The Emperor’s New Clothes again

By David Jolley

It was my favourite story as a small boy and I remain glad of it. The two tricksters persuaded the vain king (or Emperor) that they could provide him with the very finest suit of clothes – for a price. The suit is so fine that it can be seen only by the wisest people – to fools it is invisible. They laboured away to sew this invisible garment and a parade was organised so that the king could show it off. Everyone said how fine the king looked and what a magical suit of clothes he was wearing. They could not own up to being fools. But one small boy, not knowing the rules, but peeping through the legs of his elders, looked and saw and said: ’The king is in his all-together! The king is in his all-together – he is as naked as the day that he was born’.

I am faced daily with a wish to find a cure or way of living with the weakness and pain, which is my right knee. There is limited help from the advice of doctors and physiotherapists, but we read and hear adverts for therapies of collagen, ginger, snail extracts and more – all supported by stories from people who believe they are being helped.

Just now we await the ruling of the FDA on the proposal that Aducanumab, a substance manufactured by Biogen and Eisai and which acts as an antibody to amyloid, be given a licence to treat people in the earliest stages of Alzheimer’s disease. As I understand it, this treatment has been shown to reduce accumulation of amyloid but has no clinical effect on symptoms of Alzheimer’s. It has previously been considered by the FDA and rejected – to the dismay of the researchers and companies involved. The share prices of the companies fell.

Yet here we are again, a resubmission and a hope that this substance can be of help to millions of people and make the companies millions of pounds. If it were to be introduced it would be a complicated and expensive business: very detailed investigation is required to confirm that a patient has early onset Alzheimer’s – minimal symptoms so little certainty as to how matter might progress, or not. This would need to be backed by a test to find high levels of amyloid. If all is positive, the therapy involves monthly intravenous infusions ongoing.

If the therapy is effective, the evidence seems to be that the benefits will not be spectacular and will only become evident over a period of years. A perfect model for a con.

The main arguments for accepting this new therapy seem to be that many people are desperate for a new treatment for Alzheimer’s disease – this would be the first since 2003. But if it is of doubtful efficacy and very costly, these arguments seem to me to be of no consequence.

The biggest hazard is that people continue to believe in the magic bullet. Money and effort are poured into a fantasy based on a model of medicine, which has delivered well in many other conditions, but frankly has not done so in dementia. Much, much more can be achieved by the application of knowledge, which we have of the benefits of non-pharmacological approaches: prevention, which leads to a healthier body and brain, avoidance of toxins and reduction of pollution, equal and generous opportunities for work and income, regular sleep, and a balanced social and intellectual round. All these we know and they deliver results. For therapy once dementia is established and progressing, we know the principles of good care and the benefits of art-based activities and social integration.

Looking back, I am not convinced that the introduction of cholinesterase inhibitors and memantine have provide a net advantage to the world of people with dementia and their families. Have we been diverted to routines that worship the pill and lose sight of the flesh and blood of caring?

I fear the FDA may let loose more demons.

FDA’s Decision to Approve New Treatment for Alzheimer’s Disease | FDA

Loneliness core

By David Jolley

The spectre of lonely old people is a recurring theme for headlines. A report from the Older People’s Task Force and Finish Group, chaired by Independent Age and the Alzheimer’s Society, is the latest to draw attention to the phenomenon and the need for action. Age UK finds that Covid and lockdowns have left old people with less energy and stamina and poorer balance. www.theguardian.com/society/2021/may/24/a-million-over-65s-still-at-risk-of-loneliness-as-uk-lockdown-eases

The charities see this as powerful ammunition in their struggles to bring donations and other funding to their cause. But how accurate and pertinent is it?

For sure it is important to be aware that loneliness is at least as common amongst younger people in the UK of 2021. Loneliness in young people: policy recommendations | Mental Health Foundation

Indeed the Office of National Statistics finds people over 75 are the least likely to say they feel lonely: people aged 25-44 are three times as likely and youngsters 16-24 five times as likely Mapping loneliness during the coronavirus pandemic – Office for National Statistics (ons.gov.uk)

Loneliness is most common in areas where there is a dominance of young people, especially where there is low employment. The areas where loneliness is rare include the countryside and places of affluence. It is said you cannot buy happiness, but it seems to help to have a decent income and a degree of wealth.

The surveys tell us that 3.7 million people over 16 say they are lonely. The proportion has increased from 1 in 20 at the start of the pandemic to 1 in 14 now. Government was already aware that loneliness had become a troubling issue by 2018 and set up a ministry and working groups to investigate it and combat it: Emerging Together: the Tackling Loneliness Network Action Plan – GOV.UK (www.gov.uk)

The initiative has been given extra urgency by the pandemic – reports of action and effectiveness have begun to appear.

Government launches plan to tackle loneliness during coronavirus lockdown – GOV.UK (www.gov.uk)

Loneliness Annual Report January 2021 – GOV.UK (www.gov.uk)

These seem rather cold, cumbersome, detached and academic. Perhaps the lockdowns have cautioned against hugging anything, but this does feel like something which requires warmth, closeness and something old fashioned to get it fixed.

£750 million is to be channelled to loneliness charities. This is a measure that government wants to be seen to care – but can money processed like this be transformed into something received as caring?

Studies of young people who are lonely say that they need youth and family services. These have been stripped away in the name of austerity. Some need the basics of enough food, warmth and clothing.

The need is for a sensible, sensitive infrastructure rather than a self-conscious charitable hand out or contrived ‘community’.

Rather than being archetypical victims in this, old people are actually exemplars of survival despite the circumstances of our times. There must be lessons to be learned from them.

Prince Charles argues the case for small farmers – small and local can-do things well and have benefits for wellbeing as well as economy.

Belonging to a natural local or faith community is an age-old pattern of life which stands the test of time: Religious Attendance and Loneliness in Later Life (nih.gov)

Let us use what we know. We can fix loneliness.

Cinderella still

By David Jolley

The Social Care sector remains Cinderella – the poor relation, doing all the work with a will, but with little prospect of a Prince Charming or an invitation to the Ball. Whichever or whatever that Ball might be.

There has been outrage that the need for improvement in funding for Social Care was not addressed in the Queen’s Speech. Outrage seems to get nowhere as the media moves on to another interesting headline, but we have quiet release of more information, more ammunition, which cries out for note to be taken and action to follow:

The importance of Social Care during the pandemic, and at all times, is made clear in a well-balanced report from the National Audit Office Covid laid bare existing weaknesses in UK government, says NAO | Coronavirus | The Guardian

The adult social care market in England – National Audit Office (NAO) Report

The National Audit Office is the natural straight bat – no frills, no messing, but providing facts and well-argued recommendations.

839,000 adults are currently receiving long-term care supported by Local Authorities.

Between 2018 and 2038 it is estimated that the number of people aged 65+ will increase by 57% and the cost of their care increase by 106%.

Between 2011 and 2019 the number of people aged 65+ receiving care fell from 587,000 in the year to 548,000 (-6%).

Unmet care needs in this age group are estimated to affect 24%.

The care sector is struggling to provide a semblance of what is needed, with everyone living under strain. The conditions and pay for hands on carers has been highlighted during the pandemic Health and wellbeing of the adult social care workforce – GOV.UK (www.gov.uk)

Government financial support to Local Authorities fell by 55% between 2011 and 2019.

Profits are less than 5% of investment for 55% of independent sector care homes and 39% community care providers.

Care home occupancy fell from 90% to 80% during the pandemic – further compromising their economics.

Government acknowledges that the payment which Local Authorities make for care provided is ‘less than a sustainable rate’. This means that all services are under strain and that self-funders are required to supplement people who are dependent on the Local Authority.

Government also acknowledges that the 1.5 million people who work in the care sector require better training, career development, recruitment, retention as well as terms and conditions.

There has been no publication of a social care workforce strategy since 2009. 

The NAO makes recommendations for urgent action:

a) As a priority, set out a cross-government, long-term, funded vision for care, taking into account the views and experiences of people who provide and use the facilities;

b) Develop a workforce strategy, in line with its previous commitments, to recruit, retain and develop staff, aligned with the NHS People plan;

c) In conjunction with the Ministry, Department for Work & Pensions and local government, develop a cross-government strategy for the range of accommodation and housing needed for people with care needs, and how to fund it;

d) Assess the performance and cost data it needs to gain assurance over the system’s performance as a whole and the potential costs to the sector of providing these data, bearing in mind its current proposals for enhanced accountability and oversight;

e) Address significant gaps in the performance and cost data it collects on care, particularly on self-funders and unmet need. In doing so, it should be mindful of, and assess, the potential burden on local authorities and care providers;

f) Consult on options for enhancing support for local commissioners, which promotes an integrated approach and incentivises commissioning for outcomes; and

g) Explore with CQC how best to increase visibility of and transparency over providers’ financial sustainability and costs, bearing in mind operational and legal practicalities.

We have been encouraged by MHA and Age UK to write to our MPs about this. We are provided here with information to support the arguments.

Pink

By David Jolley

Pink was always a colour associated with something out of the ordinary: We had the Saturday Pink, which came ‘hot press’ to share the results of football games which had been played in the afternoon. There was none of this Sunday football and television was reserved for the FA Cup Final and other very special matches. The Pink came on the trolley bus at about 6.30pm. There was always a queue of excited dads and children – mostly boys. It gave us all the national results and detailed accounts of games involving local teams: Wolves, Walsall and Shrewsbury.

To be ‘in the pink’ is to be in the best of condition.

This is the week where we learned of the death of Graham Pink, school teacher and nurse who drew attention to failings in the care of older people in hospital.

Graham Pink obituary | Nursing | The Guardian

Yours sincerely, FG Pink | Society | The Guardian

He came to fame through a series of letters written to people in positions of responsibility and copied to his local MP Andrew Bennett. In these he drew attention to unacceptable levels of staff on wards caring for old people in Stepping Hill Hospital, Stockport where he had become Charge Nurse covering nights. ‘Nights’ is a long shift and a time when other staff are down to skeleton numbers compared with ‘Days’. Few qualified nurses, supported by poorly paid auxiliaries, doctors on call but rarely visiting wards unless in response to an emergency or death. In these long hours patients will be at their lowest ebb. It is in the night that most people die.

The situation was not unique to Stepping Hill. People like me knew it to be common throughout the country. We knew it but lived with it. Graham Pink was like the little boy in the children’s story who declared: ‘The King is in the all-together’ when he peeped at the parade in which the foolish king had been duped by rascals to believe they had produced a fine suit of clothes, which only the foolish could not see.

Mr Pink was sacked on a jumped-up charge. His name was subsequently cleared, and he was paid a modest compensation, but he was not allowed back to his job. He gave his time to travelling the country to speak on the issues of staffing and care for older people and raised awareness, including in Parliament.

Care of older people within the NHS and Social Care remains a Cinderella. The covid crisis has brought more light to the state of care and greater appreciation of the staff who do the caring. Yet there has been no move to improve their conditions of employment. There is anger that social care for adults was not addressed in the recent Queen’s Speech: Anger over failure in Queen’s speech to set out social care plans | Queen’s speech | The Guardian

MHA and Age UK have protested and ask us to support their campaigns to urge awareness and to take action: Home – FixCareForAll (mha.org.uk)

www.ageuk.org.uk/our-impact/campaigning/care-in-crisis/

Graham Pink did not live in vain. Let us hope that we can live to see the time when this matter is addressed with honesty, compassion and appropriate resources.

The obituary tells us more about him: his life in and around South Manchester and his enjoyment of the countryside and support for YHA and other organisations for the benefit of younger people.

As other Manchester voices say – we live amongst heroes: (267) M People – Search for the Hero – YouTube

No place like home?

By David Jolley

2020 has seen more deaths in England and Wales. Most of the excess deaths are accounted for by Covid-19, which displaced patients with other conditions from hospitals to produce a marked increase in the number dying in private households:

Deaths from all causes increased by 14% in England and Wales during 2020. 97% of the excess deaths were related to Covid-19.

There was a 20% increase in deaths in private households. These deaths were caused by a range of conditions, including cancer and heart problems, which in previous years would have occurred in hospital. Covid deaths were concentrated in hospitals and care homes. (Excess deaths in care homes 10%)

Deaths at home increased by a third in 2020, while deaths in hospitals fell except for COVID-19 – Office for National Statistics (ons.gov.uk)

The statistics show an increase in deaths at home with dementia by 64% and for Parkinson’s Disease by 65%.

This is a scenario, which many would have been keen to see – more people dying in their own homes than in general hospitals. But this must have put tremendous pressure on families and on community health, and social care services. So much ‘health care’ has been conducted with ‘no touch’ techniques via telephone or the internet. I wonder what life in these last days at home has been for individuals and for those caring for them.

Google has not pointed me to publications where people have looked into this. Is it too late to discover the outcomes from this natural experiment?

What Zoom can do

By David Jolley

I am not really at ease with modern technology. My mobile phone is just that – voice phone and texts but none of the tricky stuff I can just about do with the laptop of desktop and the internet. I just love being with people for real. It has been the joy of a life in clinical medicine (psychiatry) to be with people, to listen to stories sitting close, sharing smiles and tears, holding hands if this is appropriate. Problems, which might sound to be fearsome, insoluble, destructively dangerous can so often melt in the warmth of shared trust and closeness.

But Zoom has its virtues – we are meeting people – at a distance – we might never have done before. We are saving on time, expense and stress of travel. We remain available at home and in the locality.

I have been privileged to be involved with a number of sessions designed to engage people with dementia and their carers (I qualify as someone organising activities for people with dementia and their carers – it is informative for me and reassuring for others to see a familiar face and hear the voice across this medium). The first venture was a polished series involving music, songs and memories – songs, which pull at your heart strings and reactivate memories, which you love and cherish at the risk of emotions you usually keep quiet.

A second series also uses music and stories from the past and settings, which we have probably shared some time or other. This time there are quizzes – words, pictures, tunes – delivered with friendly unassuming banter. The songs get a bit muddled, but we get through.

What is wonderful is to see the faces come to life as mum with dementia knows the words or gets the answers ahead of carer-daughter. We hear of lives, which began in faraway delivered in an accent which still betrays those origins. And who knows where the original Bull and Bush is located? The gent with long hair and a bushy beard which has rendered him incognito up to now.

And we share all this quite naturally across our matrix of squares. Some with a cuppa to hand.

Death rates in Europe and the USA

By David Jolley

Amongst the interesting headlines this past week was one, which drew attention to the fact that, on average, your chances of surviving to old age are much higher in Europe than in the USA. Study reveals alarming trend in US death rates since 2000 | US news | The Guardian

This is a phenomenon, which has been recognised for several decades, but the gap is getting wider rather than narrower. The greatest differences are amongst young adults – in their 20s and 30s where the excess of deaths is of the order of threefold. Deaths in these age groups are mostly from road traffic accidents, homicide, suicide or from accidental overdose or other consequences of the use of illicit drugs Why Are Young Americans Dying in Increasing Numbers? (beckerlaw.com)

People would say that a great deal could be done to prevent this early loss of life by revised legislation.

In 2017 it is estimated that the loss of lives compared with Europe was 400,732. Deaths from Covid-19 in the USA currently total 567,000.

Surprisingly the differential of death rates is reversed amongst residents who are aged 85+. This phenomenon has also been recognised for at least two decades:

Excess mortality in the United States in the 21st century | PNAS

US Mortality in an International Context: Age Variations (wiley.com)

Survival after the age of 80 in the United States, Sweden, France, England, and Japan – PubMed (nih.gov)

Is the US Old-Age Mortality Advantage Vanishing? (nih.gov)

Explanations for the better survival of older Americans include suggestions that they receive better health care than their European equivalents. This is a challenge to us. Nothing I have ever read has encouraged me to believe that care for older people overall in the USA is as good as that in the UK or Europe. Perhaps that is blind prejudice. It is certainly something worth closer study.

Is it not possible that the relatively fewer Americans who have survived into late life are selected survivors?

By Hand

David Jolley

Our original neighbour Mrs C had been a late and unplanned addition to her family. As such she was deemed more than her mother could cope with and so grew up in the home of her grandmother, visiting mum only on high days and holidays. I think she was well cared for but was as if an only child of elderly parents, perhaps a quieter and more austere life than might have been for her sister and brothers who stayed in the family home.

Certainly she felt herself distanced and low in the pecking order. She referred to this as ‘I was brought up by hand’.

I have always taken her to have meant that she received ‘good-enough’ practical care but it lacked the warmth of exhibited love you hope to find in family. That is my take – and I find that this does not quite fit with the original accepted usage which applied to babies fed by spoon or bottle when mother’s milk failed or they had to be given to someone else to care for them. There is the extension of this in the character and behaviour of Mrs Joe Gargery in Great Expectations. She is Pip’s much older sister and had brought up series of babies for others – gaining a good reputation for her successes in rearing them ‘by hand’. She was also a fearsome woman – easily disposed to clout her husband or Pip should the mood take her or should they disappoint her expectations of them. So ‘by hand’ has gained the additional suggestion of rule by force. I do not think Mrs C suffered violence but she did feel she had missed out on some aspects of loving care.

Just reflecting on communication with older people, some with memory problems, who can come again to health walks organised via our park group, and others who support the park. Many people can be contacted at the touch of a button via the computer – but this special crew require a phone call or written letter. This means exercise of my fountain pen – a return to the days of school and university – and delivery around local streets – by hand.

The process brings us closer together – checking and crafting the address and name – walking the garden path, negotiating the letterbox and appreciating the plants, lawn and garden furniture which they have chosen.

A quieter, more soulful connection than Google or Yahoo might have delivered.

Olga Tokarczuk’s ‘Lost Soul’ is in praise of slow. ‘By hand’ is a way into this – for any of us, perhaps most surely for people who have problems of cerebrating fast. Pictures help too.

‘Our Street’ – a moving picture

By David Jolley

Number 50 has new people in it. We are not quite sure who is who yet but we will. We saw the previous family grow from one infant in arms to two running about and learning to ride bikes along with mum and dad. Stars of our local school – they have been whisked off to Yorkshire at the behest of work. There have been six or seven families through that house in the 37 years we have lived here.

We are now the longest established neighbours. When we came we were surrounded by households with firmer roots: Barbara whose husband’s family had built these houses in the early 1900s, Win who came here when she was three and stayed on into her 80s, Wynn who never married but was highly respected in ‘the office’ of a local factory, May who was brought up in a number 50 but had gone away, including some years in foreign parts but had returned live at 35 into old age. These was a sense of peace and continuity – this is how it should be and will be. And to look at them these houses are unchanged – so much so that we boast ‘Conservation Area’ status.

But people come and go. Some change the insides of their homes quite dramatically. We wonder why and give thanks that we have the benefit of hoisted racks in the kitchen to dry the washing, original kitchen cupboards and a pantry, and a fireplace which gives ventilation and a focus.

But there is another version of continuity evident amongst our older friends, especially those linked via the church. This is what happens when life within ‘the family home’ is given over to a move – to a smaller house, a bungalow, or a flat. There new bases do not always remain fit for purpose as needs change so that a further move is contemplated – to a sheltered flat or care home. Properties become known within the circle – Jim will move into the flat which Ethel moved into before she needed to go into Handsworth. Henry and Victoria have their names down for the next vacancy at Ashton Court where there are already four Methodist families.

But most of us are still most at home down the street where we grew up madness our house – Google Search

Pictures in the memory

By David Jolley

Thursday tea time at our house meant a visit from Auntie Annie, on her way home from her part-time job doing ‘the books’ for a town-based hairdresser (barber). Just an ordinary tea, I think, but stories of the week and time to see the new issues of The Beano (me first) and Dandy (my brother first). In the early days I would scan through the stories using just the pictures – you could get the sense pretty quickly. Then Annie would read out to us the words in the bubbles so that we got full value from the jokes and cheeky comments from Dennis the Menace, Corky the cat, Desperate Dan, the Bash Street kids and more. We would never use words or phrases like that!

It is marvellous to know that books with pictures have achieved new status. Graphic comics and novels have found great success and I read about a publication from Olga Tokarczuk and Joanna Conceja with the intriguing title: ‘The Lost Soul’ which we must investigate A Nobel winner turns to picture books: ‘It is a powerful, primeval way of telling a story’ | Books | The Guardian

As we struggle to make sense of the world in which we have lost so many friends in a short but merciless year, those few photographs we took 50, 60 and 70 years ago find a new value. We can remember that school outing and the weekly essays, which imagined adventures in the castle and surrounding countryside of Ludlow. What a day it was when we actually visited this land – so near but previously unknown, clutching our home-made satchel with sandwiches and a drink – and the brownie camera. We travelled on an ancient double-decker bus, watching the roads and houses and hedges going by. On the way home we stopped to gawp at a castellated manor house. That is what ‘Miss’ said it was. We were tired at the end of that day.

And now another of those tired and smiling children in faded black and white, has grown up, grown older and died before we thought they would.

‘What’s the use of a book without pictures?’ (Alice)

But pictures make their own words.