Donald’s Journey Through Enablement

Donald had been a teacher. At the time of the Improvement project, he was living alone in his flat. He had family but no children. Over time he became depressed and alcohol became a problem for him. He was diagnosed with dementia and his family took out a Power of Attorney.

By the time he was 75, Donald had ceased to care for himself. He stopped washing himself and his diet was very poor. His self-neglect was so severe that he was doubly incontinent and had a sacral pressure sore. In 2014, he was admitted to a nursing home and Scottish Care Enablement Trainers started training the staff in the Enablement approach. Though Donald walked independently without any aids, he isolated himself, rarely leaving his room. He spent hours in bed, uncommunicative and very challenging with staff when they tried to encourage his personal care. It became obvious that he engaged best with one staff member. Though she only worked two days a week, he allowed her to tend to his wound.

The Enablement Trainers guided care home staff to write support plans which ensured that all staff behaved in a consistent manner with Donald. They were to warmly and gently engage with him to win his trust but allow him to set his own pace. The staff did not give up on him and gradually, over nine months, Donald started to engage with his daily care. His family remained supportive and through them it was discovered that Donald loved dogs. Therapets were brought in for him.

By 2015, Donald was no longer incontinent, he washed daily and changed his clothes appropriately. Regular medication and a nutritious diet improved his mood and bodily functions. He liked to help so he was given the task of serving the drinks at mealtimes. Then he began to help with the garden, enjoying weeding and picking up litter. He took such an interest in his life that he would edit his own support plans, deleting certain instructions and writing ‘I can do this’. It was important to him to remember staff names so he wrote them down and always addressed staff by their proper names. He expressed a desire to go into town, so working collaboratively with his family, Donald started taking the bus into Aberdeen. Initially he was accompanied but over time he became fully independent.

By 2016, it was mutually decided that Donald could leave the nursing home. He has since moved into sheltered accommodation. Before he left, he got a card and had each staff member sign it as a memento.

The following is the text of an Address which was delivered by Dr Donald Macaskill, Scottish Care Chief Executive, at the start of the conference ‘Raising the Standard: older people’s care and human rights.’ held in Glasgow on Wednesday 29th November.

The Perils of Human Rights Complacency

Human rights and their abuse are in some contexts all too apparent, they are in your face, wholly transparent, and easy to recognise.

It is easy to see the relevance of human rights in the prison cell where political opponents of a regime are tortured; in the queues of malnourished children waiting to be fed fleeing from Myanmar; in the faces of individuals devoid of hope surviving in a place where economic corruption benefits the few at the expense of the many.

But it is much less easy to see human rights and their potential abuse in places where a veneer of material wealth is the norm; where people still get access to care and health services; where poverty is hidden; where there may be voices of protest but rarely voices of pain; where the language of human rights has become commonplace, part of the political grammar and rhetoric.

Elie Wiesel, the prominent Holocaust survivor addressing President Clinton in 1999 delivered a speech called ‘The Perils of Indifference.’ In it he said:

‘Indifference elicits no response. Indifference is not a response. Indifference is not a beginning; it is an end.

And, therefore, indifference is always the friend of the enemy, for it benefits the aggressor — never his victim, whose pain is magnified when he or she feels forgotten.’

Wiesel was pointing to a powerful truth, namely that to be indifferent to the plight of another robs that person of hope, it takes promise away from them and removes the dream that things might change.

I would contend that in our own context we are neither faced with the direct affront to or the assault upon human rights; nor indeed the casual indifference where openly and publicly a society, its people and representatives do not care about human rights. That is not our society.

But rather than both of these positions I want to suggest that in our society we are today faced with a human rights complacency – and that that complacency not only eats at hope, but limits action and serves to negate protest.

This morning I want to, paraphrasing Elie Wiesel, say that we are in danger of the perils of human rights complacency – right here and right now in Scotland.

And why am I making that assertion?

Well to begin with what do I mean about complacency? To be complacent is to be satisfied with a situation to such an extent that you cease to try harder… if things are not broken don’t waste the energy in trying to change them, don’t expend time in seeking betterment. Find other battles to fight.

So where do I see this complacency?

First of all, we do indeed have a solid basis of human rights both in legislative and policy terms. Indeed, at times I often hear how we are admired by others for the way in which human rights are at the very heart of our legislation and policy, not least social care and health policy.
Human rights complacency happens when stakeholders delude themselves into thinking that the articulation of rights is equivalent to the realisation of those rights. Merely having excellent human rights based legislation does not give the citizen the ability to realise and access those self-same human rights.

In too many instances from Self-directed Support to the proportionality and inclusion of decision making for those with limited capacity – we talk a good game but the reality is less than what we would desire.

The failure to invest, to monitor, to hold accountable and to hold to task those who have acted against the human rights enshrined within the Self-directed Support Act should shame us all – but the peril of human rights complacency is that we issue an Audit report, utter some rebuke, gain some negative media headlines but effectively fail to really challenge and change the systemic breach of those human rights.

So today across Scotland we will still have instances where hundreds of older people will fail to be properly assessed, informed of what budget they have to spend, be given real choice for their care and support, and if they want to, be able to alter that package of care and do something new and different. For too many there is no choice. No transparent offering of information to enable folks to make decisions. Rather, there is a complacent attitude that the old don’t want the fuss or trouble of taking control of their lives.

Secondly, with a such a rich heritage of anti-discrimination practice enshrined in the Equality Act, we might well consider as a society that in Scotland we treat all people with equality, regardless of distinctive or minority characteristic, recognising of course the need to treat some people differently in order to ensure such equality.

But any successful equality and human rights legislative framework demands that it is used to rigorously assess the impact of policy and practice change. So where are all the human rights impact assessments on some of the significant plans and proposals being put forward in the last few weeks by some of the Integrated Joint Boards or Health and Social Care Partnerships? If you are changing the shape and face of care as some of these will have the effect of doing- it is absolutely an act of care and human rights complacency not to rigorously assess what such changes might mean for some of our most vulnerable citizens.

Indeed, some of the proposals which have been published, though they may be couched in careful language, are presenting a limited, skewed and partial picture of the reality of care for older Scots. They are presuming upon the existence of family and informal care capable of taking over from professional paid care; they are endangering our older citizens with a casual arithmetic of austerity which is in turn in danger of saving money but costing lives.

Human rights complacency exists where we do not have robust follow through and assessment of whether or not we are walking the talk. It is a fundamental plank of the human rights framework that we undertake action where we identify that there is a need to mitigate proposals or plans which act against people and their dignity.

Thirdly we pride ourselves in Scotland, do we not, as the inheritors of the common man kailyard of Rabbie Burns, that we treat all women and men as sisters and brothers – as equal in community with one another?

But perhaps it is this romantic notion that evidences the most damaging complacency of human rights. If we truly open our eyes what we see in Scotland today is a subtle, sometimes hidden, undercurrent of unequal treatment and discrimination. The primary victims of that are the old, the frail and the infirm.

It is surely nothing less than discrimination that we do not give the same opportunities to older citizens that we give to those who are younger; that in the evidence of the recent Scottish Care report, Fragile Foundations, that we treat the mental health needs of older Scots as being of less significance than those who are deemed as adults; that we invest £500million in new provision and services for young children and early years but seek to continually slash and reduce what we spend on the old and infirm. This is not to create a generation war, lest some think it is, it is rather a calling into question the human rights basis for budgetary decisions which disproportionately and negatively impact upon the old. We are engaged in a human rights complacency if we imagine we can achieve human rights in practice without a rigorous human rights impact assessment on the way we choose as a country to allocate our resources and spend our finances.

As we consider options available for our nation in the days during which our budget is set, where does human rights fit into these decisions and priorities? Are our politicians balancing human rights in the political equation? I would love finally for someone to see social care not as a burden, as a cost, as a drain, but rather as opportunity, as asset, as an economic driver, worthy of investment, growth and innovation.

Fourthly and lastly, we have seen brought into play an excellent set of human rights based Health and Care Standards and we will spend some time this afternoon focusing on these. A lot of energy and work has been put into their development, articulation and acceptance by a wide range of stakeholders. But yet again merely having a set of indicators and Standards doth not a human rights system of care and health make.

Where is the specific resource to enable those who hold these rights to understand their meaning and relevance, and thus to exercise them? Where is the resource to enable those tens of thousands of workers who will be responsible for putting them into practice and for fulfilling them – where is the resource to train, equip, build the understanding and confidence of the workforce?

There is a complacency that assumes embedding rights costs nothing – if we are serious rather than just playing for adulation, applause and soundbites – then we need to resource the embedding of human rights. To fail to do so is complacency.

There is a fantastic potential in the realisation of human rights. Lives are changed, people gain a sense of purpose, equal treatment sits at the heart of services, dignity is enshrined to protect the most vulnerable. Raising the Standard is the challenge which lies at the heart of all human rights policy and action. But we are not there – in fact, I fear we are, at this present time losing rather than gaining our ground. To paraphrase an oft quoted aspiration of the First Minister – we are not so much reaching beyond the ceiling of human rights but we are starting to dig down into the cellar.

So throughout today we will be encouraged to see the potential of realising our human rights, of raising the standards of human rights for older people, but let us not be complacent that we have a short distance to travel before we live in a society where rights can be taken as normative and accepted by all.

Elie Wiesel said:

‘The political prisoner in his cell, the hungry children, the homeless refugees — not to respond to their plight, not to relieve their solitude by offering them a spark of hope is to exile them from human memory. And in denying their humanity, we betray our own.’

I believe that we also betray our humanity and lessen our society, if we become so complacent that we fail to recognise the subtle diminishing of rights, the closed ear to the cries of those lonely and isolated; if we fail to hear the fragile voice of those frail with age, but still seeking equal treatment and dignity. To do so does indeed demean our humanity. It is a human rights complacency that is now taking root in Scotland.

Dr Donald Macaskill
CEO, Scottish Care
@DrDMacaskill

One of my lifelong sources of irritation is that I am ridiculously short-sighted which makes the daily middle aged misplacement of spectacles really annoying.

It took me a long time to discover there was a ‘Sunday’ name for all this. According to the dictionary ‘myopia’ is the name for near sightedness and apparently it is becoming more common. But it also carries another meaning for to be myopic is also to have a lack of foresight and intellectual insight.

As I sit writing this blog there seems to be a growing tendency towards myopia amongst some of the health and social care planners and strategists that are influencing decisions across Scotland today.

Scottish Care publishes its latest report on nursing today. It paints a fairly depressing picture. There are increased vacancies, exorbitant nurse agency costs and more nurses leaving care homes to join agencies than ever before.

In response Scottish Care is working with colleagues from the Chief Nursing Office along with others to address many of these challenges. But as well as those interventions I have a concern about a wider, maybe even systemic, failure to appreciate and acknowledge the changed clinical environment we now live and work in. This is especially noticeable in some of the debates around the future of nursing in the care home sector though by no means uniquely there. There is an unwillingness to accept the significantly enhanced levels of dependency of those in care homes who require 24/7 clinical support.

Alongside this in the last few days I have read plans and proposals which effectively imagine a greater dependency on informal care in our communities and a greater reliance on an already fragile homecare sector across Scotland.

To be independent whether in our own home or in a homely setting must surely be the ambition we all want to achieve for both ourselves and our loved ones. But independence in the sense of living on your own supported by family or others is not possible and cannot be possible for everyone. The mantra of independence at all costs may seem to cash stretched Integrated Joint Boards as an easy solution but in essence it is a dangerous road to start walking down. Independent living without appropriate safeguards is neither responsible nor is it safe.

Over the last decade we have seen an enormous change in the number of people being supported to live in both care homes and in the community with enhanced and significant clinical care needs. The description I hear the most from staff is that ten years ago most people walked through the doors of a care home whereas now most have such high levels of support needs that they are rarely able to self-mobilise.

In our communities too there has been a growth in the number of people being supported to live independent lives and for whom a decade ago a hospital or care home might have been the only options open to them.

So in general, therefore, there has been a rightful re-orientation from clinical to community settings. But this has its limits. To continue to maintain or place people with high levels of clinical care in the community without an adequacy of clinical support and appropriate resourced clinical governance either in care home or their own home is irresponsible and unsafe.

Too many family carer groups tell me they are on the edge of exhaustion. They can’t have yet more placed upon them. Too many professionals recite instances where the risk of those they care for is unacceptably high and we are only a hairs-breath away from a serious incident.

There is a real danger of a care myopia which allows us to make care decisions based on the right principles but with the wrong outcomes. Quality care cannot be cheaply purchased nor delivered. The social care system in Scotland is in need of radical re-orientation and prevention is surely the key. But prevention is only possible if there are adequate supports to enable it and we are in danger of losing these. Preventative care cannot be developed within the parameters of greater risk.

At the moment I am witnessing a real lack of vision in an awful lot of the plans and proposals I see. The tendency to reach for the fiscal scissors and cut out services is a reactive one with little basis in clinical or care reality. It is evidence of limited imagination and even less far-sightedness for what care and support needs to be in the Scotland of the near-future.

Those who are in need of care, those who are vulnerable in our communities, who cannot and should not be left on their own in the name of ‘independence’ and ‘self-management’ deserve better than the restrictive visions of a limited, over-stretched, risky care currently being offered as the future in some places; for they are a short-sightedness based on fiscal criteria which serve us poorly – they are nothing short of a care myopia.

Dr Donald Macaskill

@DrDMacaskill

A Social Work Practitioner perspective of SDS

 

Those three little words…………………………………….

 

Yep we love to hear those important three little words – no not those three little words – Valentine’s Day is long gone – the second most important three little words – Self Directed Support!!

Jings – I hear you all gasp in horror – oh no not those three little words!!!!!!!

Those words many practitioners and people who use services still do not fully understand, the words that make beads of sweat appear on the foreheads of budget holders.

The Act brought a sigh of relief for practitioners, allowing them to really help service users and support them in a way that was meaningful, that was until the reality of the effects on every day working started to fall into place.  The realisation that for older people, it is difficult to think out of the box when it comes to care needs given that older people rarely have money left in their budgets after personal care need costs are met.  Practitioners are not actually able to build relationships with service users and really get to know them in the way that legislation suggests, as they are so bogged down with budgets, costs and charges, they are actually no longer able to spend time with people.

It seems that all people see with SDS is cuts.  Practitioners stuck in the middle between budget holders telling them they need to cut packages, and service users seeing their packages being cut to essential care only.  Waiting lists for day centres soar as it is cheaper and easier to source than one to one support.  SDS encourages moving away from traditional services, yet more people are being pushed into them as it is an easier option.  The transparent system is in no way transparent, with many people not knowing they have a budget or how much is in it, never mind the 4 options that many practitioners still do not fully understand.

Practitioners are still being asked by budget holders “what services does the service user want?” and “how much does it cost?”, before the budget has been agreed – panicking that a service user may want supported in a different way – oh no!!  The power imbalance, further tipping the scales in the budget holder’s direction.

The new legislation that is meant to make everyone fair and equal has in practice created a postcode lottery and instead of bridging the gap of inequality, only widening it further.

How do we fix it?  SDS is a fantastic idea on how service users should be supported yet budgets, paperwork, systems and fear do not allow it to work in an easy and seamless way. This needs to be challenged, and some of the work I have been doing with Scottish Care  around promoting and implementing SDS is starting to gain traction in this area. For instance, I have been invited to work in a local area who have recently acknowledged they are “behind with SDS”, to improve their SDS systems and promotion, and have been working with Carers organisations in advance of changes to legislation for carers, giving them access to SDS. But I continue to wonder if a 10 year strategy is the solution!? It’s 30 years until I will be an older person and I wonder if even that is enough time to get it sorted; to allow me the power to be the expert in my own life (which I am) and the ability to be supported in a way that is meaningful to me, and enables me to have a good life.  Just in the same way that every older person should be today.

 

‘We care because we care’

When I heard this I sat up, I listened and I remembered.  What this lady was telling me was that no matter what challenges she faces, she will turn up, she will be there.  But I couldn’t help but wonder if, with the need to cover long hours with limited support networks in a socially undervalued sector, there will come a point when she can’t care.

I was fortunate to meet this lady, and many other care sector staff, from front line to senior management and executives, when I recently had the honour to accompany Becca Gatherum in facilitating mental health focus groups with a view to exploring both the various mental health pressures experienced by care staff and methods to alleviate these. The resulting report will be launched at Scottish Care’s Care Home Conference on 17^th November.

This lady happened to be a care home manager, but I have since heard the theme repeated by front line staff and by home care and housing support providers.

The whistle stop tour of people, places, policies and politics that I have been on since starting at Scottish Care in June has also been a whistle stop tour of emotions; echoing the sheer joy, shock, awe, laughter, sadness, satisfaction, confusion, pleasure, frustration, and hope that I (and I wager many others) have experienced throughout a career in the care sector.

But all the while I have been wondering: ‘who will care when you can’t?’

Pressures such as:

• A workforce shortage, with 77% of care homes and 89% of home care services having staff vacancies, in a context of increasing need as the population ages and lives for longer with complex needs. The workforce itself is ageing, with 22% of independent sector care home, care at home and housing support staff aged over 55, which puts added pressure on shortages, and of the course the impact of Brexit is already being felt as we lose European workers. And whilst it is becoming increasingly likely that you will hear the phrase ‘social care in crisis’, sadly the impact that the mainstreaming of this rhetoric may be having is to further compound the situation by making it more difficult to retain and attract staff into a profession which is being negatively portrayed. We need to find and share some positives. I know they exist – I am fortunate to be chairing the judging of the National Care Home Awards.
• Providers being unable to invest in staff training and support because they cannot spare them the time off rota, at the same time as knowing that providing that training and support is what is necessary to enable them to continue to care about care.
• The impact of the ‘time and task’ nature of many commissioning packages which put a time limit on caring. Imagine an actor, had to repeat a 15 min script to a succession of audiences over an 8, 10, sometimes 12 hour shift, then go home leaving the character and any emotional connections behind. But these are not actors playing a part, they are real people forming real caring bonds and connections. As a former commissioner I remind my colleagues that the fourth part of the commissioning cycle is review, and that is not just a review of the provision, but also of the commissioning itself.

And whilst there are many more pressures I could go on to list, this activity in itself does not answer my question, but it does help me to see my role at Scottish Care more clearly. As a membership body, we have responsibilities to our members, but we also have unique access to a wealth of knowledge and information about the sector which we can promote and use to provide the evidence for change.

So, instead of asking ‘who will care when you can’t?’, I will now be asking, ‘what can I do to support you to keep caring?’.