Dementia care: communication in nursing homes

In nursing home liaison the importance of communication quickly asserts itself (as it does throughout health and social care). As an organisation effective communication is evident (or should be) at all levels:

• Corporate: across the 'group'
• Management: within the home
• Clinical: continuity of care between shifts, days - nights
• Care staff and residents - especially those with challenging behaviour
• The care home (staff), relatives and community

This week and as also recognised for colleagues in the future, my role will focus on education. In particular reviewing the background, theory and practice of communication with people who are more severely disabled by this condition. I've sixteen slides as a guide, a lesson plan but I will be using a flipchart (arriving early to scribble away) with the intent to engage the audience. Given my pre-occupation with information I want to mix and match as follows:

1. Use information as a central concept, not technically but personally as per self-awareness, knowledge and orientation, person-centred care.
2. Have people contemplate communication in a practical sense.
3. Finally, obviously ensure that what is discussed and shared is directly related to their work, the care needs and challenges of the residents (and families?).

On the information front I'm sure I can employ the conventional and simplified communication model:

SENDER - channel - RECEIVER

This may appear mechanistic but it's an effective way to highlight the real difference that Health Care Support Workers - and indeed family and friends can make to resident's lives. Referring to this model I can demonstrate the very upsetting inequalities that are often found here. The audience can contrast themselves as SENDER and RECEIVER with each other and in care scenarios.

We will identify and acknowledge the deficits that people living with dementia must contend with and endure. This is to review previous learning and ensure staff fully appreciate the care situation. More positively the session will stress the role of staff as builders and agents of personalised care with a great contribution to make.

1. They can consider (critically) the care environment - yes the 'home' - as the source of potential noise. 
2. When there is an imbalance in the capabilities, comprehension and meaning between SENDER and RECEIVER skilled, insightful, and patient staff can compensate, addressing the person's unique needs.

If there are matters that cannot be resolved then these 'risks to person-centred care' should be carried forward to management: a prescription that must be repeated as necessary. With the purported high rate of staff turnover in homes (is that a myth - what are the figures really?) they should be able to leverage these FFIs - frequent first impressions - from new staff, before they are also part of the furniture.

Allied with this is a request for support in person-centred care. For me these two go together and it's good that this 2nd session follows tomorrow. This is an opportunity to introduce the Health Care Domains Model and build upon the points raised and factor in the questions and issues raised by the staff.

Critically across all these layers of comms is: Leadership. A key part of that of course is recognising training needs and pursuing change.

Older People with High Support Needs want more Choice and Control in How they Live their Lives

A new paper has been published today (to coincide with International Older Person's Day) by the National Development team for Inclusion (NDTi) to share findings from a two year project which is aiming to increase the voice, choice and control of older people with high support needs. This includes older people living in care homes and those living at home with a lot of support.

Around 1 million older people live in residential care and sheltered / supported housing. Older people want to have a broad range of options for their care and support, yet there seems to be widespread reluctance to develop and adopt new ways of thinking about and working with older people with high support needs. Traditional forms of service provision still dominate. As our society ages, the way we think about ageing, older people and disability needs to change to reflect with this demographic reality and the expressed wishes and desires of older people themselves.

The paper is from a 2 year project taking place in 3 local authorities in the South East Region of England. Local organisations and communities are working together to ensure options and opportunities are developed which support independent living and increase voice, choice and control for older people with high support needs. (See notes to editors for more information on the project and NDTi). The project is supported by ODI as one of the commitments in the Independent Living Strategy, which states:

Older disabled people must have the same options and opportunities for independent living as anyone else and the Strategy contains a number of commitments which will help achieve this goal.

The paper is :

- 'South East Regional Initiative on Increasing the Voice, 

Choice and Control of Older People with High Support Needs - Emerging Lessons'.

It summarises the findings to date from this project and has been written particularly to inform local authorities and partners about the work, to help them to achieve better outcomes for older people as well as best value in the use of public services and resources.

The paper highlights findings and messages about the priorities for ensuring older people can exercise greater choice and control over their support, including where and how they live. It also identifies some of the issues and barriers which get in the way of this happening.

A summary of the paper has been produced as an 'NDTi Insight' - part of a series of 2 page highlights of the most important learning from pieces of work carried out by NDTi.

This is available at the NDTi website on the following links:

www.ndti.org.uk/publications/ndti-insights/ndti-insights.aspx

Alternatively try: http://snipurl.com/181twm

Helen Bowers, Head of the Older People and Ageing Programme at NDTi and author of the paper said:

"The same level of commitment given to transforming health and social care is now required to transform expectations and experiences of older people with high support needs across all public services, including in residential care. Current debate in this area tends to focus on funding pressures and extending traditional services, rather than how we conceptualise, design and deliver support that promotes citizenship and transfers power from professionals and organisations to individuals, their families and friends."

To find out more, contact:- Helen Bowers, Head of Older People & Ageing Programme, National Development Team for Inclusion Magnolia House, 21a Stour Road, Christchurch, BH23 1PL Tel. 01220 471423 helen.bowers at ndti.org.uk
or
Rob Greig, Chief Executive, National Development Team for Inclusion - Head Office, Montreux House, 18a James Street, West Bath, BA1 2BT Tel: 01225 789135 rob.greig at ndti.org.uk

My source:
The Choice Forum

Global health: Care logistics in-deed

Although the previous post -

Care Logistics: have model will travel ...

- differentiated between what we might term mechanistic and humanistic logistics, there is a great deal of overlap:

communications, time, priorities, purposes, service, quality, processes ....

Global health has featured on W2tQ and it is here that the true dimensions of logistics can be defined. I may be confusing logistics and scale, but if I am then the challenge of logistics presents itself by virtue of scale and in global health the focus upon populations, nations, medical conditions and physical environments, climates and topography.

While the Wikipedia page on global health does not explicitly refer to logistics it is there in the shadows: it contributes to inequality, illiteracy, poverty, public ill-health (and mental too), pandemics ...

Logistics is there in the light too; the torch of disaster relief, the many development organisations, the ethos and values of the Millennium Development Goals. ...

Care Logistics: have model will travel ...

From: NHS Logistics - supplies, v4m, corporate, orders, consultancy, catalogue, process, delivery, stock, just in time, service, quality, priority, efficiency, customers, finance, contracts ...
	To: Care Logistics - access, choice, attitude, empathy, communication, values, outcomes, human rights, dignity and respect, quality care, professionalism, purpose, roles, holistic competency, standards, personal, measures, equity ...

Care design: c/o DDC Copenhagen

On Monday afternoon I explored the city of Copenhagen walking to several sites - the Tivoli Gardens, the Tycho Brahe Planetarium and other parts of this lovely city. I ended up spending a couple of hours at the Danish Design Center.

Like my occasional visits to London's museums, the DDC although very small provided a couple of pearls. One display across a wall upstairs outlined the main forms of design theory and practice:

• The USER as designer
• TECHNOLOGY in the design process
• New MATERIALS and smart design
• NATURE
• SOCIAL design and CARE design
• GREEN design
• ART design
• EMOTIONAL design
• REPLACEMENT due to changing fashions (built in obsolescence!)
• SERVICE and CONCEPT design

The following text was displayed to describe SOCIAL design and CARE design:

The population pyramid has changed shape. The working-age group is shrinking compared to the group of people of retirement age. In addition, there is the large segment of the so-called weak - particularly in the 3rd world. Thus, social design and care design will be big and important design areas in the future, because the solutions will seek to strengthen the health care sector and improve conditions in the 3rd world and for underpriviledged people in general. Parameters such as increased dependency, quality of life and dignity are crucial elements in solutions relating to social design and care design. DDC display; August 23 2010.

Many themes come together here. Some are represented in the tags below. Care design is much more than what we might consider as 'standard design' aspects, such as; user interface [UI] and user experience [UX]. Care design is even more dependent upon user engagement.

There is another dependency that as yet has a '?' in the data entry box.

Care design needs coherent forms of personal, social and civic responsibility. These are yet to emerge as think tanks, governments and health experts seek (urgent) solutions.

In comparison to the above the 200 character limit on labels (tags) on Blogger presents a very small challenge. I can well imagine the outline of a book on 'care design': the result would be a big tome; but this would not just be (PJ inspired) hyperbole. Care design is not new, but the DDC text above must accentuate the individual, and not just care design at the public and private sector hospital level. Care design in an individual context is mission critical. Heady content - for books, websites and policies - as befits our times.

Thank you DDC, Copenhagen: wonderful indeed.

Retirement, memories of work & Bacon numbers

In the UK in July 2010 the much anticipated news about the government's plan to scrap the default retirement age in the UK from October 2011 throws up a complex future work place and nursing care space.

At the moment if a member of the staff in the NHS needs a psychiatric assessment and admission, then there is often a protocol that determines how their care is managed. Various factors are taken into account. For example, the work history of the person and the distance of available beds. This may entail admission for them to another area. Such arrangements help protect the staff member, their families and the local staff for whom being both carers and colleagues could be quite difficult.

Over two decades I have encountered health professionals who are diagnosed with dementia maintained in the community - in their homes - and in residential care. So far I have not known these individuals in their work capacity and professional lives. This is due in part of course to the incidence of dementia increasing with age and my previous status as a spring chicken. Today of course things have changed:

• Early onset dementia is more common as the overall older adult population rises.
• Suddenly (well at least after October 2011) we may find - despite the physical and emotional demands of the job - that the staff in residential and nursing homes are also older - working through that previous work | retirement barrier.
• There's another change: now I am a mature chicken.
• I wonder what the churn rate is in our nursing homes?
• While we usually think of high turnover for staff and the associated poor quality of care. As care and nursing homes are also businesses there are two churn rates:
• - senior and junior staff leave the sector, or move to other homes;
• - residents are moved for reasons of re-location - increased care needs, and the choices of family.

So....? Amid all this I wonder how many workers in the care sector working their extended years may potentially come across former work colleagues? This could be a delicate and haphazard negotiation. ...

Additional link:
The Oracle of Bacon

New challenging behaviour charter launched

I noticed the item below (with links and images added here) on the Foundation for People with Learning Disabilities Forum. It makes a very important point:

"The label 'challenging behaviour', has become misused over time."

My worry is that this finding is not just relevant to individuals with learning disability and their families, but other groups.

People with dementia, especially in the latter stages can present with behaviour that is increasingly described as 'challenging'. Care facilities are being commissioned and designed with the requisite care, staffing and environment to provide care for people in an effort to provide the highest quality and standard of nursing care.

To some extent these are distinct groups with specific needs. So the use of 'challenging' in one context obviously has a different currency and meaning in another. Whilst the practise and care environments may be separate, is there no place where cross-over may occur? I remember a local RCN meeting presentation that highlighted the demographic trend of dementia within the learning disability population.

To start a painting we often start with a wash:
efficiency - puts a broad brush in the hand.

As we aspire to provide person-centred care
what type of brush do you hold?

We paint with the words we use - take care.

---

The Challenging Behaviour - National Strategy Group has launched a charter to promote the human rights of individuals with learning disabilities who are perceived as challenging.

Up to 27,000 people with learning disabilities in the UK may have been given a label of challenging behavior, resulting in this group of people being - stigmatised and socially excluded denied the right to ordinary lives in the community, to education, recreation and employment placed in institutional settings a long way from home and families.

The label challenging behaviour, has become misused over time. Rather than being used as a term to encourage carers and professionals to understand the underlying reasons for a person's behaviour, 'challenging behaviour' has been used as a diagnostic label, viewed as being intrinsic to the person.

The Challenging Behaviour - National Strategy Group want people (and organisations) to sign up to the charter to register their support for the principles it contains and to commit to action to improve the lives of children and adults who are labelled as challenging. We need as many people as possible to support us, so please ask your friends and family to sign up too.

To read the charter, including an easy read version visit:

http://www.challengingbehaviour.org.uk/

ENDS

What is the Challenging Behaviour - National Strategy Group?

The Challenging Behaviour - National Strategy Group (CB-NSG) was launched on November 7th 2008. The CB-NSG is a key national group to address the needs of children, young people and adults with learning disabilities whose behaviour is perceived as challenging.

Members of the CB-NSG include family carers, representatives from the Department of Health, Royal College of Psychiatrists, British Psychological Society, Royal College of GP's, NHS Trusts, researchers, service providers and a range of practitioners, regulators, commissioners and third sector representatives. The group is action and outcome focused and comes together twice a year to monitor progress, share best practice and develop coordinated action plans.

What is challenging behaviour?

"Behaviour can be described as challenging when it is of such an intensity, frequency, or duration as to threaten the quality of life and/or the physical safety of the individual or others and it is likely to lead to responses that are restrictive, aversive or result in exclusion." (Challenging behaviour - a unified approach; RCPsych, BPS, RCSLT, 2007)

Challenging behaviour is things like hitting your own head against a wall, pulling curtains down or pulling someone's hair. Often people do this because they cannot communicate with words and they have little or no choice and control over what is happening to them. How do I find out more?

To find out more about the Challenging Behaviour National Strategy Group, please refer to 'All change' the Summer issue of 'Challenge' today. This issue focuses on the work of the National Strategy Group and includes articles from Dr Roger Banks (Consultant in the Psychiatry of Learning Disabilities), Jackie Edwards (Family carer) and Bob Tindall (United Response).


'Challenge' is the newsletter of the Challenging Behaviour Foundation and is available free of charge by emailing: info at thecbf.org.uk or downloading from www.challengingbehaviour.org.uk

Helen Marron
The Challenging Behaviour Foundation
Email: info at thecbf.org.uk

As one chapter closes another opens ...

Even if that chapter number is 15, 20 or even the penultimate - when it comes to older adults entering or residing in residential and nursing care facilities this is not just an excuse for a euphemism roll call:

'the end of the road',
'Club Medicated',
'Eldergarten',
'the final chapter', ...

Residents and their families all too frequently find that care needs are not static. The book is far from complete and ready for review. Their health (and we had better add well-being) status changes constantly. A care home's ability to cope and meet an individual resident's care needs adequately in safety without comprising other residents and staff must be continually evaluated. A person's condition may improve psychologically and yet their physical health calls for more nursing care that is physically driven; or vice versa. Trying to anticipate care needs what can be several years in advance is very difficult.

It is one of those intangible questions - as to how many care homes carry dual nursing registrations and so will be able to provide not only the current level of care, but future elderly mentally infirm care needs if required. The reasoning being that an internal move is far less traumatic than finding a new home? So, what is the state of care moves?

If we have no information about this
then we know nothing.

What might this tell us about an individual's health career and the health career - likely care trajectory - of conditions such as dementia?

Of course our assessments are, and can only be determined (a keyword if there ever was one) in the here and now. This is the priority, while also trying to anticipate the future if we possibly can.

There is undoubtedly a great need for research here. Research that spans the many care dimensions which residents, their families, care home staff and other multidisciplinary team members must balance. These include quality of life, physical, mental and spiritual care, economics, demand and supply and our very notions of care quality and holistic care.

Only then - for all unique individuals - can we write an epilogue that befits each of those preceding chapters.

Image: M.C. Escher crystal ball

Comment: session at Beyond These Walls - Public Engagement Colloquium

I am of course really pleased that Prof. George Kernohan employed h2cm in his presentation last month - Beyond These Walls - Public Engagement Colloquium which I posted on W2tQ.

Considering his abstract I have added some observations below that I hope will further highlight the model's potential utility in this and other areas.

To begin George is quite right to describe the model as -

'a relatively simple way to think about and summarise the variety of engagement types.'

This explains the model's use as a student resource, a foundational framework on which to superimpose their learning and map placement and professional development experiences. As a learning activity reflection is greatly concerned with the student's accounts of engagement with patients, colleagues, carers and the public at large. This also flags up the belief that the model has some generic educational purposes in health and beyond with patients, carers and the public.

The model should not however be restricted to simple representations and applications. Granted the safety, efficacy and value of the model remain to be proven, but hopefully the directions indicated here on W2tQ and in publications to date are worthy of further exploration? More complex - lifelong learning - uses of the model might include:

• case formulation
• psychological therapy formulation (CBT, family)
• self-directed care planning and budgeting (sign-posting)
• complex systems in health care
• policy and politics in health care
• reflection: students, client life story work
  
• integrating care recording
• and clearly public engagment in many contexts; research, management and service development.
  

I am adding my (italicised) comments to Prof. Kernohan's original abstract below:

The first quadrant [SCIENCES] deals with scientific response to individual signs and symptoms: where engagement aims to ensure that people comply with the healthcare intervention: engagement is about informing the patient and their informal carer about their physical needs and responses.

People comply when they understand treatments and this understanding needs to be demonstrated. There has been much emphasis on concordance, but this has to be earned as Prof. K. indicates.

The second quadrant [POLITICAL] deals with mechanistic and group activity: for example political interventions to agree rules, policy and systems. Engagement here refers to members of groups working under a specific governance system or approach– activists and unions lobby for change, in this care domain. Arrangements for protection of vulnerable people are set through engagement here. Ethical issues guide the group mechanistic activities.

The past couple of years has seen a whole new group of people acting in this domain. The Mental Capacity Act has resulted in various protections for individuals who are assessed as lacking mental capacity. Whilst this is quite specialist and the province of secondary care and social services, the public will increasingly be exposed to vulnerable adults in their community, on their street. (I saw a gent walk past last night - to be collected by a care worker and taken back to the near-by care home. There was some resistance as they reached the corner. Deprivation of liberty and best interest sprang to mind. ...)

There are numerous other examples: membership of the public in Foundation Trusts, consultation processes on service locations, the provision of information resources for the public.

Another critical policy factor here is QUALITY, how this is measured and the public engaged in those measures and their EVALUATION.

A hybrid approach WILL be needed. A single measure is insufficient and within h2cm inevitably skewed.

Thirdly [SOCIOLOGY], there are more humanistic aspects of care: speech, thought, narrative and free text: stories contribute to group actions. Here we have the social and cultural components to remind us that engagement must work in a social context.

I tend to ground speech and thought in the interpersonal domain (related to cognition) as the primary focus of nursing (health and social care) is the individual. Although communication (society) is impossible without thought and speech and there is a special link here in that the individual cannot acquire appropriate thought and speech without being socialised.

Stories have a definite home in this care domain. Stories are the foundation of what people share, who we are, heritage. Stories differentiate familiars and strangers - stories old and new. Narrative medicine is here, right now. Significantly, the rise of science is in diagonal opposition to the domain of stories.

The final domain [INTER-intraPERSONAL] emphasizes the role of the individual in needing tailor-made care, requiring dignity and respect. Here lies a more holistic type of care and is more ‘mind’ than ‘body’ where interpersonal aspects of engagement are more person-centred.

This domain and the proximity of the 'individual' axis is the focus of nursing care. The rationale for individualised, personalised, person-centred, client-centred care is found here. We need to cross the individual axis repeatedly in order to achieve holistic care. There is no single destination. This journey is never a 'single' in two senses: neither one-way, nor travelled alone hence George's objective in public engagement.

Across all four care domains, public engagement is a key sustaining action to make the model meaningful but also to provide some reassurance that engagement although complex and varied, can be managed in a logical way to enhance care.

I can see what George means by stating that engagement can be managed in a logical way.

Logic's extent varies across the care domains of Hodges' model; from the logical affirmation and assurance that underpins evidence based interventions to the decision algorithms that inform NHS Direct. There is also a need for recourse to several forms of logic as the model is traversed and negotiated. Folk theory, dreams, the chaos of elections and economic uncertainty, and the public's sense of demographic trends also have their place.

I understand that Prof. Kernohan's slides will be posted on the event website in due course.

Many thanks to Professor Kernohan for his recognition and publicizing of the health career model.

Image source:
Gogeometry.com - http://www.gogeometry.com/problem/p076_square_circle_area.htm

Hodges' model: subject of a session at Beyond These Walls - Public Engagement Colloquium

Hodges' model found a place in a session at:

Beyond These Walls - Public Engagement Colloquium
Faculty of Life and Health Sciences
22nd April 2010 at the Ross Park Hotel, Kells

Theoretical review of public engagement in Nursing: Abstract

by George Kernohan, Professor of Health Research Nursing, University of Ulster

Nursing & health professional have wide roles in care of people in need, in sickness and in health and in supporting their informal carers. These roles, by necessity involve people in various ways: in this paper Hodges Health Career Model (Jones, 2009) is used to provide a framework to underpin public engagement in nursing. The model provides a relatively simple way to think about and summarise the variety of engagement types. It comprises two lines and eight words which appear to provide a graph with two axes. The vertical axis involves the recipients of care: individuals and groups, the other involves the care provider and what they do: from mechanistic to humanistic.

The first quadrant [SCIENCES] deals with scientific response to individual signs and symptoms: where engagement aims to ensure that people comply with the healthcare intervention: engagement is about informing the patient and their informal carer about their physical needs and responses.

The second quadrant [POLITICAL] deals with mechanistic and group activity: for example political interventions to agree rules, policy and systems. Engagement here refers to members of groups working under a specific governance system or approach– activists and unions lobby for change, in this care domain. Arrangements for protection of vulnerable people are set through engagement here. Ethical issues guide the group mechanistic activities.

Thirdly [SOCIOLOGY], there are more humanistic aspects of care: speech, thought, narrative and free text: stories contribute to group actions. Here we have the social and cultural components to remind us that engagement must work in a social context.

The final domain [INTER-intraPERSONAL] emphasises the role of the individual in needing tailor-made care, requiring dignity and respect. Here lies a more holistic type of care and is more ‘mind’ than ‘body’ where interpersonal aspects of engagement are more person-centred.

Across all four care domains, public engagement is a key sustaining action to make the model meaningful but also to provide some reassurance that engagement although complex and varied, can be managed in a logical way to enhance care.

Jones, P. Hodges Health Career - Care Domains – Model. 2009.
http://www.p-jones.demon.co.uk/ accessed 25/03/2010

Chambers, R. Involving Patients and the Public. How to do it better. 2000. Radcliffe, Oxon

Related links:

Kernohan, G. Theoretical review of public engagement in Nursing. Proc 1^st Public Engagement Colloquium, Kells, Co Antrim, 22 April.
http://www.ulster.ac.uk/scienceinsociety/beyondthesewalls.pdf

Science in Society

Launch of the National Care Service in England

Source: Department of Health, 30/03/2010

In the biggest change to the welfare state since the creation of the NHS, everyone who needs care when they are old or disabled will get it for free, Health Secretary Andy Burnham announced today as he launched the National Care Service in England.

The National Care Service will be based on a principle of shared social insurance and will be funded by contributions from everyone in a fair way. The National Care Service will ensure people get high quality care when they need it and it will give peace of mind that savings and homes will be protected from the expensive care costs that arise from serious long term conditions, such as Alzheimer’s or recovering from a stroke.

Andy Burnham said:

“Today we are launching a National Care Service that is fair for all, ending the cruel care lottery we have today. Like the NHS, everyone will contribute and everyone will get their care for free when they need it. This is the biggest change to the welfare state since 1948 and, like the NHS, it’s going to take time to build.

“The National Care Service will mean that people will be treated with dignity and respect, people will have control and choice over their care and they will be helped to stay in their homes for as long as possible. People who have to live in residential care will, from 2014, get their care for free after two years and there will be more help to pay the residential costs.

“We’re not replacing the millions of carers or families who look after each other. They are the underlying principle of the National Care Service and we will better support them.

“We’ve already laid strong foundations through reforms over the past few years. But, with an ever growing older population – there will be 1.7 million more people needing care in the next 20 years – we must radically overhaul the way care is paid for and provided.

“I feel very strongly that this is a responsibility we must all help to shoulder. And it’s clear from what we have heard from the thousands of people who have given us their opinions on this over the past twelve months, that people agree. That’s why we know that the fairest way to help everyone who is affected by a serious disease, illness or disability is for us all to pay into a system so we get free care when we need it.”

The cost of care is currently a cruel lottery. No one has any way of knowing how much care and support they may need in the future. A 65-year-old can expect to need care costing on average £30,000 during retirement. However, some people, for example people with severe dementia, could end up needing care costing as much as £200,000.

The National Care Service will put an end to this unfair system. It will be built on strong foundations of recent reforms and will overhaul the way care and support is paid for and provided. It cannot be built overnight and will be phased in three stages:

Stage One
• Build on the best of the current system through reforms that are already underway and deliver the Personal Care at Home Bill.

Stage Two
• From 2014 extend the coverage of free care so that people will receive free care if they need to stay in residential care for more than two years.
• Set up a commission to support consensus and advise the Government on the fairest and most sustainable way that people can make their contribution to a care system which is free when they need it.
• Set up a National Care Service Leadership Group of expert stakeholders who will advise Government on the implementation of the National Care Service, focussing on the systems and business processes that need to be put in place to make the National Care Service a reality.
• Introduce a National Care Service Bill to set the legal foundations of the National Care Service.
• Enshrine in law for the first time nationally consistent eligibility criteria for social care helping to remove the postcode lottery of care that exists now
• Push forward with the prevention agenda and continue the drive towards personal budgets so that by 2012 everyone who would benefit from a personal budget will have one.
• Ensure accurate, relevant and accessible information about what people are entitled to, how the assessment process works and how to access care services is provided to everyone.
• We want to improve the gateway for accessing social care and disability benefits to make simpler and easier for people.
• Introduce a quality framework including a body to drive up quality in social care.

Stage Three
• The introduction of a comprehensive National Care Service that is free when they need it for all adults with an eligible care need, funded by contributions.

Following the biggest ever consultation on care and support that saw over 68,000 members of the public, carers and representative organisations have their say, it is clear that people believe it is right that everyone should contribute to a care system that is free when people need it– similar to the NHS. However, the necessary consensus on how people should pay into such a system has not yet been reached. A National Care Service Commission, will therefore be established to advise Ministers on the fairest and most sustainable way for people to do so.

Care Services Minister Phil Hope said:

“We must find a fair way of funding the National Care Service. The stakes are very high. That’s why we must have a clear consensus. We are setting up a commission to tell us what would be a fair way for everyone to pay into this new system.

“Everyone will pay into it in a fair way and in return everyone will then have peace of mind that their savings and homes will be protected from high care costs. The whole of society will benefit and the National Care Service will support individuals and families for generations to come.”

The National Care Service will have six founding principles. It will:

1. Be universal – supporting all adults with care and support needs within a framework of national entitlements.
2. Be free at the point of use – based on need, rather than the ability to pay.
3. Work in partnership – with all the different organisations and people who support individuals with care and support needs day-to-day.
4. Ensure choice and control – treating everyone with respect and dignity, ,putting people in charge of their lives.
5. Support family, carers and community life – recognising the vital contribution families, carers and communities play in enabling people to realise their potential.
6. Be accessible – easy to understand, helping people make the right choices.

Contacts: Department for Health Email: NDS.DH at coi.gsi.gov.uk

Additional links:

DoH: 30 March 2010, The White Paper, Building a National Care Service

The Big Care Debate

RCN member's survey on spirituality & H2CM

Originally published - 10 March 2010
Source: http://www.rcn.org.uk/newsevents/news/article/uk/rcn_seeks_members_views_on_spirituality

The Royal College of Nursing has launched a survey to improve its understanding of nurses’ views on spirituality.

RCN members are invited to submit their thoughts on what they understand by the concepts of spirituality and spiritual care and whether they consider these to be legitimate areas of nursing practice. Specific questions will ask what level of training and support should be given to nurses to deal with spiritual issues.

RCN Executive Director of Nursing and Service Delivery Janet Davies says:

“The RCN is committed to the promotion of holistic care*, but we recognise that spirituality is a complex area. Although understood as an area of human life that applies to all, spirituality can also be subject to taboo and misunderstanding. We are committed to understanding nurses’ views on spirituality and to explore this issue further.”

The results of the survey will shape the RCN’s work in this area and will be presented at a fringe event at RCN Congress in April.

RCN members: Complete the spirituality survey by 31 March 2010.

* My emphasis.

Thoughts from Hodges' model (PJ):

Nurses most definitely need to be aware of and have due regard to care management theory and practice associated with spirituality. That is - how individuals, families, communities (and the State) express belief or non-belief concerning self, others, humanity, their environment, and their relationship with all that is, has been and will be. They need to discern when spiritual matters enter into religious affairs and the customs and rituals that exist ancient and modern. Nurses need to recognise when and where to seek guidance in how to proceed. Legislation, human rights, professional codes of conduct, local and national policies are also critical to a nurse's understanding and attainment of spiritual literacy.

This is an area were confusion can arise over terminology. What is the difference between spirituality, religion and beliefs (mine, yours)? In their training and ongoing careers students need to demonstrate an openness to spirituality in the sense of being neutral with regards to their own beliefs. In specific situations and medical procedures again professional advice may be needed.

Hodges' model is an ideal tool to support nurses in their appreciation of spiritual (and pastoral) aspects of care. The model is ethnoculturally neutral. This neutrality serves as a reservoir of deep respect, rapport and empathy and provides a foundation, a space upon which all spiritual elements of care can be written.

The spiritual is represented in h2cm as a whole.

The model's four care domains collectively represent a 5th domain - the spiritual. Strangely, as per the use of the term in technology circles, the model can be described as 'agnostic'. Not in the religious sense, but due to the fact that h2cm does not demand knowledge of, nor ascribe to any particular spiritual, religious or belief stance.

International Leprosy Day

Fighting for a Just Cause
Sunday 31 January 2010

How would you respond if, because of a disease,
your family no longer wanted you to live at home?
How would you feel if, because of a disease,
your husband or wife wanted a divorce?
What would you say if you lost your job
because of an illness that had no impact on your ability to carry out your work?
What would you do if your children were no longer allowed to go to school
because of your ill health or disability?

These situations may sound remarkable, unbelievable even, and yet these are real situations, faced by real people everyday. They happen just because the person has leprosy.

TLM-UK: In 2010 The Leprosy Mission is focusing on Nepal to celebrate World Leprosy Day. At Anandaban hospital, patients not only receive medical care, but staff also help them begin the slow process of emotional healing and release. The hospital's projects include medical treatment and surgery, counselling, education support, housing support and small business loans.

Additional links:

http://www.leprosymission.org.uk/

http://www.who.int/lep/

http://news.bbc.co.uk/1/hi/health/medical_notes/166163.stm

Dementia BBC TV & Radio

This evening on TV BBC Two 2100 hours UT:

Can Gerry Robinson Fix Dementia Care Homes?

Businessman Sir Gerry Robinson returns in a new series in which he tries to turn around three struggling care homes.

In the next twenty years over a million Britons will have dementia, and sufferers are likely to end up in one of the country's privately run care homes. It's a huge business worth six billion pounds, largely paid for by taxation, yet a great deal of the care is woefully inadequate. Can Gerry, whose father had the disease when he died, change a culture of stagnant lounges, a lack of specialist training among staff, and a focus on keeping people alive rather than helping them to live a happy life?

<->

It is very difficult to keep up with the various 'World Days' there are so many. The BBC's Archers has also dealt with dementia through the character Jack Woolley and the impact of the illness not just on the fictional families concerned, but the small fictional village community. The writers have done an admirable job in raising awareness about dementia. The link below is associated with World Alzheimer's Day, which was 21 September in 2006.

http://www.bbc.co.uk/radio4/archers/backstage/alzheimers.shtml

Now over three years later, the past week has brought us to Peggy's final realisation of the extent of Jack's care needs with his arrival at a care home.

This care transition has provided an opportunity for wider debate and discussion:

http://www.bestcarehome.co.uk/blogs/view/find-the-best-care-home-for-archers-jack-woolley

Additional links:

Bens Puzzles

Learning Disability & Hodges' model

It is Brian E Hodges who created Hodges' model in the early 1980s and one of his qualifications is RNMH - Registered Nurse for the Mentally Handicapped. Today this course and qualification is known as RNLD, that is - Registered Nurse for Learning Disability. What has not changed is the foresightedness and need for a political care domain within the model.

You might well ask:

What is so foresighted about that?

Well a moments reflection and we can soon appreciate the extent to which the following have changed since the early - mid 1980s, not only in terms of theory, policy and practice, but attitudes also:

• learning disability - independent living
• human rights
  
• institutionalised care
• role of medication - side effects, consent
• mental capacity
  
• epilepsy
• educational opportunity
• special needs
• social inclusion
• nurse training
• social care
• outcomes directed care
  

The foresight that Brian extended in realizing the opposition of intrapersonal - political retains its relevance today. There is still so much to do.

There is much more that the existing and any new website could offer in supporting the care agenda, its delivery and refinement for this group of people and their families. It pains me that to date there is a gap here on W2tQ (a paltry six tags), website and links content. By rights the links pages deserve a specific listing for this client group, either in the intrapersonal or political domains. What do you think? More than this though what future content types might support the care, welfare and well-being of people with a learning disability? If you have any ideas, suggestions, or guidance to offer please get in touch.

Additional links:

British Institute of Learning Disabilities
BILD 2010 Conference: 5 to 7 May 2010 – The Grand Hotel, Malahide, Dublin
Centre for Studies on Inclusive Education
Foundation for People with Learning Disabilities
Mencap

Dementia, Drugs, Nursing by Degr[EE]s and Care Transitions

Of all the policy issues that government faces the care of an ageing population is irresistible in demanding attention. This one will keep tapping MPs, policy makers and families ... on the shoulder. It will constantly cycle through the government's gamut of official papers. In the UK this past week people suffering with dementia and the prescribing of anti-psychotic medication and deaths arising from the same has been highlighted and not for the first time.

Whilst my spare time web attention is also given to nursing IT and socio-technical matters, as an NHS community mental health nurse these vulnerable individuals are the primary focus of my work and that of my colleagues. There are three strands to the current role - in brief:

• Nursing home liaison - dedicated to specific homes;
• assessment, intervention and subsequent review;
• working with social services integration project duty desk.

Drugs are of course a day-to-night constant for all nurses, with the addition of debate across all the knowledge domains of Hodges' model - that is interpersonal, sciences, sociology and political domains of knowledge. We have witnessed this in the scientific evidence of substance misuse and the government misuse of drugs advisory group 'difficulties' and now this issue which is professionally closer to home: right on the doorstep in fact.

'Home' is the operative word as many of the people concerned reside in residential care and nursing home facilities. Let's scratch the surface of what we already know:

• These people can be very confused, vulnerable, they may be agitated and not easily reassured and placated without repeated skilled intervention.
• Facilities are subject to inspection and care standards.
  
• Many do not have an advocate in the sense of a family member who visits at least weekly and will challenge and question care and prescribing.
  
• Older people may already be on several drugs (polypharmacology) due to other chronic health problems.
• There is still a disconnect (holistic gap!) between the interdependence between mental - physical health problems.
  
• These facilities are that individual's home - they continue to live and hence age there.
• Homes get attached to their residents; in the best homes they (and their relatives and friends) become part of a greatly extended family.
• For confused people there is a potential community (albeit a closed one) that people can participate in or choose to stay in their room. This space, the freedom of movement it affords - toing-and-froing - should itself be subject to history taking and ongoing assessment.
  
• The quality of this community depends on the core staff and additional skills seen as essential by the organisation and care standards, e.g. activities coordinators, residents committees that also engage family, friends.
• NVQs and mandatory training in the sector is making a positive difference.
• There remains a high level of staff turnover.
  
• Some homes are dual-registered catering for nursing care with another floor for dementia care (does a 1st or 2nd floor provide secure access to a garden in the summer?).
  
• Homes rely greatly on the specialist services of local community mental health service, also given the placement of people in homes 'out of area' this involvement may be more remote and subject to varying degrees of engagement and hence quality.
• Homes are businesses and the movement of clients incurs changes in income.
• The quality and standards of architecture and design for residential accommodation has seen great strides in the past decade.
  

The bottom line (no pun intended) is the need for macro-management in terms of multidisciplinary team input; that is, primary care, modern matron, mental health and micro-management in terms of personalised care with regular review of physical and mental well-being and medication.

As government's of all persuasion utter the mantra of education! education! education! - this must be heard in the residential and nursing home care sector. The good news is that standards, competencies and the quality of care in the sector are improving; but to education we must add environment! environment! environment! As someone who appreciates aesthetics in design we should all be aware of the seductive properties of newly designed and furnished nursing homes (new carpets plus brand new flat screen LCD TVs does not automatically mean multi-dimensional care).

The counterpoint to this are the long stay, geriatric wards of old (c. 1977-1984) and the reaction of family friends when they first walked through the (three) doors.

They were distraught.

In time they came to appreciate the efforts of the staff and the importance of the knowledge, skills and attitude of the ward team. They could understand and see what staff were trying to achieve regards individualised care. Many responded to the open invitation to be part of the team, to get involved. Yes, the environment was far from 'right' (it was terrible), but it's the people on all sides of the care equation that count. It is the same today, but if the care environment is no longer appropriate then people should be moved to a place were their care needs can be met without recourse to anti-psychotic medication. That is why initial and ongoing person-centred assessment is very important.

It is very difficult to predict future needs and yet trying to anticipate them is the primary nursing challenge. If life is a book, then the turning of the page that ends one chapter and starts a-new is a non-trivial transition. That said and make no mistake, it is not for dramatic effect that we describe the behaviour of some individuals as challenging. Drugs are a tool and like all tools it is how they are used in assuring the highest standards of care, retaining personal dignity and maximising whatever quality of life an individual can achieve. Accounting for care interventions including medication is critical. If due diligence cannot be effectively applied in the financial sector then perhaps there is scope for due diligence in the care of older adults*?

*Some clients are under 65 years of age.

Additional links:
[17 Nov, 2009] Alzheimer's Society report: Poor dementia care in hospitals costing lives and hundreds of millions.

http://www.nhs.uk/news/2009/10October/Pages/Antipsychotic-use-in-dementia.aspx

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.

The majority of presentation (including those above) are available on the download page.

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.

I will do a h2cm matrix on continence in the future.

* You can almost hear the critical exclamation of a future aged '60s generation - "No way dude I'm not using that!". Perhaps by then we will have the means to ensure they retain the faculties to pass a critique.

RCN Nursing Older People Conference 1 April 2009, Salford, UK

Registration 09.00, Conference 09.50 - 17.00, Wednesday 1 April 2009
Mary Seacole Building, University of Salford, Manchester, M6 6PU

This exciting one-day programme, compiled by the RCN Nurses Working with Older People forum, will address the key topics most relevant to you in your workplace. With a varied programme presented by key invited speakers and fellow nursing colleagues, this conference is essential for all health care professionals working with older people.

This conference will include session on:

• Human Rights Act and Mental Capacity Act
• Adult protection
• Dignity
• Involvement and decision-making
• Use of technology
• Inter-generational issues

MORE DETAILS -
registration, conference fees, contacts: RCN Nursing Older People Conference

Working with the mind in dementia, not against it

The following (edited) item was posted to the NURSE PHILOSOPHY list by Phil Benjamin;
plus Sandwell Third Age Art's DVD: ‘Fountain's Jolly Inn’:

You may be interested in a novel and sophisticated model for aged care in Tasmania. This model is based on a sophisticated psychological interventions based on an understanding of the intact affective life and needs of patients, even with the most severe cognitive disabilities - useful links below:

Dementia can produce challenging and erratic behaviours. The disease itself is one cause, but so is the world outside. Which psychosocial interventions really make a difference? And, a tour through an orthodox nursing home for the most extreme cases -- there's a bus stop with no bus, a car that won't go -- and it really works.

http://www.abc.net.au/rn/allinthemind/stories/2008/2390391.htm

http://www.adardsnursinghome.com.au/

http://www.adardsnursinghome.com.au/arnason.htm

Sandwell Third Age Arts DVD: ‘Fountain's Jolly Inn’

This film is about the making of a pub themed area inside a residential home for older people with mental health needs.

It was made by Paul Nocher.

The DVD shows how a little imagination can go a long way in creating an interesting and stimulating environment in a residential home and how the transformation of a space can enrich the lives of the people who live in it.

Note (blog post!) to Sir Michael Parkinson

Dear Sir Michael,

Many congratulations on your appointment as the National Dignity Ambassador on 20th May 2008. There's nothing like a bit of Northern grit and determination to spearhead the Government's drive to ensure that all older people using health and social care services are treated with dignity and respect.

I noticed the following conference being organised (prompting this post):

FOURTH NATIONAL CONFERENCE

A Practical Guide to Improving
Dignity in Care on the Wards:
Moving Forward

Implementing the recommendations of the Healthcare Commission ‘Caring for Dignity’ report

Wednesday 1^st October 2008
20 Cavendish Square, London


The subject for the e-mail I received read - 'Dignity on the Wards'.

Of course we all know that before dignity can put in an appearance on the wards, she needs to hitch a ride in the hearts and minds of all those who can make that real difference.

Like happiness, quality of life..., and its partner in care respect - dignity is a concept that can precariously be taken for granted, trampled upon, and is constantly the subject of academic - philosophical debate. It is often assumed that dignity is hard-wired into the essential humanity of the vast majority of us. Well your new role sadly reveals a truth.

Whether you still believe in the vocational view of nurse's devotion and attention to the -

REAL partners in care,
the real 'R&D' -
respect and dignity

Here's a tip - Hodges' model cun'elp jogt'memry of'sall...

Good luck lad!
Respectfully Yours!
PJ