The invisible pandemic:  the urgent need to renew homecare

If the weather allows this weekend I will hopefully escape the house and get into the garden to start to prepare the soil for the seasonal planting of bulbs. I’ve always loved gardening and open spaces, perhaps it’s me getting in touch with the Hebridean genes of ancestors who farmed the land, even without their skill and ability. Even when I have been in a place without a garden I have always wanted green life in my space. This time of year, in particular, is one that gives me a sense of the natural rhythm of existence, as planting bulbs kindles my inner hope for renewal and rebirth after the anticipation of the deadening and bleakness of winter. But of course, as any gardener knows only too well the quality of the resurrection of vibrancy in the spring, the depth of colour and vigour of harvest, is always conditioned by the soil and its preparation. You cannot sow hope in rotten soil.

On Wednesday along with colleagues I will be starting a three-day ‘Homecare Festival. It is an attempt to focus on the astonishing work of care and support that happens in the heart of our communities. On any one day of the week there are tens of thousands more people being cared for and supported in our communities than in our care homes and hospitals combined. They are being supported to play their part as full citizens of their communities. It is a care and support that gives them independence and freedom, meaning and purpsoe, contribution and value. Yet the homecare sector is one which is often ignored and rarely recognised. Never has that been more true than during the last few months of Covid19. Despite attempts it has been rare for the media to tell that story or focus on what has been happening in our communities. Perhaps understandably but no less inexcusably our focus in society has been on events in care homes and hospitals, and not in the homes beside our living. This needs to change.

In the last few days as I have prepared for the Scottish Care Homecare Festival, I have read report after report detailing the silent and invisible pandemic which has been affecting our old and disabled in communities right across Scotland.

At the start of the pandemic tens of thousands of packages of support were withdrawn – in part by local authorities seeking to prioritise resource and in part by families who feared that staff going from home to home would bring in the virus. The effect of these interventions is only now becoming clear. A couple of weeks ago a homecare worker wrote to me and detailed some of what she was witnessing and seeing. She spoke of older folks she had known for a long time showing visible signs of decline and deterioration; of a gripping sense of isolation and loneliness because with restrictions some people living with disabilities were cut off from friends and family; she recounted the growth in cases of body sores because folks had become immobile without exercise and unable to go out into the community; and most worryingly she told of the dozens she knew whose mental health had been shattered by lockdown. The stories of thousands of individuals who receive homecare supports will not often be heard or told but their pain during the pandemic is no less real for the lack of telling.

We stripped away thousands of packages of support and it is clear as we start the possibility of yet more restrictions moving into autumn and winter that many of these have not been restored. Some undeniably because family are still caring because their work has not re-started. But I fear that many more have not been re-started because of a decision to save money and a presumption that if people coped during the pandemic then they can cope now. I have heard such folly voiced and foolishness it is indeed. If for no other reason we have to reckon in that calculation the truth which tells of a 25% increase in ‘excess deaths’ in our communtiies of people living with dementia, diabetes and orher conditions.

Even before the pandemic homecare in Scotland was in crisis, it was rooted in a rotten soil. That rottenness was for many reasons. Chief amongst them was because we have failed to embed ground-breaking legislation which gave citizens control and choice of their care, instead the ‘system’ has held on to its power and resource by refusing to inform, to give people control over their budgets, and to really empower people to take control of their lives. The system has played the game of ‘self-directed support’ but not released its spirit, vested interest has cut off the shoots of real change before they could flourish.

Even before the pandemic we witnessed the perversity which comes from presuming that care can be delivered in fragments of time. Across the country there are packages of care counted out in 15 or 30 minutes created by number checking commissioners of care without regard to the urgent need for people to be treated as human beings rather than coins in a machine. There is no way one can deliver dignified, rights-based care and foster and nourish relationships in slivers of time.

Even before the pandemic we treated our frontline care workforce shamefully. Local authorities whilst boasting of their own Living Wage Employer and Fair Work practices bought care on the cheap by drawing up contracts with care companies knowing that their allocation of resources prevented those organisations from delivering fair terms. And to add insult to injury the same authorities introduced electronic monitoring systems to effectively ‘tag’ frontline carers so that they could be stalked and controlled.

The pre-pandemic state of homecare in Scotland – and therefore by volume – social care as a whole was shameful, pathetic and rotten. And it still is. Radical change is needed. If we are to flourish and come to a spring of renewal the soil needs to change and the system needs to be overhauled.

So, at the Homecare Festival I hope we will hear of a vision which will be about giving control and power to the citizen who is supported and who uses care rather than to commissioners and bean-counters. I hope we will hear of a vision where workers are trusted and given autonomy, not clocked and checked at every turn. Where terms and conditions are resourced for equality and fairness rather than a two-tier system where local authorities look after their own first and others get the fag-end of attention and support. I hope we will hear a vision where prevention rather than reaction is at the heart of the packages of support we create. And most of all I hope we hear of a vision which adequately resources the care of people in their own home rather than seeks to buy care on the cheap. All of this would show we care about care rather than empty slogans.

At the heart of all this – as we enter a Covid autumn and winter, I hope that when we plan, we remember that many of the thousands of family carers who took over care or carried on care without support are absolutely on their knees. Families are exhausted, the act of 24/7 caring has spent and drained them. They urgently need support especially where traditional day services and respite opportunities have been stripped away during the pandemic. We need to critically re-prioritise homecare and seek to invest more not less.

Across Scotland today there are thousands of people in urgent need of support to rehabilitate their physical bodies after months of decline, there are hundreds in need of psychological and emotional support after isolation and emptiness; there are yet more in need of being made to feel that they matter, that they are noticed, that they are valued.

There is much talk of winter planning –but if we do not plan to tackle this pandemic in our communities and in the homes of those who require support and care then we will reap a terrible harvest of regret in the spring. We need to renew the soil, replace the rotten practices of the past with refreshed vision and humanity. We can only sow hope and healing in conditions that allow it to grow.

The great Irish poet Derek Mahon died on Thursday night. He was a poet of his time asking uncomfortable questions to those who would rather not hear. I think homecare asks us the same. We can go through the next few months choosing to ignore the silent pandemic in our streets, in the homes around which we settle our living, or we can open our eyes to create a vision of a better way of caring for and upholding one another. We can collude with the ‘old conspiracy’ of staying as we are, settling for the soil we have or we can create a fresh hope for spring because the truth of homecare around us should surely ‘exact more interest than casual pity.’ Mahon says it all in his brilliant poem  ‘Spring in Belfast’ and its last stanza in particular.

 

Walking among my own this windy morning

In a tide of sunlight between shower and shower,

I resume my old conspiracy with the wet

Stone and the unwieldy images of the squinting heart.

Once more, as before, I remember not to forget.

 

There is a perverse pride in being on the side

Of the fallen angels and refusing to get up.

We could all be saved by keeping an eye on the hill

At the top of every street, for there it is,

Eternally, if irrelevantly, visible —

 

But yield instead to the humorous formulae,

The spurious mystery in the knowing nod;

Or we keep sullen silence in light and shade,

Rehearsing our astute salvations under

The cold gaze of a sanctimonious God.

 

One part of my mind must learn to know its place.

The things that happen in the kitchen houses

And echoing back streets of this desperate city

Should engage more than my casual interest,

Exact more interest than my casual pity.”

 

Donald Macaskill

To find out more about the Homecare Festival from Wed 7th to Friday 9th  see https://scottishcare.org/cah-conference-2020-2/