'Pad culture' ...

INDIVIDUAL

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 INTERPERSONAL    :     SCIENCES               

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

SOCIOLOGY  :   POLITICAL 

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GROUP

DEMENTIA SELF ORIENTATION - INSIGHT Listened to .. 'Hear me'? dignity and respect Mental capacity (awareness?) emotional distress Appears confused - Physical cause: dehydration, delirium..? [A shared convenience?: How many persons are assumed to be diagnosed with a dementia?]	in-CONTINENCE Place: [Home, Community Hospital, Residential care, Nursing Home] IT/Record systems 'Parity of Esteem' i Mental Health and Physical health 'Parity of Esteem' ii [Mental Health and Physical Health] AND Social Care Time: ASSESSMENT, Care Plan, Evaluation ...
'Pad Culture'	'My Pad' Culture - buy/sell £££ $$$ Standards of Care Nursing - Social Care policy - funding

File on 4 BBC Radio 4 21 June 2022 - 20:00hrs

Dementia: The Final Indignity

"Around 800,000 people have dementia in the UK. For those suffering from the illness, incontinence can often be seen an inevitable consequence - but that’s not always the case. Deemed as too embarrassing or taboo, it’s a topic that rarely hits the spotlight. Experts say preserving someone’s ability to go to the toilet is crucial to maintaining their dignity and quality of life and should be a priority in care settings. But is that always happening? A new report shown exclusively to File on 4 has looked at how continence care is being managed in hospitals – and how, in some cases, those who are continent are actively encouraged to soil themselves. Datshiane Navanayagam speaks to families who say their loved ones were ignored when it came to their continence needs in hospital and that the consequences have left them with health issues and requiring additional support. Nurses and medical staff say that continence training is often seen as a ‘Cinderella subject’. We also hear from dementia patients themselves about why maintaining your own dignity and independence is so crucial with this disease. With the government set to reveal a new dementia strategy this year, will continence care be placed higher up the agenda?"

Featherstone K, Northcott A, Boddington P, Edwards D, Vougioukalou S, Bale S, et al.
Understanding approaches to continence care for people living with dementia in acute hospital settings: an ethnographic study. Health Soc Care Deliv Res 2022;10(14). https://doi.org/10.3310/
QUVV2680

 
Source: Today BBC Radio 4, 21st June, 2022.

Learning to pee and poo (again!)

I did not have to learn to pee and poo - you could say it came naturally.

My apologies: I know this is not the way to engage people, but believe me there is an issue in this waste-land.

Loving parents, guardians, and baby sitters the world over come to the rescue of hygiene, skin care and the quality of environmental aroma tending to the nappy / diaper changing when we are babies. Family pride counts too in place of the yet to be gained person-al sense of dignity.

We all (well the vast majority of us) have the potty training tee-shirt - even if at the time we were illiterate (an amazing woman this Mother Nature). I've also experienced potty training - the ups, downs and spills with my three children. It really is magic seeing them gain that control and independence.

When I was a student nurse hygiene, skin care, privacy and dignity were constantly stressed. These were a measure of the standard and quality of nursing care. It was the one thing around which continuity of care was built. We don't usually think of care continuity in these basic terms, but there it is. While there is so much that can divide ward / care shifts, day and night staff here was something that indicated performance, or the lack of it. Obviously enough, it was closely associated with continence and toileting.

Over the past decade and more we have all noticed the many changes in nursing, social care and with it the use of continence pads. Not just as a stand-by, but a routine continence management device that saves staff time and pressure on the call alarms. If you are catheterized then plainly there is no need for the commode, or bed-pan.

Now it seems with i-pads (no pun intended) the same applies,

now the nurses say "use your pad"!

Amid the clamour for dignity and respect, personalised care, high quality nursing care the location and bounds of the political care domain are found. Nursing has changed with social care. Nursing duties have been contracted out of the profession, freeing nurses to nurse.

This past week in England the BBC reported: Ex-ballerina Elaine McDonald care ruling 'shameful'

Elaine McDonald, 68, took Kensington and Chelsea Council to court over its decision not to provide her with a night carer to help her use a commode.

The court ruled the council had acted lawfully in reviewing her care plan.

It seems many people are having to learn to pee and (perish the thought) poo again.

• What is that like when you are not* 'on the toilet' and are fully oriented, have mental capacity?
• What is it like when there are people around?
• What is that like when you are on your own at 0100 hours and the carer's due at 0830-0900?

We know social care is an acknowledged mess. Dilnot has arrived.

For Elaine McDonald and others in her situation this is a special type of problem. It is a logistical, temporal, care-logic nightmare. Committing someone for a whole night for the sole purpose of toileting is hard to justify, but are there no compromises, no alternatives? Is there no pattern to discern? Does the Big Society - social enterprise not see an opportunity here? Care in the community never is the cheaper option. Are we discounting the value of mental health and the sense of well-being that will be an inevitable ('soul') casualty?

I must locate some resources on nursing reviews of continence - there must be several - reports, theses, guidelines, standards? The contexts in which this matters are legion. If you know of any please let me know (see right for contact details). At some future date I'll explore the dimensions of continence across the health care domains.

Attitudes to toileting are already impacting on nursing's status. Too posh too wash...

We know this speaks volumes and reflects upon what we describe as nursing and how we define nursing. 

But it goes much deeper than that -

not only does it represent how nursing is practised 

it reflects the very values that nursing must then take as its own -

that is nursing the profession.

*in a space suit - STS 135 space walk 12 July 2011 > 6 hours.

Image and story source:
BBC http://www.bbc.co.uk/news/uk-england-london-14042078

KT-EQUAL event Ageing Research 17 September

I was really pleased to be able to attend this event last Thursday (do check the site as there is an ongoing programme of workshops):

Making the most of the potential of Assistive Technology

This workshop organised in conjunction with BIAS (Brunel Institute for Ageing Studies) will provide a round-up of recent developments in AT and the underlying research aimed at enhancing independence in the home, improving safety and security, extending the use of the car, managing continence, maintaining the body and stimulating the brain.

 

Hosted by: Brunel Institute for Ageing Studies
Sponsored by: BIAS and KT-EQUAL

10:20 Welcome and Introduction, The world of  BIB and older people, Chair for the morning, Professor Emeritus Heinz Wolff, Founding Director, Brunel Institute for Bioengineering (BIB), Brunel University 
10:30 New Service Quality to Support Self-Care, Keren Down MBE, Director of FAST
10:55  Tackling Ageing Continence, Felicity Jowitt, Brunel Institute for Bioengineering
11:20 Refreshments
11:40 From chairs to stairs, Dr Ruth Mayagoitia, Applied Medical Research Group, King's College London,
12:05 "The Companion" - Independence, choice and self-sufficiency, Edward Varney, Brunel Institute for Bioengineering
12:30 Discussion
12:45 Lunch
13:45 Introduction to the afternoon, The world of BIAS and older people, Chair for the afternoon, Professor Mary Gilhooly, Professor of Gerontology, School of Health Sciences and Social Care, Brunel University 
13:50 KT-EQUAL: its mission for older people, Professor Peter Lansley, Director KT-EQUAL, University of Reading
14:00 Older drivers & older IT users: designing new technology, Suzette Keith, Middlesex University
14:25 Safety and Security in Later Life, Professor Rachel McCrindle, KT-EQUAL Consortium, University of Reading
14:50 Tea
15:10 Nourishing the body and saving the soul, Dr Arlene Astell, St Andrews University
15.35 Technology for people with dementia, Eleanor van den Heuvel, Brunel Institute for Bioengineering
16:00 Discussion
16:30 End

As noted above Prof. Heinz Wolff duly and delightfully introduced proceedings and chaired the morning. As a community mental health nurse for older adults and informatics / ICT enthusiast the day certainly proved worthwhile for me. Here are some reflections on two sessions:

While clinical and information standards have and remain a preoccupation for me, Keren Downs' session raised the chicken and the egg problem of standards and quality in the development of self-care and assistive technologies. Keren's presentation highlighted the stasis in design in the older adults sector and the question of how to energise future vision and models for innovation. There was reference to Shaping the future of care together and Common Core Principals to Support Self Care 2008, Department of Health.

Funding inevitably featured - the green paper listing three options:

Partnership - government pays for between a quarter and a third of care costs ...
Insurance - government pays for between a quarter and a third of care costs ...
Comprehensive - everyone pays into a state insurance scheme, whether or not they need care, and everyone gets free care when they need it.

The next slide reminded me of the tilting, table fitted geriatric chairs of old as Keren Downes highlighted the relative stasis in design and need for change for this population group.

While form follows function - can it also stifle innovation? When you consider change in materials, people's homes, care environments, attitudes ... there must be opportunities for innovation?

I also recalled similarities between this market of assistive technology and that of benefits realization within nursing (health) informatics. Especially as barriers were considered such as:

• poor design (usability)
• information provision
• workforce competency
• procurement
• (To which I would add 'value added services' - maintenance, life-cycle management.)

As the speaker and work of FASTUK made clear, older adults represent a growing and emerging market, for whom standards and design will be critical if self-care and assisted living are to be fully realised *.

The final slide listed some reports and a web link as follows:

FAST reports: www.fastuk.org

• Assistive Technology supporting self care, July 2006
• Assistive Technology –Workforce Development, June 2007
• Annual Report to Parliament on Research and Development in Assistive Technology, July 2009

Felicity Jowitt in another session:

TACT3: Tackling Ageing Continence through Tools, Theory and Technology

- provided a concise non-medicalized definition:

Urinary Incontinence 'is a condition in which involuntary urine loss 
is a social or hygienic problem and is objectively demonstrable'.

International Continence Society definition of incontinence

The talk included explanations of the problems and how they arise, prevalence, management, available AT options and the anatomically - stigma driven challenges that male and female continence presents. To close new assistive devices were discussed. The creation and production of discrete, well-designed person- (in a social context) friendly aides, special pads and devices to detect the odour that signifies the need to change a continence pad before the human nose is alerted.

The sessions featured a Q&A session and amongst the many questions raised, I wondered about the ideal of continence aids that also help nurses and carers maintain high quality standards of care and professional values. ... Perhaps from the late 1970s I have antiquated notions of basic nursing care? It is shocking to hear stories of people being told to "do it anyway - you've got a pad on!". Does it not occur to these people that if the person is asking they obviously have insight and are distressed by their urgent situation. As to people who are confused and asking as a result of agitation - the mind boggles and the heart aches at the standards of care evident in such an attitude.

So, this was a really thought provoking and - despite the subjects - enjoyable event and I have only of course scratched the surface.

A related reference I am following up:

Duarte, L.R., Marquié, L., Marquié, J-C. et al. (2009) Analyzing feature distinctiveness in the processing of living and non-living concepts in Alzheimer’s disease, Brain and Cognition, Volume 71, Issue 2, November 2009, Pages 108-11.