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