Protecting the NHS means protecting the key principle on which it was built

Back in April 2020 I helped write an open letter, directed at NHS England, the British Medical Association, Ministers and others which expressed concern about the risks to disabled people’s lives of policies and guidelines being considered, proposed or already enacted to deal with the prospect of healthcare rationing should the Covid-19 pandemic overwhelm the NHS.  These included:

The leaked ‘clinical frailty scale’ designed to be used to triage patients for acute care based on the extent of pre-existing conditions and their age;

The BMA’s ethical guidelines which envisaged shifting to a ‘utilitarian approach’ and which explicitly entertained making judgments about access to treatment based on social worth should the means to do so on clinical grounds be exhausted;

And early evidence of GPs issuing blanket Do Not Attempt Cardio Vascular Resuscitation (DNACR) notices to working age people with learning disabilities and others living in care homes. 

Over 2000 organisations and individuals signed the letter, which was covered on BBC News at Ten and which received a reassuring response from NHS England as well as prompting communications from NHSE about the proper use of DNACR notices.

In the end, hospitals were not overwhelmed in the way many had come to fear having witnessed the scenes in Italy and Spain in February.   Nevertheless, the first wave of the pandemic took a shocking toll on the lives of disabled people. By July, almost 6 in 10 of all who had died from Covid-19 were disabled people.  A team at Manchester University has estimated that 29,400 more care home residents, directly and indirectly attributable to COVID-19, died during the first 23-weeks of the pandemic than expected from historical trends, particularly affecting people living with dementia.  People with learning disabilities had a ‘death rate’ from Covid-19 up to 6 times higher than others.

Of course, we can attribute a great deal of this disproportionality to the age and underlying health conditions of people that died, both of which have been shown to weaken the immune response to the virus and which significantly increase the risk of serious illness and death. And while people bemoan the restrictions on their freedoms borne of the Tier system and lockdowns, many millions of our fellow citizens who are considered ‘clinically extremely vulnerable’ have been under effective house arrest for almost a year and will continue to be for many months to come because of these risks, with huge implications for their health, wellbeing and freedoms.

But these intrinsic risks are only part of the picture.  It exists also because disabled people of all ages are more likely to find themselves in situations of risk. 

Congregate models of assisted living, including care homes and group supported living, are to Covid-19 (and other contagion) what flammable cladding is to fire in tall buildings. The larger the assisted living facility the greater the likelihood of a large number of people dying from Covid-19.  This explains in particular why the pandemic has taken such a heavy toll on the lives of people with dementia.

Poverty plagues the lives of disabled people and the strong relationship between socio-economic status and the risk both of acquiring and dying from Covid-19 is well documented.  Moreover, it is likely that disabled people will endure disproportionate levels of poverty resulting from the pandemic,

Unequal access to healthcare predates Covid-19 and particularly effects people with learning disabilities.  Evidence has since emerged that DNACR notices were being issued without any consultation, sufficient to trigger an investigation by the Care Quality Commission.  

These are just a handful of the factors that have conspired to make Covid-19 more deadly for disabled people than for others in our society.   Each is emblematic of our failure to respect, protect and ensure the rights of disabled people. 

So is the rationing of healthcare.    

It might be argued that the reason the NHS was not overwhelmed in the first wave was down to the success of the ‘upstream triage’ which meant that so many disabled people, especially older disabled people, died outside of hospital, in care homes or other settings.  Some of this may be objectively justified both on clinical grounds and on grounds that hospitals can be both hugely damaging environments and not a chosen place to die on the proviso that these are decisions made on an individual case by case basis.  Yet it appears to have been a proactive policy both to discharge people to care homes, including people with Covid (or where their Covid status was not known) irrespective of the risk to others and to proactively pursue the avoidance of conveying people who became ill in care homes and other congregate settings to hospital.  In sum, people were placed at risk and then denied access to healthcare in order to ‘protect the NHS.’  Was the ‘utilitarian’ approach – rather than the human rights approach that supposedly underscores the NHS – actually in action in April and May of 2020, permitting direct discrimination on grounds of age, disability and health status? 

It seems highly probable that it is about to be.

It is obviously welcome now that people living in care homes, people with severe learning disabilities and others are now being prioritised for the vaccine and this provides some counter to any case of systemic discrimination.  Nevertheless, the current wave is already more deadly than the first and does look set to overwhelm the NHS imminently and before the vaccine can have any material effect.  We now face the prospect that those various decision-making tools and ethical guidelines that so concerned us last April will come into play as Doctors are faced with deciding who should or should not access acute care.  We know the pressure is there again for care homes to accept people discharged from hospital with Covid-19.  And it may already be the case that there is a policy of not conveying people living in care homes and other modes of assisted living to hospital to ‘protect the NHS’?  In the coming days and weeks vigilance and information-sharing is going to be vital.

As we opened our letter last April: ‘the NHS is built on the principle that we are each equal in dignity and worth.  It expresses our commitment to protect one another’s right to life and to health, no matter who we are.’   We cannot simultaneously claim to ‘protect the NHS’ while abandoning this principle.     

If Goodhart is a serious appointment, give EHRC the powers to address socioeconomic inequality

When the appointment of David Goodhart to the Board of the Equality and Human Rights Commission was announced I hesitated to make any comment, sensing it was all a deliberately laid trap. But I still walked into it and lo:

Translation: person appointed to Equalities and Human Rights Commission who doesn't nod along with every single one of the latest woke narratives.

Well played @trussliz and @David_Goodhart 👏👏👏👏 https://t.co/iOeZRvZAxo

— Julia Hartley-Brewer (@JuliaHB1) November 16, 2020

It seems deliberately geared to have provoked the predictable backlash: another battle line in the culture wars it had been suggested walked out of Number 10 with Dominic Cummings last week.

Other, usually more measured commentators, such as Ian Biglan, whose analysis I find myself usually admiring, appear to be relishing the reaction too. Ian’s account of his time at the Commission reflect some of my own experiences, though I find his own self canonisation as its saviour a little self-indulgent. During his time as Chief Operating Officer the EHRC lost many of its powers and functions, much of its income and staff and had a Chair who stood by while it happened. Maybe this is a success story to some, but it’s a peculiar one.

First things first then: I don’t think the job of the EHRC as a public body is to ‘defend minorities’ but rather it is to address society as a whole in line with the mandate given to it by Parliament in 2006:

‘The Commission shall exercise its functions under this Part with a view to encouraging and supporting the development of a society in which—

(a)people’s ability to achieve their potential is not limited by prejudice or discrimination,

(b)there is respect for and protection of each individual’s human rights,

(c)there is respect for the dignity and worth of each individual,

(d)each individual has an equal opportunity to participate in society, and

(e)there is mutual respect between groups based on understanding and valuing of diversity and on shared respect for equality and human rights.’

I believe viewpoint diversity is crucial to it having the leadership to do that job well. It should draw upon a broad range of backgrounds and expertise. Indeed, having a plural board is a key criteria for its status as a National Human Rights Institution. But one would assume that Board members at least demonstrate a commitment to the aims of the organisation, to the legislation it is tasked with promoting and enforcing and to the principles underlying it. Celebrating the appointment of people to its Board precisely because they are assumed not to is….. telling.

Goodhart’s views are often a red rag to a bull where many activists are concerned, not only his support for the ‘hostile environment’ or dismissal of Black Lives Matter as ‘statistically naive’ but his views on gender equality also. Nevertheless, he potentially brings an important perspective, which stems from the fact that for equality, human rights and good relations to truly become everyday currency, an understanding of the experience, perspectives and aspirations of everyone, including white working class people, is crucial (though maybe white working class Board members could do it better). Trevor Phillips believed this and spearheaded a shift in thinking first at the Commission for Racial Equality with his ‘sleepwalking into segregation’ speech and then as the first chair of the EHRC. Trevor is now a colleague of Goodhart at the conservative think tank Policy Exchange.

Ian Biglan argues that:

‘Goodhart can bring a valuable perspective that is only now gaining ground in public discourse. Social mobility for young white working-class males is at crisis point. Educational underperformance means that the kids of the ‘people from somewhere’ cannot get on. The reasons for this are contested – is it class or race or both? – but the outcome should concern us all.’

Yet Conservative-led governments since 2010 have deprived the EHRC and others of the practical means to address this. Putting aside the fact that Biglan doesn’t identify gender as a possible issue, the Tories have so far refused to enact section 1 of the Equality Act 2010, the public sector duty regarding socioeconomic inequalities’ which would have given it powers to address inequality related to class and prior socio-economic status in its own right. This would be of benefit both to attending to the inequalities experienced by working class boys, of whatever ethnicity, rather than going down the road of striving to argue it is a result of discrimination on grounds of white ethnic status, for which I have seen no evidence. If the government is serious about Goodhart’s appointment, then why doesn’t it enact the duty?

Biglan goes onto to argue that:

‘His (Goodhart’s) views on the impact of mass immigration on established communities and the deleterious effects on social solidarity are particular grievances for his critics.’

But again, the Tories, when clipping EHRC’s wings back in 2013 (when Biglan was Chief Operating Officer), took away its duties and powers to promote ‘good relations’, which had tasked it with fostering good relations between people who shared a relevant ‘protected characteristic’ and those who do not (an inheritance from the CRE, which as I’ve already noted was being shaped by Trevor Phillips towards a pro-integration agenda). In fact the government pursued an active strategy of focusing the EHRC only on enforcing Equality Law, which as I’ve already noted provides it with little scope to attend to socioeconomic inequality or to engage in wider debates about integration.

So what does Goodhart do on the Board of an organisation which has few powers to attend positively to the things he cares about? Well if Julia Hartley Brewer is to be believed he’s there to obstruct it from doing the things Parliament tasked it with doing, as two fingers to ‘woke-ism’. Hence at once, in the absence of providing the Commission with powers it needs, his appointment provides no serious attempt to address the issues that usually serious commentators like Biglan consider to be his added value, while the framing of his appointment by various celebrating conservatives is explicitly hostile to the Commission’s role in addressing the discrimination and inequality faced by black people, just last week identified as a weakness by the Joint Parliamentary Committee on Human Rights.

When the Commission was established in 2007, the then Labour government packed it with its own people. It’s no surprise that the Tories should want to do the same now. But that they should do so with an eye to inflaming rather than healing tensions in our society should worry us.

In the meantime, the appointments process offers a veneer of transparency, but it still grants Ministers the ultimate say. Many have long argued that, as a human rights body, the EHRC should be accountable directly to and its board appointed by Parliament, not Ministers. I’d like to think a Conservative government would do this. The next Labour government definitely should. And in the meantime, maybe the Office for the High Commissioner on Human Rights will finally emphasise the importance of reforming accountability to the real and perceived independence of the EHRC when it next reviews its status as a National Human Rights Institution.

,

Admiral Nurse Kerry Lyons

As always in our experience, the paramedics were wonderful.  Aware of my dad’s dementia, they showed patience, creativity and sensitivity in checking him. But this time, worried about his low blood pressure, they took the decision to take my increasingly confused dad into A&E.  My mum and I waved him off in the back of an ambulance.  Covid 19 meant we were unable to go with him, or be at the hospital. 

We were worried sick.  

When he’d been admitted to the same hospital 18 months earlier we had had to remind every single consultant who saw my dad that he had dementia, despite an Alzheimer’s Society symbol displayed prominently above his bed, and information in his medical notes.  That time we had been able to be there, acting as best we could as his advocates. Once he was home, we didn’t like to imagine what might have happened had we not been.

So when a few hours later an A&E Doctor called my mum and said ‘your husband appears very alert, but when I ask him questions he appears confused and struggles to answer,’ alarm bells began to ring loudly.  And sure enough, when my mum advised the Doctor of my dad’s Alzheimers, our worst fears were confirmed when she indicated that she had been unaware.

I got in touch with someone that I knew had both influence at the hospital and a personal connection to my dad to ask for support.  A couple of hours later, Admiral Nurse Kerry Lyons came into our lives.

It’s taken me a while to write this as I wanted to truly honour what Kerry meant to us.  I could tell you how the very first thing she did was to find out who my dad was and what mattered to him, not what was wrong with him, and how she made this the framework for his care.  I could write about all the practical help and advice Kerry provided in helping us to understand what was happening and what was going to happen when information from the hospital was sometimes inconsistent, alarming or in short supply.  I could tell you about the support she gave in finding a care home place.  I could tell you about the morning calls to let us know how my dad was when we couldn’t be there, the late night messages of reassurance and advice or the cups of tea she brought my mum first thing in the morning when she’d stayed overnight to be by my dad’s bedside towards the end.  I could tell you about the honest, sensitive counsel she gave us about whether continued treatment was in my dad’s best interests and how, as the town we were in descended into a local lockdown, she helped ensure we could still be with my dad at the end of his life.   And I could reflect how doing all of the above must demand such diplomacy, tact and expertise to win & sustain the trust and respect of patients and their families and hospital colleagues at all levels. 

I could tell you about all of those things, but I don’t think they would convey the most crucial thing Kerry brought, which was this: she made us all feel like someone cared about my dad and us, not only that my dad was being cared for.

Kerry’s empathy had shone through, and I sensed it must have come from personal experience, so I asked and sure enough it had.   It’s not my story to tell, but what I do want to acknowledge is what it means to dedicate one’s life to righting a wrong for others that you no longer have the opportunity to fix for the people you love most.   I will take that with me always, and dedicate myself to it too.

Kerry, you came into our lives when it mattered most. You helped my dad have the best possible end to his life and helped to give us the strength we needed to be there for him.  

Thank you, always.

Custard

My dad & a custard slice, March 2019

“Last scene of all,
That ends this strange eventful history,
Is second childishness and mere oblivion;
Sans teeth, sans eyes, sans taste, sans everything.”

‘All the world’s a stage’, from ‘As You Like It’ by William Shakespeare

My dad really liked custard, ‘Crowther custard’ especially.  Crowther custard was custard in which a spoon could stand vertically.  He always made sure he got the skin off the top. 

He had always had a sweet tooth, which is probably a reason why he wore dentures.  His fondness for cakes and desserts seemed to increase as his dementia progressed.  He’d take a few mouthfuls of his dinner, often a firm favourite, before giving up, either down to little appetite, or more likely the frustration of not remembering how to eat with a knife and fork.  But he’d almost always still devour pudding.

I think he found his dentures uncomfortable, even though my mum had paid privately to have NHS dentures further crafted to fit his mouth.  He’d developed a habit of taking them out mid meal and placing them in the middle of the dining table. But for a period when he’d had to endure coping without them he’d been very self-conscious, often placing his hand in front of his mouth when he spoke.   And so he had them in most of the time, allowing him to flash his winning smile almost to the end.

I say almost because during his first hospital admission, somewhere in the transition between two wards, his dentures went missing and could not be found.  It’s unclear how this happened as we were led to believe my dad was receiving one to one nursing on account of his dementia and agitation.  We understand that there had been no checklist done before moving wards.

The Matron, Ward Sisters and nurses looked thoroughly and were deeply apologetic when they could not be found. We checked in with the two dentists to see if they could be replaced but neither had kept the mould.  If my dad needed dentures, we would have to start from scratch.

The hospital offered to pay for replacements and found a dentist able and willing to come to the care home to which he was to be discharged.  But there was no way my dad was going to endure the arduous process involved now.

That afternoon I spoke to the social worker.  I think she felt she was being sympathetic, but when I told her about the dentures going missing she replied that ‘it happens all the time… and hearing aids too’.  She then went on to advise that my dad was ‘in a place of safety’.   I suggested she might reconsider whether someone is safe in a place where patients routinely lose the means to eat or to hear but she was on auto-pilot.

So he spent the last few weeks of his life without teeth and then developed thrush in his mouth.  And all he could or would eat, before giving up food altogether, was custard.

No

In the last months of his life my dad talked lots.   Little of it made obvious sense, though with a bit of patience it was possible to sometimes work out the intention.  There was one word that he hadn’t lost though: ‘no’.

No to taking his anti seizure medication.  No to using the toilet to take a pee.  No to getting dressed.  No to drinking enough water.  No to going to bed…

One might attribute his refusal to cooperate in what we judged to be in his own interests to a rapid decline in his cognitive functioning as a result of his dementia.  But I sense it was at least in part the other way around: that the decline in his health was precipitated by a conscious desire to exert control and to resist what he perceived to be a lack of respect for his cherished (even if mythical) personal autonomy.  

It would be easy, given the consequences, to characterise such behaviour as irrational.  I’m also conscious that it could be perceived as convenient to me to characterise it as in line with my dad’s own will and preferences.   But as I wrote before he died “I think we are hard-wired to seek control over our own day-to-day lives.  When rendered an object, or left with a sense of limited power, we sometimes strive to exercise that control by withholding cooperation or through little acts of defiance or protest. These can in turn be misperceived as an absence of rationality or capacity and cited to justify further incursions into our agency and power by others in the name of ‘care’.  This is because authorship of our own lives is core to establishing and maintaining our identity and our sense of self worth.”

While my dad had been clear from the get go that he didn’t want to move into a care home, he had also refused to discuss the possibility that he might at some point need care and support to live at home.  This, for me, is the ultimate challenge when it comes to supporting people living with dementia in line with their will and preferences: how can we engage people in a pre-emptive discussion about something we have no wish to imagine before it is too late to do so? 

For a long time he was largely content for my mum to fill the growing gaps in his own capabilities (which could be done so privately). This was a reflection of their strong and enduring partnership since meeting in 1963 (and perhaps, his own sometimes unreconstructed attitudes). I think this helped him to live in a state of self-denial, making the task of seeking to engage him in a conversation about the future even more difficult.   So long as he felt to be in control, things were ok and in the context of their relationship he could just about do that.

Lockdown unwound his sense of control.  The restrictions were incomprehensible to my gregarious, social and routine oriented dad.  Feeling trapped, he would pace around the house and frequently leave out of the front door.  This created a further problem.  My dad was prone to falls and could not get himself back up afterwards, nor could my mum unaided and lockdown meant she could not ask their neighbours who would otherwise run to their aid.   So she had no choice but to lock the door and hide the keys.   Starved of contact, robbed of the things that provided meaning and purpose, and feeling controlled, the rot set in.  His need for support grew exponentially, as did his propensity to reject it.

I finally persuaded my exhausted mum to bring in external support from a homecare agency, and latterly a self employed care worker.  While he warmed to the carers from the agency, on their first day and despite clear instructions from my mum to supervise my dad getting dressed rather than dress him, they did the latter, undermining his sense of control.  The self-employed care worker was hired for a trial period to assist with washing, getting dressed and taking medication.  She leapt straight to coercive methods and my dad immediately rejected her. Our ability to rely on external support fell apart.  I went up for a few days to try and help, but was also faced with no, no, no. 

On the Monday morning I called adult safeguarding and began to explore the very thing he had said he did not want and which we had wanted to avoid – a care home.  But on Tuesday, having let us support him to have a wash and get dressed, something strange happened and he seemed unable to walk or stand.  We feared he may have had another TIA and called an ambulance.  Concerned about his blood pressure the paramedics took him to A&E.  While fit to be discharged by late afternoon, the hospital determined that he could not be discharged home on account of his risk of falls and state of agitation. While we could not be there and so did not see things first hand, what we picked up was his ongoing refusal to cooperate in his care.

I’ll write separately about what happened in the intervening period, but when he was finally discharged to a care home 10 days later he could not say the word ‘no’.  He could not say anything at all anymore. 

And yet still he continued to refuse to cooperate, eating and drinking little, until the point he had to be readmitted to hospital, desperately dehydrated, with his kidneys failing. Only then could he be hydrated and medicated intravenously. And yet, with his whole being, he just continued to say ‘no’ until finally, and seemingly under his own control, he was able to say yes.

Pillow

My dad had died ten minutes earlier & the priest had just left.  The nurse came back in the room, switched off the medication pump and then said to my dad ‘David, I’m just going to move your pillow.’ 

This may have just been force of habit, but even so it spoke to something we had seen among all the nurses while my dad was on that ward: the utmost respect shown for my dad as a person, not just a ‘patient’, even after his life had ended.  In doing so it showed utmost respect for us as his family.

Contrast this with his experience on a Stroke ward of the same hospital eighteen months earlier. There, nursing staff would regularly talk to one another over patients as though they were not there at all and would argue within earshot of patients and families about who’s turn it was to change patient’s pads.  It was as though the person – often struggling to express themselves as a result of their stroke, fearful about their future and the dramatic change in their identity – was actively being rendered non-human.

In South Africa, the ethical principle ‘Ubuntu’ means ‘I’m human because you are human’.   When we behave in ways that de-humanise others, we lose our own humanity in the process.  When we accord people dignity and respect we accord ourselves dignity and respect. 

Be human.

But if we need to be reminded of this, I think Andrea Sutcliffe, now Chief Executive of the Royal College of Nursing, came up with the best device when she was Chief Inspector of Adult Social Care.  She said, ask yourself, what would I expect to see if it affected my own mum or dad? 

I think we’d all hope they were treated in the way the nurses on Ward C2 at Royal Bolton Hospital treated my dad – and by extension his family – in the closing days and hours of his life. And beyond.  

Love makes your heart feel strange inside

Me and my dad, David, August 1st 2020

“Love makes your heart feel strange inside. It flutters like soft wings in flight”

Love Is Like a Butterfly – Dolly Parton

We’d been with my dad on a side ward in Royal Bolton Hospital on and off for over a week.  Sleep deprived, feeling exhausted and with little apparent change in my dad’s condition, my sister and I took a gamble that we could safely make an early morning dash home for a few hours’ sleep and to pick up some things for our mum, who wanted to stay. 

Later that morning and feeling rested, I made myself a coffee and took the opportunity to briefly catch some late summer sunshine in their back garden.  A Cabbage White flew among the herbs and over to where I was sitting.  Then, just as I was thinking how lovely it was, my mum and dad’s cat leapt into the air, front paws outstretched, ready to clasp the butterfly in its claws.  But the butterfly artfully dodged her, escaping in the nick of time and flying off over the trees.

Not long after, my mum called. My dad’s breathing pattern had changed dramatically and the nurse was now advising us to come back urgently. We grabbed our things and drove back to the hospital, worried we were going to be too late. 

But we weren’t too late. Our dad died peacefully shortly after we arrived, allowing us to be with him in his final minutes. It may have been pure chance, but the fact that he’d hung on felt like a final act of love. 

We caught him, just in the nick of time. And then he fluttered away.

David Crowther, 5 May 1941 – 12 September 2020

Somewhere north of Preston

In March 2019 I went up to the North West to stay with my dad for a few days, so that my mum could have a few days with my sister in Scotland where she lives. 

My dad’s Alzheimer’s had already begun to express itself quite markedly, especially with respect to being able to communicate, but also in accomplishing hitherto basic tasks like making himself a cup of tea and so on.  But there was plenty he could still do and he remained interested and engaged in his one true love: sport.

At Sale Sharks, March 2019

On the Saturday we went to watch his beloved Sale Sharks.  As we walked across the muddy, windswept car park underneath Barton Bridge I heard my dad muttering to himself.   Thinking he was talking to me I asked him what he said and he replied ‘I was just saying to myself “oooo I’m at the Rugby”’. The rituals, the crowd, the smell, the cold wind, the game – he loved being there, something he’d rarely managed to do for a while, instead watching matches on TV. 

On Monday afternoon we were due to meet my mum at Wigan train station, on her way back from Scotland and I would get on the train back to London, so we had much of the day to kill.  I asked my dad what he’d like to do and he said ‘let’s go for a drive.’  I asked where and he replied ‘there’s a place north of Preston – it has stuff – let’s go there’. So we set off, along the M61, then off onto the A6, north of Preston.  I asked a few more questions about our destination but got no nearer a clear answer.  We took a turn off the A6, and got briefly lost.  At this point I admit I had lost confidence so sent a text to my mum to ask for clues.  While waiting for her reply we set off back up the A6 and just as my phone pinged with my mum’s reply on our left appeared the largest garden centre in Europe, Barton Grange.  This surprised me as my dad has no real interest in gardening.  Moreover we had about 4 hours before we needed to meet my mum.  But I guessed the real reason we were there.  A lot of garden centres in the North West of England pull in the punters because of their culinary offer above all else, and well….. into the café my dad headed, straight to the counter to order…. this enormous custard slice:

He had been very clear about our destination.  And as soon as we’d finished we decided to leave, for a walk along the front at Lythm-St-Annes and fish and chips before heading back to Wigan.

Why am I telling this story?  18 months on and my mum and dad are taking their first steps into ‘service land’, drawing on some targeted support, and I find myself more and more involved in discussions about the future of care for people with dementia. I think the story of my and my dad’s weekend gets to the nub of what great support should be and do and to what is wrong with the way we support people with dementia today.  

Fundamentally great support is about honouring and reaffirming personhood and identity and putting in place the conditions for human flourishing.  That means understanding and attending to the things that hold our personhood and identity: family, friendships, place, the things we like to be and do or are known for.  It means working out what matters to someone and where they want to get to in life, however challenging that might be.  And it means going on adventures, even when the destination is unknown and focusing on possibilities rather than risks.

Ubuntu & the scaffolding of the self

In Western philosophy, public policy and law we have tended to take an individuated approach to personhood and autonomy, imagining each person as an island.  Other cultures do not understand personhood and autonomy in this way.  For example, the South African philosophy of Ubuntu tranlasted means ‘I am because we are’.  Challenges have also come from the fields of gerontology, from feminism and from those advocating the rights of people with learning disabilities, advancing ideas of shared personhood and relational autonomy.   For example, in ‘Holding One Another’, Hilde Lindeman talks of the ‘scaffolding of the self’ noting how  ‘It’s not only other people who hold us in our identities. Familiar places and things, beloved object, pets, cherished rituals, one’s own bed or favourite shirt, can and do help us maintain our sense of self. And it is no accident that much of this kind of holding goes on in the place where our families are: at home. The home…is an extension and mirror of the living body in its everyday activity and is thus a materialization of identity…our homes manifest who we are at the same time as they provide the physical scaffolding that supports who we are.’   Our homes and what goes on within them is central to our personhood and identity.   So are the things we do and the roles that we play. I was told recently of a friend’s auntie, who has been an active member of her church community, helping to run a community café.  When she developed dementia, her friends with who she worked adapted things so that she could continue to be part of the team (until the council began funding it and risk assessed her out).   I was reminded of this story reading a quote from Cormac Russell’s new book ‘Rekindling Democracy’, where he muses that ‘if empathy were the driver in food banks, we would not be able to tell the difference between the helpers and those receiving help.’   It also reminded me of this quote by Eduardo Galeano ‘I don’t believe in charity. I believe in solidarity. Charity is so vertical. It goes from the top to the bottom. Solidarity is horizontal. It respects the other person.”

Authentic love

Moreover, looked at this way, honouring the personhood and identity of one person, can only be achieved if we honour the personhood and identity of those with who they share their lives.  This means recognising my mum in her own right, as my dad’s wife and our mum, and not simply as my dad’s carer.  To dishonour her personhood and identity by recasting her as my dad’s carer is to dishonor my dad’s personhood and identity by recasting him as the ‘cared-for’ no longer her husband and our dad.  The Swedes have a name for this – authentic love – and it underpins their welfare state, aiming to ensure people are not forced into relationships of dependency against their will

Sparking the will

The question of ‘scaffolding’ also pertains to the exercise of autonomy, and the possibility that people’s will and agency can be dialled up and down, despite the onset of dementia, for reasons related to their social context.  I think we are hard-wired to seek control over our own day-to-day lives.  When rendered an object, or left with a sense of limited power, we sometimes strive to exercise that control by withholding cooperation or through little acts of defiance or protest. These can in turn be misperceived as an absence of rationality or capacity and cited to justify further incursions into our agency and power by others in the name of ‘care’.  This is because authorship of our own lives is core to establishing and maintaining our identity and our sense of self worth. I was first struck by this when watching  ‘The toddlers who took on dementia’ on BBC 3 a year or two ago.  Several pre-schoolers spent a week hanging out with adults with dementia in a day centre, matched by their interests.  By the end of the week, the psychologists noted how the adults had, to the best they could, reasserted their adult responsibilities.  Remarkably, one woman, who had not uttered a word while at the day centre for 3 years, spoke fluently to the children, giving them adult advice.  The psychologists assigned the results to it being children.  I couldn’t help but wonder whether it was equally down to not spending so much time only with other people with dementia and feeling the object of professional ‘carers’.

If this all sounds a bit academic, think about your own experience of the first 6 months of 2020.  Lockdown has deprived all of us of the things that create ‘the scaffolding’ – we’ve had to live with limitations on our freedoms, unable to be with people we care about, do things that matter to us when we want to do them, make plans for the future, or be in control of our lives.  Without those things we can all lose a sense of who we are or who we are going to be. We struggle to exercise agency when we become accustomed to not being able to. Autonomy is a muscle we learn to flex, and when not used, muscle memory is lost.

We know the horrifying toll of Covid19 on people with dementia in care homes in terms of the numbers who have died as a direct result of the virus.  But the impact of lockdown measures on the health and wellbeing of people with dementia in care homes and in their own homes is likely to be enormous because of isolation and disconnection from other residents and family, disruption of routines, not being able to be and do things that give meaning and purpose.   Many will have endured huge distress and suffered delirium.  Many will I imagine have been heavily medicated. This is because people’s identity and personhood has not been held.  The scaffolding has been dismantled. 

Escaping the invisible asylum

To these ends, we tend to think of institutions and institutionalisation as about being in a place.  But institutionalisation is really about the dismantling of the self, through the dismantling of its scaffolding: not respecting or upholding routines and rituals, familiar people and things, one’s own bed, the clothes one wears, the food one eats, the places one can go, the television one watches or the music one listens to.  This may be more likely in congregate care facilities, but it can also happen out side of them where risk averse policy and practice, or life and limb care pays no attention to personhood, identity and autonomy. That our response to dementia, characterised as a disease that is robbing the person of their personhood and identity, should be dismantle the very scaffolding that holds it together seems perverse at best, downright abusive at worse. Well-intentioned ‘reminiscence’ focused measures, such as decorating hospital wards with décor from a bygone age, or playing old films and music also risk displacing personhood and identity unless they are highly specific to and of value to the person in question.

Valuable, not vulnerable

This displacement of the person from their own life is manifest in discourse concerning dementia.  As Professor Suzanne Cahill has noted:

‘All too often we hear dementia referred to as the thief that steals the individual; the person is the “patient” or “sufferer”, a “shell of her former self”; the family caregiver is the “hidden victim” and the increase in the number of people with Alzheimer’s disease is a “rising tide/tsunami”…. Words are powerful and influence how we perceive and interact with people. These words do nothing to promote the agency, dignity and humanity of the individual who, no matter how severe their cognitive difficulties, is never gone and is still a recognisable human being that must be treated with dignity and respect.’

Language that displaces personhood and identity softens things up for violating human rights and I think underpins a culture of complacency about the lives of people living with dementia today with an over focus on finding a cure for tomorrow.  

People with dementia have a right to be in the world.

Towards truly personalised care and support

Truly personalised care is then rooted in human rights. Its starting point is to honour personhood and to put in place the conditions for human flourishing.  It aims to spark the will and to nurture agency.   It deeply understands, respects and strives to sustain the ’scaffolding of the self’.  That includes respecting and protecting important relationships and the identity and personhood of other important people, not disfiguring them by reassigning people as ‘carers’ and it means paying attention to the place the person calls home, how they live their live, to what they choose to be and do and to the roles they occupy and the breadth of their relationships.  It means focusing relentlessly on what matters to people.  It means people living with dementia can, despite their condition, flourish and maintain control over their own life.  And it comes with a narrative that celebrates the person who is, not one that mourns the person who was.

Crucially, it means going on adventures, even when – or perhaps especially when – a custard slice is all that’s waiting at the end of the rainbow.

Valuable, not vulnerable

This week (23 June 2020) I gave these remarks at an event organised by the London School of Economics, alongside Baroness Jane Campbell, Liz Sayce and Clenton Farquharson.

Acknowledging our vulnerability as human beings is not a bad thing. To be alive is to be vulnerable and hence acknowledging this is a foundation of empathy, which in turn is a foundation of building a ‘larger us’ and moving beyond the divisive ‘them and us’ that’s holding us back. Compare the inclusive approach of New Zealand’s Prime Minister Jacinda Aderne’s to President Trump being judged not by the content of his character but by his ability to walk down a ramp or how he drinks a glass of water….

It’s also crucial that inequalities in the risks we face are recognised. For example:

• Children living in poverty more likely to be killed in road traffic accidents
• Life expectancy of women with learning disabilities 17 years less than average life expectancy
• BAME communities face profound structural disadvantage and discrimination
• A third of all lives lost to Covid-19 in the UK have been those of disabled people.

Accepting that vulnerability as part of the human condition and acknowledging unequal risks is not the problem.

The problem stems from categorising a group of people as ‘the vulnerable’ or as ‘our most vulnerable citizens’.

The acid test of whether people profit from being labeled this way is: does it make us all safer and better able to lead lives we have reason to value?

My hypothesis is that it does not

It masks and amplifies stereotypes, prejudice, division and inequalities that make people more at risk or which diminish people’s freedom and opportunities

It overlooks the dynamic nature of risk, framing it all as inherent to the persons own characteristics rather than their context and circumstances.

In doing so, it precludes some people who are acutely at risk because of their circumstances but who not categorised as vulnerable, it misattributes causes, meaning solutions are missed and displaces accountability for action.

The word ‘vulnerable’ isn’t in common use. As this analysis of Google Trends shows, the word has not been in general use, but reached its peak along with the Covi19 pandemic in April 2020 and is now in retreat.

Now of course this was a period when the terms ‘clinically vulnerable’ and ‘clinically extremely vulnerable’ entered our language to denote people who were advised to take additional precautions. People were no doubt searching to understand who this applied to. But it was also a period where this specific terminology was coupled with increased references by politicians and others to ‘protecting the elderly and vulnerable’ or ‘protecting the most vulnerable’. And what a more detailed look at the trend shows is that it was the word ‘vulnerable’ alone that drove up the peak – not the specific terminology.

But while this graph suggests it’s not a word that has not been in common everyday us, we do know that it is a word that is strongly associated with disabled people, older people, with children labeled as having Special Educational Needs and with those who draw upon social care.

In 2018 the Frameworks Institute conducted a series of on the street interviews with members of the public asking them what came to mind when they heard the words social care and why we have a social care system. Almost all respondents spontaneously said social care existed to ‘look after vulnerable people who can’t look after themselves.’

While describing people as vulnerable implies extra concern and a will to protect, it is at once othering – fostering a sense of ‘them and us’ rather than ‘a larger us’. It was notable that in the on the street interviews no one talked about their own future selves or likened those requiring social care to themselves.

And that’s perhaps not surprising as the word is imbued with meaning that seems more likely to diminish the equal worth and status of those to whom the label is applied.

It conveys weakness, the lack of capacity and agency of a person to look after themselves, the increased likelihood that they might come in harms way or be taken advantage of. In the context of welfare reform debates it is used to demark a group of people who cannot be expected to assume the same responsibilities as other citizens.   It is employed to invoke compassion and to secure special ‘protection.’ It is also used instrumentally by people – particularly politicians – who wish to make their opponents appear unkind.

In doing so, it undermines status and opportunities by painting people as lacking agency or as not being in possession of any productive potential.   It promotes the idea that society’s primary responsibility should be to act as custodians, not to respect and promote disabled and older people’s freedoms. This in turn orientates public policy and services towards a culture of liability for disabled people, in which people’s freedom’s are curtailed rather than supported

Prejudice towards older and disabled people has been described as ‘the soft bigotry of low expectations’. People are regarded not as a threat, but not as productive or with a valuable contribution to make. The word ‘vulnerability’ embodies and amplifies these ideas.

But prejudice also causes us to see others who are at risk as not vulnerable. For example, black teenage boys face the greatest risk of being a victim of knife crime but would rarely be described as vulnerable. Those deemed ‘not vulnerable enough’ to receive disability benefits also face so called ‘contemptuous prejudice’ because they are considered to have agency and hence be culpable, or criminal.

For many disabled people seeking support to lead their lives from the State this operates like the medieval ducking stool: too much agency and potential for self direction and they will be denied support; deemed sufficiently vulnerable to be worthy of support means not having much of a life.

It’s also important to say that the implied ‘warmth’ here does not always act as a shield against hostile acts. Low expectations underpin narratives of burden. Research for #socialcarefuture found that vulnerability is a word used alongside metaphors of a growing threat and burden from our ageing population such as ‘demographic timebomb’ and ‘silver tsunami’.

As history has shown, the consequences of such narratives can be deadly.

Today too, the language of vulnerability & the meaning it carries has made people more vulnerable.

We’ve seen ethical guidelines concerning access to acute care for treatment of Covid19 which include quality of life and social value judgments. We have heard announcements of individual deaths or the overall death toll accompanied by the qualification that people were either elderly or had an underlying health condition, while most of us should only expect a ‘mild’ illness. We’ve heard respected scientists openly wondering whether we should be counting deaths from Covid 19 of those who would die soon anyway. We’ve read opinion pieces in national newspapers freely discussing whether whether protecting the lives of vulnerable people is too high a price to pay, or those which have said the old should now have to pay for the costs of the recovery as the price of being protected.

Does this perhaps holds clues as to the terrible death toll among people who were living in care homes? The government claims to have prioritised the safety and wellbeing of people in care homes from the outset. Not one person living in, working in or with a relative living in a care home agrees.   Their vulnerability saw them downgraded, not earning extra protection.

There is a flipside to this too. Because it is not considered a positive term it was clear when government first began referring to everyone over the age of 70 or with specific health conditions as ‘the elderly and vulnerable’ that lots of people to whom it applied disassociated themselves.

Language rooted in paternalistic benevolence (shielding the elderly and vulnerable) led initially both to othering (they must mean someone else), distancing (I’m going to argue they don’t mean me) and rejection of the advice (I don’t need protecting).  This may have changed in time, but in those early crucial days, how many became avoidably ill because the term vulnerable was used to describe the at risk group to which they belonged?

So, a term that is presumed to denote protected status in practice others and excludes, it diminishes people’s status, it obscures the causes and diverts us from the solutions and it excuses society for failing to uphold people’s human rights.   Where can we go from here?

As the UN Committee on the Rights of Persons with Disabilities advises, we must see risk as a dynamic question, not a fixed one, taking account of both intrinsic and extrinsic factors and their interaction with one another. And this must be set against an expectation that everyone should enjoy their human rights on an equal basis with others:

“Persons with disabilities are often wrongly perceived to be inherently vulnerable, when it is attitudinal, environmental and institutional barriers that result in situations of vulnerability.

While many persons with disabilities have health conditions that make them more susceptible to COVID-19, pre-existing discrimination and inequality means that persons with disabilities are one of the most excluded groups in terms of health prevention and response actions and economic and social support measures, and among the hardest hit in terms of transmission risk and actual fatalities.”

United Nations Committee on the Rights of Persons with Disabilities statement on Covid 19 and the human rights of persons with disabilities

To those ends, we need to describe differences in risk as inequalities, not vulnerabilities.

Moreover, in describing the risks people face, we must not add to them by using language that makes people less safe.

So I’m going to finish my remarks here by sharing a tweet by a school nurse that went viral back in April and which for me neatly sums up everything I’ve wanted to say:

@viki98015881 Met with a yr10 boy last week for socially distanced walk and talk. Wanted to make sure he wasn’t hungry. He explained to me that he could go into school if he wanted as was on the ‘valuable’ list. My heart swelled. I didn’t correct him @WeSchoolNurses

The right words save lives. The wrong words kill.

Sky News is reporting that the deaths from coronavirus aren't so bad because most of the people "would have died anyway some time this year"… pic.twitter.com/12PdzyhYki

— Conor McCabe (@CMacCaba) March 28, 2020

I want to start this blogpost with a thought experiment. Imagine you read something on social media referring to ‘the elderly and vulnerable.’ What picture is at the front of your mind? Now read on.

The response to the coronavirus has explicitly delineated between those over the age of 70 and/or with ‘underlying conditions’ and the rest of the population. This is because the experience of other countries has shown that those who fall into these categories are more at risk of serious illness and face a higher probability of death should they become infected. Those falling into these categories have been encouraged to take greater steps than others to avoid physical contact, including through social isolation, to protect themselves and to help avert a runaway number of hospital admissions that might overwhelm the NHS, placing many more at risk.

Whether this is the right policy, whether it could have been avoided with earlier or different action and so on is something I don’t have the expertise to comment on. But what I do think is that the public messaging about the Coronavirus has not only been confusing, but through its language and framing, I fear it may have had a major backfire effect which led to the current lockdown and could contribute both to more deaths and to longer term negative ramifications.

To come back to the thought experiment, the ‘at risk’ groups have commonly been described as ‘the elderly and vulnerable.’ Now think of the mental picture you had, and then think of people you know in their 70s (which may include yourself). How many would fit that mental picture? I don’t know if any polling was or has been done, but I expect that initially a great number of people in the ‘at risk’ groups neither recognised themselves, nor were recognised by others as falling into the description ‘elderly and vulnerable.’ How many older people do you know who would describe themselves in this way? How many do you know who would feel such language undermined their identity and status, or their cherished independence, especially when the measures were described in terms of ‘being protected’ (shielding) which would involve withdrawing completely from everyday life into the home, when everyone else was facing far less draconian measures. Anecdotal evidence I saw suggested that for some of the target audience at least, such terminology may have either missed them altogether or led to them to psychologically distance themselves from the message, rather than heeding the advice to distance from others.

In sum, language rooted in paternalistic benevolence (shielding the elderly and vulnerable) leads both to othering (they must mean someone else), distancing (I’m going to argue they don’t mean me) and rejection of the advice (I don’t need protecting). But it also, in my view, leads to something else: the very opposite of protecting people.

The messaging has focused overwhelmingly on our propensity to acquire the virus, not on everyone’s huge propensity to transmit it. Even the messaging about washing our hands and social distancing has framed it as a self-protection measure, not a mutual protection measure.   This has in turn reinforced and been reinforced by the message that the at-risk groups are ‘the elderly and vulnerable’ with everyone else told only to anticipate a ‘mild’ illness. The implicit message is that younger people – including those over 70 who do not identify as ‘elderly or vulnerable’ – had much less to worry about. For them this was largely an inconvenience, albeit one with vast consequences for their future.

More disturbingly, and with potentially longer-term consequences, is the implicit downgrading of the human rights of older and disabled people and those with long term health conditions.  This is not to deny the necessity in such an emergency to make clinical decisions based on the best prospects of treatment leading to survival and recovery.  But the framing risks conflating prospects of survival, with the value to society of certain classes of people surviving.  As Dr Frances Ryan has pointed out, the subtext of messaging that says no one need worry about it unless they are ‘elderly or vulnerable’ is – in the words of Morrissey – ‘they were old and they would’ve died anyway.’ (the explicit message in the Sky News graphic above).  This in turn helps lays the ground for access to intubation to be denied on grounds of age alone as has it has been reported has happened in parts of Italy, or because of the existence of impairments or health conditions which do not necessarily predict prospects of survival, as in the NICE guidelines on who to admit to critical care.  It also helps pave the way for the duties of councils under the Care Act 2014 to be suspended:  an emergency measure to empower councils to manage fluctuations in demand and staffing, but one which does not suggest that the ‘elderly and vulnerable’ are being prioritised.  Of course some of these things are just a far more acute and transparent expression of things that already happen.

So how could this be talked about in a way that might motivate a better response?

Imagine if the messaging cast us all as a potential ‘Queen Elsa’ from Disney’s Frozen,  unaware of our newly acquired power to cause harm by touching things and each other? That is, imagine if it had focused on everyone’s capacity to make others ill, and rooted messaging about social distancing and washing hands in the responsibilities that flow from that fact. ‘Careless contact costs lives’ if you like.

Imagine it focused on our collective ability to bring the NHS to its knees and to endanger its staff through our carelessness, while tapping into our instinctive will to support it, as we demonstrated on Thursday night, applauding its workers ahead of the surge, and gave us a sense of collective purpose and agency to do so.

Imagine if rather than ‘protecting the elderly and vulnerable’ the message was about all of us protecting each other, or as Irish Prime Minister Leo Varadkar said ‘coming together by staying apart’.  Within that framing of mutual protection and individual agency we can emphasise the particular roles and responsibilities of different groups. Rather than ‘protecting the elderly and vulnerable’, we could talk about the great sacrifice that those over 70 and with underlying health conditions will make, in their own interests and in that of their fellow citizens, including NHS staff. Rather than minimising the personal risk of the virus to younger generations, we could talk up the risk they pose to others as transmitters, with social distancing framed as an obligation not to harm others and calling upon them to support the national effort to get through this together.   In sum, imagine a message of shared citizenship and of mutual obligation.

It is too early to know what impact this period will have upon attitudes to older and disabled people and those with long-term health conditions. Nevertheless, in the social and economic turmoil that is undoubtedly to come, we will need to be highly vigilant to maintain meaningful support for the equal dignity and worth of everyone, underscored by recognition of our common humanity.

We could start by recognising that language can literally be a matter of life and death and ensure that the disciplines of framing and strategic communications lie at the heart of our work to build and shape the post pandemic future.