A vision for the health and care of all, not least men.

After many requests from not a few the Cabinet Secretary for Health and Social Care, Neil Gray addressed the Scottish Parliament this past week in a speech during which he outlined a vision for health and social care. In his speech he said that:

“I have already outlined to my Cabinet colleagues an overarching vision which will guide our work.

This vision is one with which no one here could argue: a Scotland where people live longer, healthy and fulfilling lives.

This vision is supported by four key areas of work: improving population health, a focus on prevention and early intervention, providing quality services, and maximising access, with all of these underpinned by giving due consideration to the people at the heart of those services.

In the short term we must ensure that our services are delivered in the best way we can within our current arrangements, and in the medium term, we need to begin to transform how we work.

And we must keep our eyes on the horizon, because in the longer term we also need to fundamentally change how we think about the delivery of health and care, driving investment in prevention and early intervention.”

I hardly need to say that those of us who deliver and work in the independent social care sector look forward to being invited to play our part in the shaping of this vision into reality in the short, medium and long term. I very much hope that the stated Expert Reference Group will include those organisations who provide most of the social care delivery because without their expertise then any venture will fail.

Few could disagree with Mr Gray’s vision ‘of a Scotland where people live longer, healthy and fulfilling lives.’ Yet sadly the reality is increasingly one which is quite the opposite and is likely to worsen before it improves.

I was also pleased to hear in the speech the emphasis upon prevention and supporting and caring for people close to their own home. Of this the speech stated:

“This will be underpinned by the principles of accessibility, addressing health inequalities, maximising outcomes, and promoting innovation as well as value for money.”

It was also refreshing to hear of an emphasis on the game-changing nature of technologies – and indeed the social care sector in Scotland is world-leading in the use of such technologies such as wearables, the IOT, Ai and robotics which enable independence and citizen control, albeit that its successes are probably better known outside Scotland than within.

I was reflecting on all this potential for a vision and practical change when I attended a couple of days later the impact and celebratory event of the Leading Digital Transformation in Health and Care for Scotland MSc programme run by the Usher Institute of Edinburgh University in collaboration with NHS Education Scotland and the Scottish Government.

Now into the start of its second year the participants on the programme have been exploring a wide range of topics, ‘from fundamental leadership concerns such as communication and change management, to current critical challenges of the digital age such as systems, interoperability and data sharing.’ It was refreshing to hear some of the 40 plus participants talk openly about how they are tackling real world issues facing those of us in Scotland who access our health and care systems.

It was also inspiring to hear inputs which argued that we need to stop talking about technology as tomorrow’s solution and to grasp the fast-moving pace and reality of innovation which is already making a difference to the health and wellbeing of people – if only we can maximise that potential in Scotland. Sadly I suspect we too often cogitate, ruminate and discuss rather than create, embed and commence.

We have so much we can do better and need to do urgently and in no small way at the heart of our health and social care inequalities in Scotland is the health of men and boys. On Monday (10th June) we start the annual Men’s Health Week which is an event organised by the Men’s Health Forum. Like the Cabinet Secretary’s vision its aim is very much focussed on preventative health and to encourage men to gain the courage to tackle their issues.

We often talk and reflect on health inequalities in Scotland but surely one of the most primary ones is the fact that one man in five dies before the age of 65 and chiefly from preventable conditions.

So in the coming week there is a focus on prostate health. The week is to be called Let’s Talk Prostates (And Everything Else Men’s Health!) As the organisers state:

“Men don’t talk, we’re told. So, for Men’s Health Week 2024 we’re encouraging men to share their stories.

We’re taking our lead from King Charles who, earlier this year, shared that he had a problem with an enlarged prostate. On the day after his announcement, there were 16,410 visits to the relevant National Health Service website page compared with 1,414 visits the previous day. Prostate Cancer UK saw an almost doubling in the number of users of its online risk checker.

This goes to show the difference that honest sharing can make. Most of us won’t have same impact as the King – for a while in the UK media, it was difficult to avoid urologists talking about the prostate and the things that can go wrong with it – but if there is a taboo about men’s talking, well, the best way to beat a taboo is to ignore it.”

I cannot but reflect on how important it is that the three strands of my week just past  combine – a renewed emphasis on preventative health and social care which focusses on where we are; a practical adventurous use of technology to support our wellbeing and a focus on health inequalities, which for the next week at least is upon men and boys.

Men tend to respond well to health programmes that incorporate digital or technological elements, and yet so little of our actual delivery of healthcare, of public health education, of social care delivery utilises the benefits of technology and digital.

We must get better at reaping the benefits of technologies and digital interventions which appeal to men for many reasons but including because they are more accessible and convenient, because they enable engagement and interactivity, and which can be truly personalised to the individual rather than to treat us as a group of individuals.

We have to utilise the benefits which technology give to us in terms of the delivery of health and clinical and care interventions. Digital and technology are not just offering us tools to inform, increase awareness and knowledge, but also to treat, cure and care.

I look forward to contributing to an emerging vision of health and social care which addresses inequalities, but I am increasingly convinced it has to work in close partnership and collaboration with the technological, digital and Ai communities which are already working to effectively improve our wellbeing both individually and societally, and which have I would suggest to date been untapped in their potential to challenge health and social inequalities.

Donald Macaskill

Photo by Jenny Hill on Unsplash

 

The Scarlett Pimpernel that is Social Care

They seek him here, they seek him there

Those Frenchies seek him everywhere

Is he in heaven or is he in hell?

That damned elusive Pimpernel

Famous words from Baroness Emmuska Orczy’s The Scarlett Pimpernel which described the heroic elusiveness of the main character as he managed rescue upon rescue of captured prisoners during the French Revolution.

Being elusive is the heart of the success of the Scarlet Pimpernel. It was a thought that came to mind this week as I reflected two weeks into the campaigning for the United Kingdom General Election about the prominence or maybe more accurately the absence of social care within the election. Now I fully recognise that social care is a devolved matter and that it’s delivery in the Scottish context is obviously the responsibility of the Scottish Government and concerns about it belong to debates amongst Scottish political parties. However, I think the nature of the fiscal relationship between the United Kingdom Government and the Scottish Government is such that whatever is discussed and decided about social care in England does have an impact in Scotland not least of which is any increased financial priority and spend.

So, what has been happening south of the border and indeed across the United Kingdom with regards to social care? Well like the Scarlet Pimpernel I seek some knowledge here,  I seek some knowledge there but the damn elusive social care seems nowhere. Not a mention not a whisper.

Writing in the Independent a couple of days ago Kate McCann said that social care was the issue that Sunak and Starmer won’t touch with a barge pole. Of social care she wrote that it was:

“currently the biggest electoral elephant in the room. It’s no surprise that neither of the main parties wants to touch this policy with a barge pole, after Theresa May tried and found herself tied to the drag-anchor of the dementia tax in 2017 – leading to that now-famous “nothing has changed” moment.”

“Problems with the social care workforce have fed into questions about immigration policy. A lack of available care places in the community means hospitals end up caring for people who are medically fit but unable to leave, clogging up admissions at the other end.”

Yet no commitment from Labour’s Wes Streeting to either social care reform or on the Dilnot proposals. Even greater silence from Labour on the impact of immigration on social care workforce sustainability. Only the Lib Dems seem to be actually talking about social care.

As McCann rightly observes of the two main parties:

“Neither is likely to propose wholescale change of the kind for which experts in the sector are calling, demonstrating a lack of ambition from both Labour and the Tories on this issue. There are clear reasons for this – not least the costs – balanced against the state of the UK economy. But, as political reporters, it makes it even more important to cut through the sales pitches and ask the questions that get to the heart of the problem, otherwise we risk serving voters poorly.”

So what of Scotland – well echoing absent silence here too and missed opportunity.

Last Monday Alzheimer Scotland published a report of the Commission on the Future of Long Term Care in Scotland. Set up in 2022 and chaired by former first minister Henry McLeish, the commission brought together a wide range of voices, including health and social care experts and those with lived experience of dementia. I was pleased to serve on the group.

Over the piece we heard first hand of the challenges facing those living with dementia and the lack of provision to enable people to live independently for as long as possible as well as the critical issues of lack of investment which would enable greater diversity and choice in specialist residential provision.

The report makes 16 key recommendations designed to safeguard and redefine the future of long term care in Scotland.

These include calls for the Scottish Government to:

  • urgently work with health and social care partnerships to undertake a full strategic assessment of the provision of long term care facilities and resources in each area,
  • establish agreed levels of care home and alternative care model places that should be equally available across Scotland,
  • establish a citizens’ assembly to engage across society on the type of alternative approaches to care that people want to access to meet their long term care needs
  • and engage in open, honest discourse around the reality of the current cost of care.

In commenting on the report I said that:

“Long term care matters for all of us. The way in which residential and nursing care is delivered today will inevitably change over the years. This report makes clear that people want to have a wider selection of choice about the care they may need and that they want more voice and control.

The Scottish Government urgently needs to prioritise social care and has to create an environment where external investment is able to support providers to innovate and develop new models of care and support.

In addition, the time has long passed for the inequity of people living with dementia having to pay for support and care which are essentially healthcare needs. There is so much that needs to change and no shortage of people wanting to support that change. The ball is well and truly in the hands of Ministers.”

So it’s an election – social care is devolved – will our Scottish Government take up the challenge and introduce fairness into the way we support people living with dementia? Will we properly invest in long term care  and support? Will we pay for a sector fit for the future?

Or like Sunak and Starmer with heads in the sand – will both commitment to and real change for Scotland’s long term care sector be as elusive as the Scarlet Pimpernel?

Donald Macaskill

Photo by MontyLov on Unsplash

Rights matter more than ever

I am writing this in New York City at the end of a week when I have had the privilege of being an accredited participant at the Open-Ended Working Group on Ageing (OEWG). OEWG has met every year over the last 14 years and was established by the United Nations General Assembly because of a growing clamour from some nations who wanted to see the development of an internationally binding legal framework to protect the rights of older persons. This was nothing new – indeed from the earliest years of the UN Argentina and others had continually campaigned for such a Convention to be created. Yet consistently there had been failed attempts to get it off the ground. OEWG was set up to identify whether there were any ‘gaps’ in existing human rights protections. At various points over the last 14 years, it felt it had done its work only to be sent away again to do more … until this week.

This year in a historic moment on Tuesday a decision was taken ‘by consensus’ to put forward a report suggesting that there were gaps which needed to be filled and to offer some solutions including the creation of a new instrument, a Convention. Yesterday it was decided that this decision should be passed to the UN General Assembly session. So significant progress. I was honoured to be part of the week and to have played a small role in the events by addressing the Session on Tuesday morning. Throughout the week I heard moving and passionate speeches from people who evidenced the harrowing harm and abuse that so many older people are suffering across the world, of the economic harm and abandonment of millions more, and of the desire for millions to be allowed their voice and to find their seat at the table of decision-making and government. But I also witnessed the art of political negotiation, international compromise, vacillating excuse, and blatant national self-interest.

At the end of such a momentous week I am left in a reflective mood about whether or not all this matters. Does any of it have any consequence for the experience of older people anywhere never mind in Scotland. And I am reflecting on all this at a time when a UK General Election has just been called during which I really hope that we will have debates and discussions on the experience of older people and most especially the nature of social care.

In short, I really do believe that for the advancement of all older people and their human rights that an International Convention on the Rights of Older Persons is urgently needed (and I hope the Human Rights Council in Geneva will soon start working on it when the General Assembly so instructs). I would argue that this is the case because as citizens of a global world we cannot but be connected to one another. The passionate Argentinian advocate Alex Kalache spoke of a visit to a favella on the edge of Rio where he stood talking to a woman knowing that 800 metres away the houses of the rich and wealthy meant that their residents were likely to live 20 years longer than the residents of the favella. The old woman Nina asked him ‘Do you know where my parents are?’ And he responded, ‘No I don’t.’ and she said ‘They are underneath your feet. We could not afford to bury them elsewhere, we could not afford it – so they are here.’ This sad encounter is indicative of the grinding poverty and socio-economic injustice which faces many older people; from those who lose their properties when they get old, to those who are abandoned by their families and made homeless because they have ceased to be useful and economically contributive. All of this might seems light years away from our lived experience in Scotland, but if there is anything about the Scottish character that is worthy of acclaim, it is our awareness that we are all ‘our brother and sister’s keeper’, we are all linked to one another in a common humanity and co-responsibility.

We could just rest in Scotland, struggle even more for the rights of older Scots, fight to ensure a better social care system, work for a reduction in discrimination and ageism; we could and will continue to campaign for an Older Persons Commissioner and the rights of older persons to be explicitly evident in any new Human Rights Bill; we could and will continue to call out the economic injustices which treat older people less favourably, to highlight the grinding poverty so many of our older Scots endure. But we also I believe have to do more. Putting our own house in order without sorting the mess of the world in which it is set is simply a retreat from responsibility. Human rights matter for all, everywhere and at all times.

In the coming weeks during a General Election political parties of all colours will engage in an appeal to self-interest – that is almost an inevitability of the political struggle and class. But I earnestly hope that we will also be able to ask questions, make challenges, and raise the voice of those not here but with whom we are global citizens, because what we decide and the government we elect makes a difference to them. Sustainability of our planet is not just an ecological question it is a profoundly demographic challenge and as the population of the world ages the way we address that reality matters.

In my speech at the United Nations, I tried to argue that the creation of a Convention certainly would offer protection for the world’s older people (protection and safeguards which are not there) but that just like the UN Charter in 1948 it also offers us potential. It offers us the ability to recognise the inherent dignity which comes with being old, it offers us the ability to celebrate the giftedness of age with all the richness of its diversity and experience, its creativity and contribution. We have to challenge the ageism which suggests that the old are yesterday’s humans and that the future belongs to a younger generation. Such ageism is rife across the globe. I heard this week that even in a document which is being drafted at the UN about the future – there is barely a mention of the old.

The older generation are as much the future as they have been the past. To deny their contribution, their capacity, their inventiveness, their entrepreneurship, is to limit all our futures. I hope in our own General Election we will not witness such stereotypes and stigma but will witness acceptance that the future belongs to us all, old and young alike. I also hope that our own political parties will come out and clearly state that they are in favour of a UN Convention on the Rights of Older Persons, so that we affirm our belonging one to the other.

During the week I spent some time getting away from the noise and heat of the debate and discussion, the politics and politicking and I wandered around and found a place in front of a painting which had been gifted to the UN by El Salvador in 2019. It was titled Mi Pueblo by Camilo Minero. Minero was a prominent Salvadoran painter, muralist, and engraver. The colourful painting has two themes, one is peace, represented by the light of the sun and the abundance of the natural world. The second theme is human rights, represented in the faces of children, the labouring hands of workers, and the hopeful look of the population that works for a better future.  All living their lives unimpeded under the guarantee of peace.

That should surely be the aspiration of us all, a world where we can live our lives with no discrimination. I am pleased to leave the UN knowing that the struggle for the rights of all including older people lives on but that it is also one that is worth the fight. For me rights matter today more than ever.

Donald Macaskill

It’s time to turn around homecare

The following is based on an address given yesterday at the Scottish Care, Care at Home and Housing Support Conference, ‘Care Revolution: Time to Act’ held In Glasgow.

 

I suspect I won’t be the only one in this room for whom the words of the song from Tracy Chapman were the wallpaper of their teenage years or twenties. First launched in 1988 ‘Talkin’ Bout a Revolution’ became the anthem of disenchanted and disaffected youth and social campaigners at a time of high unemployment, industrial unrest and growing poverty. It was a clarion call not just to be passive and talkative but to do something and to be someone.

The lyrics are illustrative of the whisper that becomes a shout for change:

Don’t you know

They’re talking about a revolution?

It sounds like a whisper

Don’t you know

Talking about a revolution?

It sounds like a whisper

 

Don’t you know

Talking about a revolution?

It sounds like a whisper

 

And finally the tables are starting to turn

Talkin’ ’bout a revolution

Yes, finally the tables are starting to turn

Talkin’ ’bout a revolution, oh, no

Talkin’ ’bout a revolution, oh, no

Talkin’ ’bout a revolution, oh, no

Many of you will know that I love words and languages and their root meanings and in my first language which is Scottish Gaelic the main word for revolution is ‘ar-a-mach’  and is similar to the Latin word revolvere which means  “a revolving,” “turn, roll back”.

All of these have the connotation of return and orientation and so I love the way in which Tracy Chapman‘s song uses the same metaphor that the tables are starting to turn …

Revolutions don’t necessarily mean throwing the baby out with the bath water, of engaging in violent and dramatic destruction and removal of the past. There is no need for any heads to be guillotined in the social care revolution that I want to suggest to you urgently needs to happen in today’s Scotland.

Going back to the way things used to be, a turning of time, is and can be revolutionary in itself and that’s what I think we need in social care not least in-home care we need a turning of the tables – we need a decision and a time to stop what we’re doing and rediscover the essence of what social care and home care is all about.

And why do most revolutions or renaissances or rediscoveries happen? – well usually because people or communities have simply had enough. They become tired of accepting the givenness of things, of settling for third or fourth best, of the status quo which limits and imprisons them.

Whether the civil rights cause in the United States, the disability rights movement of the1970s and 80s, the Dallits or Untouchables in India, – there is a time reached when people say enough – there has to be a better way.

And have we not got to that stage in terms of homecare and housing support in Scotland? Despite the warm rhetoric of political mantra and the delusion of massaged figures and budgets what we have arrived at is a state of affairs that cannot be deemed to be human rights based social care and cannot be seen to embed dignity in the lives of people.

What we have arrived at is a shameful abandonment of the essence of good social care which is about enabling people to be independent, to have control and to manage the living of their lives so that they reach their potential.

What we have arrived at is eligibility criteria set so high that you need to be close to death before you get a package of support, for which it will have taken you weeks and months to get an assessment organised. Then once you do you will get the bare minimum of support.

What we have arrived at is a system stripped of humanity, commissioners arranging an approach to care which is about providing maintenance not furthering life. Keep people alive but no more – and do it cheaper. Let us save money at the cost of living life to the full.

When someone in their nineties gets stripped of the care and support, she has had for 4 years; when someone who is imprisoned in their house by their mental illness has a care package removed with 2 days’ notice; when more and more workers are faced with the impossibility of packing all their compassionate care into 15 minute monitored time slots then …

what we have arrived at is a state of affairs which requires revolutionary change not just a tinkering or a slightly increased budget here and there – we need a re orientation and a rediscovery of the essence of who we are as one another related in our common humanity.

That’s why we need a care revolution and I’m sorry but I simply do not believe that the mechanistic reorientation of the system also known as the plans for the National Care Service will bring that revolution about.

But for a revolution to succeed we do not just need anger and frustration. We have that in abundance. We don’t just need a desire to change for the sake of change – but revolutions firstly succeed when you have a vision of what you want to become as an individual or as a society. And secondly, they succeed when causes are able to garner sufficient support so that there is a collective desire to change the way things happen.

And of those two starter ingredients we have the vision – we don’t need to search or look for it. It’s in the very description we have of social care at Scottish Care – it’s in our DNA – it’s about people being supported to lead the lives they want and need to – it’s in every report we have ever written about homecare.

Homecare as:

‘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.’

And how do we create a collective? – well for home care that means the coming together not just of those who work in the sector, not just organisations which deliver care and support, but all people in our community, not just those who receive care and support and their allies who are themselves drained and exhausted and so often without the energy to fight, to struggle for more than themselves and their loved ones.

We need Scotland to waken up – we need the tables to turn – we need a care revolution so that it becomes the concern of every person, every community, every politician and every individual who considers humanity to be of worth.

We have to stop fighting in our own patch, sometimes sniping at one another, we have to collectively come together and organise. We have the vision – we have the dream – it’s time to act – and the time is now.

But any journey needs strength especially to make that first step – to go outside of the known and venture towards an uncertain future.

I truly believe there is an inevitability that compassion will win out over contracted concern, that reality will replace rhetoric, that possibility can become the norm, that dreams and visions can become the familiar and the ordinary of our lives.

 One of my favourite singers who is very different to Tracy Chapman is the 1960s singer Judy Collins and one of her most poignant and beautiful songs was one that she sang having heard it first from Pete Seeger -a man who knew more than a bit about revolutions and change – who wrote the music to some very well-known ancient religious lyrics – You might also know the version by The Byrds.

To everything there is a season

To everything (Turn, turn, turn)

There is a season (Turn, turn, turn)

And a time for every purpose under heaven

A time to be born, a time to die

A time to plant, a time to reap

A time to kill, a time to heal

A time to laugh, a time to weep

To everything (Turn, turn, turn)

There is a season (Turn, turn, turn)

And a time to every purpose under heaven

A time to build up, a time to break down

A time to dance, a time to mourn

A time to cast away stones

A time to gather stones together

 

To everything (Turn, turn, turn)

There is a season.

 

For social care and for homecare there has to be a season,  this is it,

a season of revolution, a return to care without calculation, to times when relationships mattered more than records, when compliance wasn’t a monitoring system but the relationship between supported person and carer.

a season for everything under the sun

the time is coming when the tables will turn

 

when the talk of revolution will result in change

because the season of compassion, the season of care, the season of regard, the season of prioritising support for all has surely to come.

Enjoy being the care revolution in season and out.

 

Donald Macaskill

 

 

Donald Macaskill

Social care nursing makes economic sense.

The following extended blog is based on an address given to staff at Erskine Veterans on Friday 10th May, in celebration of International Nurses Day which is held every year on the 12th May, the birthday of that original nursing pioneer Florence Nightingale born some 204 years ago.

The theme for this year’s International Nurses Day 2024 is ‘The economic power of care’ which might seem at best a bit of a tangential topic but when you reflect on it, I think, makes complete sense.

I want to share some reflections this morning on this theme and to do so in three strands:

  • What did money mean to Florence?
  • The economics of nursing care, and why I believe,
  • Social care nursing has a particular and unique contribution to make to economic and wider societal wellbeing.

I think it is fair to say that Florence came from a relatively well-off family. She was the second daughter of a prominent family, and her father William was a successful banker. The family owned properties in Hampshire and also an estate in Derbyshire. Like many wealthy individuals of the age, they had a large number of servants and staff. What was more unusual was that William insisted that his daughters had an education, and they were schooled in science, history and mathematics.

Florence was a religious child even by the standards of the age and from an early age she had decided she wanted to in her own words ‘alleviate suffering’ and to do so she decided to become a nurse. At the time nursing had a very low social status and the idea of someone from a wealthy background who simply did not need to work, becoming a nurse seemed unthinkable. It certainly was to her father William who resisted the protestations of his daughter. But like many fathers might recognise he eventually gave in and in 1851 he agreed that she should attend a school for women in Germany where she learnt core patient skills.

Two years later Florence was improving the treatment of patients at a women’s hospital in London. Then the war that changed nursing started. The Crimea War broke out in 1854 and British troops went off to fight in the Crimea – an area in the south of Russia, now part of Ukraine. When news reached the Minister for War, Sidney Herbert that hundreds of men were dying from their battle wounds and diseases he asked Nightingale to lead a team of nurses and go to the Crimea.

Her frontline heroism, her emphasis on hygiene and cleanliness, her transformation of hospital conditions became legendary and modern nursing really started.

After the Crimean War Nightingale was awarded a huge sum of money – over £250,000 from the British Government and in 1860 she used the money to establish the Nightingale Training School for Nurses at St. Thomas Hospital in London. Indeed, during the War in 1857 a fund was set up to support Florence’s work and it raised £44,000 equivalent to £2 million pounds today.

If you read her many letters and the histories and biographies produced over the years you can’t help but be struck by the fact that here is a woman who had economic and financial savviness, and knew the cost of things to the penny but she was always confident that she could raise the money needed in order to focus on what was paramount in nursing – the patient. Indeed, she is quoted as saying that ‘I attribute my success to this – I never gave or took any excuse.”

Money was a means to an end; its absence or lack could not or should not be used as an excuse for poor patient treatment or poor nursing skill and education. And ever since the Florence Nightingale Foundation has invested millions of pounds over the years to improve and advance the quality of care and nursing across the globe. And still does so today.

So, I think Florence teaches us our first lesson on economics and nursing – namely don’t let economic excuse or fiscal challenge become the reason for inaction.

In our modern era then what do we mean by the economics of care?

When the International Day of the Nurse theme was decided it was declared with the statement that ‘nursing creates healthy people and societies and drives healthy economies.’ In other words, there was an assertion that to have a healthy economy you need to recognise the contribution of nursing to societal and national wellbeing and health.

But when the ICN President, Dr Pamela Cipriano explained the reasoning behind the chosen theme, she also issued a warning:

“Despite being the backbone of health care, nursing often faces financial constraints and societal undervaluation … ICN has chosen to focus IND 2024 on the economic power of care with the aim to reshape perceptions and demonstrate how strategic investment in nursing can bring considerable economic and societal benefits.

We believe now is the time for a shift in perspective. We have seen time and again how financial crises often lead to budgetary restrictions in health care, typically at the expense of nursing services. This reductionist approach overlooks the substantial and often underemphasized economic value that nursing contributes to health care and society as a whole.”

Couldn’t be any clearer – if you want a healthy society then invest in nursing and what it brings to the health and wellbeing of that society. When times are tough and economies are struggling it is NOT the time to disinvest or draw back – quite the opposite – it is the time to prioritise in a profession which enables people to remain healthy (especially in austerity); it is a time to ensure that nursing continues to support people who want to and are able to remain part of their communities and who can then contribute themselves to the economic and social wellbeing of their place.

We very rarely view nursing as an economic contributor – we tend to be uncomfortable with that sort of language – but I think we need to get real and recognise that without the daily contribution of nurses up and down our country, then the functioning of our society and economy would simply over time grind to a halt.

It is especially the case in a country like Scotland that nurses enable communities to thrive and people to flourish, and where they contribute to our wider societal wellbeing and health. It is because of nurses that communities live better, and we are all able to become healthier. Without nursing the horrendous health inequalities of our country would become even worse and deeper.

My third strand for the economic contribution of nurses – is what I consider to be the distinctive, unique and particular role of nurses who work in social care settings and contexts.

There is a very active debate about what it is that is special or unique about social care nursing. I am not the only one in this room I suspect who has been reading a lot of threads on Twitter or X and Facebook discussing what a difference social care nursing makes.

There seems to be nothing new in this… more of that in a minute… But here are three descriptions: (so you know what it is that you should be doing.)

‘Nurses in social care have distinct expertise. They use their clinical skills to understand the variety of needs of patients, and also deliver relationship-centred support. They recognise the importance of giving each individual a sense of security, purpose, achievement and significance.’  NHS England

The distinct expertise of this group of registered nurses is in enabling individuals with care and support needs, many of whom have multiple co-morbidities and complex health issues, to live positively in their own homes. They embody the capabilities and cultures of both health and social care professions and employ their nursing knowledge and skills within a social model of care. Their focus is not only on an individual’s health condition and resulting impairment but also on the impact this has on their participation in social and community life.  Skills for Care

​A healthcare need is related to the treatment, control or prevention of a disease, illness, injury or disability. And the care or aftercare of a person with these needs. A social care need is focused on providing assistance with the activities of daily living.’  MIND

My former colleague Dr Jane Douglas researched and wrote a brilliant report which was published two years ago. It stated that:

“While participants to the study struggled to define the role of nursing, they were able to clearly articulate the knowledge and skills required to undertake the nursing role in care homes, along with the value of having Registered Nurses. They easily reflected on how they use their own knowledge and skills to ensure residents in their care remain as well as they can.’

It went on to say:

‘The Social Care Nurse focus is to ensure better outcomes for people experiencing care and their relatives, to ensure a quality of life and a quality of death. To support the person to be as well as they can with the understanding that wellness fluctuates daily. This is achieved through a holistic person-centred approach.’

That definition and the findings of her report in part grew out from and drew upon a Twitter debate about the distinctive role of social care nursing. And lo here we are again two years on and we are still debating what is distinctive and special, unique and particular.

But the very fact that there is need of a conversation in the first place tells its own story about the under-valuing, the stigma and the marginalisation of social care nurses. I find it astonishing that there is such a high level of ignorance amongst nurses who have never worked in the social care sector about what it is that their colleagues and fellows do. I find it shameful that there are so many instances of casual dismissiveness that suggest that social care nurses are folks who are wanting an easy life away from the hard work and grind of the acute hospital ward; I find it demeaning that there is so little understanding of the ultra-professionalism, astonishing levels of skill and autonomy that exists in the care home sector.

Can you imagine that surgeons in different disciplines would so easily dismiss a colleague or worse than that would not even consider that it was worthwhile that they should know the scope, expertise, clinical ability or patient insights of a colleague.

Maybe we have got it the wrong way around – rather than social care nursing having to defend its position, propose a theory of its uniqueness and posit its distinctiveness – maybe our colleagues in the NHS can tell us what is so special about the jobs that they do that all others in social care should be so casually excluded from value and appreciation, from recognition and notice?

In the theme of the day perhaps more than any other form of nursing it is social care nursing that helps turn the wheels of our economy. It enables people to be supported and nurtured so that they can continue to contribute. It nurtures relationship, fosters community, attends to not just the clinical needs but the holistic requirements of a person in community.

Social care nursing has to re-discover the spark of passionate identity which Florence Nightingale fostered – for if nothing else it strikes me when you read the works of Nightingale that it is social care nursing that seems closest to her original person-led, relationship based, autonomous understanding of nursing from life through to death. In social care nursing we get Florence’s sense that nursing was not an added extra or luxury, but an essential ingredient which bound our common humanity together especially to those who were wounded or ill, broken or fragile.

Florence once said:

“The world is put back by the death of everyone who has to sacrifice the development of his or her peculiar gifts to conventionality.”

It is time for social care nursing to stop being put back by dying to be defined … we should not be continually having to defend a definition but rather need to proclaim the irreplaceable benefits, the peculiar gifts, that the women and men in this room and outside across Scotland’s care homes and social care organisations are bringing every single minute of every single day.

Happy International Nurses Day when it comes.

Donald Macaskill

Demystifying Death; the silence of emptiness.

I sat last week and listened one year on from the day since Joan’s husband had died as she recalled the ups and downs, the tears and laughter that had been her year’s journey of grief. She had so many thoughts and memories which came tumbling out almost without ceasing, not least as she told me she needed to talk because when folks asked how she was she knew that it was just a passing off the cuff remark and that it did not really mean that they were wanting or prepared for an outpouring of truthfulness in all its raw and contradictory reality. So, she grabbed the chance of an anniversary hour and spoke and spoke and spoke.

It is unfair to try to summarise anyone’s mourning and grieving in a phrase or even anecdote, but one thing Joan said to me struck a resonance of recognition within me – that her grieving was all about ‘the silence of emptiness.’ I have often reflected over the years in this blog about the nature of emptiness and loneliness as it affects people as they grow older and age and as relationships change and come to a physical end, but there is in truth something unique about the emptiness of living in the absence of a loved one. There is something about silence stripped of sound, of energy and purpose which arrives when someone you love has died.

Joan talked in a way that spoke to me of all the moments I know and have myself experienced. The phone call you start to make before you come to the realisation that there is no number to call that will end up with you hearing that voice; the days when in excitement and happiness you rush home to talk and share but as you open the door you know that the crushing emptiness of silence will be all that will greet you; the fragile forgotten moments when you used to just gossip and opine, argue and agree; the rituals of a week whether the midweek night out at the cinema, the Friday night glass of wine, or the Saturday morning walk – all now accompanied by absence and silence and emptiness.

Now life seems full of the manic desire to fill every moment with activity and action in a failing attempt to forget just for a moment. And to top it all the sense that beyond a few people there is no one out there who really understands what you are going through and your sense of self-guilt that you aren’t further down the road, that you are still back at the first step on so many days, that sleeplessness is more often your night-time companion, and that there seems to be a never ending path ahead. That first year – and the next and the next – in the calendar of absence and loss seems to tick inexorably slow.

I sat there and listened not trying to do anything other than to be present so that the tears and sound might find some solace, but as I did I thought to myself why is it that personally, individually, and as a community we are failing still to give place to those who are lost in grief, real attention to those whose pain is locked silently within them, and have and are continually failing to offer true solace and compassion to the bereaved.

Nearly 6 years before the time I spent with Joan a handful of folks met together in May in Glasgow to talk about the sad state of bereavement support in Scotland at that time. Our concerns were that as individuals and as professionals we were continually coming across people who were broken by grief and a system of health and care, workplace and community, which seemed so inattentive to the needs of the bereaved and the grieving. We knew the personal and societal cost, the economic and community burden which resulted from grief unspoken and an inadequacy of effective bereavement support.

Out of those early discussions we set up the Charter Working Group which resulted in the creation of Scotland’s National Bereavement Charter for Children and Adults. Since then, we have continued as a group to raise the profile of bereavement and the importance of changing the way in which we support those who are grieving. We have developed guidance, and animations and videos, held webinars and seminars. All of this rooted in the conviction that good and adequate bereavement support should be a fundamental characteristic of our society. Indeed, our premise was and was and still is that bereavement support should be a fundamental human right.

Six years on it saddens me that I can sit with Joan and still have to conclude that Scotland is a country where we simply do not do death and dying, grief and bereavement well. I still have that hope and aspiration that Scotland could be that nation, our communities could be those places, where the bereaved are able to talk without a sense of burden, where businesses and organisations do more than tick the box in their offering of support and practical care; where we talk openly and honestly, emotionally and rationally about what it means for us to grieve and to mourn. But we have a huge distance to go and in part one of the things that holds us back from the achievement of the Charter’s aspirations, is that we are still too silent in our talk around death and dying, grief and loss. We are still as likely today to cross over to the other side of the road when we see the bereaved approach rather than to stay and be present.

That is not to deny the amazing work that is happening in communities and cafes, in pubs and parks, in theatres and church halls across Scotland. There is more chatter about grief and in no small part that is due to the work of Good Life, Good Death, Good Grief. This brilliant programme holds an annual week in which it seeks through small local projects and events, using the ordinariness of the commonplace and the creativity of the arts, to get us talking about death and dying. Demystifying Death Week is starting on the 6th and across Scotland this week in many places and spaces near to where you are you will have the opportunity to experience an honest conversation. As Good Life, Good Death, Good Grief says:

‘People usually want to do the right thing when someone they know is affected by serious illness, death or grief.  But often they can feel awkward offering help or worry about making things worse. People can have questions about serious illness or dying. But often they don’t know who to ask. Making plans when you’re healthy means there is less to think about when you’re ill. But people can put off making plans until it is too late.

Demystifying Death Week is about giving people knowledge, skills and opportunities to plan and support each other through death, dying, loss and care.’

My hope and aspiration live on. We can and must become more comfortable not just with talking about grief and loss but putting our words and platitudes into practical authentic living. I hope in the days and months ahead we might all continue to shatter the silence of emptiness around grief.

I end with some of the words of the British author and educationalist Abi May who also writes a grief and loss blog and who in a post entitled ‘Griefbursts and silent screams’ wrote this:

I screamed today.

A silent scream.

Nobody saw.

Nobody heard.

I clenched my fists

And breathed in deep

A silent scream

Nobody saw.

Nobody heard.

There were no words.

None to speak

None to say.

I closed my eyes

Shut them tight

My face was creased

And stretched

Muscles tense

But soundless

My silent scream

Came from the heart

From a place so deep

There are no words

I didn’t cry

I just bore down

I screamed alone

Without a sound

There is no why

Nor where and how

For what, it can’t be said

But for whom.

I screamed today.

A silent scream.

For her, that special one

The one who long is dead.

Donald Macaskill

Photo by Ann on Unsplash

The criticality of immunology and vaccination for social care.

On Monday and Tuesday of this past week I had the pleasure of spending time with colleagues from across the United Kingdom and Ireland at a meeting of the Five Nations Care Forum. This is a bringing together of senior staff from social care representative bodies and happens a couple of times a year. This spring meeting was hosted by Boots and took place in their headquarters in Nottingham.  As well as discussions on the key issues facing social care, I particularly enjoyed the opportunity to discover more about the history of Boots and the critical role of pharmacy in the support and care of all citizens but most especially for our older population.

In many ways the world of pharmacy is facing similar challenges to social care with issues  around public and governmental funding especially for community pharmacy, issues relating to recruitment and retention of staff, changes in the role of the pharmacist and the need to prioritise resource around research and development. But one thing I was continually struck by in my discussions was just how important it is that we have a constructive and positive relationship between those of us who work in social care and those who work in pharmacy. From the need to better support community care staff to assist folks in their use of medicines, and this will only grow as more and more people are supported at home rather than in hospitals, to the need to address issues of ecology and sustainability around medicine waste there is a need for a very close and developed relationship between social care and pharmacy. And as in all things this relationship needs to be nurtured at both local and national level to be of real benefit to all.

I was reflecting on all this when I discovered that in a couple of days on Monday 29th April, we will be recognising World Immunology Day. Indeed this year’s theme is “Immunity Through the Ages: Navigating the Science of Aging and Immunology.”

Some might ask why is someone who works in the world of social care reflecting on immunology? But in the light of a global pandemic which devastated so many lives and communities I would hope the role of immunology would be self-evident but also that its significance for all in both social care and in community would be better understood and elevated. Sadly, I suspect with the passage of time except for those who continue to be concerned about the impact of Covid on their own lives and those of others, for the majority thoughts of viruses and pandemics are fading into the rear or even worse are being deliberately ignored or deprioritised.

The British Society for Immunology states that:

‘Immunology has its origins in the study of how the body protects itself against infectious diseases caused by microorganisms, such as bacteria, viruses, protozoa, and fungi, and also parasitic organisms, such as helminth worms.’

This year there is a particular focus on the impacts of infectious disease amongst the old.

For those of us working in social care issues of immunology, infection prevention and control and vaccination have become centre stage to our concern and focus since Covid and for the majority of practitioners they remain so. Sadly, there are still people dying of Covid every week and there are still individuals who every week die as a result of developing other infectious diseases such as influenza. Yet the impact of infectious disease seems to be continually marginalised and ignored. So, the role of immunology remains or at least should remain of primary concern to the practitioners of social care.

When I was in Nottingham the latest report from Public Health Scotland was published and it showed a fall in Covid-19 and flu vaccine uptake for all eligible groups in the winter that has just passed when the figures of uptake were compared to winter 2022/23.

Like many I am increasingly concerned that vaccination rates seem to be going in the wrong direction. That concern has critically to do with the extent to which – despite the naysayers and anti-vaccination lobby – there is clear evidence that vaccinations have saved the lives of and protected tens of millions of individuals against so many conditions, not least Covid and influenzas.

In addressing the figures, Dr Sam Ghebrehewet, Head of Vaccination and Immunisation, at Public Health Scotland said:

“Vaccination remains the best protection against severe outcomes of both flu and COVID-19 and reduces the likelihood of severe illness, hospital admission, and in some cases death. Work is underway to understand the reasons behind the decrease in vaccine uptake. This is crucial to ensure that those most vulnerable are aware of their eligibility for vaccination.”

I suspect that some of the answer to those explorations will be (though I know this will not be articulated) a lessening in focus and priority on the role of vaccines in general not least by the prioritisation given to it through planning and resource allocation. At the height of the pandemic or most especially in the latter days of late 2020 when the first vaccines began to be rolled out, there was significant co-operation between the worlds of health and social care around vaccination both for residents in care homes, older people supported in the community and the health and social care workforce. That co-operation and joint working is sadly much diminished and so I fear that there is a lack of co-ordination, targeted support and priority.

We know for vaccination programmes to work well that vaccines need to be delivered to people in a manner which is as easy as possible. For many this will be at their local community pharmacy and for health and social care staff at their place of work. Whilst vaccines at work remain a priority for colleagues in the NHS sadly this is not the case for social care staff. Expecting workers in their own time to go and get vaccinated is inevitably going to reduce uptake not least when we are talking about those who are in roles which do not earn a lot of money and many of whom have to work extra shifts or extra jobs. As I have said on numerous occasions for a vaccination programme to work in the care sector, we need to take the vaccines to people, and we need to make sure that we address myth and scepticism which exists around vaccination.

We can and must do a lot more to protect everyone from the very known risks of infectious diseases and as my own organisation, Scottish Care, commented in response to the report, I believe that this should, include a targeted campaign to increase the confidence of all, especially social care staff, which both addresses vaccine scepticism and also popular myths and attitudes which suggest that catching Covid-19 or the flu are not serious.

Walking around the Boots headquarters and exploring the rich history of an organisation that for the last 175 years has been bringing medicines and pharmacy to the British public showed me just how critical pharmacy has been in addressing the ravages brought about by diseases. The fact that in general terms life expectancy has been extended and most live in health has been because over history we have eradicated so many infectious diseases which were once deadly. But addressing the challenges of infectious disease did not happen by accident – but rather it was achieved through targeted, joint working, relationships and partnerships at local level. So increasingly I feel we need to break down the barriers which sometimes exist between the worlds of pharmacy and social care, increase mutual understanding and professional regard, and together prioritise ways in which we can ensure all who need to be are protected from disease and infection. If the pandemic has taught us anything it has surely taught us about how important it is to work across boundaries, to know the worlds of others and to avoid silo thinking and planning.

As we think about immunology and vaccination, like many in the world of social care I think about the challenges that a new season of infectious disease, whether Covid or influenza might bring, and I increasingly wonder as to whether we really have learned the lessons of a pandemic for which we were so badly prepared. Are we working together to address known and unknown immunological threats? Certainly, given the complete absence of social care provider contribution in the current Scottish Government pandemic planning, the signs are not good.

Donald Macaskill

Home is where the health is

Home is where the health is … ageing well in place.

The following is a shortened edited version of a talk given to the Edinburgh University Advanced Care Research Centre (ACRC) Spring Symposium on Monday 15th April.

Whether tenement flat, bungalow, farmhouse, or croft virtually every piece of research I have read or conversation I have held with folks over the years has articulated a desire to age in place, remain in place and to die in place – if all else is equal.

Space and place are intrinsic to not only our psychological sense of wellbeing but also to our physical health, not least in a community such as Scotland where health inequalities are so influenced by geography and economy. In the lottery of location, location, location where you live matters for how healthy you are or are not.

Over the years I have written and spoken a lot about what it means to belong to somewhere, and the influence that such a sense of place can have upon your health and wellbeing, or even more critically what happens to you when due to no fault of your own you are unable to ‘remain’ in your locale or when ‘you lose your independence.’

There is a rich history of research on the desire of people to live independently in their own homes for as long as possible. There is an accepted presumption of the truth of that sentiment, albeit that we also have growing evidence to show the clear health benefits of congregated or shared living when an individual may reach a particular age in life or stage of frailty.

The presumption of home first is part of the DNA of our social care policy and delivery. It is articulated in the Scottish Government’s post pandemic Statement of Intent on the ‘Health and Social Care of Older People.’ in the following terms:

‘Our vision for Scotland

We want people to enjoy a high quality of life as they grow older. Our ambition is to make Scotland the best place in the world to grow old. We want to achieve this through safe, integrated, person centred health and social care. Everyone should be able to live independently, and drive the decisions about their health and wellbeing; with their human rights respected and their dignity protected…’

All this underlined further when it states:

 ‘Home first approach

 People have told us that they would like their care and treatment to be delivered in their home or local community as much as possible. Our health and social care services must reorganise themselves to better support people to live well and independently in their communities as they age.’

Health and social care for older people: statement of intent – gov.scot (www.gov.scot)  (March 2021)

Laudable, clear, and factual in statement and intent. Hard to disagree with it.

And we can all recognise similar aspirations, notably the desire for independent living – throughout the years of policy of Scottish national government, whether in the seminal work of the key learning disability report ‘The Same As You?’ of 2000 which hastened further the closure of our long stay institutions, or the more recent passion behind the Feeley Report, the Independent Review of Adult Social Care (2021) – people time and time again have stated the desire to live as independently for as long as possible.

The ageing-in-place agenda posits that the preferred environment for older adults to age in is the community, where they can remain active, engaged, socially connected, and independent.

The question is – have we as a society paid more than lip service to that aspiration? Have we fostered and nurtured the civic and care capacity to respond in full to that desire or have and are the visions of ageing in place becoming rooted in the soil of delusion? How prepared is Scotland to enable people to age healthily in place?

I want to explore this issue of healthy ageing in place – through three perspectives, namely legislative, finance and the built environment.

1.

The first is legislative. It is sometimes lost amidst all the talk of reform and reshaping, of new creation and novel development such as the National Care Service, that Scotland already has some of the most progressive health and more specifically social care legislation in the world.

The Social Care (Self-directed Support) (Scotland) Act 2013 (SDS Act) sought to bestow upon the individual who required support and care new rights guided by the principles of participation and dignity, involvement and inclusion, informed choice and collaboration. It aimed to change practice from assessing what someone needed to maintain and survive life to determining what outcomes would enable that individual to flourish and thrive. Budgets were to be in the hands of the supported person; new models of innovative, community-based supports would be developed as flexibility, creativity and diversity were written into Guidance and advice. It was all designed to allow folks to live the ordinary lives they wanted and to participate as full citizens of their local communities. In essence it was about enabling ageing in place (before the term became commonplace.) This was primary and preventative health care dovetailing into community-based social care.

Derek Feeley 8 years later in his Review told us what those of us on the ground knew already namely that the implementation of the SDS dream had failed.

It was clear from his Review that from the experience of many of the stakeholders who had engaged in its processes that the implementation of Self-directed Support (SDS) was symptomatic of the failure to embed progressive social policy within the existent political and governmental systems. SDS failed and is still failing in part because of the impacts of austerity and economic downturn and later the pandemic but in truth the faultiness are a lot more local. Social care as delivered today and Self-directed Support as initially conceived has been and is hampered and limited by the current model of local government in Scotland and by the desire to entrench power and control within the hands of those who finance and contract rather than bestow control and choice to citizens.

SDS provides the foundation stone for a re-shaping of social care that enables the person to be in control, to utilise autonomy and exercise choice not only of the decisions made around their life but of the outcomes they want to achieve.

The legislation already exists to enable place-based healthy ageing – the commitment around implementation is what is lacking. We are paying lip service to individual choice and personal control.

2.

The second influencer upon any assessment of ageing in place must be the fiscal reality of the current moment. Folks like me who have been around this social care world for more years than we would wish to confess recognise that we have never before seen the drastic levels of savage cuts to social care provision we are facing now. What is happening in our local communities across Scotland today rides a coach and horses through legislative intent and political aspiration.

In the days and weeks that have recently passed I have come across numerous instances where individuals are having their packages of support and care reviewed, reassessed and stopped. Indeed, I know of several authorities which have established review teams ostensibly to make sure people are getting the right support but in reality to cut the majority of packages and find savings. Now in a context of fiscal waste I can understand such a measure – but we are already talking about a population who only receive services at the level of critical and emergency need. How many people do you know who as they age require less support? A few yes but the majority – no way.

Despite the self-assurance rhetoric of commissioners and local officers in health and care partnerships what we are witnessing is frankly a grotesque cost saving exercise which is putting people’s lives at risk or at best is serving to limit and diminish those lives.

Indeed, the CEO of Age Scotland Katherine Crawford warned about the precarious state of social care in Scotland, stating that:

“The longer people wait for care, the more acute their needs can become. Distressing figures from last year showed that hundreds of people died while waiting for care packages to start. For others, it is unsafe for them to be at home without the care they need, resulting in poorer health, increased hospital admissions and yet more pressure on the NHS as people are trapped in hospital.”

“The crisis in social care in Scotland is fast becoming a national scandal.

More than 10,000 people waiting for social care at home (agescotland.org.uk)

She is of course right because the latest figures from Public Health Scotland found that 6,811 people are waiting to be assessed for social care at home, with a further 3,393 waiting for a care package to be delivered. The vast majority of these are older Scots.

Because those who age in place are largely invisible, because they don’t form queues in ambulances outside hospitals or in A and E corridors – they have become the easy collateral of the phoney war which is going on in our communities. A war which proclaims a political rhetoric of more investment and funding in health and care whilst the truth on the ground is of stripped back services, packages of support being removed (often with only 72 hours’ notice) and people being quite frankly abandoned to age unhealthily. The vast majority of additional resource is helping to pay workers a better wage which is fundamental, but it is not adding to the level of support in any significant way.

We’ve turned away from an aspiration to enable people to be supported by preventative care to enable them to age in place and potentially thrive and flourish into a system which is about maintaining people. There is no dignity in a life which simply breathes in and out but whose choice, wishes, feelings, desires, and dreams are negated.

3.

There are of course other dimensions which also need to be addressed if we are to achieve a healthy ageing in place.

Central amongst these is our built environment, not least our housing stock.

In 2018 I was writing and speaking about how important it was that we started to re-design our city centres to enable them to become once again places where people of all ages were able to call home and to do so in a manner that was truly inclusive. To some extent this has and is happening, but I fear that it is a process of re-design which excludes the potential of ageing in place. But do we have an urban environment which validates and values ageing in place?

I was intrigued by the research of three Scottish based academics Brunelli, Smith and Woolrych in a paper ‘High streets, ageing and well-being’ published in the Journal of Urban Design at the start of this year. In it they explore three Edinburgh ‘village’ high streets.

Full article: High streets, ageing and well-being (tandfonline.com)

They start from the premise that ‘despite their perceived decline, local high streets in the UK remain valuable central and well-connected places that can foster ageing in place, yet their potential to sustain well-being in old age has been overlooked.’

Analysing their qualitative and quantitative data they explore older people’s well-being in four key dimensions: social well-being, sense of place, enjoyment and feeling active and sense of purpose and mastery of the environment.

Their findings include an assertion that to make these locales more age-friendly and to support older people’s well-being:

‘it is desirable to: make the public realm more inclusive, pedestrian-friendly, and integrated with public transport infrastructure; actively support the clustering of amenities, shops, services, and bus stops, anchored to a day centre/local hub; encourage attractive shopfronts to support a welcoming and safe atmosphere including the externalization of activities, for example, adding opportunities to sit outside; and increase the provision of affordable housing near and/or on the actual high streets.’

It can be achieved with collective coherent inclusive involvement of all voices in town planning, in architectural design and in urban investment. I really do believe our cities and towns can become age friendly and dementia confident. To do so we in part need to challenge the bias in the construction industry which effectively buys out ‘social housing’ targets – when did you last see a bungalow built? We need to address the issues of pavement furniture and shared pavements; of traffic lights that are far too fast, a lack of seats and public toilets, poor visual signage and so much more.

We also need to challenge the ghettoization of ageing which creates villages for those with dementia equivalent to the asylums of the Victorian era – age out of sight out of mind even in a luxury environment. Ageing in place also requires a collective reframing of workforce skills and abilities to make all retail, commercial and community staff, both in the public and private sectors confident around age and all it brings including dementia rather than simply aware.

But as the Centre for Ageing Better made clear in a report last year:

‘ simply changing the built form is not sufficient to create a more inclusive environment for ageing since places are more than physical spaces. Viable environments are articulated through a strong sense of place, defined as the social, psychological and emotional bonds that people have with their environment. A strong sense of place results from having access to supports for active participation, opportunities to build and sustain social networks, and assuming a meaningful role in the community. In contrast a feeling of displacement or ‘placelessness’ is associated with alienation, isolation and loneliness, often resulting in adverse health and well-being outcomes, particularly amongst vulnerable older adults.’

To conclude if home is really to be where the health is, where people can age in a manner that allows them to grow and change, thrive, and flourish, then it requires the collective will of designers and architects, planner and politicians, economists, and employers to create the spaces and places that allows for that. It demands a vision of ageing where those who age are in control, not just at the centre of someone else’s concern. Technological innovation can take us part way down that road but without the societal willingness and political investment it will be a wasted journey.

Donald Macaskill

Photo by Katie Barrett on Unsplash

The devaluing of care: the stress of caring.

The month of April is Stress Awareness Month which has been held every April since 1992 and which is designed to increase public awareness about both the causes of and cures for what in many parts of the world is a stress epidemic.

Stress has been a topic and theme that has always interested me both in a personal and professional way. My interest probably started when as a teenager I was aware of two adults in my life who were deeply affected by stress. One was an individual who worked constantly and relentlessly – people around him tried to get him to slow down, to take a break, to look after himself by eating better and not drinking so much. All of it was to no avail as he powered on to the get the next task done with an invisible deadline focussing his mind and work pressure dominating his priority. He used to dismiss concern by saying he was a ‘workaholic’ and he needed therapy not criticism.

He quite literally worked himself to death because one day he dropped dead in his late fifties of a massive heart attack. At his funeral people talked about how his stress and workaholism had killed him with someone in my earshot opining that “There are too many in this graveyard who are there because of stress.”

The other person I’m thinking about was someone who was continually anxious and who was always concerned that what they did or how they performed was never good enough. They had held down a good job but over time they got more and more anxious and their life and relationships began to be deeply affected by the pressures they felt they were under at work. Despite very real and honest attempts by managers and employer they continually felt that they were falling short and what started as occasional days off work morphed into days and weeks. After a while they were in the language of the time ‘signed off with stress.’

Two very different instances but with one common link – stress. After this I went on to study the nature of stress and in particular occupational burnout and its relationship to self-identity. After conducting just short of a hundred interviews I realised just how complex the whole nature of stress was but just how devastating it could be not just for occupational role but for your very health and wellbeing and the relationships you were or were not able to have. Stress really was and is a killer and can change lives dramatically.

According to research in 2022/23:

  • There were 875,000 cases of work-related stress, depression or anxiety.
  • Stress, depression or anxiety accounted for 49% of all work-related ill-health cases and 54% of all working days lost due to work-related ill-health.
  • The main work factors cited as causing work-related stress, depression or anxiety include the demands of the job, lack of control, lack of information and support, work relationships, and roles and responsibilities.

There is a huge amount that organisations and employers can do which not only fulfils a legal duty, but I would argue a moral one, to ensure the health and wellbeing of their employees. Doing so as the HSE argues is good for business as it increases productivity, reduces sickness absence and nurtures staff.

In the last few years, we have seen across the board an increased awareness in targeted resources and support to improve mental wellbeing for the workforce not least after the pandemic.

Having said all that – and we certainly need to continue to resource and develop practical work-based mental health supports – I think there is much more to reducing stress than responding with support after stress has occurred – there are clear preventative approaches.

One of the few insights I have gained over the years in researching and reading about stress is that there is an inextricable relationship between the stress one experiences in work or life in general and the extent to which your role or job of work is valued or you feel valued personally in life or relationships.

When I interviewed people nearly three decades ago about what made them stressed – yes the volume of work, lack of structure of support, financial and other pressures all were commonplace – but what was highlighted more than anything was the extent to which they felt they were not valued in their role.

Jump forward to conversations I’ve been having in the last 4 weeks, and it has felt to me as if I’ve turned back the clock. Time and time again home carers, nurses in care homes and managers in care services have told me that what affects them and their colleagues more, what adds to the stress is that they feel the job they do is not valued, understood, respected, or considered of worth by others around them. Put simply they are saying to me that a significant part of the stress they are enduring is because of a perceived lack of worth and value impacting on both occupational and personal self-esteem.

The pandemic brought about the moment of the clapping syndrome – where every Thursday (eventually for social care) people would gather in the street or on their front steps and visibly thank key workers by clapping. But no sooner had the claps echoed into silence, frontline care staff fell into the old routine and habit of being told they were ‘just a carer’; of others being more rewarded by pay increases, of struggling to get people to consider that social care was just as important as the NHS. People like me go on about this imbalance a lot – for instance how we have a ministerial role which talks about NHS Recovery but not one for the equally if not more pandemic traumatised social care world and workforce. At the frontline, workers are stressed to an extent and degree that I and others haven’t witnessed – it is a set of system harms resulting in real illness, fatigue and burnout.

But for many it isn’t just about salary and reward, about systems and models, it is about how society does or more honestly does not value the job and role, the professionalism and expertise entailed in the role of frontline care work.

Collectively we will only address the burnout and stress, the breakdown and despair at the heart of both paid and indeed even more so unpaid care, if as a whole community and society we start to value care and support as the heart of our being community with one another.

I know that many carers love and find huge personal satisfaction from their job and what it brings and means to the people they support – the truth of that is seen in the long service and dedicated professionalism of thousands of women and men who would be capable of earning so much more in other sectors. But we also, I would suggest, have to recognise those we lose to care, those who leave and give up, those who are stressed and burnt out because they simply don’t feel valued or wanted by wider society. As one put it to me recently. ‘“What I do is who I am. I can’t imagine not being a carer. But there are so many who think my job is of no consequence and who brush me aside. When that happens, I feel so empty and just want to scream.”

If we are to address workforce and personal stress in the care sector, we must surely start by valuing the very essence of the role of care and support? Sadly, we have a long way to go on that journey but it has to start sometime.

Donald Macaskill

Photo by engin akyurt on Unsplash

 

Scotland can’t wait… social care needs to act about Parkinson’s

On April 11th there will be a global coming together for what for a number of years now has been recognised as World Parkinson’s Day. It sits within Parkinson’s Awareness Month which is designed to increase knowledge about and awareness of the condition. Like many people Parkinson’s has touched my life professionally and personally. It is a condition which affects around about 13,000 people in Scotland and every week it is estimated that around 30 new people are diagnosed with Parkinson’s. Anyone working in social care services and supports will be aware of the extent to which this condition affects the daily lives of so many across the country, and also how poor our response to the condition has been and still is. Those of us working in social care recognise the truth that Parkinson’s is the fastest growing global neurological condition.

This was exceptionally well argued in the latest report from Parkinson’s UK in Scotland, which was published in January 2024. The report is entitled ‘Scotland can’t wait’ and is a cogently argued, data packed document listing the many gaps in support for people living with Parkinson’s and affirming the truth that these people and those who support them cannot continue to wait for the issues of failure to be addressed.

It is, sadly, a very familiar story to so many people who live with neurological conditions in Scotland today. Whether it is dementia, or MND or Parkinson’s there is a systemic failure to respond to conditions which can be significantly supported and alleviated were the right support to be in place. We may as a system and nation be good at publishing plans and strategies but our implementation and driving of real change that makes a difference on the ground falls woefully short. This truly is a failure to care.

The ‘Scotland can’t wait’ report has a whole host of recommendations for NHS Boards, on investment in medication, on workforce development and increased capacity and much more. It is worthy of both reading and wider dissemination. A section which particularly interests me is one which emphasises the need to do more around mental health and in relation to those who live with Parkinson’s who develop dementia.

Parkinson’s manifests itself in diverse ways and no two people demonstrate and evidence  the exact same responses to the disease. It is estimated that there are over 40 distinct characteristics that make up the Parkinson’s condition. The NHS website describes it in the following terms:

Parkinson’s disease is a condition in which parts of the brain become progressively damaged over many years.

‘The main symptoms of Parkinson’s disease are involuntary shaking of particular parts of the body (tremor); slow movement and stiff and inflexible muscles.

A person with Parkinson’s disease can also experience a wide range of other physical and psychological symptoms. These include depression and anxiety, balance problems (this may increase the chances of a fall), loss of sense of smell (anosmia), problems sleeping (insomnia) and memory problems.’

In Scotland it is estimated that 30% of those living with Parkinson’s have dementia and an estimated 50% need support with daily activities. The conversations I have with both care home and care at home providers and front-line staff illustrates that supporting people with Parkinson’s is increasingly also about supporting people who are living with Parkinson’s and dementia.

The recommendations of the Scotland report highlight the gaps and they range from a lack of awareness amongst NHS generic mental health professionals about the nature of Parkinson’s; the need to increase the neuropsychology and neuropsychiatry workforce to meet the needs of people with neurological conditions to the need to develop better support for future care planning (including Powers of Attorney) before someone develops dementia.

Over the years I have noted a growing relationship between some Parkinson’s services and the social care and dementia service sector, but this occurs more often than not through local relationships and professionals committed to working collaboratively around the needs of a person. The Parkinson’s UK Scotland report quite rightly argues that such collaboration and co-ordination needs to be much more systematic, planned and adequately resourced. At the moment I very much fear that people living with Parkinson’s who develop dementia are being doubly excluded and not achieving the level of support and care for their dementia that they rightly deserve. The idea of joint clinics and the inclusion of Parkinson’s specific education within general social care dementia training are two good examples of how progress could be made.

In speaking to a family member recently she remarked to me how she thought she was well prepared and aware of what the Parkinson’s journey was going to mean for her partner but that she had been blind-sided by the changes in him which she now (with hindsight) recognised as his developing dementia. These included him starting to have bad and frightening dreams, his inability to make a decision and keep to an agreed plan or action; that he was finding basic activities like getting dressed or using the TV remote control really difficult. She had not known of the significantly increased risk of developing dementia if you have Parkinson’s and neither, she told me, had most of her friends in support groups been aware of this factor.

A real legacy of this year’s World Parkinson’s Day would be for there to be positive action at all levels, not least national government, to address the recommendations of the Scotland can’t wait  report and for those of us who work in and deliver social care supports, not least dementia, to better understand the consequences of a condition which is still so misunderstood and sadly all to frequently ignored.

Over the last couple of years, the Parkinson’s community shared hundreds of poems with Parkinson’s UK for World Parkinson’s Day 2022 and 2023. They were happy, funny, sad and thoughtful and told the world how Parkinson’s has affected individuals. Here is one which demonstrates the positivity of so many I have known who have lived with Parkinson’s. But that positivity demands Scottish society and care and health leadership to play its part because Scotland truly can’t wait.

Shiona from Dumfries and Galloway  wrote:

I can still breathe

I can still bend

I can still laugh

I can still love

I can still fly

Donald Macaskill