Should we be surprised?

The Care Quality Commission finds that care homes serving more self-funders provide better quality of care than those used by more residents dependent upon local authority funding. Put another way, when you look at homes which are performing well they are looking after few people sponsored by local authorities Worst care homes more likely to have poorest residents, official data shows | Social care | The Guardian.

In homes rated inadequate 69% of residents were state funded, in homes rated adequate 53% were state funded.

The figures come from a reworking of CQC reports by ONS Care homes and estimating the self-funding population, England – Office for National Statistics (ons.gov.uk)

This gives a fascinating review of the characteristics of homes and their residents. There were 143,774 people living in care, a third being self-funders. Self-funders account for 45.4% of residents in the South East, 24.6% of those in the North East. Rural homes house more self-funders. Homes with fewer than 19 beds house only 15.1% self-funders. 75% of self-funders live in homes which cater for people with dementia, this is so for 70% of state-paid residents.

Payments for placements by local authorities averaged at £600 per week. Costs to self-funders were usually in excess of £1,000 per week.

Despite the details, the picture is blurred – It is understood that homes make ends meet by subsidising the care of state-funded residents from the higher payments from self-funders. This is clearly not reasonable. Some residents who were originally self-funders will have become dependent on state subsidies as their capital has been exhausted. Our discussions at Dementia Conversations have revealed that homes will barter with families about the scale of top-up payments rather to adhere to an advertised price and lose a resident. People are astonished and bewildered by such practices. There are heroic examples of homes which provide excellent care on a very tight budget, but overall the message is that you get what you pay for.

No surprise there

Trusting

I remember an article in a Sunday newspaper many years ago – probably The Observer- though it was while I was a student in London and I am not sure I could afford such a weekly treat in those days. It was about the care of your tyres – something for an owner-driver of a minivan to find fascinating – Those little wheels went round lots of times in getting from place to place and the loss of thread, not to mention the risk of nails in the roads, meant you should check the tyres quite often and try to be sure their pressures were correct and balanced.

The essence was that tyres do not like doing nothing and will be at risk if your car simply rests beside the road or in a garage. On the other hand they do not like doing anything too quickly – acceleration, deceleration, starting and stopping all put a strain on them and wear away the thread. Cornering is another problem – putting strain on the sidewalls. Humming along at a steady pace on a straight road is what tyres do best.

Well – it seems sensible to be aware of what causes harm to tyres – but if we are to get anywhere we sometimes have to deviate from their sedate preferences.

Some people thrive on taking risks. Much of the entertainment of funfairs and the like depends on putting people into situations which are scary – but hopefully safe. Most of us will accept a degree of risk – but not too much and not too often.

The covid pandemic has placed us in a situation where we have lost confidence in our previous experience of normal life – meetings with strangers, friends and even close family have been labelled as potential hazards – and prohibited for our own protection by law. We are asked or required to wear masks. We are asked or required to wash our hands or to use hand-gel at every going out and coming in. My reading is that covid is mostly spread by respiratory droplets – is hardly a hazard in the fresh air, but more likely to be transmitted indoors when in close proximity with others. Wearing a mask when walking in the park or countryside is probably unnecessary. Not wearing a mask in the supermarket – may be reckless and irresponsible. But I am not sure that handwashing beyond the usual civilised routines is necessary.

I need to remember a code for the burglar alarm – or risk a dreadful noise every morning which will wake the household and part of the street. I need a code to use my bankcard for purchases above a certain cost – or risk embarrassment in the queue

Rules have changed on the suitability of petrol for certain makes of car – Is mine one which is affected?

But mostly I am thinking about the science which tells us of risks which increase our chances of developing illness which will lead to disability or earlier death.

This week we are told that being too wide to fit into jeans we wore when 21, increases the likelihood that we will develop Type 2 Diabetes and all the hazards which this predicts  People who ‘can’t fit into jeans they wore aged 21’ risk developing diabetes | Diabetes | The Guardian

Somehow I guess very few people will be surprised to hear this. Some people have remained naturally slim. Others have put on weight and are aware of the hazards – too many have become overweight or obese. As with smoking, drinking alcohol or using other psycho-active substances, the knowledge of risk is there – multiple risks covering the full span of physical health, mental health, social and economic wellbeing.

We are learning more about the impact of life-style on the risk of developing dementia in later life. After being a hidden knowledge for too many years, the probability that a career in professional soccer predisposes to dementia is now widely understood – Jimmy Greave has recently died with dementia, both Jack and Bobby Charlton – and several others from the England tram of 1966 have fallen victims. The systematic studies from research in Scotland on professional footballers has sealed the knowledge.

Hazards are not limited to dementia – motor neurone disease and Parkinsonism are also found more commonly. And the risks are not limited to people who head the ball a lot, or event to soccer – all contact sports are guilty – and even short exposure is now being seen to have measurable effects Rugby players’ brains affected in single season, study suggests | Rugby union | The Guardian

These covid months have shown that some people will not listen or understand and will behave in ways which are dangerous to themselves and others. That’s not right and we must have ways to help them see sense.

But I am concerned that many of us are becoming so anxious and risk-averse that we will lose the joy of living by losing all trust in our surroundings – the physical environment and people. There is a middle, safer road which allows us to join n thrilling and engaging activities which lift the soul – but do it in moderation and with balance and regard for others.

Assisted dying

These covid months have brought death closer to the lived experience of many of us. More friends and relatives have died. More have died at home. The circumstances of death have been dreadfully changed by the social isolation and distancing rules.

In amongst this, a campaign to change the law to allow or require doctors to end the lives of people before their natural death when they are faced with no prospect of recovery but ongoing extreme and intolerable pain, has gained ground.

The BMJ of September 11^th carried several articles reviewing the situation. September 14^th – The BMA changed its policy on this issue to one of neutrality from that of opposing a change in the law.

During my lifetime there have been changes in law in this country which reflect very marked modifications of views and beliefs on basic life values: the suicide act 1961, capital punishment 1965, Abortion act 1967, Sexual offences act 1967. I was young when these matters were being decided on. At the times and since, I have been comfortable with the spirit and details of the new legislation.

A change of law now, to make assisted suicide/assisted dying legal in this country and for it to become part of medical practice causes me hesitate.

Is it necessary? Those in favour of a change cite dreadful scenarios of people experiencing unresolved pain and distress for weeks and more, despite the attentions of the best of medical practice and palliative care. Yet doctors involved with hospices and palliative care are amongst those most surely against a change of law. They know that a proper use of existing law and available medical expertise means that almost everyone can be assured of a reasonable experience of dying – Dying is something which many people have dreaded throughout their lives, so it may never be easy or comfortable – but it can be helped to an objectively acceptable passing, Palliative Care doctors would say. My own limited experience of work within a hospice leads me to agree with them.

Polls of the general public 2015, 2019 and 2021 have found at least 70% in favour of assisted dying for those who are within 6 months of death and suffering intractable pain

Some high-profile religious leaders declare they find nothing in scriptures which rule against assisting death in such circumstances. Among the BMJ articles September 11^th Archbishop George Carey and Rabi Jonathan Romain take this position and cite Desmond Tutu and Reverend Canon Rosie Harper as sharing their view. They provide quotations from Ecclesiasticus 30.17 and Ecclesiastes 3.2 which can be interpreted as supporting their view.

A 2019 survey found 82% of Christians and 80% of religious people of all faiths supported a change to legalise Assisted Deaths by doctors. As things stand the Roman Catholic Church, Anglican churches, Greek Orthodox Churches and Muslims are against a change. Liberal Judaism, Unitarians, and The Religious Alliance for Dignity in Dying want the law to be changed. Religious Alliance for Dignity in Dying – Dignity in Dying

Proposals for change and all discussion about the possibility would require that the person requesting help to die must have mental capacity and not be suffering from a mental disorder that would change their appreciation of their condition and prospects (such as depression). Their decision should be made with a free will and not subject to pressure or expectations from others.

There is very little discussion about people with dementia. I have real concerns that a combination of a law to allow Assisted Dying and Advanced Directives might push us toward a situation where people feel obliged to request their death be brought forward if/when they require care because of advanced dementia. This might be because an individual finds the prospect of life changed by dementia to be abhorrent, or to reduce the prospect of being a burden in a number of ways to their family or society, or to avoid costs. Any and all of these reflect prejudices within our society which would eliminate people who have or who develop such characteristics. Such a tenet is unacceptable – a slippery slope.

It is the case than Assisted Dying is accepted in Spain, New Zealand, Tasmania, Western Australia, Canada, Switzerland, Belgium, Luxenberg, The Netherlands, and other countries. It has been legal in Oregon for 25 years. The BMJ reports that there has been no misuse of the facility. Yet there are troubling stories of people who have been killed in keeping with their Advance Directive even though in their altered state with dementia they would resist a lethal injection. Struggling woman with dementia euthanised in Netherlands » MercatorNet

The rights and views of people with dementia when they lose capacity should surely be respected

Gold or cold old age?

The image of last week from the Guardian comes with the sketch made by Van Gogh of Adrianus Jacobus Zuyderland in 1882 – the sketch has been hidden from public view since 1910 – kept safe by a private collector. It is now to be seen in The Amsterdam Museum. It depicts a balding old man, head bowed and hunched – his face hidden but what can be seen speaks of pained distressed at his own condition. Pencil drawing of old man identified as Van Gogh work | Vincent van Gogh | The Guardian

Was it really so bad? Is this not a pose to fit the needs of the artist? We read that Van Gogh used the residents of alms houses run by the Dutch Reform Church as models – they did not receive much payment – but some company and coffee. The image fits with Pat Thane’s report on the conditions of old people in England at that time in her wonderful. ‘Old age in English History.’ Best to be reminded. Fascinating to read the stories of life as such a struggle with barely enough flesh to cover the bones, let alone move them. Cold, wet, the only purpose being survival against all this.

It makes us glad to reflect that life for old people is so much better despite all the threats and hazards which we face.

This week’s Dementia Conversations brought Barbara Lewis back to see us – Zoom does make it easier for contacts even a few miles away. She oozes compassion, care and determined practical optimism. In the beginning she found solutions to the embarrassment which can stem from the need for help with toileting when dementia comes advanced. Beautiful cloth arranged in a sort of reversed cloak does the trick. She still makes and shares these. But mostly she was wanting to tell us about Empowered Conversations:

https://empowered-conversations.co.uk/ and here is a specific link about Moving Beyond Words 

https://empowered-conversations.co.uk/?s=moving+beyond+words

If anyone would like to know more about Come & Sing on Fridays it is probably best to email Emma Smith – our project leader EmmaSmith@ageuksalford.org.uk. They could contact me but it’s probably better to keep things central.

This little clip explains Empowered Conversations in song – it might amuse  https://www.youtube.com/watch?v=3Ouo9drbd1k& list=PL8te5nndtk7nmuuuoedWW8hrk2mtht9Bt

 Empowered Conversations has been holding webinars throughout the pandemic with academics, carers, people with dementia etc. They have been very popular and people have found them useful. They can all be found on youtube and in particular there are two by Maggie Ellis in which she explains Adaptive interaction. You will find them all on here https://www.youtube.com/channel/UCFNbJy3qjohlnExG_JRZOcQ/videos?view=0&sort=dd&shelf_id=0

Barbara’s website is https://www.limonattire.com/

So Barbara’s mission is expanded from the bathroom in Tameside to a wider world of joyful communication, despite the presence of dementia – She and her colleagues – retired GP, Speech and Language Therapist, Academic Psychologist and others – use rhythm and song to break through the barriers which make ordinary speech so difficult to make and to comprehend. It is a beautiful learning – ‘Golden’ as we might say in some parts of the Midlands/Black Country.

We are better off for the social economic advantages of these time, but also for the thoughtful application of learning to complement what medicine can do

Funding social care and health care

By David Jolley

It is a start. Perhaps begrudgingly I have to be glad that the current Conservative Government has made clear that we need to improve arrangements to fund the care of ill and disabled people.

The need is to recognise the number of people who require help, to accept this and to make fair and appropriate care and treatment available to them. Wishing it away, heads in the sand, has been happening for too long. The victims are the most vulnerable people in our country, and the families who love them and do what they can for them.

Problems are compounded by perverse incentives for money to be wasted when it is soaked up by overly bureaucratic requirements such as those associated with DoLS assessments or sucked into greedy profiteering such as we suspect of some private sector care companies and other providers of facilities in the Covid-19 pandemic.

For many people the urgent requirement is trustable, reliable basic care. Not rocket science itself – the rocket science is in how to attract, train and support good carers and to monitor and rejig the care they are able to provide as needs change over time.

But there is need for more complex interventions when problems become severe and multi-facetted. Thus the creation of a service which reflects the spectrum of needs within the current population, rather than historic boundaries between agencies is what we want. There have been new discoveries, which will save time and money. There are others, which have expense but will reduce adverse symptoms/suffering. Open handed application of what we know should not be impossible, not be painful.

How much and how dispersed are matters to be worked on. We are hardy going to get it right fist thing. We start where we are and improve things some at a time – revise and so on – iteratively. That is how living systems work, survive and grow.

Having accepted we must do something and agreed that we will do something has begged the question of how resources will be redirected to make changes possible. In this the politics of the current government are exposed. Already there is the threat of inventing or aggravating discontent between old and young, rich and poor: increases in National Insurance will take money from relatively poor working age people. They will have little impact on the very rich and most of the benefits will be to current generations, and future generations when they are retired and old. It is a formula for conflict, which calls for quiet clearheaded negotiation to get from where we are to where we ought to be.

At least a start has been made:

Johnson faces Tory battle over tax rise as cabinet reshuffle looms | Boris Johnson | The Guardian

Boris Johnson has created a ‘social care plan’ without any plan for social care | Frances Ryan | The Guardian

Archbishop of Canterbury criticises social care tax rise | Social care | The Guardian

Clare Wenger – Close to us

By David Jolley

Over the years you meet people, have time together and then go about separate business but never forget the impact they made on you personally and on the field of common interest. Seeing the name of Clare Wenger in the Guardian Obituary columns this week – with the most wonderful photograph of her engaging, mischievous face – brought back good memories.

My first contact with her came when she spoke at a residential meeting of the Royal College of Psychiatrists Section (now Faculty) of Old Age Psychiatry. Not a psychiatrist, she was very much one of us – devoted to understanding the lives and experiences of older people in health and sickness or disability. How they came to be the people they were and how they related to family, friends and the wider world.

Some of us think and talk of ‘villages’ within the townships or cities where we live – the grouping of people, streets, houses, shops, churches, schools, pubs, health centres, libraries, markets, leisure centres, parks and so on which are the fabric of where we are known and know. Clare Wenger had taken an exploratory approach – starting with the older person(s) – who were contributing researchers – to learn about them and then to map out their contacts – to reveal personalise networks. The size, shape and content of these depended (depend) on their personal characteristics, preferences and the mini-world they had constructed over time. Within this it is possible to identify natural typologies – this opens the door to understanding – and to work with the individual and their family and friendship circles to make the best of things and to grow when faced with the new restrictions and impairments which late life may bring – and hence bring people to services such as ours (Old Age Psychiatry/Psychogeriatrics) or geriatric Medicine, or Social Services , or any number of voluntary/charitable ventures.

It was gently and modestly done and presented. It is a beautiful construct and will be of usefulness for ever.

We had an extended contact with Professor Wenger in our activities as Dementia Plus from Wolverhampton – she helped, encouraged and taught us with unassuming generosity.

Sadly we read that when she herself was in need of care for illnesses, she found that her work (and ours) had not made the impact we would have wished BBC NEWS | Wales | North West Wales | Patient’s dossier on ‘dirty’ ward. And so, we are encouraged to carry on campaigning.

Thank you Clare Wenger obituary | Ageing | The Guardian

A support network typology for application in older populations with a preponderance of multigenerational households (nih.gov)

Togetherness on line

By David Jolley

We are beginning to feel the water of a return to meeting close-up with others we may not know intimately. It feels strange. Faced with a row of four people sitting shoulder to shoulder I hesitated at their invitation. With apologies I explained how unsure I felt – and sat at one seat distanced from the nearest. I soon was to find myself literally outflanked as others sat naturally on either side of me. Hopefully we will all be OK.

In our activities with Christians on Ageing we have rejoiced at the success of conference calls – monthly online seminars on relevant topics. We have learned so much and interacted with people from north and south, east and west without difficulty, inhibition or cost in terms of time or travel. We are keen to get back to in-the-flesh meetings for their advantages of informal chat that can open up and explore concerns and interests and simple gossip, so productively and with somehow a deeper contact.

For this year though we are offering an on-line ‘webinar’ on September 29^th instead of attempting a conference – we hope to meet a wide audience – the topics have identified themselves from the experiences and questions of this year.

Older prisoners: There are more than 5,000 men aged 60 and over in UK prisons (total population 83,618), 161 of these old men died in prison during the 12 months to June 2021

A session which will be presented by Lynn Morris and the company of Journeymen Theatre and Chaired by Gerry Burke and Joseph Cortis.

 ‘Back door parole’ is a play which highlights issues relating to the lives of older men who are incarcerated with disabilities, illness and death. We will present extracts from the play and facilitate discussion and collect views in small groups

There will be a lunch break, followed by Music as therapy in dementia by Kathryn Rowland (All in Sound) – Dementia is recognised as the most feared illness amongst people over 50. Perhaps overshadowed just now by Covid-19 it has made people more vulnerable to the virus and will remain a major source of impairment, illness and distress when the pandemic is hopefully contained. Kathryn will offer an explanation of music and its power in dementia – and allow us to share an experience of on-line singing for dementia. Introduced by Barbara Stephens. 

We will then chair An exploration of end of life issues: Dying, death and assisted dying:

For many of us, these recent months have brought us closer to death than ever in our lifetimes. The Covid-19 pandemic has increased deaths in this country and throughout the world, some deaths have followed directly from the virus, others by its indirect impact as health and care services have been stretched and people have been fearful to seek help symptoms of other illnesses. This has led to wider contemplation of life, death and the experience of dying, how this is approached and even its legal framework.

These matters will be considered in short addresses by two speakers: Graham Hawley who is a retired Methodist Minister and James Woodward who is Principal of Sarum College. He has published widely and was part of the Commission on Assisted Dying, which reported this year. We will break into small groups for discussion and thoughts.

And we will finish with an open discussion asking people to talk to Current and future needs for the work of Christians on Ageing. Christians on Ageing is an established but growing and responsive ecumenical organisation. In this session we will be pleased to hear of initiatives around the UK and look for suggestions for topics we should be addressing and how they would be best approached and delivered

This webinar is free for all attendees. We will be very pleased if delegates who are not yet members decide to join us. Support will always be welcome.

HOW TO BOOK
Visit our website www.christiansonageing.org.uk. 

Click on ‘Conference’.   

Go to ‘Book here’.   

Complete form and send.

Nothing wrong?

By David Jolley

We were presented with a series of beautiful brain scans – showing no pathology in a middle aged woman who had complained of failing memory – substantiated in the practice of everyday life by her husband.

Physically apparently well. No obvious emotional or social difficulties.

A mystery

There is an urgency to achieve a diagnosis. Over and again we read of individuals and families complaining that it took years – too long – to get the right diagnosis and that they suffered as a consequence.

More recently we are hearing of people who find themselves perfectly OK ten years or more after being told they have Alzheimer’s disease. Some will take clinicians to court for misdiagnosis.

I am reminded of Eliot Slater’s famous paper published 1965 in which he followed up 85 out of 112 patients diagnosed with ‘hysteria’ at the National Hospital for Nervous Diseases, Queen Square, London in the 1950s www.bmj.com/content/bmj/1/5447/1395.full.pdf

These people were quite young – average age for men being 42. For women 37. Yet during the follow up of 9 years 12 had died, 30 had become disabled and only 19 were symptom free. Of course we have much more powerful techniques to investigate in 2021 – but the point remains that even in-depth investigation at one time has its limitations. History for multiple sources, physical examination as well as investigations represent the best of good practice – but they must be supported then by careful follow up. Things may get better. They may get worse – but for sure the only safe model is for patient and clinician to remain in touch – sensitive to the emergence of new symptoms and to clues about underlying processes as they emerge.

We cannot always get things right first time – but if we travel together and share in the learning – we will get it right in the long run – and be forgiven for uncertainties on the way. The fashion for services, which are fragmented between individuals and agencies is wrongheaded and vulnerable to errors, which are not quickly realised and corrected.

New lamps for old?

By David Jolley

This week an enthusiastic friend rang to say that doctors will soon be unnecessary in the diagnosis of dementia. He had seen a story on TV about work being done in Cambridge – Artificial Intelligence and brain scans can do better than doctors Artificial Intelligence may diagnose dementia in a day – BBC News

There are people in our Dementia Conversations group who will be excited by this – just as much as my friend. Others will expect me to put a dampener on the expectations – we are used to the hype of press releases spluttering out in the cold light of day and beyond the call for research funding.

Our Friday in-house seminars divert every few weeks to a session linked with the brain scan specialists. It is a fascinating experience as we are treated to interpretation of scans online – the pictures set in the context of clinical presentations from the team looking after each patient. The combination of scanning and clinical assessment – supplemented by time and careful follow up – is impressively effective.

It is the combination which works – and the scans alone give empty information and guidance. All findings and interpretations have to be applied with the world of biology and humanity in which an individual is living and will live and die. Those patients who are scanned in Salford represent a small minority of the people with dementia who become known to services. The prospect of making such scans and such interpretive discussions available to everyone is mind-blowing for Greater Manchester, let alone the whole country, let alone the whole world. And do we need this to be able to help people with the condition?

I would say not at all. A good diagnosis is achieved by taking a history, examining the patient, obtaining and interpreting essential investigations – and staying in touch and following up – Intervening and treating flexibly as needs arise and change.

The Guardian’s presentation and discussion of this advance is more measured: Artificial intelligence could be used to diagnose dementia | Dementia | The Guardian

Merely to follow Providence as it emerges

By David Jolley

This comes from work on the park this weekend. Faced with a tangle of brambles sprouting from a ledge quite high up on a boundary wall – How do you tackle them?

Well, there was a jumble of clutter – a bale of wire, several parking cones, bits of brick and a growth of nettles and lower brambles to get to them. Sorting through these we came to a pile of bricks, which acted as a wobbly step to an intermediate level before a final hike up to the top. Up there life became straightforward – brambles falling easily to the cut of hand shears.

No written plan – muddling along if you like.

On the blackboard in the office on the third (half) floor of Pavilion 12, which was given to us as the core of the Psychogeriatric Service in South Manchester 1975, we had the ‘two mottos:’

Merely to follow Providence as it emerges. Sermon On Divine Providence by John Wesley via Words Of Wesley Quotes

And In Omnibus Deus Glorificetur. Ut in Omnibus Glorificetur Deus | Encyclopedia.com

Which we took as encouragement to do whatever you are doing – being it driving to see a patient at home, or writing a form for a blood test – do it as well as you can to be pleasing in the sight of God.

The very presence of that third half floor was an example of working with Providence. I had visited patients in the long-stay wards managed within Geriatric Medicine on the ground floor and second floor – not aware that the back stairs went up another level. The plans, which were given to me for the refurbishment of those wards as the main base for a Psychogeriatric Service for South Manchester from Withington Hospital, did not mention this suit of three rooms a kitchen and bathroom. They were converted at minimal (DIY) cost to offices for the service and research teams – First Dr Sutton and his virus research and then David Wilkin, Beverley Hughes and others for investigations amongst old people receiving care in South Manchester.

It was beautiful. Some would say we made our own luck – but for sure it was Providence.

I do not see Providence as being about a heaven-determined blueprint for everyone and every creature of every second of every age but some sort of function of working together with God – not controlling but waiting – giving time and space – listening and moving on together in humility and caution – because we may need to change tack. And it might all go wrong.

Climbing up that wall – in a little way felt like a model of how we do it.

These are ‘challenging’ times all round. No place for faint hearts or prickly demands to favour a pre-determined favoured route.

But we will do it to the best of our ability. Pleasing in the sight of anybody.