Living and Loving Dangerously

individual

|
INTERPERSONAL : SCIENCES             

humanistic ------------------------------- mechanistic

SOCIOLOGY : POLITICAL   

|

group

identity - choices   Memory - Cognition DEMENTIA - Early onset Inability to consent   inhibition-disinhibition  mental capacity	My liberty, my choices "What! I'm married to you? Oh!" Treatment - medication  'Secure (safe)' environment 'Holistic assessment'?
Marital/Initimate Relationships Social (our) identity Existing relational behaviours Interrelational needs Interpersonal grief Social identity/expectations Yes, but we're married ... had 40 years together ... Family bias, prejudices.. A 'new' step-parent ... Access to support:  relational - mutual vulnerability	Informed consent Assumed consent Rape, Sexual abuse, crime Capacity to give consent Consistency in decisions Lasting power of attorney - finance; health External safeguards Human rights Access to supervision - clinical & management

Prompts:

Previously post: Living and Caring Dangerously

Danny Leigh. Critic's choice - Films on release: Queen at Sea. Life&Arts, FTWeekend, 19/20 September, 2026, p.18.

https://depijp.rialtofilm.nl/en/films/queen-at-sea

So many difficult conversations. All on their own unique continuum in terms of sense-making for all concerned. 

A 'new' diagnosis at age 60; versus one at 44. Families seeking to control disclosure of the diagnosis from the patient. Clinical and family debate about this.

Finding a person locked-in the house, while their partner 'nips' to the shops. A person having their freedom to go out, on their regular walk  -despite acknowledged risks. (When they are known by people on their route - community care in action. Receiving a call from a neighbour; or the neighbour who knows where you park and can intercept you, on arrival or departure to express concerns. Or, even as you venture out for a walk with their neighbour of many a year. Categorise them as you will: [nosey, caring, concerned, public spirited, neighbourly, or (healthily) curious]?

Other discussions of grief at the loss of a person they have loved - in every way. A grief that presents new dark dimensions to what has gone before. Complicated by a state of early onset of memory loss. An ongoing disintegration of personhood and identity. An inability to consistently express thoughts, wishes, and choices. An inability to give informed consent. A loss taunted by retained physical desirability. What does love, sex, compassion mean now? What is the sum now, of love expressed over 'x' years? Hearts hollowed out, of what can be so important to a couple. Not vital to all. But for others, a source of conjoined affirmation, joy, warmth, companionship, a celebration of life and being human.

How to share that grief even amid close friends and family, who cannot cope themselves and withdraw? What of the preparedness of professions to manage such situations? What structures are in-place for team meetings, clinical supervision and inclusion in training, especially safeguarding?

From the bibliography (lower sidebar):

Hodges, B.E. (1989) The Health Career Model, IN, Hinchcliffe, S.M. (et al.) 1989 Nursing Practice and Health Care, 1st Edition only, London, Edward Arnold.

Adams, T. (1987) Dementia is a family affair. Community Outlook, Feb, 7-8.

Merritt MK, Procter N. Conceptualising the functional role of mental health consultation-liaison nurse in multi-morbidity, using Peplau's nursing theory. Contemp Nurse. 2010 Feb-Mar;34(2):158-66. doi: 10.5172/conu.2010.34.2.158. PMID: 20509800.

Murphy, K., Welford C. (2012) Agenda for the future: enhancing autonomy for older people in residential care.International Journal of Older People Nursing. 7, 75–80.

Kernohan, W. G., & Jones, P. (2023). Hodges’ Health Care Model as a Framework for Quality. Paper presented at Interprofessional work: developing oral care and the health workforce for the future, Brescia, Italy.
https://pure.ulster.ac.uk/en/publications/hodges-health-care-model-as-a-framework-for-quality

Jones, P. (2025). A Conceptual Mapping Exercise of Deprivation of Liberty Safeguards in Residential & Community Care Using Hodges' Model and Threshold Concepts. Journal of Evaluation in Clinical Practice, 31: e70085. https://doi.org/10.1111/jep.70085

Jones, P. (2025), A Generic Model and Conceptual Framework to Prime Curiosity Across Health and Social Care Disciplines to Facilitate Lifelong Learning. Journal of Evaluation in Clinical Practice, 31: e70252. https://doi.org/10.1111/jep.70252

Previously: 'capacity' : 'consent' : 'law' : 'safeguarding'

Living and Caring Dangerously

individual

|
INTERPERSONAL : SCIENCES             

humanistic ------------------------------- mechanistic

SOCIOLOGY : POLITICAL   

|

group

mental health   Cognition Inability to consent  mental capacity	My liberty Locked doors Treatment - medication  'Secure (safe)' environment
Family - friends dignity, privacy, respect vulnerability Best interest decision	Lasting power of attorney - finance; health External safeguards human rights

 

My source: BBC Radio 4 'Today' 25th September 2026: From 0841

Sir Ranulph Fiennes ‘kept unlawfully in care home’ [ The Times ]

The explorer, 82, is being ‘deprived of his liberty’, according to the watchdog, and his wife Louise Millington-Cotes is refusing visitors.

Hannah Crowe. Friday, September 25 2026, 12.41am, The Times

 See also:

Living Dangerously: An Interview with Sir Ranulph Fiennes [Brighton Dome]
Wed 10th Apr 2019

From the bibliography (lower sidebar):

Hodges, B.E. (1989) The Health Career Model, IN, Hinchcliffe, S.M. (et al.) 1989 Nursing Practice and Health Care, 1st Edition only, London, Edward Arnold.

Adams, T. (1987) Dementia is a family affair. Community Outlook, Feb, 7-8.

Merritt MK, Procter N. Conceptualising the functional role of mental health consultation-liaison nurse in multi-morbidity, using Peplau's nursing theory. Contemp Nurse. 2010 Feb-Mar;34(2):158-66. doi: 10.5172/conu.2010.34.2.158. PMID: 20509800.

Murphy, K., Welford C. (2012) Agenda for the future: enhancing autonomy for older people in residential care. International Journal of Older People Nursing. 7, 75–80.

Kernohan, W. G., & Jones, P. (2023). Hodges’ Health Care Model as a Framework for Quality. Paper presented at Interprofessional work: developing oral care and the health workforce for the future, Brescia, Italy.
https://pure.ulster.ac.uk/en/publications/hodges-health-care-model-as-a-framework-for-quality

Jones, P. (2025). A Conceptual Mapping Exercise of Deprivation of Liberty Safeguards in Residential & Community Care Using Hodges' Model and Threshold Concepts. Journal of Evaluation in Clinical Practice, 31: e70085. https://doi.org/10.1111/jep.70085

Jones, P. (2025), A Generic Model and Conceptual Framework to Prime Curiosity Across Health and Social Care Disciplines to Facilitate Lifelong Learning. Journal of Evaluation in Clinical Practice, 31: e70252. https://doi.org/10.1111/jep.70252

Previously: 'capacity' : 'law' : 'safeguarding' : 'health career'

I can't count the number of times in a nursing home, when a visit by a friend has re-ignited the flame of memory, passion and personhood; even if temporary. It was never my place to thank the friends for visiting, but they've made a difference, so crucial to acknowledge the courage on their part. Making the journey, being present and with. So difficult too, for families.

Invitation for User Evaluation of OntoChat

Dear W3C Semantic Web Community,^

(Sending the below on behalf of one of our PhD students-your help would be very much appreciated!) 

We are a research team at King's College London conducting a study on the user experience of OntoChat, a tool built on large language models and designed to assist ontology engineers in creating user stories for ontology development. If you are currently or have previously been involved in ontology engineering projects, performing tasks such as ontology development, refinement, alignment, extension, or evaluation, we invite you to participate in this study to help improve OntoChat's design.

Participation Details:

• Duration: Approximately 35 - 40 minutes
• Activities:
• Use OntoChat to create an ontology user story relevant to your project while sharing your thoughts
• Answer open-ended questions about your experience
• Complete a brief questionnaire evaluating OntoChat's usefulness

We are flexible and can accommodate your availability within 19th November and 10th December 2024. If you are interested in participating in this study, please indicate your preferred time and agree to the user consent form by completing the registration form at:

https://forms.office.com/e/2wkmugH9v1

Your feedback is invaluable for refining OntoChat to better support ontology engineering processes. Please be assured that all personal data will be kept confidential and anonymised.

Thank you for considering this opportunity to contribute.

Kind regards,
Yihang Zhao
PhD Researcher, King's College London
Contact: yihang.zhao AT kcl.ac.uk

^Via semantic-web mail list.

Book received: 'Handbook on the Ethics of Artificial Intelligence'

Many thanks to Edward Elgar Publishing for a review copy of this book which arrived today:

Edited by David J. Gunkel, Professor of Communication, Northern Illinois University, US, and Professor of Applied Ethics, Łazarski University, Poland

Publication Date: 2024 ISBN: 978 1 80392 671 1 Extent: 336 pp

This engaging Handbook identifies and critically examines the moral opportunities and challenges typically attributed to artificial intelligence. It provides a comprehensive overview and examination of the most pressing and urgent problems with this technology by drawing on a wide range of analytical methods, traditions, and approaches.

This is timely, prior to next month's event on AI and Planetary Health, about which news to follow shortly, especially if you are based near London and southern England.

I also can't believe it is 34 years since publication of the following case study:

Davies, M. and Owen, K. ‘Complex uncertain decisions: medical diagnosis’, Case Study 10 in Expert System Opportunities from the DTI’s Research Technology Initiative, HMSO 1990.

Ethics in AI 2024 :: Expert Systems 1990

Lab rats ... Experiment ongoing ... c/o BBC Radio 4

Fallout: Living in the Shadow of the Bomb

 INDIVIDUAL

|

 INTERPERSONAL    :     SCIENCES               

HUMANISTIC --------------------------------------  MECHANISTIC      

SOCIOLOGY  :   POLITICAL 

|

GROUP

define: pacific psychological resource (fight)	lab rats, guinea pigs 'piece of kit', equipment "out of sight (a hemisphere away!)"
welfare & wellbeing Armed Forces Covenant Group - who is left?	informed consent the State: Test veterans What did you say 'pacific' means?

British Nuclear Test Veterans Association BNTVA

"NHS to pilot smart goggles to free up time for community nurses"

c/o Digital Health:

"The NHS is to trial the use of smart goggles that will be worn by community nurses on home visits in order to free up time with patients.

Providing that the patient consents, the virtual reality style headset can transcribe the appointment directly to electronic records, reducing time-consuming admin for nurses.

Staff will have the ability to share live footage directly with hospital colleagues to get a second opinion, avoiding the need for further appointments or hospital admission."

Read more at Digital Health ...

My source:

Eleanor Hayward, Smart goggles give nurses advice during home visits, The Times, 20th August 2022, p.16.

Henrietta Lacks' 'immortal cells'

INDIVIDUAL

|

 INTERPERSONAL    :     SCIENCES               

HUMANISTIC --------------------------------------  MECHANISTIC      

SOCIOLOGY  :   POLITICAL 

|

GROUP

Henrietta	'immortal cells'
Lacks	No consent No family knowledge Harm to trust of African American communities Damage to trust in medical research generally

Thanks to Ilaria Galasso, for reminding me about HeLa cells - Henrietta Lacks in a presentation at:

https://vitalcirculations.org/

15:00-15:30 Genetic data and the collective good: participants as leaders to reconcile individual and public interest | Ilaria Galasso

https://www.eventbrite.co.uk/e/vital-circulations-vital-data-symposium-tickets-365908681717

The Legacy of Henrietta Lacks

 

 

Would you like to help design a new risk assessment tool?

On Tuesday, 19 June 2018, 19:06:42 GMT+1, Charlotte Christiane Hammer, UK wrote:

We are looking for experts in the fields of health protection and humanitarian aid who are interested in helping us with the content validation for a new risk assessment tool for communicable diseases in humanitarian emergencies. The validation will be in the form of a short interview (between 20 and 35 minutes) via Skype during which you will have the opportunity to examine the tool and comment on it. If you are interested or know anyone who might be interested, please send us an email and we will give you further details regarding the project and the consent procedure. Your help is greatly appreciated. Please also forward this email to any colleagues who might be interested.

Kind regards,

Charlotte Hammer

Charlotte Christiane Hammer, MA, MPH

PhD Candidate

Health Protection Research Unit in Emergency Preparedness and Response

University of East Anglia
c.hammer AT uea.ac.uk

Related post - Dec 2017  
My source:

HIFA: Healthcare Information For All: www.hifa.org

HIFA Voices database: www.hifavoices.org

"Making legal advice a clinical department" Dept of Clinical Law

individual

|

INTERPERSONAL : SCIENCES

humanistic -------------------------------------------  mechanistic

SOCIOLOGY : POLITICAL

|

group-population

	Definitions: Child in England and Wales < 18 years of age
"Changing views in society have pushed...	"Making legal advice a clinical department"  'child' : 'adult' mental capacity, deprivation of liberty, candidness and forethought, end of life decisions, treating physical illness in the mental ill, consent, confidentiality and treatment refusals (p.20) ... legal considerations of patient rights to  the front of clinician's agendas"

Wheeler, R., & Marsh, M. (2016). Making legal advice a clinical department. Health Service Journal, April 13, 126: 6482, 20-21.

care.data: too much information?

individual

INTERPERSONAL : SCIENCES
humanistic ------------------------------------------- mechanistic
SOCIOLOGY : POLITICAL

group

individual - person ethics 'personal' My identity:  lost in numbers Vs. specificity of patterns *my attitude to my 'sensitive' information health literacy personal responsibility, self care, quantified self my understanding of care.data Trust	datasets, BIG data hospital episodes, treatments research privacy research  anonymising process for nhs data *care.data is a natural step towards personalised medicine? axon - neurobiology Axon - data warehouse statistics service development and innovation
Too Much Information	data security, law, information governance NHS commercial, contract potential for abuse - assumptions public mental health public health policy, consultation policy communication public engagement, primary care informed consent, opt-out data definitions, standards ISO27001 population, insurance

Additional link:
Allyson Pollock - Protecting confidential patient information and promoting public health research. Three proposed amendments to the Care Bill

Image source:
http://cdn2.thelineofbestfit.com/media/2014/01/Maximo-Park-Too-Much-Information.jpg

Better information means better care

BBC Radio 4: Inside Health 21 January 2013

Margaret McCartney and Mark Porter ask whether the anonymity of patient records on a new NHS database can be guaranteed?

NHS: Your records:

Using information about the care you have received, enables those involved in providing care and health services to improve the quality of care and health services for all. The role of the Health and Social Care Information Centre (HSCIC) is to ensure that high quality information is used appropriately to improve patient care. 

NHS England has therefore commissioned a programme of work on behalf of the NHS, public health and social care services to address gaps in information. Our aim is to ensure that the best possible evidence is available to improve the quality of care for all.  ...

http://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Pages/care-data.aspx

INTERPERSONAL : SCIENCES
humanistic ------------------------------------------- mechanistic
SOCIOLOGY : POLITICAL

individual

my interests	scientific interests
social interests	commercial interests

group - population

Hodges' model: the puzzle of holistic care

Like many day-to-day 'customer' facing businesses, it is very difficult to get health and social care just right ('just' is not good enough).


If you are faffing about with clothes and belongings when an emergency ensues you have just become an adornment yourself: one that is in the way. In the SCIENCES domain fail to assess mobility and balance and who is going to catch them when they fall? Not you: health and safety! It's a problem for the mental health team is it? Could this confused gentleman be constipated? Nice place is it? OK, crease your eyes up and tell me where the door is; what about the hand-rail?

Are you ready to crowd surf?

That's good because there is an abundance of outstretched hands ready in the SOCIOLOGICAL domain. If, however, you do not attend to the patient's instructions regards information sharing - even if it was a relative you spoke to - just where are you going to hide?

(Ouch - that's gotta hurt! Sounds like they dropped you.)

Fail to assess mood and motivation comprehensively in the INTERPERSONAL domain and will you be able to say how Mrs Green really feels, behind that Mona Lisa smile? Will you know how to observe her, will you and your colleagues know just what you are looking for?

Did you miss that opportunity with the patient, carer - family in the POLITICAL domain to resolve the (ongoing Sunday afternoon) issue? You know the one about mum's medication, agitation, the appropriateness of the care environment and the outstanding referral to the community mental health team? Well yes, you might wonder what that buzz is. It's a complaint just passing you by(e).

Basic, holistic, integrated, person-centered care and much more. Now that's the real puzzle.
A puzzle worth spending a whole career trying to find the pieces - never mind the solution ....