Towards a human right for infection prevention: a blog for Human Rights Day in the year of the pandemic.

One of the most famous pieces of writing about human rights undoubtedly belongs to the so-called Mother of Human Rights, Eleanor Roosevelt who wrote:

“Where, after all, do universal human rights begin? In small places, close to home – so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual person; the neighborhood he lives in; the school or college he attends; the factory, farm, or office where he works. Such are the places where every man, woman, and child seek equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.”

Today is UN Human Rights Day. It is an annual opportunity to reflect upon and to celebrate the role and value of human rights in modern society. For Eleanor Roosevelt, in order for human rights to have meaning and purpose they had to speak to the ordinariness of human living, the mundanity of interaction and the essence of what it meant to be related both to friend and stranger. This last year has been a year unlike any other for all of us but perhaps especially for those living in our care homes and for their families. Theirs has been an experience of a world turned upside down and inside out. Places of interaction and busyness have overnight become empty and silent; the love and touch of family has been excluded in the name of protection and suppression of the virus; the devastation of death and disease has taken too many lives and harmed beyond healing the lives of yet many more. This has been a truly awful year and for many remains so.

In this short piece I want to reflect on human rights and what has happened in aged care facilities and in care homes. I have commented elsewhere and will leave to another time a fuller analysis about whether what has happened in Scotland and what we have permitted to occur has indeed as is oft commented upon been on the one hand a ‘human rights scandal’ or on the other hand been the necessary yet distressing proportionate balancing of protection with freedom. Here I want to reflect on one of the major challenges both in our response to the Coronavirus to date but also inevitably into the future – the role of infection prevention and control (IPC). In doing so I am drawing on thoughts from a talk to the New York Academy of Medicine a few weeks ago in which I took part in an international exploration of the role of IPC in care homes across the globe. I am very grateful to colleagues for insight and conversation. In that conference I called for the urgent articulation of a human rights-based approach to IPC. I think such a development would be an appropriate legacy as together as societies we seek to live in the face of pandemics.

My starting point in this reflection is the personal supposition that human rights are essentially first and foremost about relationship and only secondly about legal recourse. The development of the UN Declaration of Human Rights was an attempt to set right the perversity of human interaction and exchange which had so corrupted and destroyed millions of lives. The inability to be truly human and to treat the ‘other’ with dignity and respect had cruelly overshadowed the world, leaving lives shattered and annihilated in the horrors of the Second World War. Those who gathered together in New York in 1948 sought to state in ink and on paper a framework for relatedness and co-responsibility which would act as a mirror for a world seeking to grow again and heal itself after the rotten harvest of hate reaped in the years before. Their aim was to centre humanity upon principles of mutual regard, respect, togetherness, solidarity and peace. But critically, as Roosevelt opined, these principles had to be and were to become rooted in the realities of normal encounter and community. They were not the statements of a paper treaty, inscribed on a parchment scroll unopened and unchanged – they were and are a living, breathing and vibrant document by which the world would be changed into togetherness, and in response to such change the Declaration would itself seek to grow and mature.

So, against this premise that human rights are about relationship, the restoration of co-responsibility and mutual regard, what about the way in which infection prevention and control has worked out during the pandemic in care homes?

I want to use the international framework PANEL to pose some questions and raise some issues. PANEL stands for participation, accountability, non-discrimination, empowerment and legality.

Participation.

The embedding of a human rights-based approach to any scenario or situation requires participation and involvement of those most affected either by a practice or by decisions being made. There is I believe a very real sense that we have as a society failed to engage with, include and involve those who have been most affected by decisions to lockdown, to limit, constrain and exclude. ‘We’, whoever that ‘we’ have been, have done to and decided for.

Now I am the first to accept that in a crisis, when the ship is about to hit the rocks, then you need decisive action not debate to steer away from the danger. So, in the initial stages of the pandemic decisions could not be as participative and inclusive as they would ordinarily be. It was entirely proportionate and reasonable, in order to achieve the legitimate aim of immediate protection and safety, to literally save lives, to take measures without consultation and engagement. But… there comes a time when the prevention of infection and the control of it by actions which exclude and potentially cause more harm, necessitate not just compliance but owned acceptance and consensual agreement. There comes a time when the autonomy and rights of individuals, whether residents or family members, mean that they require to have their voice heard and their words listened to. We have, I would contend, failed to adequately hear and listen to the voice of individuals who have been residents in our care homes. Now I am not talking about direct care and support because staff and others have continually engaged and involved residents. What I do mean is the extent to which decisions have been taken, suppositions made, and positions adopted  without the direct consent and involvement of people most affected. Acceptable initially, but increasingly indefensible as time has progressed and most certainly inexcusable nine months on. This relates not just to general guidance around visiting and exclusion, but also around self-isolation, encounter and interaction in a care home, around the ability of ‘free’ citizens with capacity to leave a building and their right to engage as equal citizens in normal activity and as part of wider community.

In summary, infection prevention and control measures have at times not been rooted in the human rights principle of participation, involvement, agreement and consent.

Accountability.

The second element of PANEL details that in any human rights practice there must be clear lines of accountability and responsibility. At essence when restrictions have had to be enacted there must be a mechanism to ensure the proportionate and reasonable application of restrictions. I fear at times we have used a sledgehammer to crack a nut. I fear that we have adopted IPC measures suitable and appropriate for an acute hospital setting and have sought to utilise these – with very little adaptation – into an environment which is a home. Care homes are not institutional settings but environments where there is group living and exchange, interaction and neighbourliness.

Another aspect of accountability must also surely relate to the degree to which scrutiny and inspection is used to assess and protect the human rights of any individual in any context. I seriously question whether scrutiny has achieved this outcome. Scrutiny in human rights terms involves a monitoring to ensure that the rights of citizens are protected even in instances where the State decrees an intervention is appropriate and proportionate. I think we need to have a serious debate about the extent to which the curtailment of individual human rights in the name of infection, prevention and control and to enable the safeguarding of the many has been accountable to the legalities of our human rights frameworks. Criticaly there is a clear necessity for independence in advocacy and voice where it is felt that the rights of individuals have not been given due accord.

Non-discrimination and Equality

This PANEL principle states that all forms of discrimination must be prohibited, prevented and eliminated. It further states that people who face the biggest barriers to realising their rights should be prioritised. I do wonder if our response to the challenges of aged care facilities across the world, not just in Scotland, has been influenced by widespread ageism and discrimination. Have we treated older person care and support in the way in which we would have others – in terms of prioritisation, resource, support and focus – I fear we have not. Have we sufficiently adapted measures and interventions to take account of the peculiar needs, for instance of those living with dementia and cognitive decline? You only need to speak to a care worker to learn just how impossible it is to encourage compliance around isolating in a room from someone who has no memory of instruction or understanding of their actions. Have we really understood the fear and hidden silence of those whose lives of encounter and banter were marshalled overnight into detachment and distance, where touch was removed, and contact curtailed? These are profound human rights questions which go to the heart of not just what is desirable in our infection prevention practices but what is morally and ethically acceptable and achievable without the limitation of autonomy and individual rights.

Empowerment

At the heart of this is the sense that everyone should understand their human rights, and be fully supported to take part in developing practices which affect their lives. I have stated above the absence of voice from those most affected. But when I look around at the global response to aged care, I see little evidence that internationally we have enabled professionals in care to be the leaders and to act autonomously in infection prevention and control. Rather the international commentary and contention has been that an overly clinical approach with all its assumptions has been utilised in aged care settings and that we have failed to adapt measures around IPC, resulting in a lack of fit for context and serving to dis-empower and negate the professionalism of care staff.

Legality

Lastly on this day especially I have to pose the question about the degree to which our international use of IPC measures has indeed been legitimate, proportionate and even legal in accordance with national and international frameworks and treaties.

Article 2 of the European Convention of Human Rights seeks to protect life – but it also acknowledges that the preservation of life is not the same as existence and the continuation of days. Have we protected life at all costs failing to respect individual wishes (even in a collective and group living environment)? I will never forget the email I received from a man of 104 who simply wanted to have a few hours with his children rather than months of isolation.  Article 3 clearly states that to treat individuals in a manner that strips away individuality, that damages their wellbeing both physical and psychological can be deemed to be equivalent to treatment which is degrading and demeaning of humanity . But perhaps most explicitly have we adhered to the requirements of Article 8?  Have we enabled people to exercise family life, to maintain and enhance psychological and physical integrity?

For all the legal requirements preventing human rights abuse is only one step towards the  fulfilment and realisation of these rights. There must also be active agency which results in deliberate intervention and action to promote and enhance these self-same rights. It is not enough just not to do; we are compelled positively to act.

I know I have posed more questions than offered answers. I know there will be some who read this as a treatise in simplicity, but on this Human Rights Day I would contend that it has never been more urgent than it is now to develop and articulate a response to infection which balances the rights of individuals better than what we have seen and still see in many places across the world. I would suggest it is a critical human rights question of our time.

There is no smaller place, no place closer to home, than the places and rooms, than the care homes and aged care facilities of our communities. We owe it to our better selves to ensure that we develop a more proportionate, risk-balanced, rights-respecting global approach to infection prevention and control. Not one that ignores the science but moulds that science to the realities of living and community; that grounds measures of intervention and restriction in a way that upholds and enhances the dignity, autonomy and human rights of all affected.

“Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.”

 

Donald Macaskill

Homecare Day 20 – Workforce Blog

I can hardly believe that we are back at homecare day and that it has been a year since I last wrote about my love of homecare and what it had meant to me personally as a homecare manager responsible for delivering services across Glasgow.

Sitting writing about and celebrating all that is good and amazing about homecare in December 2019, I would never have imagined that COVID was about to hit and bring with it the many changes we have seen since March this year.

As this is a celebration piece I am not going to dwell on the many ongoing challenges the workforce are currently experiencing as a result of COVID-19, but instead once more highlight again the wonderful work that homecare staff continue to deliver all year round.  This year more than any it is important to thank and celebrate these social care workers who despite the challenge, despite the difficulty of the work involved and despite the risk get up each morning and deliver their truly life changing work.  Care workers who support people to stay at home with their loved ones, to live in their own communities and empower them to live as full a life as possible.  This has been achieved with care and support from workers who encourage them each and every day and at a time when staff members are also struggling with the impact of COVID-19.

I would like to celebrate the resilience of our social care workforce who have said very little in the way of complaint but have risen to the challenge presented and continued to provide homecare services.  The staff who have voluntarily gone and have been tested for COVID-19 on a regular basis for their piece of mind and to ensure they are not passing on the infection to others and those they support.  A workforce whose absence levels dropped from the beginning of the pandemic and who have worked steadily to ensure that vitally important care is delivered to those most vulnerable in our communities.

I have been told directly by homecare managers how impressed they have been to witness their staffing teams deliver care services day after day while managing their own fears and concerns during this pandemic.  Care managers are the biggest champions of their own staff and you can hear the pride they feel as they speak of their workers and what they are managing to achieve against all odds.  I say against all odds as this is a sector that was extremely fragile before COVID-19 due to the sheer nature of their work, what they are asked to do and the little recognition and respect social care staff  generally receive.

Homecare is particularly special to me as I started as a home care worker and found my niche in life with this work.  Building relationships with people and eventually being instrumental in creating their care packages was a privilege.  I witnessed people overcoming huge adversity and some of the worst challenge’s life can throw at you.  Individuals who experienced ill health and accidents that dramatically changed their way of living and quality of life but were supported to regain their independence as much as possible and continue to enjoy the things that made them happy.  When you work in homecare you get to experience the very varied and different ways people choose to live their lives and to be a small part of that at times.  This time of year is historically challenging as staff are keen to have time off to spend with their families however in my experience a balance was always managed to be achieved and staff share many a laugh and festive cheer with those they care for and their family members.

Quite often a Santa hat and bits of tinsel were part of the Christmas care worker uniform (sadly not this year for infection control reasons) and generally people were in great spirits when working together over the holiday period.

COVID-19 has made us all focus on the importance of our relationships with others whether they are with our families, friends, work colleagues and those we meet during our work.  It is no wonder that homecare workers have stepped up and continued to make a huge difference to people by providing their essential care and support and ensuring they remain safe at home as building relationships is a huge part of the work they do.  These meaningful relationships between care workers and those they support are vitally important when providing intimate care and with encouraging and motivating people when they are experiencing difficulties.

Homecare is going to be such an important part of Christmas this year as families may not be as able to travel to each other and spend the same time together that they are used to doing.  This will mean that the homecare worker may be the only person that someone sees, and their support and company is more crucial now than ever.

My one wish at New Year this time around will be to ask again that social care gets the recognition it deserves, that homecare workers and all social care workers will be looked at and treated with the respect they are entitled to.  Home care and support workers will be treated as the highly skilled professionals they are, many with years of vast experience caring for people and their ability to bring that special comfort to those in pain and in need of support.

Merry Christmas to all of you out in our communities working hard, we see and understand what you manage to achieve and will shout about it as loud as we can until it is fully recognised by everyone.

Caroline Deane

Workforce Policy & Practice Lead

 

Homecare Day 20 – National Director Blog

Homecare Day is a place for celebration and we need look no further than the incredible stories from our social care workforce in pandemic response.

I heard a fitting metaphor for the current experience as being referred to as a natural disaster. After an earthquake or hurricane, you can’t instantly build new and better, you must first clear away the rubble and heal the cracks.

This is a story told by the voices of women and men I have spoken to over these last months of pandemic response.

I want you to take a deep breath before you read this, use their words to paint the picture. This is the story of the forgotten social care workforce.

“I’m worried I am spreading the virus, how would I know” “I don’t think you get tested unless you’re a celebrity”

“Other healthcare professionals look like stormtroopers I’m struggling to get paper masks, it’s like we’re not important”

“We’re only getting paid per planned for the first 24 hrs, how do I support and keep my staff? Their hours are now all over the place”

“Oh yes there is guidance, but it’s everywhere, there is nothing good enough that is specifically for us. If only they asked us”

“I come home from work and my kids run to give me a hug but I have to hold back. I have to strip off, put the clothes in the machine and shower before I can hug them safely. They’re too little to understand. It’s breaks my heart every day”

“I think she would just love to see everyone, she’s been on a downer hasn’t been eating or anything. Today she’s broken down and cried the whole time I’ve been here. How do I leave her like that?”

This is the hidden story of the pain, loss and isolation of an entire workforce, a workforce that must be increasingly recognised for their skills and expertise, for their loyalty and for their humanity.

And all of this sits in a pre -existing landscape of challenge and power imbalance: undermining procurement contracts which hinder fair work practice and restrict innovation. A crowded landscape of data and technology where limited vision and investment on a national scale risks limiting the potential of social care. And, a move away from the preventative model of care and support as we see a rising eligibility criteria and much later access to care and support to a point of crisis.

Many of our workfore have experienced trauma and grief. We hear a lot of conversations about resilience, but that is simply not sustainable. People are exhausted. Personally, and as a sector need to acknowledge our pain, embrace our emotions, support and be supported to work our way through. We need to focus on what we were able to do, how we are able to support each other. That is how we progress, that is how we heal.

Without recognising and challenging this landscape, we will not be able to rebuild.

Yet, in many ways, pandemic response has brought us closer together. With people who access care and support and with our colleagues. But it goes beyond. A rather interesting reflection is that one of the lowest reported challenges reported in the recent CI report on homecare is the relationship between providers and HSCPS. Indeed in some parts of Scotland, there has been a real feeling that integration has extended to include the totality of the social care sector.

The theory of Disruptive innovation “Creates a new market and value network which overtakes the existing market… It is where innovation and a change in value-base disrupts complex systems.”[1] We saw this for instance with the invention of the Model T Ford motorcar and the home computer.

It is not so much that our vision is different, but that pandemic response has been the opportunity to see that shift from the fringes to the mainstream. A glimmer of understanding of the critical role of social care. Where choice and control is available to everyone as it should be in the human rights based delivery model that we aspire to.

Social care is our route to staying in our communities, but it also supports and enables us to connect and if not bound by time and task can be used to introduce many kinds of support which will reduce decline, enabling us to contribute to and be part of our societies for longer.

We thought that the Self-Directed Support Act and the Integration Act would pave the way for new models of care, but all along there has been missing a shared vision and focus and understanding of the potential of the sector as a whole. We have, consciously or not, been constrained by traditional boundaries and a habit of thinking that improvement means putting more things in place instead of thinking about what needs to be removed.

The impact of coronavirus has been to reduce our focus solely on a combined effort towards pandemic response. In some places, that has cut through silos and issues of power to build relationships. An experience which offers the best use of the resources that we have available to us and looks to implement them in the context of human rights. It is now critical to harness that before we remember how things used to be:

  • We have seen partner organisations come together to support each other in infection prevention control and in training provision and access to staffing.
  • Market disrupting activities such as consortium purchasing to tackle the over inflated costs of PPE, including working with local distilleries across Scotland to divert production from (sorry folks), gin, to hand sanitizer and tackling HMRC to downgrade the tax to make this viable.
  • The development of and the introduction of Near Me to allow for remote consultation with healthcare professionals.
  • Many other technological advancements in terms of connectivity such as an arts programme produced and developed by organisations such as luminate.
  • Working with Glasgow university on a project to use mobile of 5G vans to allow for training in PPE using virtual reality.
  • And critically, grown out of a highlighted understanding that data is a weakness across the sector, different ways of collecting and sharing data, alongside a desire to trial a shift towards citizen owned data.

I spoke earlier about trauma and how to navigate through and we can apply the same method here. Now is our opportunity to make real and substantial change. We must all take some time to reflect not only on our roles in pandemic response, but also what helped to get us through. Write it down, keep it with you to draw on that strength going forward. Celebrate your tenacity, strength and dedication.

But I would also ask you to apply this process across the health and social care sector, write down what has worked for you personally, for your organisation and for the system. Talk about that, share it, tweet it, raise it as part of homecare celebration day. We have learned so much in 2020 yet there is still more to learn. Disruptive innovation gives our workforce the opportunity to take us there.

 

Karen Hedge

National Director, Scottish Care


References

[1] https://en.wikipedia.org/wiki/Disruptive_innovation

News release: Homecare Day 2020 – 9 December

The contribution of homecare support is to be celebrated across the UK

Wednesday 9 December will see an online campaign raising awareness of the crucial role of care at home and housing support services in supporting older and vulnerable citizens across the UK.

Home Care Day aims to celebrate what home care services do, the people that work in them and the achievements of those supported at home. The day also seeks to facilitate wider discussions on the future of home care and what services should look like.

The day is supported by two leading care bodies, Scottish Care and United Kingdom Homecare Association (UKHCA), who are calling for organisations and individuals across the UK to join them on social media in raising the profile and value of home care support using the hashtag #homecareday.

Dr Donald Macaskill, CEO of Scottish Care, said:

“Throughout the pandemic thousands of women and men have left their homes every dayto go out and care for and support others. They are the heart of our homecare sector and we all owe them a debt of gratitude. This day is an opportunity to recognise their dedication and professionalism every day of the week, regardless of weather, risk or fear. Homecareservices allow people to remain independent for as long as possible in their own home. This years’ theme highlights the way that through such professional work homecare helps to foster and create real community. The homecare sector shows us caring and compassion at its best. It is the responsibility of all of us from government down to individual to recognise this contribution and to adequately resource and reward this dedication.”

Jane Townson, CEO of UKHCA, added:  

“Homecare workers have demonstrated outstanding care, kindness and dedication throughout the COVID-19 pandemic. Thanks to their hard work, homecare has proved itself a relatively safe option. Many people have been supported to live well at home which has given families peace of mind when they were restricted from visiting themselves. Investing in homecare improves lives and saves money for the health and care system. We will continue to press governments in all of the UK administrations to recognise the value of homecare to society, including its direct and indirect contributions to the economy, and fund it adequately.”  

Legal Resources Digital Panel Webinar – 11 Dec

We are hosting a Legal Resources Digital Panel Webinar on Friday 11 December at 11:30 AM – 12:45 PM. This session will be hosted by Dr Donald Macaskill, who will be joined by our Legal Resources Select Group which includes five of the very best law firms in Scotland chosen for their experience and understanding of the social care sector).

We have gathered all your feedback from our recent Legal Survey and shared with the Scottish Care Legal Select group. They will bring their best and brightest specialists on the areas that members have highlighted to the Legal Panel. Each of the five law firms will have a specialist to speak to your concerns based on the results of this survey. They will also answer your legal questions in real-time in the webinar.

For more information on the Scottish Care Legal Resources Select Group please go to our website: https://scottishcare.org/legal-resources-select/  

The surgery is strictly for members only, details to join can be found on the Members Area of this website.

If you have any issues accessing the Members Area or this surgery session, please contact [email protected].

Care as community – a tale of Springsteen and homecare.

Over the last few days, I have spent some time reflecting and preparing for Homecare Day which will take place this coming Wednesday 9 December. The theme of the day is ‘Care Community’ and all that homecare, and its workforce does to enable people to live and thrive, to nourish and nurture community in their own space and place.

This online and virtual day is organised by Scottish Care and the United Kingdom Homecare Association (UKHCA) and it aims to raise the profile of care at home and housing support services across the United Kingdom.

The choice of ‘community’ as the theme is a deliberate one, created in order to focus on how homecare services are essential parts of the health and social care community, as well as local communities in Scotland and further afield. Homecare services and staff provide high quality, person-centred care to support the health, wellbeing and independence of people in their own homes, with staff demonstrating skill commitment and compassion every day.

As part of my reflection, I have been pondering about the nature of community. It’s a concept which means many things to many people and one that has oft been misused for various political and philosophical ends.

Regular readers of this blog will know that I have a very strong musical weak spot – Bruce Springsteen – so the arrival of anything new by the Boss immediately gets my attention. The busyness of the last few weeks has meant that I have not had the time to do my usual with his latest release – the brilliant ‘Letter to You’. My normal behaviour would be to obsessively devour every track on a constant repeat –  but in light of the positivity of the last few days I have managed a few listens!

Springsteen has many consistent and constant themes in his music, but one of them is undoubtedly that of ‘community’. There has even been an academic paper written on the subject!  He has a distinctive although not always consistent view of community in his songs. Its not a word he uses a lot, but he sings a lot about the essence of community.

Despite my personal ambivalence about the way many commentators use the concept of community, Springsteen, for me at least gets to the heart of what community is and the tensions within the idea. At times, I fear, we can have an overly romantic view of community, a yearning for some lost essence and idyll. Folks reflect on the lost communality of days gone by when neighbour knew neighbour, when mutual regard was common practice, when you could leave your door open in safety in the busiest street. We paint pictures of connection, purpose, and unity. But as we all know life was never as bucolic as the flickering images of our memory. There is equal truth in the desire to get away, to form individual identity, to make a mark and be someone beyond the reputation of upbringing, the restrictions of association, the crowding bonds of family, birthplace and reputation.

Nevertheless, there is undeniably substance to the accusation that increases in societal  loneliness, a growth in mental health distress, a fragmentation of connection and purpose have in some part to do with a loss of connection, co-responsibility and at their heart a loss of community.

Springsteen in some of his classic songs describes this tension, both a yearning for and a need to escape the ‘battered blue collar communities of post-industrial America.’ The world of his memory is both one of claustrophobic conditioning and yet of an urgent desire to belong, to return and to be assured. For those who might want to go and listen – compare tracks on one album alone as reflecting these tensions. Listen to The River album and the three tracks “The Ties That Bind”,  “Two Hearts” and “Out in the Street”  and you can get a flavour of the inner tension of community.

“I tear on the leash
That keeps me contained and controlled
Let me go
I want to break free
And bite my way out of this hole

One last hope
To rise and break away
Above the faded line
Way beyond the ties that bind.”

Community is at the heart of homecare. The work of those who every day of the week get up and go out into our streets and homes, is about enabling another to flourish and thrive. These women and men, who not least through Covid19, have despite the challenges, are the heart of a sector so often undervalued and so frequently unappreciated. The shameful reality of basic terms and conditions, of a lack of resourcing and funding of worker and care organisation alike is an indictment against all our society. We talk the talk of hospitality and care as a society, but we fail to walk the walk in being willing to pay and sacrifice to enable those realities to come true.

Community if it is to be anything more than the lyrics of a song, or the echo chamber of idealism, needs to be paid for and fought for. The true nature of community is a solidarity that gives space, a togetherness which does not suffocate but which liberates the individual, it is a collectivism which has a common purpose broad in its reach and extensive in its arm; it is not the stuff of romantic image or syrupy memory, but rooted and raw, real and vibrant … it is what enables the beating heart to become the breath of belonging.

In essence community is the work of homecare. To be independent when you are afflicted by decline or constrained by disability requires support and care. It does not need you to be ‘looked after’ as if you have no capacity, individuality or voice. This is what homecare does day in and day out. It liberates life to belong, it enables individuals to be independent rather than dependent on others. This is why homecare should never be the afterthought when costing and commissioning social care, it is the essence of who we are as a society. Homecare embodies and emboldens human community.

The reason for that is that behind all the romantic idylls of community is the truth that we become better and more human when we replace an individualistic narcissism with the desire to be there for others, to bind ourselves into a regard for the stranger, and to commit ourselves to forming real belonging and relatedness. Care creates community.

So, it is a shameful indictment on our society and those of us who call ourselves citizens that we even in the shadow of a pandemic continue to undervalue care at home and housing support services. Because if care is the best of us, then the lack of resourcing, the marginalising of the workforce and their concerns, the lack of prioritisation for its contribution should be to our embarrassment.

This last week I have answered emails from managers and staff who simply cannot understand why they are still not being tested for Covid19 on a regular basis – months after I wrote and spoke about the need for this. I’ve received emails from those at the breaking point of exhaustion and fatigue because of the demands of wearing PPE and the continual stress and fear they are living with in their daily work. But perhaps most shameful of all I have received messages from organisations saying that they are being asked to ‘pull lunch visits’  in order to save on the packages of care for the most vulnerable. Just picture it – a 15-minute visit , during which as a worker you have safely to don and doff your PPE, then get someone up for the day, deliver personal care and attention, make sure they have their breakfast and have taken their medicine, to do all this with dignity and respect, care and compassion – then someone says to you – oh and make them a sandwich rather than go in at lunchtime. And all in 15 minutes because that’s all that the Council can or will pay for.

This is where all this talk of community sticks in the craw. We do not create community and real connection by talking (or singing) about it – we create it through our actions, the way we spend our money as a society, the way we make our decisions, and prioritise (or not) those who need care and support. On that front, pandemic Scotland is failing and falling well short.

The state of homecare is rotten to the core, it is a stench not of the making of worker or care provider, of those supported and their carers, but of those who cost and price, who save and contract, who electronically monitor and fiscally frown. We simply have to do better and to reform with a sense of urgency.

Care community is the theme for Homecare Day, and I hope you will join the social media message and conversation which will be happening on Wednesday. But in doing so I hope you will agree to work for a change that truly ensures ‘community’ is at the heart of all that we seek to do in the coming weeks and months. They will be a time requiring us all to lean upon each other, to have regard for neighbour and to listen to the stranger; they will require the amazing dedication and professionalism of the women and men who work in homecare, care home, hospital and many more places. Community never just happens by accident ; it is always an intentional act from an instinct of regard and mutuality. In these days more than any other it needs nourished and protected so that it might flourish into a spring of support.

I leave you with some words from a favourite Bruce Springsteen track. They speak of that sense that true community, true love, means no one is left behind, no one walks alone, that we have to have regard to the pace of others, that it is in our leaning on one another that we discover a belonging, a togetherness, a community beyond cost.

“ We said we’d walk together baby come what may
That come the twilight should we lose our way
If as we’re walking a hand should slip free
I’ll wait for you
And should I fall behind
Wait for me…

Now everyone dreams of love lasting and true
Oh, but you and I know what this world can do
So let’s make our steps clear that the other may see
I’ll wait for you
And if I should fall behind
Wait for me… “

Donald Macaskill

Please join Homecare Day on Wednesday 9th and for more details see https://scottishcare.org/homecare-day-2020-9-december/

 

#homecareday

Near Me Reference Group

IRISS would like to invite people who access social services and who may have also participated in a Near Me call to join a reference group. The group will contribute to the generation of evidence, learning and guidance produced by this project, along with an invitation to join in with the Near Me Learning Network.

The reference group will run from December to March 2021, involving about two hours of time a month to meet online, read and comment on project documents, and share views on using Near Me as a platform.https://www.iriss.org.uk/news/news/2020/11/19/join-near-me-reference-group

If you are interested in joining the group, please email Louise Bowen ([email protected]) by Monday, 7 December.

The Kindness line: a reflection for St Andrews Day

I was struck by a beautiful image in the last few days. It is the postcard at the bottom of this blog. Created by Edinburgh-based illustrator Emily Hogarth it is a core part of the One Million Words of Kindness campaign which was launched in the last few days by the Scottish Government.

It is a campaign which is asking people across the country to recognise the value of connecting with and helping others by reaching out to friends, family, neighbours and communities near and far in a bid to generate One Million Words of Kindness by Monday 30 November to mark St Andrew’s Day.

Apparently more than 100,000 free postcards which feature the beautiful image have been sent to 104 Lidl stores across Scotland for shoppers to pick up and send messages of thanks, hope or a simple hello to mark Scotland’s national day. You can download and share online from the Scottish Government’s website: www.onescotland.org/st-andrews-day

St Andrews Day is of course our national day, and it is entirely apt in a year of challenge and hurt that we should be focussing on kindness.

I have to confess that I’ve had to delve into my books to try and find out a little bit more about Andrew such is the rustiness of my memory these days. Once I started reading, images of Andrew the fisherman, one of the first followers of Christ, came rushing back. They offered me a man of dynamic determination, practical matter of factness, and of someone strongly associated with place and people, with kith and kin.

Apparently, in Scotland we have been celebrating this man from Palestine since the 11th century. From the signing of the Declaration of Arbroath when he officially became Scotland’s patron saint through to our national flag, the St Andrew’s Cross, Andrew has been prominent.  Even the ancient town of St Andrews was named due to its claim to being the final resting place of St Andrew – or at least one of them! We know surprisingly little about St Andrew but one of the characteristics he seems to possess both in legend and through tradition is that of kindness.

The last year has seen some astonishing acts of generosity and kindness. People have walked the extra mile in their compassion and care, in supporting neighbour and stranger. Folks have noticeably been there for one another and the world has felt for many a little less lonely and a bit more connected.

But at the same time as we all know the pain and hardness of lockdown has caused ache and hurt for so many, with thousands struggling with their mental health and wellbeing, many feeling isolated and lonely, cut off and despairing. We know too the tragic loss that this virus has wrought in care home and community, in family and hospital. Lives have and still are being destroyed and ruined.

So, on St Andrews Day I will indeed think of the words of kindness that I have heard in the weeks and months gone by. I will think of the words spoken from pain and loss but which still thanked staff who were there to hold the hands of a dying husband; I will think of the words of kindness from shop staff who despite their own fear brought a laugh and smile to those confused by a new way of shopping; I will ponder the words of generosity from those who helped dig the garden of a disabled neighbour; the word of encouragement from the teacher to a student fearing a lost career and the word of assurance from the carer to a person who had lost touch with friends after feeling shackled up in their own house.

I will also think of the words of kindness that we need to say to one another and hear from others in the days and weeks ahead. These will be challenging times and whilst hope is on the horizon there is a hill to climb before we achieve that summit. So, we need to be less judgemental and more forgiving, we need to discover again the solidarity of the spring in the darkness of December. We need to hear these words of kindness and need to offer them also.

One of my favourite modern poets is Scotland’s Makar, Jackie Kay, who wrote a stunning poem, ‘Essential’, at the height of the pandemic which captured the acts of kindness which we were seeing all around. In an interview with the BBC, she reflected on why she wrote the poem. I hope that in the weeks before and after Christmas we can all of us find the kindness line.. that even in absence we can sense the links of our family under the same sky,  that we will reach out and touch our belonging to one another as the pulse of our togetherness, that we can bind ourselves into one another like yarn around the wheel of our days, and that we can be the strength underpinning one another should we stumble on the path to our hope. Not just for St Andrews Day but that for many months to come we can make our journey into the future by sharing One Million Words of Kindness.

Jackie Kay said to the BBC: (see https://www.bbc.co.uk/news/uk-scotland-52310996)

“In these harrowing times it’s been really heartening to see how much people have actually come together, how much kindness there’s been out there and how dependent we are on all essential workers.

“Not just people in the NHS and carers who have done an amazing job. The child care workers, the post men and women, the delivery workers, the people in the food supply chain, the people stacking the supermarket shelves.

“We’ve become as a society and as a world even more aware and are more appreciative of every single thing that people do.”

 Essential

 Up, doon, the length of our land –

Aberfeldy, Ardnamurchan –

There’s uplift, sharing; pass the baton!

A frontline forming, hand to fierce hand.

Shopfront workers, doon the aisle;

New-era queues metres apart.

The chemist’s prescription warms the heart.

Delivery folk vanish, ghost a smile.

Volunteers at the local food bank…

Shy half-moon in a clear Scots’ sky.

We leave with tins, groceries, goodbyes…

Clap in the gloaming when we say our Thanks.

And the sky greets with stars

And the bold birds sing

As we clink in our links in the Kindness line;

Holding absent hands for Auld Lang Syne.

 

 

Donald Macaskill

Homecare Day 2020 – 9 December

This year’s Homecare Day will take place on Wednesday 9 December, organised by Scottish Care and the United Kingdom Homecare Association (UKHCA). Homecare Day is a largely online event which aims to raise the profile of the care at home and housing support services across the United Kingdom.

The theme of the day is Care Community, to highlight how homecare services are essential parts of the health and social care community, as well as local communities in Scotland and further afield. Homecare services and staff provide high quality, person-centred care to support the health, wellbeing and independence of people in their own homes, with staff demonstrating skill commitment and compassion every day.

Homecare services and staff have shown extraordinary resilience and teamwork during the Covid-19 pandemic. This makes Homecare Day an important celebratory event now more than ever. It allows us to recognise the dedication and professionalism of the homecare workforce and offers a platform to share remarkable stories from the care at home and housing support sector.

We are inviting members, partners organisations, workers and individuals to get involved by sharing any positive stories they may have about the homecare sector. We are also encouraging homecare providers to mark the day by organising a virtual activity which people, families and local communities can participate in.

People can get involved by sharing content on social media using the hashtag #homecareday.

There will also be a Twitter discussion between 12:00 – 13:00 on the day, led by Scottish Care and UKHCA with questions centred around Care Community.

Please help us to spread the word and encourage as many people as possible to take part to raise the profile of and thank the homecare sector.

We hope that you can join us for this event, and we look forward to reading all the stories and celebrating Homecare Day 2020.