It is time for the frail to weather well:  a call for positivity in ageing.

Three weeks ago, I wrote a blog on the nature of vulnerability – both challenging the misuse of the word and also suggesting the need to develop a more positive view of vulnerability. With a degree of synchronicity and similitude, I have been having comparative conversations with clinicians and colleagues in the last few weeks over the concept of frailty.

Frailty has been a key concern for the care sector for many years. Over that time there has been considerable discussion about its definition, what it means both physiologically and psychologically and how relevant it was as a descriptor in the support and care of individuals.  I was therefore delighted to read a piece in the last few weeks by the respected clinician David Oliver which confirmed both my own unease with the term and why it is important that we reconsider our views of frailty.

In that paper Oliver reminds us of the uncomfortable debate in spring 2020 in the midst of the first Covid wave, on the use of the Clinical Frailty Scale (CFS) as a tool ‘to triage, target, and potentially ration scarce intensive and high dependency care.’ With many others I was critical at the time of the use of such a tool as a proxy for individual and person-led clinical decisions and the dangers of age discrimination which might result.

It is important in any debate on frailty to recognise that it has positive dimensions to its usage. As Oliver states:

‘in over 75s registered with NHS practices, severe frailty as defined by an electronic frailty index is associated with far higher risk of hospital admission, death, or care home admission in the following 12 months. People with frailty have less functional reserve and are far more likely (with or without covid-19) to present with immobility, falls, confusion, or generalised failure to thrive, or to get stranded in hospital or experience acute loss of function. Those in care homes, or who have dementia or are receiving home care or post-acute rehabilitation, will often be frailer and older.’

As a general term, therefore, there are clear benefits in being able to use models which can be early predictors of the benefits of additional support and intervention. As a preventative assessment measure such frailty tools are invaluable in achieving both better outcomes for the individual person and in reducing the economic health costs for the rest of society brought about by unnecessary hospital admission.

But the term is not neutral and can be used sometimes with inconsistency and contradiction. Indeed frailty is a term and concept which as researchers like Archibald et al have shown is not widely understood by the general population and is negatively viewed as a descriptor by older people themselves. They argue in their research that the use of the term may actually serve to harm key public health messaging.

A critical dimension of the care and support of older people is to enable individuals to maximise independence either in their own home, in the community or in a care home. Most associations on frailty relate to a loss of independence predominantly due to challenges with mobility and a loss of control over one’s environment. Frailty clearly both at the popular level and clinically carries with it negative connotations.

There are a couple of points in this extensive debate which I want briefly to make in this blog.

The first is that at times there can be too great a stress upon frailty seen as physiological decline without a resultant emphasis upon psychological, emotional and environmental changes and challenges, and

Secondly, I wonder if it is time to collectively replace the concept of frailty with a more positive modelling based on how we should be enabled and assessed as ‘ageing well’?

Turning to the first issue. There is now a wide professional acceptance that frailty is not solely about physical decline, either of mobility or other functions. There is an appreciation that we need to have and adopt a holistic understanding of frailty. An individual’s circumstances and the constraints on their independence are a product of many factors, including their physical environment, their psychological well-being, the extent and degree of their relationships and social connection. Frailty therefore cannot simply be a score on a chart to take account of changes in someone’s physical health.

But when I speak to practitioners and to those older persons who access health and care services, such a holistic understanding of frailty seems frustratingly absent and missing. They complain about the dominant emphasis and focus on their physical health and a limited or absent appreciation of their psychological, social and relational well-being.

From my own experience I can remember my great aunt who was an astonishing woman still writing articles and letters when she was 94. She had a fall which resulted in a hip fracture and underwent very successful surgery. Her rehabilitation focussed on her physical return to health. The stress was upon addressing her frailty. But over a short period, she declined sharply, and it wasn’t the physiological decline – as I said surgery went well and she responded astonishingly well – but it was the impact psychologically that it had upon her and her confidence which those around her recognised as the major factor in her change. Yet nobody attended to that because all they could see was the physical decline and frailty and not the change in the person.

The person who has had a hip fracture at home because of isolation and loneliness and lack of social care support and ends up going into an acute hospital for a replacement – their intensive rehabilitation back in the community isn’t – should not be – simply about enabling them to get back on their feet, to mobilise, to be able to ‘look after themselves again’. If that is all we’re doing, we’re only attending to the physiological functional dis-ease. We’re not attending to that connectedness of the person who needs to be able to maintain relationship with neighbours and with their community, and nor are we attending to their mental health needs because that certainly, in my experience of frailty and falls, is what we often forget because we’re so focused on the physiological. We know about but often fail to respond to the sheer mental distress, trauma and psychological fatigue which occurs when somebody has a major fracture whether it happens in their 60s or in their 90s.

I think we are some considerable distance from a situation where there is a robust multi-disciplinary team awareness across health and social care of the multiple factors that contribute to the decline and change in the health story of an older individual.

Another really important recent study from Coker et al makes the same point of a gap between awareness of the need for a holistic understanding of frailty and what actually happens in practice. Summarising their research study, they state:

‘There was a shared narrative among participants that frailty is an umbrella term that encompasses interacting physical, mental health and psychological, social, environmental, and economic factors. However, various specialities emphasised the role of specific facets of the frailty umbrella. The assessment and management of frailty was said to require a holistic approach facilitated by interdisciplinary working. Participants voiced a need for interdisciplinary training on frailty, and frailty tools that facilitate peer-learning, a shared understanding of frailty, and consistent assessment of frailty within and across specialities.’

I could not agree more about the necessity to move beyond biomedical descriptions of frailty and to support older people in a more holistic manner utilising the professional skills of all social care and health care staff.

The second issue I raised above was the suggestion that perhaps we need to move beyond frailty descriptors and to develop a more positive modelling based on how we should be enabled and assessed as ‘ageing well’

The language we use in life and in our descriptions of how we value living are critical and there can be no doubt that concepts of frailty are negative, limiting and associated with decline and deterioration. Whilst ageing does indeed for all result in change and alteration and for some that includes elements of physical or psychological change, it does not always need to be perceived in a negative and diminishing manner. Why do we see such change as negative? Is it because our societal ideal is still a concept of humanity rooted in a cult of physical prowess, our vision of humanity one of the ‘whole and able’, and that inevitably ageing, and the change that accompanies it, is seen through a negative lens?

I think the continual impugning of negative association with frailty is preventing us from being positive about ageing. If frailty impacts almost inevitably for those who age then why should we see it as decline and deficit rather than as natural and normal, to be lived through rather than avoided?

As more and more of us live for longer and longer periods of time and increasingly with healthier older age, we really need to grow up in our attitudes about age and the extent to which we either on the one hand dismiss the benefits of older age or elevate them to a false authority. Neither is entirely accurate nor helpful.

Instead, we should, I would contend, be seeking to adopt a positive view of ageing and a model of care and support, both healthcare and social care support, which is oriented not on a negative paradigm such as frailty but on the positivity of ageing. This is after all the World Health Organisation’s Decade of Positive Ageing!

Frailty is the consequence of ageing for many of us and it will happen both physically and psychologically at different stages for different people. We have to own it and see it as one of the glorious realities of us all getting old which for many of our forebears was not a possibility.

Yet in descriptions of frailty and ageing the norm is on too many occasions a limited clinical view. This is the description of ageing I came across recently – it described it as  ‘characterised by a complex and intraindividual process associated with nine major cellular and molecular hallmarks, namely, genomic instability, telomere attrition, epigenetic alterations, a loss of proteostasis, deregulated nutrient sensing, mitochondrial dysfunction, cellular senescence, stem cell exhaustion.’ Dictionaries available online!

To age has to be seen as the flourishing of our lives, despite the challenge of the passing years. So, it is time both to broaden our vision of ageing well and to re-consider whether frailty as a concept should be replaced by ageing. Or perhaps weathering?

The late Whithorn born poet Alastair Reid sums the changes brought about by ageing in a manner that for me captures its essence – I would rather weather with the time of age than decline on a clinical frailty scale any day!

Weathering.

I am old enough now for a tree
once planted, knee high, to have grown to be
twenty times me,

and to have seen babies marry, and heroes grow deaf –
but that’s enough meaning-of-life.
It’s living through time we ought to be connoisseurs of.

From wearing a face all this time, I am made aware
of the maps faces are, of the inside wear and tear.
I take to faces that have come far.

In my father’s carved face, the bright eye
He sometimes would look out of, seeing a long way
through all the tree-rings of his history.

I am awed by how things weather: an oak mantel
in the house in Spain, fingered to a sheen,
the marks of hands leaned into the lintel,

the tokens in the drawer I sometimes touch –
a crystal lived-in on a trip, the watch
my father’s wrist wore to a thin gold sandwich.

It is an equilibrium
which breasts the cresting seasons but still stays calm
and keeps warm. It deserves a good name.

Weathering. Patina, gloss and whorl.
The trunk of the almond tree, gnarled but still fruitful.
Weathering is what I would like to do well.

Alastair Reid

from Weathering: Poems and Translations (New York: E.P. Dutton, 1978; Copyright © 1978 by Alastair Reid. All rights reserved)

https://www.scottishpoetrylibrary.org.uk/poem/weathering/

Donald Macaskill

 

This blog will next appear on the 14th August.

More than a service: the essence of social care

Two colleagues, Dr Tara French and Imogen Caird, have this past week published what I consider to be one of the best papers on social care reform in Scotland that I have read for a very long time. ‘Time for Change: Conceptualising a National Care Framework’ is not long but packs a punch of impact and insight and is well worth a read.

One of their central arguments is that rather than so much debate and focus being placed upon a National Care Service what we should be considering, debating and engaging others on is the concept of a National Care Framework. Now lest that seem like a semantic argument they express their point thus:

“The connotation of language has huge implications for how people understand or conceptualise proposed change. The use of the word ‘service’ implies a relationship and role of providing and receiving, perpetuating transaction between people providing and people accessing support. In defining and describing the conceptualisation of a future of social care, there is a need to carefully select language that emphasises the mutual, relational and outcomes-focused mindset to set a precedent for how people may interact with such a concept. As has been reinforced in many policies related to health and social care over the years, there is a need to shift away from transactional models of care and support towards collaborative, relational approaches which are developed in true partnership with the people they are designed to support. From a rights-based perspective, people have a right to be informed about the options and choices they can make with regards to decisions about their own health, social care and wellbeing. “

As well as highlighting the dangers of a casual association with the National ‘Health’ Service Trench and Caird rightly articulate in their paper that we must recognise that the NHS and any potential National Care Service have to be fundamentally different from one another because in essence they are completely unalike. Failure to recognise the distinctiveness of social care as opposed to healthcare lies at the root of many wasted interventions and failed initiatives.

Social care is more than a service – it encapsulates the essence of a person-to-person support and care relationship. When we are thinking of social care, we need to reflect on the core principles and characteristics which have long been recognised and accepted. As Scotland begins in the next few weeks to consider what we want for the future it might be worth spending a brief time reflecting on those principles and characteristics.

In 2014 my own organisation Scottish Care was one of the many signatories to a Statement on the Principles and Values of Self-directed Support. Now I know in some quarters self-directed support has received a negative press and in others is seen as an option rather than as the only route in which social care should be being received in Scotland today. Nevertheless, its underpinning principles which are enshrined in Scottish legislation are, I would suggest, an excellent description of the essence of what social care is and should always be. They describe a relationship rather than a service. Social care support is about creating independence not fostering a dependency on others or upon services. Fostering independence and the strength, and sometimes the courage, that comes with it requires the building of relationships of trust, honesty, authenticity and reciprocity. It demands an exchange which empowers the supported person rather than validates the needs of the care-giver or commissioner of that care support.

The principles of Self-directed Support both as a legislative set of rights and a descriptor of the process of social care delivery underpin such a relational dynamic at the heart of social care support. They are about collaboration, dignity, informed choice, involvement, participation, innovation, responsibility and risk enablement. Any future model or framework of social care in Scotland has to speak to these principles or it has nothing to say of value.

An individual’s right to dignity in the support and care they receive does not just happen by casual circumstance but through deliberate action, planning and support.

The person needs to be able to know what they do not know, to be given information about their rights, about their options and what is available to them, in a way that they understand, at a time that suits best, and with the assistance that they may require. In no small measure the mess of social care delivery in Scotland and the failure of the Self-directed Support Act to date has been as a result of failed information, poor communication and an echoing absence of a commitment to public and national information. To know, to be informed, is to be empowered and we have as a whole community failed to empower those who require to exercise their rights to social care support. We have been silent too long about the individual rights of people in Scotland to access care support, to take control and exercise personal choice.

There is still too much within traditional social care delivery which retains power and control at the point of professional commissioners and providers of that care support. True collaboration and co-production enable people to be involved in a real and meaningful way, not as a tick-box exercise but as a dynamic that alters the relationship between the person receiving support and care and those paying for it and providing it. We have a long way to go in so many parts of Scotland before we achieve such a dynamic.

I hear of too many instances where a professional assumes that they know best, that they know the outcomes an individual wants to achieve for their life. The real radical strength of the SDS Act was its replacement of a system which assessed what you needed with a process that was about helping you to achieve what you required and wanted in order for you to be able to play your full part as a member and citizen of your local community and country. We have failed in large measure to achieve this and to really trust people to know best, to enable and own their own risk taking, and to have control over the activities and supports that would enrich their lives.

All the above-mentioned principles are the lifeblood of any social care framework and should be at the beating heart of any envisaged National Care Service. We have for too long concentrated on the model and not the meaning, focussed on the mechanics and not the rhythm, centred our concern on the sustainability of the system rather than the flourishing of the individual who receives support and care. Until that changes and until a system of governance and professional influence allows it to change then we will never deliver person-led, rights-based, citizen-controlled social care in Scotland.

I was reminded of the essence of care and support this last week when on Care Home Day (last Wednesday) someone sent me Lee McCurley’s poem called ‘Caregiver’

“I am the caregiver, the watcher, the guide
I walk down the hall with you by my side
a smile, a laugh, a hug or embrace
I watch the worry fall away from your face
I am the caregiver, the watcher, the guide
I walk down the hall with you by my side
I am your compass, your shinning north star
I try to remind you of just who you are
I am the caregiver, the watcher, the guide
I walk down the hall with you by my side
Pictures and letters, music of old
keep your mind warm and away from the cold
I am the caregiver, the watcher, the guide
I walk down the hall with you by my side
the routine of night shows no wear and tear
the light of the morning so soon will be here.”

That is a reflective and, in many ways, insightful piece but the relationship of care and support is not a one-way street but a contra flow of compassion; it is not constant giving but a frequent sharing; it is not always doing for but receiving more.

I have lost count of the folks who over the years have said to me that they care and offer support because it makes them who they are; they cannot imagine doing something else. Now that is not to excuse the pitiful neglect and abandonment of social care workers in regard to their reward and remuneration, their terms and conditions, but it is to acknowledge without embarrassment and apology that to care and support another is ‘more than a job’ it is the essence of our humanity. That is why it needs to be esteemed and valued as the essence of our economy. That is why as we frame the future of social care in Scotland the empowering, relational dynamic of care support needs to replace a transactional, functionalist model which is based on financial value rather than human benefit. Social care support is more than a service it is a way to life.

Donald Macaskill

 

 

Care Home Day 21 – A blog from our Joint National Partners for Integration Lead

Respair: The Return of Hope

“The work of restoration cannot begin until a problem is fully faced” -Dan B Allender

After what can only be described as an uncertain and difficult 16 months – where family life became intertwined with working life, where working life was lived through a computer screen and workdays lasted long past when they should have finished. There does seem to be a small chink of light at the end of the tunnel.

The Partners for Integration (PfI) team, like everyone else, has worked hard during this time with resilience and tenacity, going above and beyond what is expected of them. But they also at times felt isolated and anxious, having sleepless nights and wondering if there will ever be a time when things will get back to “normal”.

However, after these long hard months, we must look for some of the positives. There is no point in being inward-looking, we need to acknowledge that this has been hard and traumatic for many people in many ways, but if we don’t acknowledge that, how can we begin to learn and move forward?  Recognition of where we have been is important. Some reflection of the learning is vital but most importantly coming together, being courageous and warmly supporting one another to bravely take those important steps to recovery as one.

Along with many people, the PfI team have had to change and adapt how they have worked. Looking for how they could continue to represent and support the sector from the confines of their own houses. They have achieved this by providing support in a variety of ways to those who needed it across Scotland.  There have been many shared and difficult emotions – some many of us will never forget, yet we have realised how important our relationships are. They are relationships that will carry us through to recovery from this difficult time.

New collaborative relationships have been established; old relationships strengthened. Teams are working closer together with a greater understanding of everyone’s role in that team and we have many quotes from providers and peers that have shone a very positive light on the vital role of the team during this time. Relationships have been developed across Scotland which will last way beyond the pandemic, and we hope will take a different supportive pathway going forward as we look to what the future will bring.

The new different relationships will be what we embrace going forward. They are relationships based on respect and value. The answer was always within the virtual room, and we have grown to discover, realise knowledge and cherish the ability to share across the miles. This must be what we hold onto going forward, this has to be what we build on to create a positive and flourishing future for the sector. No one says it will be easy, but like the phoenix, it’s time to rise!!!

“You’re off to great places, today is your day, your mountain is waiting so get on your way!!” – Dr Seuss

Janice Cameron

Joint National Lead for Partners for Integration

Care Home Day 21 – A blog from our Membership Support Manager

Membership Support Care Home Day 21 Blog

In volunteering to write a blog for this important day in the Scottish Care calendar – Care Home Day ’21 –  I feel a little underqualified to share my thoughts with you. In part because I am relatively new to social care, or because I only started in the role of Membership Support Manager in February of this year, so what do I know? Granted, I have been with the organization for nearly 2 years in other roles here at Scottish Care, but do I really have enough to say that is important or relevant or valuable that shares how I feel about all of you and the work you do? How you should be celebrated not just on Care Home Day, but every single day of the year, for the work and the service you provide to loved ones everywhere?

One thing I have realized during my time with Scottish Care, that it is not the individual role any of us play that counts; it is all of us as part of the sum, part of the whole, that has kept things going these last 12 months.  By ourselves, we can all do our little bit, but together we can, and we have created a movement. We have created an environment where no one is left behind and everyone is taken care of, no matter their level of need, all are loved and cared for – but often times this has been to the detriment of those who do the caring – YOU the amazing care workers, our incredible members.

It is so easy to say how much we admire you, how you inspire us and how we know the value you bring to the people you take care of. Because it is true. I can only speak to my experience working with all of you and I am in awe. I speak to you every day – learning about your struggles, your challenges, the issues you must deal with daily, especially in this last year when things have been so very hard. I sit in meetings and hear the passion, the spirit, the frustrations, the sadness even – and I truly cannot believe you get up and do this day in, day out, 24/7, 365 days a year.  I try to be creative, solution-oriented, and supportive for you and I always promise if I cannot help you, I will find someone at Scottish Care who can. Because it takes all of us to get to where we need to be – as a sector, as care home providers, as individual care workers, together we are stronger.

I truly believe it is this can-do attitude that personifies social care and all of you who have been working tirelessly in care homes this past year. You care SO much for the residents and their day-to-day experiences. You speak passionately to regulatory bodies, local authorities, HSCP’s, Scottish Government, to anyone who will listen – that this is about the care home being the resident’s HOME, somewhere they need to live with dignity and with love. You advocate for them in ways far above and beyond what some may feel is your role. Why?  Because you CARE – CARE as in CARE home, CARE as in CARE worker, CARE as in CARE home day and CARE as in CARE FORWARD. The skill, talent and dedication you bring to work every day, even those days when you feel you just can’t do it– this is what we must shout to the world! YOU have the power, you have the GIFT, you need to be recognized again and again and again for who you are and what you do – with LOVE, with RESPECT and with DIGNITY for those you care for. Thank you seems so little for all you have done but truly, thank you sincerely for all that you do, for all that you have undertaken this past year and let us hope that this next year will be all about YOU and that you can and should be CARED for too!

Stefanie Callaghan

Membership Support Manager

 

 

 

Care Home Day 21 – A innovation blog from our Workforce Lead

Innovation is about Reshaping Services not Cutting Costs

Some of the most exciting work I am involved with at present is research that has received UK Research and Innovation funding to develop innovative resources and products that will assist care home workers to stay healthy for longer. I believe that this work is vitally important as the social care workforce has an incredibly difficult job both physically and mentally and any measures that can be put into place to support them should be implemented where possible.

One of the best parts of this programme is that there is an intention to make sure that some of the ideas being generated come directly from the care home workforce and that they will be supported to bring these ideas to fruition. So many discussions and decisions that will impact social care staff take place amongst policymakers and social care stakeholders who are not delivering actual care services. This results in front-line workers often asking why they are not consulted more on these decisions that are being made and that directly affect them and how they carry out their roles. Care home staff are the experts in their field, they are the ones who work with individuals every day and night and are responsible for building vital relationships with people they care and support in order that care is provided in a manner that is appropriate for that specific person. It makes perfect sense that they would be hugely instrumental in deciding what measures will be easier to implement and what will be realistic to achieve.

My hope is that another benefit to this research is that it will open up other types of work opportunities and careers for care home staff and will attract new people into the social care sector. Social care roles often include using technology and digital devices that require the worker to have these additional skills and experience. Including them in discussions around how technology can be utilised effectively within social care settings is vital in order to ensure this approach is undertaken in a person led manner and takes into account human rights in the process. We have already seen fantastic examples of what can be achieved by care providers who recognise there is an issue or a gap in the social care system and create a solution to that. Many care homes will be implementing creative ideas and solutions at an organisational level that can be scaled up and implemented across the whole sector should they receive the support and funding needed to achieve this.

It is also important to address the perception that innovation is a cost-cutting measure and that services must work in innovative ways in order to make savings within the social care sector. This is absolutely not how innovation should be implemented and care organisations need the tools to challenge that narrative and state that if they are going to be innovative, which could come with cost savings in the longer term, this must be appropriately resourced and funded to achieve the positive changes that are needed and will benefit the workforce in years to come.

I am extremely excited to witness changes within the care home sector that will be developed collaboratively with the workforce to aid and support them in their roles and to ultimately shape the delivery of care and support services in the future.

Caroline Deane

Workforce Policy & Practice Lead

Care Home Day 21 – A blog from our Nursing Lead

Leading to Care – Who are we if we can’t care?

 All staff within our care homes need to have the ability to care, the desire to care is not enough, staff need to be enabled to care. As we look ahead, we must understand how care can be compromised. It’s not just about the number of staff available each shift to provide care but the skill mix, the expertise, the skills staff have to allow them to care they way they need and want to. Intrinsic to this is that nurses and care staff provide care underpinned by dignity, humanity and equality.

We need a future where we have leadership at all levels, where kindness is at the heart of everything we do for those residents who rely on being cared for as well, as our staff who must also feel secure, valued to provide care. Staff must have a voice and be listened too and only then will we have a workforce that can have the tools to care through safe staffing, helping enhance the lives of the people they care for. Then care can be compassionate, not a practical responsibility, it will ensure relationships are re-established, the family of care staff are reunited, and the home is restored.

Care is multi-dimensional, it’s about showing empathy, being responsible but most of all it should be about enhancing lives. It should be a constant in everything we do, not a fleeting gesture. It should embody everything.

Looking forward we want a workforce that is not only satisfied by the care they provide but see the visible changes it makes to residents. Being outcomes focused is the key, shape care around what matters to people not a predetermined output.

You will know it’s been achieved when you see smiles, hear laughter and witness a caring physical embrace. Often care needs no words. So, let’s all look towards a future where we invest in care by investing in our nurses and care staff.

There is no forever?

Then maybe that is why it is so beautiful.

Knowing our time is limited

and all we have is now

is more than enough reason we need

to exhibit love at its most radical.

———————writings of M.

Jacqui Neil

Transforming Workforce Lead for Nursing

@TransformNurse

Care Home Day 21 – National Director Blog: Vulnerable Leadership & Workplace Wellbeing

Vulnerable Leadership and Workplace Wellbeing

It is great to be celebrating another Care Home Day, although I am sad not to be having my usual visit to celebrate in person. Indeed, like many others, I have spent much of this year thinking about lost connections because of the pandemic, and actively working to make it safe for those connections to be re-established.

I know many of our care home staff have felt the same pressures, and most likely more as they take on board the many additional tasks asked of them. I also know that our staff are exhausted, burnt out and in need of a break. I have spoken with staff who want to quit social care and even some who have felt suicidal.

And so, on this Care Home Day, I want to talk about workplace wellbeing. But I want to do this different from how I have done so before, from my spare bedroom happily preaching to others about the importance of self-care whilst completely ignoring, or more accurately, not being open about my own situation. In applauding our workforce for their resilience, we are creating a culture where we cannot talk about the reality. I want to flip things around and open doors for others. Because, as a colleague of mine said earlier this week, the impact of the pandemic is showing.

I am calling for a campaign where instead of talking only about the nice things we can do to make us feel better, we speak truth to power and talk openly about our own experiences and in doing so, create safe spaces for others to do the same. We cannot continue to gloss over experiences of stress and trauma with toxic positivity. What makes social care different from many other sectors is its reliance on humanity. Something which applies as much to the workforce as it does to those accessing care and support.

Today my phone pulled out a ‘this day last year’ photo of me and I was shocked. It was taken during lockdown when, like many others, I was home-schooling and working at the same time. I had back-to-back meetings, phone calls and I was receiving 600+ emails a day. In a reflection of frontline experience, Scottish Care was working tirelessly to support members locally and nationally through knowledge mobilisation and influence. I am so very proud of what our team achieved in those darkest of days and continue to do now. To be able to play our part in history is a real honour, I really do have the best job in the world.

The photo was taken the day that I realised I had to ‘put on my oxygen mask before helping others’ and I had decided to go for a run. My face was bright red, and I was 30lb heavier. I had got into the habit of working odd hours around the kids, grabbing food instead of preparing it, not sleeping enough, and finishing most days with a glass of wine. My back was aching from sitting on a dining room chair in front of the computer on our camping table for most of the day. I might have been smiling on the outside, but on the inside, I was beginning to ‘go through the motions, every day was the same, and there was a black dog at the front door pining to come in. My poor colleagues and family met my inner grump too. I knew I needed to get my energy and my lust for life back. My work deserved it, my family deserved it and I deserved it.

I first started to carve out patches of time just for me – to get away from my desk at lunchtime for 10 min and play with my kids or go for a walk, to connect with colleagues and peers, to catch up on admin, I pushed back on those back-to-back meetings or scheduled them for a shorter length so that I could squeeze in a short social chat, or to grab a cuppa. I bought a proper desk chair and made sure to move every hour. I showed up to meetings post-run in my workout clothes because getting the run in was far more important than how I looked. We introduced the weekly surgery sessions so that we could respond to more people more quickly, being more effective and efficient with our time across the organisation. As my lifestyle changed, my energy levels picked up, I found I could accomplish more too.

I joined ‘Wild Sea Women’ and became a leader, now hosting beach breathing sessions followed by wild sea dipping and swimming. On solstice, we hit our covid max of 50 with at least another 20 on a waiting list. It was a pivotal moment on my journey.

When I felt things slipping, I found a mentor that I met every week for a few months for just 20 min to keep me on track, and I have developed a virtual peer support group who do this for each other now. I also made better use of my time – walking meetings or doing my learning whilst walking by listening to audiobooks and podcasts.

It was then that I found the book Burnout by Emily and Amelia Nagoski, (if you do not think you have enough time to read a book, start with the Brene Brown podcast interview with them both – you can listen whilst doing chores or driving. Start small, as my mentor says, “progress not perfection”).

In it they write ‘The cure for burnout is not ‘self-care’; it is all of us caring for one another”. If we can create safe spaces for people to be how they feel in the moment, then they can have the space they need to heal and to grow and to prevent or process trauma. Something which I know our entire care workforce needs.

I hope that by telling my story I have helped to do this for others but also that I have inspired others to share their stories too.

Before I finish, I want to share more words from Emily and Amelia they have been my guide now for many months and I am finally fulfilling the last line:

“Trust your body,

Be kind to yourself.

You are enough just as you are right now.

Your joy matters.

Please tell everyone you know.”

 

Karen Hedge

National Director

@hegeit


#carehomeday21

#careforward21

Care Forward – renewing care home life

Next Wednesday is Care Home Day which this year carries the theme Care Forward. Care Home Day is an annual opportunity to focus on care homes and their vital role and contribution to Scottish society. This year’s theme both recognises the challenges and trauma of the last eighteen months but also seeks to move us forward to a revitalised and renewed care home community. In order to do that I think we need to focus on three areas, restoration, rehabilitation and renewal.

For all of us, I would hope, a day to focus on care homes in the present and future has to start with an honest reflection of where we are now. Our present is one which is far from where anyone would want to be. We are still living in the face of a pandemic with cases on a scale which are disturbingly high and with high levels of community transmission, albeit thankfully low death rates especially in our care homes. We are in an environment where new strains like the Lambda strain dominate a concerned population. We are in a situation where staffing is a real challenge and in the past week, I have heard of more and more care homes shutting up again and excluding family visits on the advice of local public health. We have a tired and exhausted workforce, managers searching for the trust and professional respect which seems to have been stripped from nurses and carers in the sector. We have fundamental problems about the fiscal sustainability of a diverse system with more and more charitable and private operators calculating that they cannot continue to deliver quality care on the resource allocated to them. And against it all we have an approach to infection prevention and control which seems insensitive to the realities of living with dementia and living together in community, in a ‘home’ alongside others.

For so many people it seems as if we have never left the shadows. There are still so many constraints. There is nothing normal or natural about the situation. Having to book a timeslot to make an appointment with love and for a limited period of time seems a huge distance from life as normal. Having to undergo testing and checks, to maintain social distance, to continue to wear masks – which are all immunologically understandable – make it hard to feel that we are in anything other than a twilight existence.

The first priority must therefore be to restore care home life as urgently and as safely as possible to that which people used to experience. Given that the average life expectancy of someone in a care home is close to two years then we have already lost a huge amount of precious time in the last eighteen months. Fundamentally we have to ask the question as to whether or not we have created such a climate of fear and risk aversion, such an impugning of guilt and anxiety upon care homes and their staff, that whilst we are keeping people alive with vaccination and precaution the quality of those lives are ones which are poor.

As we move to a situation where we are required not to suppress the virus but to live with it and balance its harms, we do need to ask questions to those who matter the most – the residents and their families in our care homes. What matters more – being so cocooned that you are safe but detached from contact and family or reducing protection to a level where people can be together in a much more natural and human manner? We have to honestly and in an informed way explore the risk appetite of people and find a space between suffocating protectiveness and dangerous naivety.

Care home life is more than just keeping people alive – it is giving a richness and fulness to the last years, months and days of life – and that depth and richness cannot be achieved without family, friends and presence; it cannot be achieved without interaction and activity, without normality and community. We need to make sure that the right for family to have natural access and contact with their loved ones does not diminish when there are outbreaks and as we prepare for an autumn and winter upsurge of threat.

Critical to restoration has to be an emphasis upon rehabilitation. I have frequently written over the months in this blog about the physical and psychological damage and deterioration caused by both lockdown and the pandemic itself. We are slowly seeing a return of allied health and primary care professionals into our care homes. This must not suffer as priorities begin to be re-directed in the next few weeks and months. Determined and focussed attention needs to be given to a population who have suffered too much and most especially this means attending to the urgent needs of those living with dementia.

But rehabilitation is never just a return to what was or a response to the inevitable decline that a degenerative disease results in. Rehabilitation must also carry with it a re-focus and new direction, a taking into account of changed circumstance and condition. Again, I have written about this before, but every day I am hearing of residents who have been impacted by the deaths of their friends in the care home. We need an urgent prioritisation of grief and bereavement support in our care home sector.

The direction restoration and rehabilitation combined offer us is a dynamic which is about renewing and reforming our care home sector. This is not the space to reflect and argue about resource and recognition, about investing in training and skilling staff, and rewarding them in a manner appropriate to the dedicated skill and professionalism they possess. This is not the space to argue for a more robust wrapping around of community healthcare and social service support for our care home sector. Both are critical but rather, in this space and in this week, we need to urgently focus on how we renew the spirit and positivity, the joy and happiness of the places we have so often in the last eighteen months painted and pictured with words of sadness and loss.

Care homes have to be allowed to re-discover the dynamic of infectious fun and love which is their core. For even in sadness the healing of laughter and enjoyment can bring immeasurable benefit. We have to as a whole health and care and as a political system, to allow care homes to re-discover the art and the gift of making a pile of bricks and mortar into a place where someone feels content to call it their home. We have to allow love to flourish both from the hand of family and staff.

One of my favourite poems is one by Diana Hendry. It is entitled ‘Poem for a Hospital’ but actually I think it speaks just as well to a care home setting – just change patient into resident. It reads:

Love has been loitering
down this corridor
has been seen
chatting up out-patients
spinning the wheels of wheelchairs
fluttering the pulse of the night nurse
appearing, disguised, as a bunch of grapes and a smile
hiding in dreams
handing out wings in orthopedics
adding a wee drappie
aphrodisiaccy
to every prescription.
No heart is ever by-passed by Love.

Love has been loitering down this corridor
is highly infectious
mind how you go. If you smile
you might catch it.

On Wednesday as we celebrate Care Home Day we celebrate the raw incarnating of love into tiny action, touch and tenderness.

Love is there despite the smell of chlorine, an infection prevention and control tidiness which seeks to remove the marks of living, which puts in the drawer the mementoes of memory lest they hold infectious risk.

Love is there despite the silence of activity, despite the empty chairs distanced from contact, without the bustle of busyness and belonging.

Love is there in every touched hand, mopped brow, supported arm, reassured fear and eye that smiles.

Love has been there even in the midst of fear and saddening loss and is there still in times of uncertainty.

But that love needs to be brought into flourishing so touch can be close, distance can disappear, and the ordinary gossip of exchange can stretch across the spaces which have been so unsocial and harmful.

We are all longing for the day when we will accidentally bump into life and love without appointment or planning, without testing or trial, without fear and distress. It is the infectiousness of love that we want to catch as we loiter around our living. And on that day, we can truly celebrate the restoration, rehabilitation and renewal of our care homes.

Donald Macaskill

The Diana Hendry poem from Borderers (Peterloo Poets, 2001). See https://www.scottishpoetrylibrary.org.uk/poem/poem-hospital-wall/

 

The language of vulnerability : a personal reflection

In a recent video conference, I found myself gradually getting more and more uncomfortable when one of the participants continually referred to ‘vulnerable service users,’ ‘vulnerable old people’ and ‘vulnerable disabled people.’ I began to reflect on my discomfort and realised that in essence it has to do with the use of the term vulnerable. It is one which is increasingly being used by commentators in the media and in politics. In this brief blog I want to reflect on the way in which the word vulnerable can result in the ‘othering’ of a person or group and the damage which can arise from that, and secondly and not contradictorily why I believe we need to accentuate the positive in our understanding of vulnerability.

‘Vulnerable adult’ was a phrase that was much used in the context of adult protection and safeguarding and to a degree still is. However, when Scotland was developing its new Adult Support and Protection legislation – which came about in 2007- there was a lot of debate on the appropriateness or otherwise of the term ‘vulnerable’. Many self-advocacy groups from the disability and older people’s movements were rightly uncomfortable with the use of the term. The reason for the discomfort is that the term used as an adjective can have the effect of diminishing, limiting and categorising a group or individual. In adult protection terms, it can both lead to a situation where individuals are treated as a group -continually at risk – devoid of distinct identity and capacity, and at the same time can lead to situations where someone is not considered to be at risk of harm because they either do not see themselves, or other professionals do not define them, as ‘vulnerable.’ So it was that the Scottish legislation, not least after some robust judicial contribution, decided not to use the word ‘vulnerable, and in its accompanying Guidance and developments there has grown up an understanding that we are all of us vulnerable to harm from the malevolent actions of another. There is therefore nothing inherently ‘wrong’ about being vulnerable, rather it is an essential characteristic of our humanity. Being vulnerable is part and parcel of human relationship where we take of the masks of pretence and expose the nakedness of who we are to another. Harm can sometimes arise when someone uses our individual characteristics including our vulnerability to cause hurt to us, it is not inherent to vulnerability.

There is a related issue as to why the use of the term vulnerable is unhelpful and it is perhaps especially a development we have witnessed as the pandemic has advanced. There is a danger that the use of the word ‘vulnerable’ risks the ‘othering’ of a person or group. What do I mean by that? Othering treats a group as ‘them.’ To ‘other’ a group or person means to so categorise and distance them that they lose autonomy, individuality and control. They become the object of our concern or care, the centre of our action on their behalf – they lose their voice and agency – their ability to be autonomous and in control. We make the decisions and do so out of paternalistic regard. If we denote a group as being ‘vulnerable’ it seems to almost add justification to the way in which we diminish their autonomy and take actions ‘in their best interests.’ Thus, we have heard words such as ‘vulnerable old people’ throughout the pandemic – treating individuals as a collective with an increasingly diminished ability to see them as individuals and able to make decisions and exercise risk on their own terms.

I mentioned above that as well as a concern for the mis-use of the word vulnerable that I would also want us to embrace a positive dimension to vulnerability. Perhaps the person who has advanced this more than anyone else has been the researcher and speaker Brene Brown. She has in her writings and speeches cogently articulated the need to recognise vulnerability as intrinsic to our humanity.

Brene Brown argues that vulnerability is essential to enable us to live a life which is connected and authentic. She believes that it is those who live fully open to their vulnerability, who ‘spend their life showing up’, who are happiest in their own self and in relationship with others.

In our rush into situations of strength and protection, in our avoidance of risk and emotion, perhaps especially in pandemic times, we are in danger of on the one hand diminishing some people by labelling them as vulnerable and on the other hand totally falling to see that vulnerability is a real strength, and an  essential asset and characteristic of our humanity.

Throughout my working and personal life, I have continually discovered that it is those who are vulnerable, who are wounded, (the word ‘vulnerable’ indeed comes from the Latin word ‘to wound’),  those who live fully raw and honest lives, it is they that evidence to us a strength, reality and maturity which is beyond price and value.

To live a life open to the dynamic of change and circumstance, to be courageous to the point that we can allow others into the space which is our inner self, to be able to stand against easy stereotype and hatred, to speak against the noise of expectation, strikes me as a wound of vulnerability we should all be seeking.

The English poet David Whyte has written a beautiful narrative poem which captures the intrinsic value and necessity of vulnerability:

‘Vulnerability is not a weakness, a passing indisposition, or something we can arrange to do without, vulnerability is not a choice, vulnerability is the underlying, ever present and abiding undercurrent of our natural state. To run from vulnerability is to run from the essence of our nature, the attempt to be invulnerable is the vain attempt to become something we are not and most especially, to close off our understanding of the grief of others. More seriously, in refusing our vulnerability we refuse the help needed at every turn of our existence and immobilize the essential, tidal and conversational foundations of our identity.

To have a temporary, isolated sense of power over all events and circumstances, is a lovely illusionary privilege and perhaps the prime and most beautifully constructed conceit of being human and especially of being youthfully human, but it is a privilege that must be surrendered with that same youth, with ill health, with accident, with the loss of loved ones who do not share our untouchable powers; powers eventually and most emphatically given up, as we approach our last breath.

The only choice we have as we mature is how we inhabit our vulnerability, how we become larger and more courageous and more compassionate through our intimacy with disappearance, our choice is to inhabit vulnerability as generous citizens of loss, robustly and fully, or conversely, as misers and complainers, reluctant and fearful, always at the gates of existence, but never bravely and completely attempting to enter, never wanting to risk ourselves, never walking fully through the door.’

Donald Macaskill

Grief is the cost of loving: care and Covid trauma.

The distinguished writer on bereavement, Colin Murray Parkes once wrote that ‘grief is the price we pay for love.’ It is a price which many have had to pay in deep measure in the 15 months that have passed, and which thousands are still paying. In this piece I want to reflect on the issue of bereavement and what we may have to do as a society to properly support those who have experienced death during the pandemic.

There are three groups I want to give particular focus to but that in no way should be seen as suggesting either their higher priority or indeed that there are not others impacted in an equal way by bereavement during Covid. The three are staff who work in care homes; the residents of care homes and lastly family members of those who have died in hospital, care home and community.

There is already an emerging literature and research focus on the experience of death, dying, grief and bereavement during the pandemic. At the launch of the UK Commission on Bereavement on which I am honoured to be serving, I heard a detailed description of the excellent research which is being carried out by Drs Emily Harrop and Lucy Selman. Their study has highlighted the difficulties and distress people experienced when trying to get support after the death of a loved one during the pandemic, with more than half of people (51 per cent) experiencing high or severe vulnerability in their grief and those seeking support facing long waiting lists or being told they were ineligible. The study also showed that of bereaved people demonstrating high or severe levels of vulnerability, three quarters (74 per cent) were not accessing formal bereavement services or mental health support. These are very worrying and challenging initial findings.

Internationally there has been an emerging recognition of unique pandemic grief responses and a growing acceptance that there is a strong likelihood that we will witness a significant growth in people presenting with what is termed ‘prolonged grief syndrome’.

Prolonged grief syndrome.

Grief is normal and natural. It is part of the rhythm of our living. When we experience the death of someone we know or someone close to us it is as if the earth beneath our feet quakes with their absence, we lose our footing and take time to steady ourselves. Grieving is a journey onwards into a new way of being in the world and with others in the absence of the loved one. Over time, we learn to live without that familiar voice, without their smell, presence, and touch. But grieving is invariably lonely, painful, and sore deep inside our very being. We slowly re-orientate our journey of life and our steps take on a different pattern and shape, as we travel to a new destination without the person who has died.

But for some people this adjustment and change does not happen. Their grief is blocked, their hurt simply overwhelming. They may end up experiencing what has become known as prolonged grief disorder or syndrome (PGS). Psychological experts have stated their belief that up to 10% of all who experience death will be impacted at some stage by PGS. The World Health Organisation describes it as ‘a pervasive yearning for the deceased or a persistent preoccupation, accompanied by intense emotional pain. In addition, individuals with PGD have difficulties enjoying social activities, experience a reduced capacity to feel positivity and possess a general inability to accept the death of a loved one.’

In a helpful paper, Lise Johns and others, describe the risk factors which may make PGS more likely:

  • experiencing more than one death within a short period of time;
  • a strong dependency on the person who died;
  • the death was shocking, premature and unexpected;
  • the death could be perceived as preventable;
  • witnessing the death, or suffering alongside the deceased person if they died following a protracted illness;
  • previous history of mental illness, especially post-traumatic stress disorder (PTSD) or depression.

Numerous scholars and clinicians are now suggesting that one of the legacies of Covid19 will be a significant increase in the number of people suffering from PGS. Indeed, the sudden and swift nature of Covid death for so many means that Covid deaths are often shocking and surprising. There is equally a lot of emerging commentary on ‘Covid guilt’, self-critical behaviours characterised by a belief that you could have done more to prevent the person becoming infected, as well as evidence that many of those who have died from Covid have experienced ‘hard’ and ‘traumatic’ deaths. All of these fit a definition of PGS.

Care home experience

We know that right across the world aged-care facilities or as we describe them in the Scotland, nursing and residential care homes, have been disproportionately impacted by high numbers of deaths because of the Coronavirus pandemic. Speaking to both frontline staff in Scotland and to colleagues across Europe I am very aware of the profound impact that this experience has had upon staff. I would argue that this is a unique grief experience in the sense that it is unlike any other equivalent experience and that not only will it result in prolonged grief syndrome but that there are factors as well as those noted above which may well benefit from academic colleagues undertaking further research and clinical investigation, in order to categorise the experiences and response as a distinct Covid grief syndrome and to thereafter identify specific and bespoke psychological and trauma therapy responses.

A care home resident in Scotland on average spends between 18 months to two years in a care home but in many instances, especially in residential care, this can be a much longer period, potentially up to 8-10 years. It is inevitable, therefore, that over that time a resident gets to know their fellow residents and staff extremely well. Whilst staff come and go and continuity of care has always been an issue in the sector, it is equally true that there are many thousands of care staff who have worked in the one care home or organisation for a long number of years. This results in the formation of deep, close personal relationships – not in divergence from but complementary to the relationships a resident has with their family. Perhaps this is especially the case for the estimated 1 in 10 residents who have no close family proximate to them and for those who live with dementia for whom figures of recognition become so important.

It is a sad reality that for many hundreds of care home staff that outbreaks resulted in the deaths of a large number of individuals over a brief period of time and that the nature of these deaths has been especially upsetting. That in itself is traumatic and is something shared with colleagues in emergency and acute medicine. What is markedly different, however, are the often intense and long-held relationships which care staff have formed with those who die compared to even staff working in intensive and emergency environments in the acute sector.

I know from my conversations that staff have been left traumatised and deeply shocked by what they have experienced and witnessed. Just a couple of days ago a senior palliative colleague expressed concern at the impact the multiple sudden deaths of residents was having on the young staff team in a particular care home.

Staff, I have been told have supported each other and have where necessary had additional psychological support and there is no shortage of virtual support. But I remain unconvinced that there has been an appropriate recognition of the distinctive grief trauma which care home staff have experienced and are still enduring. I profoundly believe more work needs to be undertaken in this area. What we are witnessing is that staff have struggled through the first wave, have been determined not to give up but to keep people safe and have worked through the second wave. But when they have had the opportunity to take a break, to switch off then they have frequently either not returned to work or have returned only to leave after a brief time. The workers whom I have spoken to in these situations are frequently manifesting behaviours and responses which have at their core an inability to process and deal with what they have lived through and the grief which has resulted. We need to do more for this amazing cohort of professionals. In passing, I would also comment that concern is being raised for those who have ‘got on with the job’, those who have returned and have not wanted to or are unable to open up, to talk and share their experiences. For some this might be a coping mechanism but the inability or lack of willingness to talk through such hard experiences is well recognised as a challenge.

The second group who I feel have often been ignored or forgotten about in our support for the bereaved have been care home residents themselves. Just picture the scenario. You are living in a community with others who help to make your life meaningful and purposeful, who are your friends and acquaintances. Together you have formed groups of interest and affection. Then the pandemic hits and the chilling exclusions of isolation together with the loss of familiar activity and exchange; the removal of the rituals of routine and predictability leave you very much alone but for the care and compassion of staff. Add to all that unreality the lack of contact with family, friends, and acquaintances unable to come into the care home for a very prolonged period. Then you may experience living in a care home where there is an outbreak. What do you feel like when not one but maybe a dozen of your friends, people with whom you have spent time and relationship, die within days?

The experience of residents during lockdown is increasingly being explored but the impact of the deaths of friends and fellow residents has not received much attention. It needs to. Whilst a renewed focus on the physiological impacts of the pandemic on residents is imperative, I am concerned that we are not sufficiently focussing on the emotional and psychological impact of the pandemic especially the grief of our care home residents.

Some have suggested to me that my concerns are misplaced and that because so many people are living with dementias and cognitive impairment that their memories of contact and their sense of loss and grief is less significant and troubling. I find such attitudes to be offensive and totally inaccurate. They are equivalent to the attitudes I encountered years ago when professionals suggested that those living with profound and multiple learning disabilities did not experience grief. People even in advanced stage dementia evidence behaviours which are clear grief responses, sometimes evidencing behaviour which challenges. These are manifested in many ways but it is clear that for some the fear and inner anxiety of not knowing what is happening, of losing the pattern of predictability and the comfort of routine, of being unable to be consoled by touch, of masks worn which have distanced empathy and the absence of families, have all had a profound impact.

We owe it to the dignity of their humanity to make sure that appropriate grief and bereavement support is in place so that the Covid grief care home residents have lived through and are still experiencing is addressed.

The third group I believe that is deserving of greater focus are those who have had to endure the absence and separation from loved ones as they have spent the last weeks and days of their lives. This has been hell for so many, moments that will never be re-captured, days that will never be had again. Whether it has been in hospital or in care home, despite all the efforts of many staff, the effect has been an absence of consolation from the hands of those who matter the most. I know from email and conversation that this aching inability to be present has cut deep into the hearts of many, it is a sore which seems incapable of healing.

We cannot turn the clock back, much as many of us would wish but we can not only learn the lessons so as never to repeat them, but equally important we must ensure that we are present and there in word and deed to support those who are left bereaved and grieving. As the world rushes to re-frame its normality, there is a danger that the fractured lives of those who grieve will be forgotten and ignored. They cannot be. We must strive to not only talk about but to actively support in practical ways the needs of the Covid bereaved. The Harrop and Selman research shows just how far short we are failing in this regard.

Covid19 has left its scars on our humanity, it cannot be allowed to continue to wound that humanity still further. Whether it is recognising the distinctive psychological and practical needs of care home staff, the necessity to adequately address the grieving of care home residents, or to bring solace to the suffering of the bereaved relatives and friends, there is an urgent task which cannot be delayed.

Speaking at the launch of the UK Commission on Bereavement and as chair of the group, the Bishop of London and former Chief Nursing Officer, Sarah Mullally said:

“To have to choose a very small number of people to be present at a loved one’s funeral, not to be able to hug and to hold one another, to be unable to gather with a large group of family and friends in someone’s home or a restaurant or pub afterwards is another series of losses, heaped on top of the raw grief. In some cases, this has included the additional trauma of having been physically separated from the person we love as they have died.

“In the wake of so much loss, we now risk a post-pandemic bereavement crisis.

Donald Macaskill