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New nursing blog – ‘With change comes new beginnings’

With Change Comes New Beginnings…

As the National Transforming Workforce Lead For Nursing my aspiration for 2020 was looking forward to a year of celebrating nursing, in this ‘The International Year of the Nurse and Midwife.’ Nursing was finally being given a platform to showcase the profession, as nurses in the main are not known for blowing their own trumpets -being a nurse is simply what they do. However, we find ourselves celebrating the invaluable work nurses have done, and continue to do, as a direct result of the new reality we are living in.

Historically nurse leadership has been core to ensuring progress, quality care and recognition for nursing achievements and this was highlighted in my March nursing blog around inspirational leaders, which is hard believe was only last month.

Over recent years the nursing profession has however shown signs of erosion, with a decline in nurse applicants across the country, particularly in the school leaver age group and an increase in experienced staff leaving in advance of their retirement date, and in some sectors leaving in advance of the early retirement date. There was recognition that both the NHS and social care sector were facing increasing pressures on services, compounded by a significant number of vacancies across medical, nursing and allied health professionals and social care staff, resulting in critical concerns around recruitment, retention and sustainability.  The reduction in university applications in nurse training in some rural areas had also resulted to some degree of sustainability issues for pre and post registration education.

There was therefore a concerted effort and desire to transform roles to manage our changing demographics. The formation of Health and Social Care Partnerships (HSCP) ideally were to address this and support our frontline workforce. Transformational programmes were being adopted across all sectors to ensure the future sustainability of the workforce, from changes to nurse education to primary and secondary care restructures. Working across different professions and sectors to achieve this had resulted in slow progress for true integration, as there was limited alignment of budgets, competing agendas and a significant lack of understanding of the pressures staff were under, which has led to demotivation and low morale, with staff leaving as a result of this.

Burnout had reached an all-time high. This was highlighted within a number of reports and surveys since the inception of integration in 2015. According to the Royal College of Nursing (RCN) Employment Survey in 2019, pressures have increased year on year. A high majority of nurses were feeling continuously under pressure, with ninety per cent saying that they frequently worked through their breaks and sixty-three per cent saying that they were too busy to provide the level of care they would like.  Most concerning was that seventy-nine per cent of nursing staff felt that staffing levels at their place of work were insufficient to meet patient needs and seventy-seven per cent felt that patient care was compromised throughout the month due to short-staffing. Nurses had become fearful of losing their registrations and in light of this the Nursing and Midwifery Council (NMC) had finally recognised the need for a support phone line to prevent further distress and mental health issues within nurses.

The year started in a state of crisis, however there was also a real sense of hope and positivity  that we could improve the global recruitment and retention of frontline staff under the light of the International Year of the Nurse and Midwife .We had a prime opportunity to show the public, alongside existing and future staff the good work being done in our NHS hospitals,  but as importantly our communities, especially our care homes, who were providing quality care in a homely setting to an increasing number of people with significant health issues. These were physical and psychological, with dementia and frailty now being the key reasons for admission.

Little consideration had previously been given to social care nursing, often thought of as the Cinderella Service, with nurses and carers often viewed as less academically qualified, lacking leadership skills and not providing specialist care. There is no doubt nurses who work within the sector have high levels of compassion and empathy but alongside this have high levels of leadership, autonomy and expertise, and possess professional academic achievements which would challenge any specialism. Despite the desire not to promote care homes as clinical areas, this has no reflection on the quality of clinical care provided within a holistic ethos.

Then came something that would test everything, a coronavirus pandemic.

The last 6 weeks have without question witnessed the greatest level of transformation that health and social care has ever seen. No longer was there time to debate or mull over ideas or options but instead there needed to be a national pulling-together to manage a crisis that had the potential to cause destruction on a level never seen before in our lifetimes. Nursing had responded to many events in history, however at no point in time would our services and ability to care be challenged to this degree.

Sadly, the downside would be that lives would be lost on a global scale and it was imperative that those dependent on our services would have access to the appropriate care and be given the necessary dignity and respect at this time, underpinned by safe practice, compassion and honesty. Nursing was now under the microscope and being catapulted into a new world which required immediate action.

To prevent further decline in our nursing workforce an emergency recruitment campaign aimed at those staff who had left the register in the last 3 years to return during this crisis resulted in approximately 8000 nurses and midwives rejoining the register. This has most recently been further extended to staff who have left up to 5 years ago, which accounts for approximately another 40,000 staff and around a further 1,800 overseas staff. Included in this was the redeployment of staff to the key areas as well as emergency recruitment of nursing students in their final 6 months of training and subsequently 2nd year students also, who both had the choice to opt in or out. This was a request that has caused a lot of deliberation for qualified staff, as well as students. This level of change, alongside delays in information around use and access to PPE, testing and shielding of staff has resulted in our nurses and carers working within extreme physical and psychological situations , further stretching staff who had already been working above and beyond.  NHS was rightly the initial priority area for staff redeployment, however due to matching staff skills we now have staff and students placed within our care homes, which has been welcomed and hopefully strengthens our existing workforce.

The degree of media coverage has been welcomed but needs to remain balanced. However, this has finally positively highlighted that our care home staff are key frontline staff, covering the determination, devotion, knowledge and skills of our social care workforce against the sad reality of the impact to the sector. We are seeing a move to more community integration and resilience, with clinical in-reach to our care homes supported by our hard working ,often under recognised community nursing teams, who have been instrumental in being the conduit between NHS, HSCP’s and social care.

As this virus predominantly attacks people over the age of 75 years it is unavoidable that we continue to see this demand and incidence within social care and within our communities during lockdown. Nurses and carers have been there from the beginning trying to manage the care of their residents with empathy and ensure advocacy for all those under their care, at all times. With this has come great frustration and impact on the health and wellbeing of residents and their family due to being isolated throughout lockdown. Staff have been left feeling helpless and unprepared at times to deal with their own emotional and psychological issues due to the loss they have witness and the need to continue to provide quality care, whilst struggling themselves.

Our care sector has sadly seen a continual increase in residents losing their lives to covid-19 and in some areas experiencing cluster outbreaks, this has had a significant impact on wellbeing. Care home staff provide an excellent level of care and especially in relation to palliative and end of life care, after all it is the last thing we can do for our residents.

In recognition of this nurses have united to ensure the people within our communities receive the optimum care during this time and are utilising every guidance and resource available in relation to infection control, palliation and also around wellbeing and mental health for staff and residents alike. This has become increasingly important during this pandemic due to the reduced contact with families and decisions that have had to be made to protect people. One of most distressing elements of this reality is some families have not been able to be there when their relative was dying. This has been due to the protective restrictions which were necessary over the last few weeks. However, the humanity shown by our nurses and carers has been a welcomed comfort to families, to know their loved ones have not died alone. As guidance and knowledge around infection control and use of PPE improves this will hopefully not prevent any other families from being together with their loved one at the end of life.

The facts are that despite the unbelievable pressures put upon our staff they continue to come to work each day, do overtime, with some staying within the care homes to minimise risk. This has resulted in positive realisation of the work our staff do, despite minimum wage, they do the job cause they genuinely care, the key requirement of anyone wanting a career in care. Unfortunately, some staff have also lost their lives across the country, with some of these being staff who had returned to practice to help. In addition, many staff have had to deal with the loss of colleagues and residents, who were, for all intents and purposes their care home family.

In this week of compassionate communities think about how people respond to crisis, how we need to support people to continue and most importantly how we never go back to not recognising what our nurses and carers give every day.

We can’t go back, we must continue to progress and keep and build on the relationships that have been formed over this short period when the world has achieved phenomenal feats.

If we can build temporary hospital in a few days surely we can build a sustainable workforce, value the contribution  and sacrifices our staff make daily and make nursing a career to strive for, after all its what we do that matters ……

According to Louis L’armour ‘there will come a time you will believe everything is finished; that will be the beginning’.

We look forward to a ‘new normal’ that means there is no shortage of nurses and everyone can access care provided by the right person, at the right place, at the right time.

Jacqui Neil

Transforming Workforce Lead for Nursing

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The ‘new care normal’

The new care normal

The First Minister published the Scottish Government’s strategy for coming out of lockdown on Thursday and encouraged a public debate on the issues which the document raised.

For the social care sector coming out of lockdown is likely to be very challenging. If as it is envisaged that there will be a phased and incremental removal of restrictions it is highly likely that this will mean that formal care settings will be amongst the last to be back to familiar patterns of behaviour and access. Even when this happens it is likely that social distancing will continue for some time and that staff will be required to continue to utilise a high level of PPE. It is likely that there will need to be increased staffing levels in a sector which has most recently been faced with acute staffing pressures and significant economic instability. But over all these very important and genuine concerns there should be a heightened awareness of the impact on those who are the recipients of social care and support.

Over the last two weeks in particular it has become clear that the levels of distress, of emotional and psychological harm, upon those living with dementia in our care homes and in our communities in Scotland are becoming more and more acute and worrying.

The ongoing focus in care homes in particular has been quite rightly the sustaining of life. This has led to the development of guidance which has meant that for 6 weeks our care homes have been in effective lockdown with only rare visits at the end of life and in the earliest couple of weeks for one named individual per family in situations of real distress. I fully understand and appreciate that concomitant to this have been clinical and infection control measures which have advocated self-isolation and social distancing; the end to the use of communal spaces and effectively the confinement of individuals who have been symptomatic.

Such ‘emergency’ measures have been justified as necessary and proportionate in order to achieve the legitimate aim of the maintaining of life. But I now believe that six weeks on we need to consider and actively debate both how long these restrictive measures can continue but also whether they are indeed the most proportionate and human rights-based interventions.

My personal concern is that we need to get a better balance between proportionate restriction of freedom of movement in order to attain infection control and a diminishing of normal life to the extent to which it is causing psychological and physiological damage e.g. through increased falls, impact on nutrition, effect on hydration, increases in delirium state etc. I am concerned that too many assumptions have been made in the adoption of infection control practices which fit an acute hospital-based environment without a full  appreciation of the nature of care homes and of the population that is supported within them. I am fully aware that there is growing epidemiological evidence around the nature and rate of transmission of Covid-19 in care homes and that we are some distance from the peak of the challenge. However, we have to more fully recognise specifically that the levels of acuity in care homes are exceptionally high and in particular that the vast majority – probably about 90% – of residents have some form or another of dementia.

Lockdown from the perspective of someone living with dementia has been in many instances quite frankly, simply hellish. Staff have spent a lot of time reassuring, being present, reminding and reaffirming what individuals about what is happening. They have supported people to understand why family have not visited and have used technology to help people to remain in contact. But sadly, such measures have only worked for a minority. For many more this has been a maze of confusion, distress and very real emotional trauma. The familiarities of touch, eye contact, physicality and presence have been denied them. The rhythms of routine so fundamental to someone living with dementia have been replaced by strictures and detachment which is causing real harm. Despite all the best efforts of nursing and care staff, care homes even where there have not been cases have changed.

Outside in the communities we are hearing equally distressing stories of individuals without family support who are immensely confused and disturbed by the changes in the pattern of their encounters with homecare staff, with neighbours and with friends.

I am convinced that we need urgently, not just as a care sector but as a whole society, to think about how we are going to support the ‘new care normal’ in care homes and in communities.

If we are to continue with some form of restricted access for some time then we need to appreciate that a care home is not an institution or a unit – it is someone’s home – and we need to get back to that understanding as quickly as possible. We need to re-connect care homes to families and vice-versa taking appropriate precaution but balancing risk against the reality that for many individuals their lives are greatly diminished and risk being fore-shortened by current measures. We need to create a real army of volunteers and others prepared to support the added demands of staffing which will be necessary with new models of care which need to maintain their human touch and person-led focus. Critically we need to urgently move from self-isolation to safe social distancing within the confines of the physical environment of a care home supporting re-connection and re-membering.

Within the wider community I am also concerned that some of the narrative which we are hearing in the media is presumptively assuming that there will be the use of age restrictions in our exit from lockdown, so for instance those over-70 may be in lockdown for a longer period of time. Just as withdrawing treatment based upon age was unacceptable as an ethical choice so I would contend such restrictions would be equally unacceptable. Setting different rules based on age is a blatant form of discrimination. It is one thing to seek to shield those most at risk because of underlying health conditions it is quite another to use blanket catch-all prohibitions.

The ‘new care normal’ needs to be molded by families and residents, citizens and carers, clinicians and professionals, so that together we get the right balance between risk and life. We urgently need to have this care conversation as part of the national conversation the First Minister started on Thursday. Put simply there is a difference between existence and living and for many living with dementia at the present time that balance seems not quite right.

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Latest Covid-19 Blog from our Workforce Lead

It has been said that during times of crisis it can bring out the best and worst in us and we have seen a great deal of that in real time with COVID-19. We have witnessed the support for NHS and social care workers on Thursday evenings, the realisation of the commitment these individuals give to their work often to their own personal detriment. We have also seen the judging of others and the way our society seems to place people on a scale of worth, this has been particularly highlighted in the comparison between NHS health staff and social care workers. Not by the staff themselves, I hasten to add, but by the general public, at times the media and by companies including supermarkets who initially deemed social care staff as a lower priority (apart from Sainsburys where I will be shopping from now on).  There has also been at times the feeling that social care is not as deserving of the same level of support and compassionate treatment their health counterparts have received.  This historical lack of value and respect has a profound impact on the social care sector and workforce and can be evidenced in the high level of staff absence that has been generally seen within the sector and which has been rising over the last 5 years.  But is it any wonder that staff who give so much of themselves to care for others experience high levels of burn out and sickness when they are low paid, lack decent work structure and security of work and are treated as an afterthought by most other professionals including those who commission their services and work.

The thing about the social care workforce is that despite this lack of respect, in times of crisis we see them again and again get their heads down and get on with things. You just have to look at Twitter and other social media sites to see the amazing work that is being carried out by care workers within care homes and in communities across the country. This is not new, COVID-19 may be something that thankfully we have never experienced before, however there have been other occasions notably during extreme adverse weather that we have seen these workers, at a time when others are staying safe at home, getting out and battling the elements to provide much needed care to those who are vulnerable.  When it is over it is back to business for the “just a care worker”, gone are the thank you’ s across social media, gone is the focus on the work they do and gone is the brief increase in value and respect.

During COVID-19 we have seen care home staff move in with their residents to ensure that they can limit the possible contact with the infection as much as possible to protect those they care for, this is obviously at a huge personal sacrifice.  Care workers, managers and care home owners have been and are currently away from their own families and homes for weeks while they have prioritised their work and residents. Surely these are the same levels of commitment and values that we see within the NHS and for which we give praise to the doctors and nurses who are working within hospitals. The same call to provide care, compassion, and assistance to those in our society who most need it. I would never try to take away from the amazing work saving lives that doctors and nurses and other practitioners across NHS do daily, it can also be seen time and time again. Doctors and nurses sleeping on floors, exhausted but willing to get up and start all over again. I am asking why this is reserved only for these individuals and why care and support workers and care home nurses are deemed not to be as worthy or deserving the same level of respect? I am also asking that the work of social care be recognised as lifesaving as without the highly skilled level of care they provide, individuals would be unable to stay safely at home and within their communities. Staff who prevent hospital admissions due to their knowledge and understanding of those they care for and their individual health needs, this is also lifesaving work!

Social care providers and the workforce give true person-centred care and that is more than just knowing someone’s likes and dislikes.  It is about understanding that person, knowing about how their health conditions including pain can impact their lives and the challenges that many people face and overcome every day.  We hear about it and see it in the stories that appear particularly right now when families have been unable to be with their loved ones, about the care workers and nurses who sit with people and hold their hands to the very end.  Staff who provide the type of care that often is intuitive, is highly skilled and can be honed through years of experience.  Palliative and end of life care that is given freely but comes at cost to the worker although it is an aspect of their role they find rewarding.   Giving piece of mind and comfort when it is most needed in the last days of a person’s life, how can this work be misinterpreted or not be recognised as being highly skilled and something that certainly most people find extremely challenging to do?

If there is any doubt about the lens that social care and it’s workforce is viewed through it can be clearly evidenced in the recent approach to supplying vital personal protective equipment and the initial lack of staff testing out with the acute sector. We know, despite the denials, that companies providing PPE were instructed to supply to the NHS as a priority to the point that many of our care providers were unable to source their normal day to day requirement of gloves and aprons. We have spoken with many of our Scottish Care members who were struggling to obtain necessary PPE to keep those using services safe and to keep vitally important staff delivering care safe. We also know from these individuals who were experiencing real panic and distress that the majority of their concern was for their service users and residents understanding how vulnerable they are in this current situation. This in itself has been traumatic; managers and owners have done everything within their power to source the needed equipment from paying much higher costs to travelling great distances to obtain PPE when needed. Bearing in mind of course these are the “greedy private providers that do not care about anything but making money” and yes that was sarcasm.

Can you imagine working for an organisation you trust and respect, knowing they invest a great deal in their staff and services. Working with and for people who are committed to long hours managing service delivery and ensuring peoples safety.  Doing a job that you love because of the reward of helping others and then being told you are greedy and only doing this for a profit.  This is while being the lowest paid section of the care sector, the most ignored and the last to receive financial assistance or support in times of need or crisis.  Independent and third sector providers and their workforce are the best of us, they do this extremely hard and challenging work with little support or financial assistance while in a climate of being told they expect too much and are not deserving of the same respect and value others receive.

During COVID-19 social care providers and their networks are constantly being told we are in this together whilst receiving little assistance. Guidance has been issued around support that providers may require due to the current changing nature of care, increasing workload pressures in some areas and decreasing pressures in others as some services have been cancelled due to family being available or because they are shielding. Increased costs surround PPE are a huge factor as prices have soared and there is a large amount of additional PPE that is now required to effectively protect services users and staff from the virus. To date this support is still to be seen by care providers some of whom are actually being expected to use forms of electronic call monitoring to deliver their services and in order to receive payment.

PPE is paramount in social care because when providing support such as assistance with personal care, going to the toilet and assisting people to eat, social distancing is just not possible. Moving and assisting equipment may be in place where people are hoisted out of bed or may receive the vast majority of care in their bed. Keeping 2 meters away from each other and the resident is not going to work in these situations so PPE must be available to keep them safe. Lack of testing for staff has resulted in time off being taken when COVID-19 is suspected but not known for sure.  It also results in staff having to be placed in vulnerable situations themselves, caring for others while not knowing if they are carrying the virus or are effectively protecting their services users due to lack of necessary equipment such as face masks.  For care at home travelling to services has been an additional issue and care staff have been fined for doing so even though they literally had no other choice due to lack of transport in some areas.  All of this contributes to care staff feeling undervalued and underappreciated and that is before they have been turned away from shops and told they are not real key workers.

Once this initial crisis has passed there must be real authentic conversations taking place to ensure that our social care workers are no longer treated as second class citizens. Our lives have changed dramatically and when things will go back to the way they were remains to be seen. We do know that social care will continue to be a huge part of peoples’ lives, caring for others with disabilities, in ill health and in older age must continue to be a priority as must the workforce that provide this care. Giving social care workers and nurses the respect they deserve and the recognition of the work they do will ensure we have a workforce who can remain healthy, both physically and mentally and are rewarded for the work they do with decent pay and terms and conditions.  Surely this is the very least that we can do to thank them and show how much they are valued and appreciated for all that they do.  If not who were you really applauding on a Thursday evening at 8pm?

Caroline Deane

Workforce Policy & Practice Lead

 

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Grieving in the time of a pandemic

Grieving in the time of a pandemic

Professionally I have been involved in the work of death, dying and bereavement for most of my adult life, both teaching and writing about the subject. In some senses then I am at ease talking about death and dying, about the pain of loss and the emptiness which the absence of another leaves.

At a personal level, like so many, I have had times when I have lost those very close to me. In those moments I have been forced to do the hard work of grief. In all honesty it has been in those personal times despite my so called ‘head knowledge’ that I have struggled to find a path through and a sense of balance when the waves of emotion overwhelm.

Bereavement is the sense of feeling robbed and bereft. For no matter how expected or anticipated a death or loss is, its ache is still sore, its pain still raw, its touch a cold beyond description. The pain of grief is like no other. It is a total emptiness, feeling abandoned and bereft and a searching which never seems to end.

This sense of lost-ness is beautifully conveyed in the original word for ‘bereavement’ from the Old English- ‘bereafian’ which denotes a sense of deprivation, of being robbed by someone, of being seized or grabbed out of living and life.

It is this feeling of being robbed that has been described to me in the last few days in my conversations with people who have had to endure the death of a loved one, someone they knew or who they cared for to Coronavirus.

This pandemic robs you. It robs you of time. It robs you of the moments when you would have been with another to say goodbye. It robs you of the touch, of the assuring smile, of the ability simply to wipe away a tear, of the chance just to be there. For to be with another at such times is to be still, to be in a touching place between life and death, between presence and absence.

This pandemic has robbed us of our traditions of saying goodbye. This is true of those who have died whether of Covid or for any other reason. It has robbed us of those moments when we find ourselves comforted by others; family have literally to be two metres apart unable to hug and console. It has robbed us of times when a song, a piece of music or hymn has sparked a memory and given familiar reassurance. It has robbed us of the rituals and rhythms of funeral and wake, of tradition and association. It has robbed us of the conversations which have sparked laughter even from the depths of sadness. It has robbed us of our ability to be with others, to reminiscence and remember.

This is in no way to deny or forget that undertakers and funeral directors, clergy and officiants are doing amazing jobs to keep things as ‘normal’ as possible not least through ‘Zoom funerals’ and video links. But strangely that very ‘connection’ has for many of us felt artificial serving only to confirm the sense of bereftness.

But out of such a sense of futility there are those who have been working hard to ensure that we can grieve despite the pandemic.

I wrote last week bout how important it was that we all made efforts to ensure that even if far from perfect there is a chance for people to say goodbye. I was therefore very pleased that a few days ago the Academy of Medical Royal Colleges along with Marie Curie and Scottish Care was able to publish some guidance to help this process. Huge thanks to Professor Andrew Elder for championing this and getting this done. 

Then on Wednesday we saw the publication the first Bereavement Charter for Children and Adults in Scotland. Over the last eighteen months I have been honoured to chair the working group of practitioners from across a whole range of organisations who have come together because they believed that Scotland needed to get better at dealing with death and dying. They devised the Charter as part of a national movement to get us all reflecting more about the role that grieving and supporting those who grieve should play in our lives and in our communities. 

No one could have imagined that the Bereavement Charter would be launched in such strange and disturbing times. Its messages have never been more important or necessary.

The next few weeks we will be all of us be rightly focussed on beating this virus. We will also be concerned about those most impacted in families and as professionals in the NHS and in care homes and home care. But after we get through to the end even if it is just the beginning of the end we will still be robbed of so many who have died, still needing to do the work of grieving.

We will need to do a lot to support those who are formal carers especially those who have faced grief at its most acute. For no matter how skilled and experienced you are we all need to be supported and upheld through our grieving, we all need to find a solace that comforts us in our weakness. When we have a sense of futility and despair, both personally and professionally, we need there to be space to open up and pour out our feelings; we need there to be people who have time and capacity simply to be present and there for us.

That will necessitate real change. There will be few of us who will be left untouched by this pandemic. Few of us will not know someone, however distant, who has been lost to the virus. We will all of us need to grieve both as a nation and as individuals. We need to be given space and time for that to happen.

We will, I hope, have a National Day of Mourning. I hope we will also as individuals and families have space for formal memorial services and events to recognise those who have died. But I also hope we will start to change the way we think about death and dying, the ways we need to begin again to restore the lives of those who are grieving and give solace to their hurt. Perhaps as a society in recent decades we have lost the capacity to share the grief of others and have individualised death, dying and loss. This surely has to change. We owe it to those who have died that their loss should mould us into a new tomorrow.

If Coronavirus leaves us with anything I hope it will be a determination not only to live better but also to be more comfortable and open in the face of dying as individuals and as a nation, for it is in that light, I am convinced, that we end up living our lives to the full.

Donald Macaskill

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Losing touch in the Coronavirus pandemic

One of the few positives to have come out of the Covid19 pandemic has been the extent to which folks have got in touch with me through social media with at times very personal questions, concerns and stories.

This weekend I have been thinking a lot about those who will not have managed to be in physical contact with their families because of the lockdown that care homes and the rest of society is experiencing. This is very hard indeed but perhaps it is hardest for those who have a family member who is at the stage of receiving active palliative care and who are at the end of their life.

I have also spent time this weekend considering with colleagues the importance of enabling families, with appropriate safeguards and protection, to be present at the death of their loved ones.

I received a message from the wife of one of the residents in a care home this morning. She said:

“ I was initially very frightened about the virus, but I wanted to be with John. The staff supported me so much and made sure I was wearing the right protection… I know it was not ideal… but I was at least there… I am so grateful for them… even though I was wearing gloves I held his hand as he passed… that was so important … I felt the touch of his heart through my fingers.”

If we have the opportunity, being present with those who we know and care for at the end of their lives is so very important. It can help a great deal to know that they were comfortable, able to feel and have the sense that we were there.

Sadly, for too many in hospitals and in care homes this has not been possible in the last few weeks. Despite all the challenges and restrictions, I know that staff have tried to keep people in touch, through recorded videos and voice messages. Staff have spent time in care homes speaking about family members and loved ones to someone who is dying especially as for many care home staff they have known the families through their visits and contact for a long period of time. It is  these amazing care home staff who through their voices have sought to console and comfort, whose hands have offered the touch to remove fear and soothe anxiety, and whose presence has instilled solace and assurance. I know through all my work across Scotland’s care homes that staff are skilled at simply being there, alongside in silence and in word, with those who are dying,  there to hold someone’s hand in the last minutes of life.

Along with others I fear the damage that is being done to us as individuals by being denied or prevented from having these opportunities. So, over the next week, with others, we will attempt to do everything we can to make it easier for care homes to admit a family member to be present in the last hours and moments of someone’s life. It might not always be possible, but I really think it is of such fundamental importance that we all of us need to try our hardest – despite the obvious challenges – to enable this to happen.

“I felt the touch of his heart through my fingers.”

Donald Macaskill 

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The hardness of COVID ethical choice

Nelson Mandela in a speech in 1998 stated:

“A society that does not value its older people denies its roots and endangers its future. Let us strive to enhance their capacity to support themselves for as long as possible and when they cannot do so anymore, to care for them.”

Like many others I have been waiting with interest for sight of the ethical guidance which would be made available to our frontline clinicians who are engaged in the struggles against the Coronavirus epidemic. I read the ‘COVID-19 Guidance: Ethical Advice and Support Framework’ with considerable expectation and hope for a clear grounding for hard decision making. When I finished I was left with more questions than answers and no small sense of disappointment.

The reason for such a document is self-evident. Despite all the best efforts of planners and politicians we may get to situation where there is insufficiency of resource to be able to provide the optimum clinical care and treatment to every citizen.  As the document itself states;

‘if immediate need exceeds what is required and there is no additional capacity, changes to healthcare delivery and scope may be necessary.’

It is in this context when we are clearly not in ‘normal times’ that we need to be able to give our frontline clinicians the ethical, moral and rights-based tools to allow them to do their harrowing job with dignity and authority. I am afraid this document fails to give that sense of grounding and raises fear and concern for many of us. It fails to live up to its declared self confidence that ‘This guidance is considered both clinically sound and on firm moral ground.’

Some of my concerns include:

The Guidance describes the role of Ethical and Advice Support Groups at both a national and local level. Whilst the membership is delineated as including clinical professionals, academics, lawyers, religious groups, social workers and lay persons, it does not describe for us HOW these individuals will make their decisions. What will be the moral and ethical boundaries, principles and framework which will guide them? What will be the clinical criteria to enable them to make impossibly hard recommendations? Will these be based on utilitarian views? How will we be assured that their decisions and advice will be non-discriminatory and based on a robust human rights critique? To what extent will characteristics of age, co-morbidity and frailty influence decision criteria? What indeed will be considered the interests and obligations that this decision-making has to the ‘wider population.’

Secondly, the Guidance uses a lot of ‘feel good’ language but does not illustrate how that assurance is going to be played out in reality. It states that:

‘Everyone matters…

Everyone matters equally…

the interests of each .. are a concern for all of us

Harm suffered by every person matters…’

All undeniably laudable aspirations and statements but how are these fulfilled in practice in an emergency, resource constrained environment?

The Guidance describes the principles of Respect, Fairness, Minimising Harm, Working Together, Flexibility and Reciprocity, but again one is left asking what it means to state that

‘Patients should be treated as individuals, and not discriminated against.’

Perhaps more challenging is the statement:

‘No active steps should be taken to shorten or end the life of an individual, however the appropriate clinical decision may be to withdraw life prolonging or life sustaining treatment or change management to deliver end of life care.’

Thirdly the use of certain phrases beg more questions than they deliver answers:

‘Where there are resource constraints, patients should receive the best care possible, while recognising that there may be a competing obligation to the wider population.’

‘Under normal circumstances, these decisions would be made of the basis of patient choice and anticipated clinical benefit to the patient. In the context of increased demand, it may also be important to consider fairness of healthcare distribution within the wider population.’

What in this context is meant by the ‘competing obligation of the wider population’? If we are to supplant patient choice and anticipated benefit for an individual what does ‘fairness of healthcare distribution’ actually mean not just at a theoretical level but in raw reality for individual citizens? Care is to be rationed- I can understand – but ethically what does the needs of the majority mean for the care of the vulnerable minority?

Fourthly, I am really concerned that issues of equality and human rights are mentioned explicitly only in two footnotes. I have stated before that Scotland should be rightly proud of its articulate defence of the human rights which have framed both our legal and parliamentary process, not least since Devolution. To present a document which articulates some of the most challenging ethical choices of our generation, perhaps of any time since the Second World War, and to have that devoid of a robust human rights articulation is wholly inadequate. How are we going to make an ethical decision which upholds the right to life and the right not to be subject to inhumane and degrading treatment? How is the State going to fulfil its duties to the Human Rights Act or the European Convention of Human Rights? I see no robust articulation of this within this document. If human rights are to be more than rhetoric in easy times they have to be real in hard times.

All this matters a great deal and it matters now.

Already we have stepped into questionable territory.

I can fully understand that for many frail and older people who develop Covid19 in a care home that the best place for them to be supported is within the care home, that transfer to an acute setting is likely to be over traumatic and result in little effective clinical outcome.

I can accept and know at first hand the astonishing professionalism around palliative and end of life care delivered in Scotland’s care homes which makes them in ordinary time hospices in the heart of our communities.

What I am deeply uncomfortable with is a blanket presumption that there will be no transfer of any individual (except in the instance of large-scale fractures) from a care home into the acute context. This leaves me disquieted because it presumes that all individuals within a care home are old and frail and it assumes a sufficiency of resource in care homes which would potentially enable some individuals who have a severe infection to respond well.

What I am equally appalled by in the last few days is the numerous instances of DNACPR being demanded as routine and automatic from care home residents by some general practitioners up and down Scotland. Quite rightly the Chief Medical Officer has robustly challenged this.

I am equally dismayed at the number of GPs who have in recent days intimated that they will not visit care homes. I fully understand that the risk of infection has to be taken into account but a presumption of non-attendance to meet the needs of individuals, even with the best use of video diagnostics, is wholly unacceptable.

If equality of access and treatment mean anything then we must not abandon our care homes, their residents and staff to an unequal level of clinical support.

The next few days and weeks must surely be those where both the clinical community and wider Scottish society needs to have a proper debate about ethical treatment and care in the face of reduced resources. It is simply too important a set of decisions to be left to a document which though it tries hard is too subjective, too generalist and lacking in a foundation of human rights and equality.

The way we respond to harrowing issues of choice will determine the society we will be as a nation after Covid-19. In Mandela’s terms decisions which are potentially based upon an over-reliance upon age and do so in a discriminatory manner endanger the rootedness and the future of the whole of our society. I trust that over the coming weeks by our actions and decisions we will all create a future we will be proud of.

Dr Donald Macaskill

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‘Who inspired you to be a nurse?” – Nursing Blog by Transforming Workforce Lead

In this the International year of the Nurse/Midwife we can look back in history and see examples of nurses who have been inspirational in encouraging people to make nursing their career.

There are some women and men who have been instrumental in making nursing and midwifery what it is today.

Some historians would argue that as far back as 250AD, men were in fact predominantly the ones who provided nursing care to the sick and the poor, with the first nursing school thought to be all male in India.

St Agatha of Sicily is the most well known patron saint of nurses, with three other patron saints, St Catherine, St Elizabeth with St Camillus de Lellis being a male. In fact, he is one of the first male nurses of the profession. He decided to become a priest only to resign in 1607 to continue to care for people affected with alcoholism. All these saints were known to inspire nurses.

Despite this, many view Florence Nightingale as the founder of modern nursing. However she was thought to hold the view that nursing was more natural to a woman and this was detrimental to the acceptance of males into the profession. More recently there was Clara Barton who was the founder of the American Red Cross and was an inspiration for going into the battlefields to help those needing first aid. Males were also present on the frontlines but were thought to have had less training.

Elizabeth Grace Neill was responsible amongst other things for creating the nurse register that ensured nursing was seen as a profession. In 1919 males also were recognised by a register.

The Nursing Theory was developed by Avenel Henderson, who was considered as the most famous nurse of the 20th Century , with all her contributions and influence to American and international nursing education, practice, research as well as its implications.

There was also Mary Eliza Mahoney who was the first registered black nurse, who continued to work throughout her career to fight discrimination and co-founded the National Asssociation of Colored Graduate Nurses in 1908 .The NACGN became Mahoney’s instrument in improving the status of black nurses in the profession nationwide.

In relation to recognising mental health issues, Dorothea Dix was the first advocate nurse who fought to improve care for people with mental health issues, with Margaret Sangar who was instrumental in ensuring the rights of women and worked for over 40 years to ensure birth control was available to women from the 1950s.

Edward Lyon in 1955 became the very first male nurse to be commissioned in the Army Nurse Corps in the US as a reserve officer.

These are only a selection of international nurses who worked tirelessly to ensure the rights of all people, alongside challenging legislation to establish nursing and midwifery as it is today, which is now devoid of discrimination . Nurses can now work and lead in all fields which offer positive career pathways, regardless of background, race, ethnicity or gender.

Nowadays we often see the young student nurse who has spent their whole childhood dreaming of being a nurse, but for many their decision comes out of a personal or family situation that changed them in such a way that they  were inspired to want to be an nurse themselves.

The more I explore this subject, the one thing that can’t be disputed is that those who choose nursing as a profession want to make a difference, to give back, they are determined and genuinely care for people, often going above and beyond.

For me personally, my childhood dream was to be a police officer, not a nurse, because I felt that by joining the police it was the one job I could help people, keep them safe and which would challenge me and make me a stronger person.

I believed this was the job that I would get the most satisfaction from and that would make me a better person in the process.

The year before I applied, my gran suffered a stroke in her late 70s. Post-stroke despite still being mobile, she was no longer able to look after herself and she subsequently came to live with us.

Psychologically she had changed due to the stroke, as did our relationship. My gran was my inspiration and to see her dependent changed my whole mindset and view on what really mattered in life.

I was always close to my gran, but our roles had reversed,  having to care for her and hold her hand and comfort her, to help her understand things and still to enjoy life despite its frustrations,  as well as being beside her, 3 years later, when she passed away peacefully at home .

Alongside this, I watched my mother with two teenagers take on the role of carer, give up her job and manage all the dynamics of the family.

It made me realise that nursing someone can give so much joy and gave me everything that being a police officer would’ve and more importantly gave me the empathy that ultimately directed me into nursing. Nursing someone you love is different, as its personal, but it gives you the insight to understand what the families of those you nurse are going through. Never underestimate this.

I believe her illness gave me the best gift. I started my training in 1987 and haven’t looked back.

Our patients and residents without question remind us every day why we are nurses, they let us into their lives, tell us their secrets and trust us to provide the care they need, literally for some, putting their lives in our hands.

The nurse-patient/resident relationship differs depending on which area of nursing you choose to work in, but can teach you how to be compassionate, and develop a patient centred approach, which ensures people’s needs and rights are met.

We know these are challenging times and there will be points in your career that you question if you still want to be in nursing, but I ask you to stop and remember why you became a nurse, and maybe  consider that you may just need a change of environment, not a change of job.

As the workforce lead for Nursing at Scottish Care I would promote  working with older people in care home nursing, as it offers a homely environment to build relationships with residents and families and provides the potential for an exceptional career pathway for you as a nurse. We do need an increase of younger people, men and people over the age of 40 years, as well as more people from Black, Asian and ethnic minority backgrounds to continue to join the profession, to ensure future workforce stability.

As nurses we hope we inspire others to do their best, nothing more or less and others to continue to inspire us in the same way.

 

Jacqui Neil

Transforming Workforce Lead for Nursing, Scottish Care

@TransformNurse

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A thought piece on Coronavirus from our CEO Donald Macaskill

“ I don’t know what people are worrying about. It’s just going to kill the old folks.”

That’s one of the many remarks I have overheard on public transport this week since conversations started to focus in on COVID-19. When you couple these comments with public officials stating in the media that the majority of deaths from the virus have been “just amongst the elderly” you are left with the distinct impression that this is not a pandemic the majority of us need to get too worried about.

But the place where such attitudes have almost become endemic is social media. There are literally hundreds of tweets suggesting that those of a youthful age and who are not  immuno-suppressed need not worry – all will be well –  just clean your hands! Some of the content on Twitter really doesn’t hold back:

‘Corona virus is killing pretty much just old people. It sounds like Earth is getting revenge for them destroying literally the entire planet and not caring about it.’

‘What I find so funny about this is the corona virus is deadly to old people which are the establishment and conservatives biggest base. If god uses diseases to punish I wonder what message hes saying with this one.’

Not since the AIDS epidemic was painted as the judgment of a righteous God has there been such a negative discriminatory association between a virus and a specific group.

Of course, the reality is that any virus never discriminates by the age of its victim but rather anybody regardless of their date of birth and most especially those with a supressed or limited immune system are disproportionately affected.

I find it immensely despairing that there is both within the wider public and in the media a creeping ageism in the reporting of and discussions around COVID-19. It is almost as if because someone is older in years that their dying is of less impact or importance; that their loss to the community, to family and friends is somehow less painful and distressing to those left behind.

At one level you could say that what we are seeing here is simply classic age discrimination playing out on Covid-19 as it does in so many walks of life from employment to the allocation of public funding. But I suspect at another level what is happening is something much more significant and profound.

What does this say about us as communities and as a nation in Scotland? Is the virus beginning to strip away the polite veneer that hides attitudes and beliefs that are simply ageist and hostile against the old? Are we finally unmasking a popular consensus that considers that to be old means that your worth is over, your contribution complete and your value limited?

The way in which we respond to any challenge marks us out both as individuals and as a community. Are we going to be one which in cold-centred self-interest and protection considers the value of an old person to be less than someone much younger? Are we going to become blasé to the fact that perhaps thousands of our older citizens will be affected by and many will die as a result of this disease?

Over the next few days and weeks thousands of women and men who work in health and social care services will be putting other people, their care and support, before their own needs. We will undoubtedly as we often have in the past witness a selfless dedication and professionalism that doesn’t just go the extra mile but an extra marathon in terms of commitment, compassion and love.

The days ahead will help to shape us as a society. Will we be a Scotland which cares for others, gives value and grants respect regardless of chronology or age? Or will we care less, commit less, consider less because someone is in their eighties or nineties?

Coronavirus will be a test not just of the infrastructures of health and care, of business and commerce, it will be a test which will determine the nature of our nation. Will we be a Scotland that cares for the old or will our compassion be limited by discrimination?

Dr Donald Macaskill

This piece first appeared in The National newspaper on Sunday 8th March 2020. 

 

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International Women’s Day: a blog from our National Director, Karen Hedge

Yesterday I dropped my children off at school on ‘World Book Day’. Amidst a sea of Harry Potter characters and superheroes I spotted someone else. There over by the door was Frida Kahlo, this girl of about 9 years old had brought the book ‘Good Night Stories for Rebel Girls’, 100 tales of extraordinary women. I purchased our own copy that morning.

Yet in doing so, I felt discontent. Of course I want my son and daughter to hear about the impact that women throughout history have made, but I could not overlook that twinge of disappointment and perhaps also a bit of rage that in 2020 we are still having to create our own platform to do so. Given the recent decisions and discussion around immigration, with a UK Government irresponsibly  and incorrectly describing social care as low skilled, this is a theme sorely and dangerously evident in social care. Intersectionality makes this worse.

The reality is that social care staff are highly skilled, professionally registered and regulated. They spend their working hours (and often more given that a significant proportion have personal caring responsibilities) supporting our loved ones, some of whom may require palliative or end of life care, have multiple co-morbidities, advanced neurological conditions or dementia and so on.

SSSC data shows that 86% of our care home workforce and 81% of our homecare workforce is female. Anecdotally from previous Scottish Care focus groups, we believe that many of those who do work in social care often take on ‘male-dominated roles’ such as handyman or chef. That there is such a gender divide should not really be surprising, it mirrors other sectors – 83% of primary school teachers are female.

We have a his-and-her-story of working with peers of our own gender; one of the contributing factors to the gender pay gap. A recent report by the Kings Fund[1] states ‘Jobs done by women are undervalued’ both in terms of the value society places on the jobs and the wage people are paid. Jobs with a higher percentage of women tend to be lower paid, and if, over time, the proportion of women increases average pay goes down further.’. Sadly I can evidence this from my own experience. I first worked as a paid carer in 2000 earning around £8.75 per hour. In 2020, social care is purchased by local authorities (usually) on the premise that social care workers are paid the Scottish Living Wage of £9.30. That makes a rise of 55p over 20 years.

One of the suggestions to counter this imbalance is to encourage more men to work in the sector as if balancing the gender of the workforce, would increase the value of the job. Of course having a more diverse workforce is welcome and a positive proposition, and from an academic perspective, this move makes perfect hypothetical sense, but a cultural shift takes time, and in many ways dilutes the issue to hand. The other solution is simply to recognise and value the workforce for the registered and highly skilled people they are.

Another example, to use the term coined by Carolina Criado-Perez in the same-titled book, of ‘Invisible Women’ is that social care contributes £3.4 billion to the Scottish Economy, which is more than agriculture, forestry and fishing. It seems no coincidence that the latter is a sector traditionally dominated by men.

Yet there are positive changes and opportunities. Whilst women are less likely to be company owners or shareholders, this trend is bucked in social care. Where other Boards are implementing 50:50 rules for the make-up of their Board, the Scottish Care Executive required no design to meet that criteria, it happened naturally as a result of the significant number of women in those roles.

At middle manager level, it is still the majority of staff who are women. Bringing their frontline leadership skills with them – social care staff are very often lone workers adept at making decisions in what can sometimes be challenging situations, they are well-prepared and qualified for the responsibility. As evidenced in the Scottish Care report ‘The Experience of the Experienced’ others have entered the sector bringing skills from elsewhere. We must also recognise that many have taken a reduction in pay or conditions to pursue this career where they can make a difference every day. But why should they have to?

We have also recently seen Project Lift, a leadership programme which started in the NHS open its doors to social care staff, growing our leaders of the future and potentially opening doors across health and social care. In addition, the current campaign to encourage more people to work in the sector and the Adult social care reform programme both have potential to promote the value of social care.

And so in raising the profile, we raise the value. Today is International Women’s Day. The theme for 2020 is #EachforEqual a statement of ‘Collective Individualism’ pointing out that it is as individuals we challenge, but only together that we can achieve change. This is not simply a call to women, or even to create the conditions for a counter-movement calling for an International Men’s Day. In collective individualism we work together and for mutual benefit. In this industry we might use the words collaboration and co-production.

Equality brings health and wealth to whole communities. So I ask you to channel your inner Frida Kahlo or whom-ever your inspiration might be. Perhaps they are a care worker.

Share this message wide and if you feel as I do, turn your disappointment (and rage) into action. #EachforEqual is for all of us, but to achieve it we must recognise and raise the true value of social care incorporating the value of our care workers, managers and owners of all genders who devote their time with skill and compassion, and who inspire us every single day. #careaboutcare #independentcare 

Karen Hedge, National Director, Scottish Care 

[1] https://www.kingsfund.org.uk/blog/2018/06/gender-pay-gap-what-now

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Latest blog from our National Director: Immigration Workforce

A career in care is one where every day you can make a difference. Yet everyone who has any contact or connection with social care knows that we have a workforce shortage. In short, we’re talking about 29% nursing vacancies and a steady turnover for frontline care staff with a 24% attrition rate. If you fancy a deeper dive into the intelligence, both the SSSC and Scottish Care have written plenty on the subject and it’s available on their websites.

It is a critical time to raise the profile of the sector, recognising it for the vital role it plays in supporting the human rights of our some of our most vulnerable citizens and recognising its workforce for the skilled role they play in that as registered and regulated staff. Social Care enables people to stay healthier for longer, able to contribute to their communities and easing pressure on the NHS. I heard only yesterday about an 87 year old lady from a care home in Dumfries and Galloway going to local primary schools to teach German and French.

There is currently a national recruitment campaign for the sector, devised by Scottish Government and with contribution from many across the sector. It includes a campaign website and clear examples of career progression expressed by the SSSC, PR in the form of advertising and the promotion of case studies. A real opportunity to promote the many positives so often overlooked.

But this positive promotion has just had a coach and horses driven right through it by the Migration Advisory Committee and UK Government. Their complete and utter ignorance and underestimation of the critical role of the sector despite repeated warnings has led to the creation of a migration system which will see the care sector lose significant numbers of staff from the EU and beyond.

This is an action which has ripped apart families and caring relationships undermining the concept of continuity of care and the critical role which the sector plays. Whilst between 6 and 9% of our care staff come from the EU, this rises to as much as 40% in some parts of Scotland. Places where families have settled into local communities, where several members of that family might work in one care home taking on a variety of roles from nurse to carer, to handyperson and gardener.

Last month, the Scottish Government launched a report seeking for the option to introduce local solutions to address local challenges, this proposal was drawn from local evidence and systems which already exist in Australia and Canada, and could be implemented in any country or region of the UK.

Yet, by lunchtime the paper had been rejected by Westminster.

What is clear is that decisions around immigration need to be based upon facts and evidence, removed from any political rhetoric, whilst focussing on prosperity and wellbeing. There needs to be a move towards a more flexible policy which recognises social care as the skilled and vital service it is. It needs to accommodate the reality of regional difference such as the demographics of rural and remote areas, adjusting income thresholds to recognise a lower rate of pay outside of London, and also to allow for families to immigrate which means recognition of the contribution made by part time staff too. The system must not rely on funding from employers – the care sector is mostly funded by the public purse and this effectively produces bureaucratic duplicity.

There is also a need to consider the context for staff who may bring their qualifications with them come from abroad for instance, in supporting projects such as the one at Glasgow Caledonian University on migrant skills recognition to enable people to work in the care sector more easily, whilst also offering protection both to the workforce and those they care for.

The situation for social care is critical. Simple and effective solutions exist but cannot be implemented because of political jurisdiction made by those who are far from the frontline. To add another 9% to the social care vacancy rate risks blocking the whole system, an issue fundamentally of human rights given the catastrophic risk to people and their families.

Whilst our NHS colleagues have raised significant concern about what a reduction in social care would mean for acute services including NHS 24, the ambulance services and hospitals, I urge you also to share this message. For social care, for the people who access care and support, and the workforce affected by the proposals, we need to act now – time is running out.

Karen Hedge

National Director, Scottish Care

 

Read Scottish Care’s response to the UK Government’s immigration plans here.