical comment and advice works alongside service delivery through service improvement. We are still at the stage of a naïve and sometimes limiting application of standards to practice rather than a consensual collaborative approach which enables services and supports to uniquely express local context and ability. To be blunt accepting that you cannot deliver a service in a remote community with limited staff in exactly the same way that might be possible in a populous urban setting does not mean that you lower standards, but it does require a much more dynamic, partnership oriented and realistic approach to regulation and oversight. Without such flexibility in oversight and regulation any innovation is stymied and limited.

Lastly and it is perhaps stating the obvious the reason Younghusband’s approaches did not see the light of day was that their cost was considered too great. The reason the approaches now being evidenced in Australia are clearly bringing benefit is that there has been a not insignificant amount of fiscal and resource investment. In other words, none of the above will be achievable without the money following the vision.

Scotland’s remote and rural communities are crying out for a spirit of innovative adventure where new models replace tired and outdated, defensive and protectionist approaches. A thriving and vibrant social care sector can be a major contributor to addressing the de-population of our communities – if we decide to make the effort and engage in the adventure.

Donald Macaskill

Photo by Konrad Hofmann on Unsplash

The keening of hurt : why raw emotion needs to have a place in grieving.

A week ago yesterday I was privileged to be delivering a session at the annual conference of the Australian Community and Care Providers Association in Adelaide. My theme was whether or not aged care and support could learn some lessons from the historical and traditional approaches to care of the dying and the support of the bereaved which occurred in north west Scotland and the Hebrides.

In describing what I argued to be some of the distinctive elements of the Hebridean approach I mentioned the practice of keening, and it has made me in the days since to have cause to reflect on just why it remains important today for those of us who work in the care and support of the dying and of the bereaved to give space and time to raw emotion and the real depths of grief. Let me expand on that a bit at the start of ‘To Absent Friends Week.’

‘Keening’ is perhaps one of the most distinctive Gaelic traditions around death and grief and was for centuries the norm in the islands of the northwest of Scotland and in parts of Ireland. Keening (caoineadh) was a form of ritualised mourning which involved wailing, crying, and singing to express grief. Historically, keening was performed primarily by women (often professional keeners) who would gather at funerals or wakes, helping the community express collective sorrow and marking the transition of the deceased. It involved a rhythmic and often emotional wailing or chanting, expressing sorrow for the dead.

This practice, while virtually almost gone in Scotland and a lot less common today in Ireland, was once central to the grieving process, helping both the mourners and the community release their emotions. In many ways it has similarities with traditional practices across the world. So, for instance Ghanaian Ga funerals involve elaborate, often loud ceremonies with song and dance that allow people to express sorrow publicly. In India in some regions, particularly in Rajasthan, women known as Rudaalis are hired to express grief openly, allowing families to engage with death publicly and vocally. And perhaps linked to Irish-Scoto heritage, in New Orleans, jazz funerals feature a blend of sorrow and joy, starting with a slow dirge and progressing to more upbeat music, allowing mourners to transition through grief and celebration.

Because of the stress upon helping the soul to journey onward which existed in the Celtic tradition, the Gaelic keening was not only an expression of grief but also seen as a way to guide the soul of the deceased to the afterlife. But centrally it helped the community come to terms with the loss, providing an outlet for collective sorrow.

The American writer Amanda Held Opelt argues that such raw expressions still have validity today. We all need sometimes in our grief the permission to fall apart, to lose decorum; to name the hurt deep inside and keening enabled Hebridean and Irish people to do that. It provided the ability to link yourself to the sadness of the past and of the moment and of the morrow.

Death is truly awful, and we need to create permission to fall apart. When we fail to allow space for the deep emotions of loss within the rituals of our grieving and at the heart of our bereavement then we store up hurt for days and years to come.  My own personal experience is that in our desire to distance ourselves from the painful reality and raw truthfulness of death, that as a society we have created an almost clinical detachment from grief and loss, not least around the immediate death, and that such has ill served our ability to express our deep emotions.

Expressing emotions like anger and lament in early grief (a process which the keeners facilitated so well) offers psychological benefits that can aid in the healing process. Studies highlight several key aspects of how such expression impacts grief recovery:

Allowing yourself to express anger helps individuals process complex feelings and begin to confront the reality of loss. This expression can also prevent emotions from becoming “bottled up,” which can lead to prolonged and complicated grief. By outwardly expressing emotions, individuals often find a path toward acceptance, which is crucial for moving forward (Verywell Mind, 2024).

Research from the American Psychological Association (APA) suggests that expressing grief-associated anger can alleviate physical symptoms linked to stress, such as increased heart rate and muscle tension. Suppressed grief can lead to long-term health issues, while allowing these feelings to surface can reduce stress hormones and promote physical well-being (APA, 2024). I don’t think it was accidental that the great thinker around bereavement Elizabeth Kubler-Ross argued that anger was a critical early stage response to loss.

Displaying emotions, including anger, allows others to understand the mourner’s needs better, fostering an environment where social support can be effectively provided. Such support is crucial for mourning, as studies indicate that those with strong support systems generally adapt to grief more healthily. This social validation helps mourners feel less isolated and more connected to others in their grief (Psychology Today, 2024).

Overall, openly expressing anger and sorrow can reduce the risks of complicated grief and enhance emotional regulation, which is critical for long-term mental health. This approach can encourage mourners to feel acknowledged and supported, offering a healthier path through bereavement.

Keening and other similar traditions from our historical approach to dealing with grief have, I believe,  much to teach us today and can offer powerful ways to honour grief, making mourning a communal rather than isolated experience, and allowing those left behind to feel supported and understood.

Fear not the tremble of hands

Grief, raw as iron struck red in the forge,

is not softened by silence, nor stilled by polite nods,

it erupts – fire in the heart’s quiet chamber –

burning with questions, cutting through fog.

For grief is more than sorrow, a deeper rage

at a world turned cold, that dare not yield

to the polite comforts, the softened sighs,

but roars at absence, demanding to feel.

Anger sharpens our sorrow, gives it weight,

a fierce testament to love’s deep scar,

a howl that shatters the pretence of calm,

declaring loss with a voice unbarred.

Let us not fear the tremble of hands,

the raw, unbidden tears that break

through our masks, these brittle walls,

for anger too is a holy ache.

It is a memory, an indignant vow

that love was real, that we will not erase

the fury of loss, the burn of despair,

nor will we hide what should be faced.

So mourn with untempered, furious grace,

let the heart unclench its tightly held song,

for in rage we honour what cannot be spoken—

and find, at last, where we belong.

Donald Macaskill

Photo by K. Mitch Hodge on Unsplash

Taking Party Politics out of health and social care reform: lessons from Australia.

This past week I have had the privilege of being a guest of the Australian Aged Care Providers Association. As well as being able to take part in speaking and workshops at their National Conference with over 2400 delegates attending, I’ve also been honoured to spend time visiting care and support facilities and projects in the area around Adelaide.

It’s been very insightful, and I want in a future blog to share some of what I discovered about how Australia is tackling issues facing aged care in remote and rural communities and whether there might be things we could adopt and adapt here in Scotland.

But without a doubt the most dominant topic of conversation during my seven days away has been what has recently occurred at the political level in Australia around health and social care.

In Scotland, the conversation around health and social care reform is urgent and vital, and there is no shortage of diverse opinions but it is often overshadowed by political squabbling as evident even in the last few days. Whether it is discussions about the National Care Service about which the Green Party will take a decision today or proposals to address workforce challenges including discrete approaches to immigration, these debates quickly devolve into party-political contests.

Along with many others I have stated before and am more than ever convinced having spent time in Australia that meaningful, sustainable reform of our health and social care system requires collaboration across the political spectrum. Such comment has been dismissed as utopian and folks have said to me it’ll never happen. But it can and I’m suggesting it should.

The recent experience in Australia – both with its Aged Care Act of 2023 and the ongoing 2024 reform, I believe, offers us an instructive example of how we can depoliticise health and social care reform and delivery and focus on the needs of people rather than the priorities of political parties.

The Australian Approach: A model for consensus

Australia’s aged care sector had long been in crisis, but it took the Royal Commission into Aged Care Quality and Safety to bring about comprehensive reform. The Commission’s recommendations resulted in the Aged Care Act 2023, which was a transformative piece of legislation. Central to its success was the bipartisan approach that Australian politicians adopted. After the release of the Royal Commission’s findings, the reforms were not treated as political capital for upcoming elections, but as a national imperative requiring cooperation.

In fact, the introduction of the new Aged Care Bill in 2024 was hailed as a rare instance of bipartisan commitment to long-term social care reform. Both the government and opposition worked together to craft a legislative framework that focused on the rights and dignity of older people. The Bill was designed to address systemic issues in funding, workforce support, and governance, with the shared understanding that reform was needed urgently. It is an ongoing process, and it is not quite over the line and the impressive Aged Care Minister addressed the conference and committed to robust partnership working with the care sector and those who use care supports. But there have already been massive strides including a huge eye-watering commitment to the workforce to increase terms and conditions, which has meant billions of additional resources committed to care and support.

In Scotland, we are at a similar crossroads. The need for reform is acute, but discussions around the National Care Service (NCS) have been mired in party politics and at present seem to be struggling and bogged down.

While every party and interest group including COSLA and the trade unions as well social care providers offers its version of how the care system should be funded and governed, the fundamental issues remain unresolved, and the people who rely on these services are left waiting. In the meantime, care workers continue to face burnout, residents in care homes lack the adequate resourcing of their care they deserve, and families remain uncertain about the future of social care provision in the community as homecare organisations struggle to continue.

Australia’s example shows us that progress is possible when political parties stop treating social care reform as an election battleground and instead commit to long-term solutions. There is a real need to bring all stakeholders – including politicians, care providers, workforce representatives, and, most importantly, the people who use these services – into the conversation.

Depoliticising reform: what can we learn?

  1. Independent Commissions:

One of the reasons Australia’s reforms succeeded was the establishment of the Royal Commission, which provided independent, apolitical analysis of the problems facing the aged care sector.

Some might suggest that the Feeley Report was our Commission and indeed it garnered a lot of consensus when it was published. I don’t really think we need a Royal Commission as is being proposed in England – what we lack is political agreement on how you embed the proposals and vision of Feeley because I simply don’t think that is on the table at the moment. We have lost the collective vision at the hands of party political priority.

  1. Bipartisanship:

Australia’s aged care reform was achieved through bipartisan negotiation. In Scotland, we must find ways to depoliticise care discussions by focusing on shared goals rather than divergent ideologies. Political parties in Holyrood must come together to agree on fundamental principles for health and social care reform. This may mean embracing ideas from across the political spectrum if they benefit the people who rely on these services and those who work in and deliver them. Those who work in and use care and support deserve real political leadership and a failure to come together and gain bi-partisan agreement will be a betrayal of the social care community and will not be soon forgotten. This is too important an issue to be kicked into the long grass, ignored or indeed fought over in a Holyrood playground.

  1. Stakeholder-Led Design:

The success of Australia’s Aged Care Act also rested on the involvement of a wide range of stakeholders. In Scotland, it is essential that any future reform is designed with the input of the people most affected – those receiving care, their families, and the workforce and employers. We have palpably failed to achieve this thus far because despite the warm rhetoric of embedding design approaches stakeholder engagement has been partial and non-inclusive. We cannot afford to continue to have reform designed by civil servants and politicians.

The inclusive Australian approach has ensured that the reforms are not only effective but also respected by those on the frontlines of care delivery.

  1. Long-Term Vision:

One of the issues plaguing Scottish social care reform is the tendency for short-term fixes based on political cycles. Australia’s reforms, while still unfolding, have aimed for a long-term vision of sustainability. By creating a framework that stretches beyond electoral timelines, Australia has demonstrated that meaningful change takes time but is worth the investment. The fruit is already evident even within months of change  – workforce retention has improved, and recruitment has become easier because people can see that they are respected and valued maybe for the first time as a key economic sector in Australia. Scotland’s care system, like Australia’s, must be built for the long haul, with consistent funding, workforce support, and regulation designed to last for decades, not just until the next election.

Rebuilding Trust in the System

Australia’s reform process has also been about rebuilding trust in the system. The Aged Care Act of 2023 included provisions for better oversight, accountability, and transparency – elements that were critical in restoring public confidence. Scotland faces a similar challenge. Years of underfunding, mixed messages, and inconsistent policies have eroded trust in social care provision. We need clear, transparent policies that offer stability to those who rely on these services, those who work in them and those who provide them.

In conclusion, as we look to the future of health and social care in Scotland, we must be willing to take party politics out of the equation. Reforming our social care system to say nothing of the NHS, is not about winning elections; it is about ensuring that every person, whether receiving care and support or providing it, is treated with the dignity, respect, and support they deserve. Australia’s experience shows us that bipartisan, human-centred reform is not just possible – it is necessary. Scotland must follow suit and commit to depoliticised, evidence-based solutions that put people at the heart of our care system.

What do our politicians say? Are they brave enough to let go the levers of power, both local and national, and to allow a wider conversation and control? Or will we continue to squabble, disagree and dissent?

Donald Macaskill

Photo by Kay on Unsplash

Moving the Needle – a human rights-based -approach to Infection Prevention and Control in Care Homes.

Today is the last day of International Infection Prevention and Control Week. It’s a week which has been centred on its theme which this year is “Moving the Needle on Infection Prevention.” including a focus yesterday (Friday) on the care continuum and long term care settings.

I have thought about infection prevention and control a great deal in the last few years not least because of my conviction that as a health and care community we got it so badly wrong during the Covid pandemic. In workshop and conference sessions and in evidence submissions I have argued that we need to adopt a much more human rights-based approach in the face of any future pandemic or major event.

The following blog is an attempt to start a conversation on what I mean by a more human rights based approach to IPC, because I honestly do not think that the current Antimicrobial Resistance & Healthcare Associated Infection (ARHAI) Scotland guidance for social care settings is acceptable or human rights based and because I am fearful that another future event will again be dominated by a public health approach devoid of a robust human rights focus.

At the very least the tone and language of associated documentation and practice – including the material produced for the IPC Week – has to start to reflect the reality that a care home is someone’s home and its residents are autonomous individuals with human rights and not occupiers of a space and place of clinical practice. I would go even further and suggest that much of existing IPC guidance for hospital settings is devoid of a human rights perspective.

The Covid-19 pandemic has forced us to re-examine many aspects of our society, and nowhere has this introspection been more needed than in the care of older persons both in our community and in our residential care settings. Care homes became, during the pandemic, epicentres of vulnerability. Lives were lost, families were shattered, and the reverberations continue to be felt. Yet, there is now an opportunity for radical transformation – a move towards a human rights-based approach to infection prevention and control (IPC). This approach prioritises the dignity, autonomy, and the well-being of individuals while ensuring safety and care standards that protect the most vulnerable.

It is impossible to discuss the need for change without reflecting on the trauma that Covid-19 brought to care homes. The pandemic introduced extraordinary measures in care homes: strict lockdowns, isolation, and visitation bans, all in the name of infection control. While these interventions were aimed at protecting physical health, they often resulted in deep social, emotional, and psychological harm to residents, families and staff.

Research has shown that, particularly in the early phases, decisions were made rapidly, and often with a singular focus on controlling infection at the expense of residents’ broader human rights. Lockdowns, blanket visiting bans, and restrictive practices – while intended to protect – often resulted in loneliness, isolation, and psychological distress for residents. A Lancet study noted significant increases in depression, anxiety, and a decline in cognitive health during prolonged isolation in care homes (Hanna et al., 2021).

For many, particularly those living with dementia, the loss of daily contact with loved ones, the curtailment of social activities, and even changes in routine caused irreversible deterioration. Studies like those by the Journal of the American Medical Directors Association (2022) indicate a notable decline in cognitive function and mental well-being in residents subjected to prolonged isolation.

This experience starkly highlighted that safety cannot be achieved at the expense of dignity. The desire to prevent infection must be balanced with respect for autonomy and a person’s right to live a life that is meaningful, connected, and dignified.

Post-Covid, we are faced with an urgent question: How can we protect residents from future infectious threats without compromising their fundamental human rights?

A Human Rights-Based Approach: The Framework

A human rights-based approach (HRBA) to infection prevention and control focuses not only on the technical aspects of controlling infection but also on the values and principles of human dignity, autonomy and personal choice and control. Such an approach involves placing the individual, their dignity, and their autonomy at the centre of care. This is not a simple balancing act but rather a framework that embeds human rights principles into every aspect of decision-making, care delivery, and policy formulation. The technical and clinical dominance of IPC measures however valid should never be at the expense of individual human rights.

  1. Participation and Autonomy

One of the cornerstones of a human rights-based approach is respecting the autonomy of the individual. Throughout the pandemic, many older people in care homes had little or no say in decisions about their lives, often because those decisions were made quickly and with public health as the primary focus. Moving forward, we need to ensure that residents, their families, and care staff are active participants in decisions about infection prevention and control. This includes not only informing residents about risks but also allowing them to make choices that reflect their values and preferences. A person’s right to family life, for example, should not be easily overridden in the name of IPC.

  1. Proportionality

The principle of proportionality requires that any measures taken are the least restrictive necessary to achieve the intended goal. In the post-Covid era, IPC measures must be carefully calibrated to avoid overreach. Blanket bans on visits or social interaction cannot be justified when more nuanced and individualised approaches, such as testing or social distancing, can be employed. Research has underscored the importance of maintaining human contact for well-being, and we must ensure that future measures respect this vital need. The speedy implementation of the full scope of Anne’s Law in Scotland is a case in point.

  1. Dignity and Quality of Life

Infection prevention measures should never undermine the dignity of the residents. For many in care homes, quality of life is just as important – if not more so – than mere survival. Research from The British Medical Journal (2023) highlights the severe psychological impact of extreme restrictions, noting that many residents felt “dehumanized” by the rules that governed their daily lives during the pandemic. Any IPC framework must therefore prioritise preserving a sense of normalcy, allowing individuals to continue engaging in activities that bring them joy, purpose, and connection.

  1. Accountability and transparency

During the pandemic, decisions were often made behind closed doors, with little transparency or input from those most affected. A human rights-based approach requires a commitment to openness and accountability. Care home residents and their families must have access to clear, honest information about the reasons behind any IPC measures and be provided with opportunities to voice concerns, ask questions, and seek redress if they believe their rights are being infringed upon.

Learning from research Post-Covid

In the aftermath of the pandemic, research has provided us with critical insights into how IPC measures can be designed to protect both physical health and human rights. For instance, studies suggest that hybrid approaches to visiting can significantly reduce infection risk while maintaining essential social connections. Additionally, a study published in Age and Ageing (2022) highlights the effectiveness of integrating regular testing and infection control education for both staff, residents and family which can reduce the need for more draconian restrictions.

Crucially, research has also shown that infection control policies developed in partnership with residents, staff, and families not only yield better outcomes but also foster greater trust and compliance. Involving people in these processes reinforces the sense that they are not passive recipients of care but active participants with rights that are respected and upheld.

A path to ethical IPC care

The lessons of Covid-19 demand that we rethink our approach to infection prevention in care homes. It is no longer acceptable to prioritise safety in a way that strips individuals of their humanity. A human rights-based approach offers a framework through which we can safeguard residents’ health while also affirming their dignity, autonomy, and right to a meaningful life.

As we look to the future, we must commit ourselves to an ethic of care and support that is not only responsive to the needs of infection control but also rooted in the rights and dignity of every older person. This is not just a policy shift; it is a moral imperative.

We owe it to our older generation to create a future where care and support in a care home during a pandemic is not about survival alone but about living fully, with personal and individual choice, even in times of crisis. We really do need to ‘move the needle’ and reset the human rights conversation on IPC.

Donald Macaskill

Photo by Kelly Sikkema on Unsplash