Call for Papers: 1st Int. Workshop on Pervasive Care for People with Dementia and their Carers (PCPDC-2011)

(To the webmasters of http://www.pervasivehealth.org please check the status of your site - 'attack site')

Dublin, Ireland, 23 May 2011

http://trail.ulster.ac.uk/pcpdc/

To be held in conjunction with the 5th International ICST Conference on Pervasive Computing Technologies for Healthcare 2011

The global population of persons aged 60 and over is rising dramatically. Between 2006 and 2050, the number of people aged 60 and over will double from 650 million to 2 billion people representing 22% of humanity. One group of the ageing population that is particularly vulnerable to loss of independence is those affected by dementia. It is estimated that around 820,000 people in the UK have dementia. Recently emerging computing and assistive technology have been used to attempt to improve the quality of life for people with dementia..

The workshop aims to provide a forum for discussion on challenges and opportunities in bringing technology to support people with dementia. The workshop will feature the theme of ‘engaging people with pervasive technology’.

Research topics included in the workshop

This workshop will feature the theme of  ‘engaging people with pervasive technology’ in dementia research. Researchers from academic, healthcare, industrial and third party organisations are invited to contribute. Early researchers and researchers from healthcare are particularly welcome. Research areas include, but are not limited to:

Theme 1 – What are the opportunities of pervasive care technology?

Development of pervasive ICT systems
Human computer interface design
Behaviour monitoring and activity recognition
Knowledge representation and dissemination
Data analysis and interpretation
Sensor design and application

Theme 2 – User engagement

Key issues emerging when working with people who have decreased capacity for consent
Ethical issues for implementation
Methods for engagement
Pitfalls of engaging people with dementia, their carers and intermediate users

Important dates

Submission deadline:          25th February 2011
Notification of acceptance: 25th March 2011
Camera-ready copy due:    4th April 2011
Conference / Workshop:    23rd – 26th / 23rd May 2011

Format

Submitted papers should not be longer than 4 pages in standard IEEE two-column format.

For more detailed formatting instructions please see http://www.pervasivehealth.org/?page_name=author_skit.

Accepted papers will be published online in IEEE Xplore Digital Library (to be confirmed).

'Well-being' and the dilution of 'caring'

This blog post was originally drafted on 15 October 2008. Back then I'd noticed how in the media - newspaper, internet, radio and journals - there was increasing references to 'well-being'. It was everywhere. Even now it graces lips, airwaves, video, digital and conference platforms.

I was prompted to write because I actually felt that perhaps the public were being somehow sold a pup. I mean 'well-being' - it sounds wholesome, reassuring and cuddly so go on - take hold, give it a hug and look after it. Maybe it literally is a case of - get up and take it for a walk. You know you need to!

What well-being does do is it forces acknowledgment of physical AND mental well-being. In the summer I bought a copy of the British Journal of Wellbeing [BJW]. BJW features physical and mental health with some really interesting features, reviews and interviews. So, I raised my hands, sighed, stretched (felt much better) and accepted "OK well-being (or wellbeing*) it looks like you will go far."

I just have a worry though. Because the concept of well-being is fuzzy, there is a risk that the care agenda could be diluted at a time when specific health and social care populations and issues arising need to be kept in clear and unequivocal focus. Looking at the content I am reassured - there is depth here too. I say this recognising that the concept of well-being can also serve the health career model very well.

More to follow on BJW and well-being ...

http://www.dictionary.net/well-being

*I like hyphens as in socio-technical

Special Issue: The Challenges of Dementia: an International Perspective

Read the special issue on the -
Challenges of Dementia
- for free online!

This special edition of the International Journal of Geriatric Psychiatry contains a series of articles concerning current services and future plans for the care of people with dementia and their carers in a host of different countries. The articles reflect the myriad approaches in which various countries are improving the quality of life for people with dementia.

My source: Wiley

Music Gym - flexes its muscles

Hi,

My name's Matt, and I'm the Roadshow Coordinator for Decoda with some information which I hope will be of interest to those of you in or around the area of Lancaster and Preston.

Decoda have been successfully running a Music Gym down in Hastings for the past five years, continually developing and refining their techniques and technologies, whilst building a rapport with those who attend week after week. Using an innovative combination of music, images, space and fun the Music Gym provides an effective, flexible platform to engage and entertain people with a variety of complex needs. It’s also a great opportunity for parents, carers and those they care for to meet others from the local area and socialise. Others have described us as:

'fantastic use of colour and music, very interactive and inviting.'

'A really intriguing and dynamic approach'

'An excellent resource – we need more like this.'

'A great range of innovative, creative equipment... lots and lots of fun.'

'... a wonderful innovative idea.'

We have been invited to bring the Music Gym to Lancashire this month, and so we’ll be at the Salt Ayre Sports Center in Lancaster on the 16th and 17th of August, and at the Caritas Deafway home in Preston on the 18th [Deafway, Brockholes Brow, Preston, Lancashire, PR2 5AL].

If you would like to see the gym in action prior to making a decision (Or just see it in action without attending), I see no reason why you would not be allowed to observe any of the sessions we’re holding at the Salt Ayre. I appreciate that it is very difficult to form an opinion of what we do without seeing it in action, and this is a really good chance to do so. The 16th has been set aside for children under 16 years of age, whilst the 17th is for adults. Preston is undecided to be totally honest, we were contacted towards the end of last month, and are in the process of ironing out the final details. One benefit of this is that it’s an ideal date for those individuals who require a less busy venue, as we have not that long to publicise it. It is however a smaller venue than the Salt Ayre, so we may not be able to have our full facilities on offer on that date.

The days have been divided into 5 slots each as follows: 10.00-10.45 11.00-11.45 12.00-12.45 13.00-13.45 14.00-14.45

From our experience in Hastings, I would predict that the 11.00 slot will be the quietest, whilst the 14.00 slot will be the busiest, should that have any bearing in your decision.

In our continuing efforts to bring this to as many people as possible we are offering these places at £7.50 each if booked in advance £10 at the door (carers come free), additionally where this may be helpful, siblings can attend the session for £2.50. This is a great opportunity for people in the local area to get together, try out the facilities and enjoy the real benefits of the Music Gym.

Places can be booked online http://www.decoda.org/node/50 by phone or by post (contact details below).

If you require any more details, or have any questions at all please do not hesitate to contact me roadshow@decoda.org

Many thanks, Matthew Saunders, Roadshow Coordinator

Decoda - a social enterprise benefiting the local community South East Coast Regional winners of the Innovative Health and Social Care Technology Award at the NHS Health & Social Care Awards June 2009

Theaklen House Theaklen Drive St. Leonards on Sea TN38 9AZ Tel: 0845 2938354 websites: www.decoda.org www.musicgym.org www.myspace.com/decodamusicgym www.soundtherapy.org.uk BBC's South East Today film about the Music Gym is at http://www.youtube.com/watch?v=8j7v7pQ9kYQ

My source:
Foundation for People with Learning Disabilities

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

Carer's support evidence / measures and end of life care

The following e-mail was received this week from (Prof.) George Kernohan and includes correspondence with Mary A. Waldron, Research Assistant, University of Ulster (thanks to Mary for confirming the reference).

My responses to George's points are right justified, italicised.

<->

Peter,

I am beginning to find examples of Hodges’ model every day now.

Once you adopt the model as a framework George it does tend to frame everything,
so I am not surprised at your finding. Maybe there is a paper there too...

Today we had a second research meeting to consider a (more) rigorous attempt to evaluate the provision of ‘support’ to carers of people undergoing palliative or End-of-Life Care (EOLC). An area of care with a dearth of evidence. So we looked at one review from Grande et al. (2009). They say that:

There has already been considerable research identifying carers’ needs in EOLC. These include psychological support, information, help with personal, nursing and medical care of the patient, out of hours and night support, respite, domestic and financial help.^9,10,16–21 There is also a large body of research into adverse effects of care-giving, such as anxiety, depression, stress, strain, fatigue and mortality.^22–24
Given this strong evidence base, any further investigation into the prevalence of needs and adverse effects should mainly focus on under-researched groups to ensure that future interventions are sensitive to their specific concerns. This includes carers of patients with conditions other than cancer, including neurodegenerative disorders,²⁵ respiratory²⁶ and cardiovascular diseases,²⁷ to help us understand how differences in disease trajectories, awareness of the terminal nature of the disease and available support²⁸ translate into different carer experiences. Although carers of patients with dementia have been extensively researched, little is known about their needs during patients’ final phase of life.⁹ p.340.

(The numbers refer to references by Grande et al., I have extended the quote used here).

Thanks for this paper George (and Mary) which I will read in full.
I extended your quote to encompass some additional interesting ideas.

To move toward a plan for a more rigorous evaluation, I would like to use a simple framework: here we go!

I think I will be suggesting Hodges’ Health Career as a possible model.

:-) ! If I can support you in this George I am pleased to help.

This could provide a framework for all carer-focused interventions in a broad way. As always, it would imply that carers need to have their needs addressed in terms of science, sociology, politics and interpersonal needs. As I see it, the first step would be to ‘map’ the carers’ needs onto that framework (from publications, if necessary from carers themselves). The basic idea (I think) is that care should address the four quadrants:

• Science: (carer’s physical needs, information, instruction)
• Political: (policy that enables care for carer, finance, allowance)
• Sociology: (recognising that people need people, networks and “sharing” groups, story telling/hearing)
• Interpersonal: (psychological support, prevention of anxiety & depression)

Have you any thoughts or guidance on this “mapping exercise”?

Goodness, that's quite a question!

Plenty of thoughts George but not sure how meaningful ....
Basically, since a community mental health project in 1990s
I have always considered (as per standard approach of course) that a toolkit of measures are needed. Even when we start from that most basic of distinctions between demand and supply.

As per your approach if h2cm is considered as a circle, a spectrum -
(sometimes we must circle the square)
then (if holstic) the adopted measures should cover all the domains:

Political: (outcomes, carer, patient satisfaction, financial assessment (means testing), respite care frequencies, reviews)
Interpersonal: (mood, coping ability, anxiety, depression, sleep, HoNOS)
Sciences: (pain, general health scales, care complexity (measures?))
Sociology: (dedicated carer assessment tools, sociability - social network size, psychosocial measures... there are many out there)

George, I realise the above is a ragbag collection but - like yours - these are dimensions which can (must) be reduced. Now there is also emphasis on this area post Darzi and the 'new' quality agenda.

This will serve (and is serving) to emphasize the distinctions between measures:

Objective - Subjective
Quantity - Quality
Staff administered - Self (Patient, Carer) administered
Global/general - condition specific
Service centered: Primary care - Secondary care

While it is easy to spin dichotomies,
the NHS must (constantly) focus on this area whatever the policy emphasis:

NHS Information Centre: Measuring for Quality Improvement

NHS Information Center: What is happening on indicators for...?

NHS Inst. for Innovation and Improvement: Quality and Service Improvement Tools

Earlier this year I contacted the NHS-IC [enquiries at ic.nhs.uk] regards additional measures of quality suggesting that the health career model bears due consideration (research).

Mental health services (and others?) have recognised how the measures they use can be a chaotic, personally selected, preferred, legacy-mix of assessment tools. Dictated by Senior Nurses, Consultants, Senior Management and not the evidence base. Now these are assured (are they?) with purposed selection (a task worthy of an 'away day') and then supported with regular in-house training.

Last month Anne-Marie Osbourne-Fitzgerald, Clinical Development Nurse, with (her) Clinical Manager, Denise Banks (Cygnet Hospitals), met Michael Doyle (Univ. of Manchester & Edenfield Unit, Prestwich Hospital) and I one evening at the Trafford Center in Manchester. Our two hour+ discussion covered the health career model, documentation, approaches to formal assessment and future plans (aspirations!). In the time available we obviously only scratched the surface, but Mike and Anne-Marie brought along examples of their paperwork.

Mike demonstrated how the health career model can be used implicitly or explicitly. At the Edenfield Unit the domains are being used individually to make up what is a standard A4 portrait form. The model informs their existing documentation; rather than the explicit form of the h2cm with the 2 x 2 matrix.
(I have a MS Word version of the latter and must update this to other formats).

Legally, as we know if it is not written down, recorded then it did not happen.
Educationally however, the objective is also to get students - practitioners - to think - before they do.

Anne Marie's documentation example at Cygnet Hospital included The Recovery Star:

http://www.mhpf.org.uk/recoveryStarApproach.asp

As you consider the star's points against the domains of the health career model - where in the model are you?

Can this provide another means to define 'care pathway'? A way that is not masked, hiding behind political, policy rhetoric (and really service-centered)? There are without question some excellent tools available, so care needs to be taken not to re-invent the wheel - hence your literature search. In some tools the effort and engagement of patients, carers and the public is exemplary. It seems what is needed is a hybrid solution. There is no single measure.

It may not sound scientific, but the complexities of care mean that academics, clinicians and managers must resort to a pick'n'mix approach. There is a battery of evidenced tools each with their history, application context and issues log (Why not? Lack of the latter might denote that such tools are no longer in development / review). As a clinician also involved in training, managers need to listen and make some tough operational decisions. The comms 'traffic' between clinicians, their managers, and senior managers needs to improve even more. Since, just using the above as an example, the STAR approach may find us on a ramble in the humanistic domains, the constraints of the mechanistic domain prompts the clinician's to ask:

"If you want me to use this assessment tool, what other thing do you want me to put down?"

As we are all aware: There is only so much time in a day, week, month, quarter. ...

In follow up emails I directed Anne-Marie to -

http://www.p-jones.demon.co.uk/contexts.htm

If you scroll down there is some discussion and graphics I did quite a while ago. This deserves revision as per the rest of the website, but the ideas are there I believe which can inform your project George?

Back then - and here on W2tQ I have been trying to demonstrate the wide range of contexts to which the health career model can be applied. In our meeting that evening the well established Tidal Model was also noted. This has of course benefitted from specific development, as per research that has produced audit and evaluation tools (Stevenson, et al. 2002).

It might make a useful reflective article – or at least a conference presentation. Ideally it would lead us to a measurement or observation approach ...

I would relish the prospect of a paper George, or a conference presentation. Not just contributing as a co-author/presenter, but supporting and enthusing new authors. The 21st century belongs to our students. Hodges' model can act as 'stellar' nursery not just here in the UK and EU, but globally. And not just in our respective disciplines (mental health, palliative - end of life care, forensic nursing care), but in informatics - conjoining and championing the need for socio-technical perspectives.

In addition to the above and thinking before they do, all health and social care practitioners must be able to reflect after.

As one of the original purposes for the model in my initial interview with Brian Hodges, research work addressing these are much needed.

This conceptual framework can offer much in case formulation, evaluation, clinical supervision, patient, carer and public (health) engagement.

[In short -] Can we measure Hodges' model?

George K. (Prof.)

You started with a big question George and similarly here at the end.
We have to be able to do this. In the first instance taking apart your question - there are clearly several questions here:

PRACTICE:

Above you noted that:

This could provide a framework for all carer-focused interventions in a broad way. As always, it would imply that carers need to have their needs addressed in terms of science, sociology, politics and interpersonal needs. As I see it, the first step would be to ‘map’ the carers’ needs onto that framework (from publications, if necessary from carers themselves).

It would be interesting to consider the formal process and practice of dementia care mapping against Hodges' model. Perhaps the approach you seek is something similar? If carer's make use of self-assessments these e-documents might act as an input for text analysis tools? If appropriate you could also weight certain items according to the priorities of carers? This would build on other carer research adding validity to your 'final' objectives.

Carers and clients (patients, service users) can with due explanation, appreciate the health career model. The model has a role to play in health education. I can well imagine a proforma similar to the Recovery Star example above, but purposed for carers and underpinned with the health career model. We also need to remember the spiritual domain, which is collective.

Ultimately George, your question concerns our ability to measure holistic, integrated, person-centred, multidisciplinary care and to state the obvious: there is no single measure to do this. Several tools and approaches gathered within a conceptual framework might however provide an environment favourable for a hybrid measure to emerge - literally a cycle?

THEORY:

In the paper you referred to George - Grande. et al. (2009) state:

In parallel with the lack of empirical evidence, there has been a lack of theoretical and conceptual models for when and how support provision in EOLC should improve carer outcomes. To guide further research, palliative care may here benefit from drawing on models within other fields, such as gerontology, sociology or psychology. p.341.

I am biased, but reading the paper the potential of the health career model as a high level tool is convincing just from a 'disciplinary cross-match'. Intra-, interdisciplinary, metadisciplinary and transdisciplinary perspectives could be a focus. This in addition to the specific knowledge and practical domains of sociology and psychology and as the authors note models therein. I forget the reference at the moment (and will check), but I recall carers / family units being framed in terms of strengths and weaknesses. That is, events, characteristics and relationships impact on a family with either additive, subtractive or neutral effects. This would seem applicable here?

While Grande et al. (2009) note that the (informal) carer's role is hidden (and is routinely described in this way) I wonder if in palliative care there are other dimensions that accentuate this 'hidden, covert' role?

The politics of potential death and actual dying may be another factor the health career model can help illuminate in a constructive, enabling way? Health care, patiency, sick roles, caring are always mediated by 'politics'. Hence the need for a political domain in any conceptual framework that Grande, et al. may consider. On a negative front, the model might also illustrate alienation and related concepts?

In conclusion!

Thank you so much George and Mary for my being able to share your initial thoughts here and respond with some of my own. I hope this helps you take your work further? There may be a few points to follow, which I will add and as you have noted above there is much that could be done to take this further.

Peter J.

From: Waldron Mary [mailto:MA.Waldron at ulster.ac.uk]
Sent: 06 June 2010 17:49
To: wg.kernohan at ulster.ac.uk
Subject: Carers Support Evidence

George,

Jury's still out on the effectiveness of support interventions and programmes which support carers in palliative care. Not enough research. Lack of evaluation, lack of rigour, no conclusive research, but lots of policy advocacy of carers support and addressing of needs. Sample of lit attached.

Mary A Waldron,
Research Assistant,
School of Nursing,
University of Ulster.

Many thanks George and Mary for your ongoing interest, and to Anne-Marie, Denise and Mike.

Reference:

Grande, G. et al. (2009) Supporting lay carers in end of life care: current gaps and future priorities, Palliative Medicine, 23: pp. 339-344. DOI: 10.1177/0269216309104875

Stevenson C, Barker P and Fletcher E (2002) Judgement days: developing an evaluation for an innovative nursing model. J Psychiatric and Mental Health Nursing, 9(3), 271-276.

Stellar nursery image
My source: http://media-2.web.britannica.com/eb-media/60/21260-004-3C62CA58.jpg

Update - King's College London mental health SIG 17 May

With the title of my talk sorted here is the programme for the Mental Health SIG meeting:

Health Sciences and Practice Subject Centre
Room: 1.17 Franklin Wilkins Building (1st floor)
Franklin-Wilkins buildings, King's College London,
150 Stamford Street, London SE1 9NH

Monday 17th May
10- 4pm
King’s College London, Waterloo

Programme

10:00 Arrivals and Refreshments

10.30 Welcome and introductions
Bill Penson
Teacher Fellow/Senior lecturer in Mental Health,
Faculty of Health, Leeds Metropolitan University

11.00 ‘The Darzi Dementia care pathway- competencies’
Professor Paul Kingston
Faculty Director for Research and Scholarship
Staffordshire University

12.00 Lunch and Networking

13.00 ‘Hodges' model: a conceptual framework’
Peter Jones
Community Mental Health Nurse NHS,
Independent Scholar & Informatics Specialist

1400 Refreshments

14.30 ‘e-PsychNurse’ an EU funded project
Professor Mary Chambers
Director of Nursing
South West London and St George’s Mental Health NHS Trust

15.30 Future meetings and summing up
Bill Penson

16.00 Close

I can expand on my plans - broadly three 20 minute sections:

• Re-introduce the model, history, background;
• Explain h2cm's relevance, scope and applications - possibly with a brief exercise;
  
• Discuss publications to date, future publication plans to include the website and use of Drupal, with time for questions.
  

Presentation: King's College London 17 May Mental Health SIG

Can you join us at the Higher Education Academy Health Sciences & Practice Subject Centre - Mental Health SIG in London
17th May 1000 - 1600?

I am really looking forward to presenting at the Mental Health Special Interest Group next month. It looks a great prospect as I have an hour on the programme. The draft title does not really represent what I intend, paradoxically I will re-introduce Hodges' model and explain why the model is so relevant in theory and practice.

I will outline my presentation here in a future post and the programme overall. For my sins I am now also a sign-off nursing mentor, so being able to network is another great plus. More to follow ....

Here are some details about the SIG from their website:

Welcome

To date, there has been no UK wide, cross disciplinary special interest group providing a regular opportunity for educators to meet face to face - with a view to exploring common issues and challenges, sharing resources and influencing policy and practice in the field of mental health. Arguably, this has hampered educators’ capacity to shape and respond to new developments.

In February 2005 the ‘Common Ground’ event organised by the Mental Health in Higher Education project in partnership with the Health Sciences and Practice subject centre met to identify key issues facing mental health educators in nursing and the Allied Health Professions. Subsequently, the special interest group has broadened out to encompass all colleagues with an interest in sharing approaches and engaging in debate about educational practice and the implications of policy developments for learning and teaching about mental health.

Who is the Mental Health SIG for?

Anyone involved in higher education with an interest in mental health.

We are keen to bring together people from across all disciplines and perspectives (including lecturers, practice educators and user educators and carers with involvement in education) – those who are mental health specialists and those for whom mental health may be one aspect of a broader subject area.

Health Sciences and Practice Subject Centre
Room: 1.17 Franklin Wilkins Building (1st floor)
Franklin-Wilkins buildings,
King's College London,
150 Stamford Street,
London SE1 9NH

Point of care? The King's Fund - patient experience

The real 'point of care' is that there are several points with many perspectives:


Patient (person) - Care professional - Manager - Carer
Public (citizen) - Student - Lecturer - Service User Groups
Physical - Emotional - Political - Social
Patient - Inspectors - CEO information governance - Commissioners

Don't drown seeking gaps in processes. All of the P's count!

The King's Fund
The Point of Care: Improving Patients' Experience.

Hodges' model social care domain - patient, carer resources.

Image source:
Multiple Faces: Insight Management Group

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

Distorted care

Some musical performances are so polished, clear and (p)honed that we readily attribute them to the classical genre. There are experimental pieces that 'buck this quality trend' but the musicianship, melody and composition stand the test of time grabbing audiences by the ear, throat and heart. On the popular music front some bands - The Eagles spring to mind - are not universally appreciated for their sound, (sales), shine and harmonies.

Whatever the music though if you ramp up the volume enough - distortion happens. This disturbs and disrupts the artist's, composer's and producer's original intent.

The worry is that care can be similarly distorted, not only by those who can shout the loudest creating noise, but the political clamour that creates its own form of cultural background radiation. It becomes hard for everyone to listen and reflect on the track we've heard so many times since our teen years:
you know the one - 'Quality Care' by 'Informed Debate, Health & Social Lookyafters'.

Image my source: Sodahead.com

Additional link - BBC: Compulsory social care bill plan

Self-care in e-space and the need to Impress

Working with older adults you realise how unselfish a group they are with regards to their care needs: "spend the money on the children who need it, they are the future."

You also realise that although there are growing numbers of 'silver surfers' (sorry) and their number will swell - the use of digital technology by the general public remains yet another potential source of inequality.

Many years ago I came across HealthSpace (UK) as a fledgling approach and application. I was really impressed as it underlined the need for a generic conceptual framework for health and social care - from senior school through to older age.

It is often said that effective communication needs a channel that is noise free - well here in Hodges' model is a resource to reduce noise for health information across many contexts:

• education
• prevention
• consultation
• social marketing
• self-care
• care planning, evaluation and management
  
• carer support
• supervision

Demographics also underlines the opening remark in this post and for older adults and many younger that matter of choice arises when it comes to the deployment of digital technology. Yes, many forward thinking people will readily jump on board and use ICT to study, learn, commission, record and co-ordinate their own care - or that of a relative. But what about those who will not use HealthSpace or another personal health records [PHRs]?

For those who do not want to engage - are they to be literally pressed into service? Obviously not - and besides recruitment to the UK services is growing. Jokes aside though the pressure to get the public to add value to their own care is critical to the future sustainability of the health and social care system.

Which brings me back to HealthSpace and the following news on e-Health Insider:

'HealthSpace expansion plans shelved'

Last year’s Health Informatics Review outlined a wide-ranging role for HealthSpace, but the DH has now done a U-turn and demanded more evidence of the site’s value to patients before pushing ahead with further expansion.
...
An outline business case worth £80m to £90m – one source puts the figure at £98m - had been developed by CfH, which was to have been submitted to the Treasury earlier this year.

However, the DH is understood to have spiked the business case, seeking more evidence for the value of HealthSpace, which has not received the backing of Christine Connelly, director general of informatics.

Dr Neil Bacon, founder of the doctors’ website doctors.net and the patient website iwantgreatcare.org, said he was unsurprised that the DH had shelved its plans.

“I think this is their way of quietly getting rid of it,” he told EHI Primary Care. “In the commercial world, if a solution with more than 250,000 potential users had only been used by 400 people it would already have been put out of its misery.”

Dr Bacon said he believed there was a clear and growing demand for patients to manage their own health records but that innovative, entrepreneurial solutions rather than government-led solutions would meet that demand.

More to follow no doubt - but do take care even now if you live by the coast ....

Additional links:

Google Health

HealthVault Microsoft

DIY doctors: patients can boost NHS's value, 30 April 2009, HSJ, Paul Corrigan

Digital Britain

The Impress Service

The Royal Navy

Image source: Press Gang stamp

Smiley career choices

It is nice to use smileys in e-mails and something now we take for granted. It made me smile placing this one on the page...

It is quite something else though when your job involves helping to put real smiles back on real faces, or more importantly helping people find contentment in their heart. ...


Additional links:

Mental Health Nursing

60+ Social Workers

Social Work careers

Cash Transactions : Care Continuity

In programming major applications such as finance there is a need to ensure within the transactions and the database operations that mistakes do not occur.

The classic example is a transfer between two accounts:

def transfer(from, to, amount)
  from.debit(amount)
  to.credit(amount)
end

It is vital that the above method (example provided by Tate and Hibbs) does not fail after the debit. In Rails the transaction method help to prevent 'digital accidents' as follows:

def transfer(from, to, amount)
  Account.transaction do
   from.debit(amount)
   to.credit(amount)
  end
end

transaction is itself a method built into Rail's Active Record that helps to maintain the integrity of transactions. Which brings me to 'care'. ...

There are several blog posts here since you reach a stage in your career when the hard fought lessons of yesteryear have to be faced again but this time like after dinner wind.
There are many possible care transactions that arise.

Many have a specific context and frequently these are conjoined:

• timing
• relationships - trust
• responsibility - transfer
• care environment
• record (paper, electronic)
  

As to care transaction consider these:

def transfer(from, to, care_plan)
 Care.transaction do
  from.hospital(care_plan)
  to.community(care_plan)
 end
end

def transfer(from, to, day_care)
 Care.transaction do
  from.home(day_care)
  to.day_center(day_care)
 end
end

Wherever, whenever, whatever and whoever your transactions involve, take care of them and remember in health and social care (esp.) outcomes add up.

Don't forget to look after the however: the information, the knowledge, the promises ....

def transfer(from, to, promise_plan_of_action)
 Care.transaction do
  from.nurse(promise_plan_of_action)
  to.carer(promise_plan_of_action)
 end
end

Reference: Bruce Tate, Curt Hibbs (2006) Ruby on Rails: Up and Running, O'Reilly, p.35.

Independence and Quality of Later Life: A decade of research to support older people 14th May

The next KT-EQUAL event for all-comers is on 14th May in Bath.

It will showcase the outcomes of a decade of research to support older people and disabled people, especially:


- improving accessibility to the world outside of the home:
streets, neighbourhoods, parks, transport systems
the very spaces and places that many older people look forward to visiting.

- the better design of everyday products and packaging:
products which are not stigmatised as being for older or disabled people but are mainstream products, which are enjoyed by everyone.

- using new technology to support individuals in the self-management of chronic conditions such as diabetes, heart conditions, and the effects of stroke:
Can these technologies be easy to use and unobtrusive? Do they really they boost health, activity, confidence and well-being?

As well as presenting some of latest findings and developments, the workshop will also be looking to the future, especially at how researchers are coming together to make certain that older people benefit from the best of British Science by getting their findings into policy and practice.

The event is free and is open to anyone with an interest in improving the quality of later life - professionals from all sectors, policy makers, representatives of charities and voluntary bodies, older people and their carers, as well as researchers. It is being held in the centre of Bath so is easy to reach from the railway station. Bath in May can be idyllic!

Full details can be found on the SPARC website. Please be sure to register soon via the registration page.

Best wishes

Peter Lansley

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^
Professor Peter Lansley, BSc, MSc, PhD, MCIOB, FCOT
Director, KT-EQUAL – Knowledge Transfer for Extending Quality Life
School of Construction Management and Engineering, URS Building,
University of Reading, Whiteknights, PO Box 219, Reading, RG6 6AW, UK
p.r.lansley at reading.ac.uk www.sparc.ac.uk
^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^
My source SPARC mailing list

Squaring circles: Compressed patient care pathways = rich(er) patient experiences?

The use of Lean and Six-Sigma, their combination and other service improvement approaches has resulted in much more effective patient care pathways. A shining example is that of diagnostic medicine and subsequent out-patient appointments, apparently patients can attend for diagnostic services such as imaging and on the same day also attend for their first out-patient appointment. This saves time for all, with expensive imaging technology also proving its worth and RoI by working from 0700-2200.

Trust Boards are well pleased with such progress, but there is no such thing as a free lunch. Managers and execs know the lunch (diagnostics and imaging) isn't free, but quantitative aspects aside what does does this mean in terms of quality and assurance? Quality in the sense of:

• patient (and carer) experience;
• staff capacity to find and take advantage of patient learning (self-care, patient health career management) opportunities;
• assessment and evaluation of patient (carer) comprehension;

There is a circle to be closed by relating quality to quantitative aspects; such as, re-referral rates, re-admission, medication / treatment concordance, plus the infusion of intelligence from local and national patient related outcome measures [PROMS] to new patient journeys.

In information science there is the concept of information compression, taking out the redundancy - repetitive data in an image or text to save on processing, transmission, and storage. As Lean Six Sigma assists teams to remove tasks, processes that do not 'add value' then the result is a richer experience. The patient journey has in this sense been compressed. The patient has fewer hospital and clinic visits with fewer bus, taxi journeys, or they pay less in car park fees. Health personnel and specialists are primed to help and deliver services that really count.

What does this compressed - 'denser' experience - mean though? Does it mean that:

• patient's are exposed to more information (2-3 significant interviews / leaflets / instructions)?
• there is less time available for education, health promotion, info Px giving?

- or alternately:

• does this 'value packed' patient journey help by providing rapidly successive hooks - experiential threads to integrate patient (carer and staff!) learning?

It will be interesting to see answers to these questions and how extensive the scope of benefits are of these patient experiences across different care contexts.

Is there an optimal number for 'clinical encounters' before things start to go awry?

PROMS are quite specific (as they need to be initially), but amid richer and varied patient journeys there will be a need for other (national and local) measures. What about the extent and level of 'care complexity' and 'holistic care'?

Additional links:

Lesley Wright on lean thinking and respecting NHS staff, HSJ, Dec 2008.

NHS ready for PROM date. NDS News Distribution Service.

Image source: http://www.navyenterprise.navy.mil/knowledge/tools/sixsigma.aspx

Book chapter: Substance Misuse and Mental Health

With the chapter on socio-technical structures within Hodges' model due to appear very soon there is news of an exciting further project - a different publisher with a more purely clinical and social care focus.

Between now and 1 May I have accepted an invitation to produce a chapter addressing the holistic aspects of substance misuse and mental health. More to follow and a deadline to work to ....

1st KT-EQUAL Workshop: Enabling people with dementia and their carers through the use of new technologies

As you will know the mantle of SPARC is being passed to KT-EQUAL. This new EPSRC initiative is determined to ensure that older people, disabled people and society benefit from the nation's investment in research by making sure that research knowledge is transferred and used by those many stakeholders with an interest in the wellbeing and quality of life of older and disabled people. It will take a while for KT-EQUAL to be fully up-and-running, as staff have to be recruited and resources aligned to its special mission, however we do plan to run plenty of workshops in the months to come.

I am pleased to tell you that the first workshop, convened by Professor Gail Mountain, Enabling people with dementia and their carers through the use of new technologies will take place on 16th March, at Reading Town Hall (very near the railway station).

Dementia is an area of significant policy concern, demonstrated through the forthcoming publication of the National Dementia Strategy. This will identify targets for early diagnosis and improved interventions to promote better care. This workshop will provide participants with illustrations of best practice from existing and current research with a focus upon use of technologies which can promote enablement and quality of life for people living with dementia and their carers.

The workshop is free but places are limited, so please register your interest as soon as possible via the SPARC website www.sparc.ac.uk and follow the links.

Stop Press there are two new interviews with researchers available on the SPARC website: Dr Meredith Shafto talks about her research into those annoying tip of the tongue lapses which seem to become more familiar with advancing years, and Dr Maria Wolters discuses her research into improving computerised speech used by automated call centres, lifts, sat navs and other devices. These can be found on the audio interview panel on the right hand side of the home page. There are now 20 interviews available about a broad range of SPARC projects. Also, the SPARC web site has executive summaries of most of these projects.

Best wishes

Peter Lansley

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^
Professor Peter Lansley, BSc, MSc, PhD, MCIOB, FCOT
Director, SPARC - Strategic Promotion of Ageing Research Capacity
School of Construction Management and Engineering, URS Building,
University of Reading, Whiteknights, PO Box 219, Reading, RG6 6AW, UK
tel: +44 (0) 118 378 8202 fax: +44 (0) 118 931 3856
p.r.lansley@reading.ac.uk www.sparc.ac.uk
^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

First NHS Constitution Launched

FIRST NHS CONSTITUTION LAUNCHED

An historic signing ceremony to mark the launch of the NHS Constitution for England took place at Downing Street today. The Constitution, the first of its kind in the world, was signed by Prime Minister Gordon Brown, Health Secretary Alan Johnson and NHS Chief Executive David Nicholson.

The Constitution will give power to patients and the public by bringing their existing rights together in one place so they know what they are legally entitled to – and how they can exercise their rights as well as understanding their responsibilities. It also contains a range of pledges to patients, public and staff, which the NHS is committed to achieving. For NHS staff, the Constitution will mean an NHS-wide commitment to equipping them with the tools, training and support they need to deliver high quality care for patients.

Lord Darzi’s review of the NHS, High Quality Care for All concluded last summer that there was a case for an NHS Constitution to enshrine the principles and values of the NHS in England. The landmark document will put in one place what patients, staff and the public can expect of the health service. It is designed to safeguard the future of the NHS and renew its core values, making sure it continues to be relevant to the needs of patients, the public and staff in the 21st century.

Health Secretary, Alan Johnson said:

“This is a momentous point in the history of the NHS. Following on from Lord Darzi’s Next Stage Review, the launch of the NHS Constitution shows how its founding principles still endure today and have resonance for staff, patients and public alike. It will ensure that we protect the NHS for generations to come.

“The content of the Constitution is based on discussions with thousands of NHS staff and patients across the country and will form the basis of a new relationship between staff and patients – a relationship based on partnership, respect and shared commitment where everyone knows what they can expect from the NHS and what is expected from them.”

The Constitution is the result of extensive consultation with staff and patients, which was led by strategic health authorities and overseen by independent experts on the Constitutional Advisory Forum (CAF). In response to the consultation and report published by the CAF, the final Constitution includes:

• A right to makes choices about your care and to information to help exercise that choice;
• A new legal right to receive the vaccinations that the Joint Committee on Vaccination and Immunisation recommends that you should receive under an NHS-provided national immunisation programme;
• A right making explicit your entitlement to drugs and treatments that have been recommended by NICE for use in the NHS, if your doctor says they are clinically appropriate for you;
• A right to expect local decisions on funding of other drugs and treatments to be made rationally following a proper consideration of the evidence;
• Clear and comprehensive rights to complaint and redress.

David Nicholson, NHS Chief Executive said:

“Ara Darzi asked me in his interim report to lead a work programme exploring the merits of a Constitution for the NHS. This has been a fantastic opportunity to listen to what matters most to our patients, public and staff and to use this to set out clearly the values and purpose of the NHS system.

“It also pulls together in one place what the patients who use the NHS, the public who fund it and the staff who provide it, can expect to receive from the NHS, and the contribution they can make themselves.

“I’m proud to sign off the Constitution today and am sure that it will be a powerful driver of change in the system, and help us to deliver care fit for the 21st century.”

Professor Steve Field, Chairman of the Royal College of [General] Practitioners, said:

"By stating that patients have a responsibility to register with a GP practice, the NHS Constitution reinforces the central role of the GP and the importance of continuity of care in the NHS today and in the future.

"We become GPs because we want to help people improve the quality of their lives through better healthcare. GPs want to provide the solutions and lead improvements and innovations. Having the Constitution in place will help us improve standards and care for all our patients, whoever and wherever they are.

"The new NHS Constitution is something which all GPs, their practice teams and NHS staff can commit to and have confidence in. I'm convinced that it will be an important, defining point in the development of our NHS."

Sally Brearley, Chair of the Patients Forum said:

“The NHS Constitution is a very valuable re-affirmation of the principles and values of the NHS. I was delighted to be involved in the process of drawing it up. It demonstrates the commitment of Government to the NHS, and of the NHS to its patients. We know that the public supports the NHS. The Constitution provides an important opportunity for patients, public and NHS staff to focus on giving our best to the NHS, and getting the best out of it.”

Also published today are the Handbook to the NHS Constitution; a Statement of NHS Accountability; regulations, directions and guidance to support the new rights around choice, vaccines and the funding of drugs and treatments; and our response to the consultation and the CAF’s recommendations.

The Health Bill, published last week, will underpin the new Constitution by creating new legislation to ensure that the Constitution will be reviewed every 10 years and a duty on NHS bodies, as well as independent sector and third sector providers of NHS services, to have regard to the Constitution.

ENDS

My source: COI’s News Distribution Service is the public sector leader in the electronic delivery of news releases and information direct from Whitehall departments, and more than 100 agencies and non-departmental public bodies, to the national, regional and specialist media. COI’s News Distribution Service is the public sector leader in the electronic delivery of news releases and information direct from Whitehall departments, and more than 100 agencies and non-departmental public bodies, to the national, regional and specialist media.

Additional links: Patients, Carers and Citizenry resources:

Patients Forum
Hodges' model:
SOCIOLOGY Knowledge Domain - Patients and Carers ...
POLITICAL knowledge Domain - Citizenry, Activism ...

Pervasive Health Workshops Announcement: inc. Technologies to Counter Cognitive Decline (TCCD)

Received from CARING-TEC-RESEARCH at JISCMAIL.AC.UK:

Pervasive Health Workshops Announcement

You are invited to submit papers to the following Workshops:

1 - Technologies to Counter Cognitive Decline (TCCD) : http://www.tccdw.org/
Paper Submission Deadline: January 31, 2009

2 - Wireless Pervasive Healthcare (WiPH): http://www.wiph-workshop.org/
Paper Submission Deadline: January 31, 2009

3 - PervaSense09: Situation Recognition and Medical Data Analysis in Pervasive Health Environments: http://www.pervasense.org/
Paper Submission Deadline: February 10, 2009

4 - Connectivity, Mobility and Patients' Comfort (CMPC): http://www.cmpc.eu/
Paper Submission Deadline: January 31, 2009

5 - DwC09: Designing with Care: http://www.designingwithcare09.org/
Paper Submission Deadline: February 10, 2009

All accepted submissions will be published in IEEE Xplore digital library.
For more information you can visit Pervasive Health Conference website at:

http://www.pervasivehealth.org/