Out of the shadows: reimagining home as a place of care

This week’s blog post is the text which formed part of the address I gave yesterday at the 2022 Care at Home & Housing Support Conference. This event titled ‘Home is best: the critical role of homecare and housing support’ is the first homecare conference that Scottish Care has held in-person in 3 years.

The last three years have been some of the most trying and challenging that many of us have lived through and that is perhaps even more the case for the care at home and housing support sector and its workforce.

When I started to think of the last three years since we met in conference my reflections were inevitably dominated by the Covid pandemic and how the sector responded – but also more recently about how the sector is facing and enduring some of the most significant workforce and survival concerns any of us have ever experienced

In thinking of all that and what has happened the image that came to mind – is of a sector in the shadows – most of the time ,a shadow existence not of our own making but created by the actions of others – because care at home and housing support has been a sector that has been frequently marginalised and forgotten, bounded by the presumption and ignorance of those who thought they knew what they were talking about but simply failed to ask those who really did know better. It has been the tale of a sector and workforce which was largely ignored and not included. So, it has felt and still feels as if homecare is a sector put into the shadows.

Well, it is very much time to come out of those shadows and into the daylight.

It is certainly time for us to stop talking about the potential of homecare and to start putting our aspirations into practice through determined action and focus and to create a future that must be different. It is long since past time for us all to really live out the practical and realistic hopes we have for the sector and which we have articulated for so long. It is time to come out from the shadows and to start to shape that tomorrow with our own hands because no one else is going to do it for us.

But before you know where you are going – it is often wise to reflect on where you have been and what you have experienced.

And the last two years have been a time of shadows, not ones of our own making but an existence created by the actions and the response of others.

There has been the shadow of frontline workers not being noticed.

In May 2020 I wrote a blog entitled the ‘forgotten frontline’ in which I described the way in which the pandemic response had to that time largely ignored the vital and valuable role of the homecare workforce.

These are the women and men who we saw in our streets as regular as clockwork despite all the fears and challenges of an unknown virus. It is they who got out of bed in the morning and walked out of the secure place of their own home and into a community silent with the absence of normality. It is they who worried about taking the virus home to their families yet still in discipline and professional dedication used their energies to overcome fear, their commitment to the care of others to supplant anxiety, and who rolled up their sleeves and did the job which is no ordinary one but one of compassion and dignity.

These are the truly unsung heroes of the pandemic whose pattern of work was interrupted by rule and regulation, who drove in separate cars so as not to spread the virus by sharing, who walked miles because the buses were not running, who put on their PPE despite time not being allocated for the task, and who knocked the doors of clients and brought life, love, connection and company to the tens of thousands of women and men whose independence and wellbeing is dependent upon the work of homecare.

They were the forgotten frontline. The devastating impact of the virus on residential and nursing homes and the acute loss of life rightly gained public, political and media attention and focus. But we so easily forgot the impact of the virus on the lives of those who were supported in their own homes and on those who cared for and supported them.We certainly forgot them when we started to clap for carers, and we went on forgetting them every time a frontline homecare worker was turned away from a priority queue in a supermarket or denied access because they did not have the right badge – because they were not from the NHS. Memories of such limitation and rejection fade slowly from recall.

Our frontline homecare staff were put into the shadows.

So too were the thousands of women and men who had their packages of care support limited and removed, some with the minimum amount of notice and many without real explanation. Family and friend, neighbour and acquaintance stepped up to the plate as individuals and communities really did care and support in those early pandemic days.

But it is to our shame that as a society we thought it both desirable and a priority to diminish the little contact, remove the essential care and support on which so many individuals depended. They were the out of sight ones whose invisibility became even more pronounced and detached from our perception. They were the users of services which evaporated as the demand to protect the NHS overrode all other strategy or approach. It was they who living with dementia and its confusion received out of the blue phone calls about DNACPR forms, who found it impossible to get primary care services, whose loved ones were exhausted in the task of caring- and who was there? With the regularity of commitment?  frontline homecare staff at least where their contracts had not been cancelled.

I do not think we will ever know the psychological and physical impact on those who receive care at home and housing support, brought about by the removal of care packages, the loss of contact and company, the disappearance of homecare staff in some instances virtually overnight.

But what we do know are the statistics which show the huge increase in the number of deaths in our communities; we know the profound strain and stress, breakdown and fatigue faced by family and unpaid carers; and we know now that there needs to be a serious assessment of the decisions to remove care in a manner which has had such a profound impact on so many.

And so those who used homecare support were put into a place of shadow by a lack of priority, importance, and value.

But the placing of the sector into a place of shadow went on – maybe this was especially seen in the conflicting and confusing guidance which failed to appear for such a long time, that is the guidance we wanted and asked for – not adaptations, not edits – but a guidance that spoke directly to the practical needs of homecare services.

I am recalling times when we had to try to educate decision makers about the reality of a workforce going in and out of folks’ homes, of the need to have clear guidance on mask wearing in houses, of making sure that there was an adequacy of supply of PPE (for a shift maybe involving as many as a dozen separate homes) and the right PPE.

And then came the battles over testing – the arguments about how important it was that we made it easier for frontline homecare staff to be tested – that they should be seen as a priority workforce – and we should never have needed to voice that sentiment – that at times and in places of high community transmission the dangers to them and those they supported were huge.

The ignorance at strategic level about the nature of homecare was stark – and in some instances remains so.

And the shadow kept getting darker – and the vaccination roll out came – the life saver and the turner of the tide – it was right that vaccinations were prioritised for care home and hospital staff, for residents and patients – and for those over a certain age and with vulnerabilities in their own home. But the serious lack of focus on the critical importance of vaccinating homecare staff beyond the first vaccination should be reckoned as an error and a mistake. Access far from being made easy became a struggle and countless hours were wasted by organisations and staff trying and failing to get appointments or having to queue for ages along with the general public – when they should have been a targeted priority much earlier.

And the shadows went on and on well into and beyond our initial first and second waves. The prioritisation of the NHS and especially the obsessive focus on the issue of delayed discharge singularly failed to address the systemic crisis facing a legion of homecare providers.

A ‘lets throw money’ at the problem response devoid of systemic understanding and an awareness of the critical role of homecare as both a preventative and rehabilitative service has only served to exacerbate the decline and departure of so many organisations from the homecare sector in the last few months.

The lack of real fiscal understanding of the realities of the sector has made the shadow even worse. We applauded the increase in frontline salaries for care staff – but why was it handled and managed in such a cack-handed manner? – why did it take months for commissioners and funders to get the mid-year uplift right and even today dozens of providers across Scotland are still unaware of the contract levels they will receive to enable payment to a critical frontline workforce?

The fiscal response of Government to the homecare sector has lacked maturity and depth and has perversely caused destabilisation rather than embedded stability. There is little point in saying to a frontline worker you are now going to get paid £10.50 an hour if the actions taken by local and national government elsewhere – or to be more precise the inaction taken – results in your employer going out of business.

And still the shadows deepen – we have had a disease of more and more care packages being cut or streamlined, pushing people to the point of despair; we have witnessed an obscene increase in the number of 15-minute visits – visits which fragment dignity into time and task slots thus demeaning our humanity and which embed a damaging transactional approach.

Then throughout there has been the shadow of presuming that providers could just switch on provision – all in an attempt to address the Holy Cow of delayed discharge and the threats of the winter just past – but all without any real understanding of the sector – almost as if they thought that there was a standby workforce waiting in the wings to step up to the plate.  Come on!

And all the time the dedicated frontline workforce has become more and more exhausted, stretched beyond breaking point, covering shifts for colleagues swept away by Omicron, trying to keep services going in the face of unparalleled staff absence and sickness.

And all the time the shadow of staff leaving to go to other sectors where they are not judged and regulated, where they receive value and welcome – continues – and no glitzy TV campaign is going to address the fundamental lack of value we have failed to bestow on frontline staff and the homecare organisations who employ them.

And then in recent weeks we have had the shadow of fuel costs spiralling out of control so that staff have told managers that they simply cannot afford to drive to work or cannot afford to drive in their work; and the shadow of the impact of a cost-of-living crisis taking us back to the seventies, and of growing anxiety and fear as we look into the autumn.

Homecare has been and is in the shadows – NOW is the time to come out of them, to stop accepting being done to, to be telt by those who know not of what they speak, and to start stoutly and loudly advocating for what can and must be different, what can and must be changed, what can and will be achieved.

Some of you might be sitting there thinking what’s he worrying about we have the National Care Service just round the corner – when all our ills will be rolled up into solution, when we will have plenty a person to work in homecare, when there will be real financial valuing and fiscal maturity to deliver a world leading social care sector.

Well excuse me despite the political crystal ball gazing and the hype, reality is rooted in the now and we need to act with speed, or we simply won’t have a care sector left by the time of the glorious new dawn. We cannot remain in the shadows much longer or our life blood will grow cold.

The world of care at home and housing support has so much to offer for a new way of being and caring, a more dynamic approach to support and an enlivening of our citizenry.

I think there are several aspects of a sector no longer in the shadows.

The first relates to a re-discovery and a passionate articulation of what it is that we do because I am sick of so many people thinking that homecare is just about ‘home helping’ – a throwback to the eighties in the perceptions even of those who make decisions.

We need to re-discover the social at the heart of the definition of social care. Social care is NOT the same as healthcare and we need to be much stronger at articulating what makes it unique, different and worth investing in for all our communities.

Homecare is that care and support which enables and empowers an individual to be free, autonomous and independent in their own home. It is the energy which gives purpose to someone wanting to remain in their own space and place, it is the structure of support and care which enables citizens to remain connected to their families and friends, their neighbours, streets and villages. It is not an added extra but the essential support service that enables life to be lived to its fullest.

The best of homecare is a care that changes life and gives life.

The problem is that what we have ended up for various reasons with what is a maintenance approach to care – maintain people where they are, as they are, make sure we do not need to draw on precious NHS resources – but that is a total failure to see the potential of homecare which enables people to live lives to the full, to be active citizens and to have their voice count and matter.

So Feeley and his review was spot on when he emphasises the importance of a preventative approach to support and care that allows people to be independent for longer.

But preventative approaches which vest autonomy and choice with the citizen do not just happen – they are not accidental occurrences – they must be invested in up-stream and with co-ordinated determination. That is what has been singularly missing, not least in the failure of the self-directed support legislation when it applies to older adults in particular. SDS has become tokenistic choice and a pretence at involvement and empowerment.

Secondly a homecare sector which comes out of the shadows must be one that has the valuing of the workforce at its core – running through all things like a stick of rock.

Valuing comes undeniably with increases in take-home pay; but it is also in having terms and conditions which reflect priority and parity – like sickness benefit and death in service benefits which are fit for purpose and attractive. It also means paying staff for the whole of their time, for travel most critically. It means an end to paying workers through mechanisms which make them feel as if they are clocking in like badly behaved children ticking the school register in the morning. Can you imagine a nurse or a doctor being electronically call monitored? – then why is it okay for social care frontline staff?

But critically it means respect which values professionalism, which allows the worker to flourish and improve, learn, and develop.

And lastly in terms of the workforce we need urgently to move to an autonomous workforce – where the individual can work with the supported person to determine appropriateness of service and delivery, mapping work and time to the needs of the person not the strictures of the system. Let the worker breathe. Trust her – empower her – there is nothing more likely to create change than a person allowed to take control. So let us give a case-load to our staff and start to bestow professional trust on these individuals.

And for all this to happen, we need the homecare sector to come out of the shadows of mistrust, suspicion, contract compliance and into a dynamic new relationship of trust and transparency, shared management, and mutual integrity.

Thirdly, homecare has to put relationship building and formation at its core. It’s all about relationship, relationship, relationship stupid!

Preventative support, an empowered consistent workforce, the ability to detect and monitor changes in the supported person; the addressing of mental health issues, of isolation and grief – are all founded upon the need for relationship. It is impossible to form meaningful care and support relationships which enhance the dignity of the individual who needs services in a task-oriented approach.

So let us call it out and refuse to be complicit in a system that has effectively become the contracting of compassion slots instead of the enabling of dignity moments, that has crowded out conversation through a stress on contract compliance.

Fourthly it is time to build on what we know from the pandemic that has really worked.

I am thinking of the astonishingly positive use of in-home treatments for Covid and more – what has loosely come to be termed ‘Hospital at home’ – but it should not just be hospital but care at home – the home is too important to leave to the NHS alone!

There is a real potential if we work together for solid multi-disciplinary team working around the person with a mix of secondary, primary, and social care – so let us get on with it and turn the home into a sanctuary of independence where care comes to you rather than unnecessary and expensive hospitalisation and withdrawal from community and connectedness. Social care – home care – the clue is in the word – has a massive role to play in that dynamic process. Let us make the home the place of health and the centre of social care

Fifthly and lastly there is massive untapped potential to use technology and digital innovation to reshape the way we deliver homecare. This is already happening – it is not tomorrow’s world but today’s possibility. I do not mean the gizmos and the gadgets of the designer still at school – I mean the tech and gear you and I use every day which litters so many of our homes and with which most people regardless of age have become familiar and comfortable.

George Crooks will doubtless say a lot more. But in all this more than anything else there is the possibility of making care more person-led, more individual-centric, more likely to foster control and nurture autonomy – that is if we use technology to enable choice and individuality rather than to limit, cost save, remove privacy, control and diminish capacity. For that to happen a robust human rights and ethical modelling and set of principles must be in place.

There is so much more that could be said about the potential of homecare – but one thing I am clear of after the pain and absence of the last three years is that it needs to happen now, with people who matter most, those who use services, with those who work, and those who employ – a future out of the shadows created by those who live in the real world not policy heaven or political utopia.

For all this to happen – for homecare to come out of the shadows and fully into the light – we need not just the people in this room but political leadership at national and local level – to work with the sector to achieve the aspirations I believe we all broadly hold in common.

That working together means creating full engagement and involvement with the independent care sector. It means elevating social care as a whole and cutting us from the perceived umbilical cord to the NHS – you will never solve the crisis of the NHS by ignoring the crisis in social care – the symbiotic relationship of the two demands a mutuality of equality and treatment which recognises that.

But it also means being realistic and honest about how much radical reform requires adequacy of resource. An ethical commissioning system which goes beyond a sound bite.

It is time to cast off the shadows both those imposed and self-limiting, to walk out of a past which has failed to put social care at the heart of our communities, to start to create our homes as places of care, wellbeing, connection and independence, to walk away from models which have put systems before people, reaction before prevention, and clinical care before social care.

There is so much potential, but it can only be achieved in the sunlight of a realistic day not the shadows we have been placed in. It is time to start breathing a new air. It is time for a new future.