A victory of rule rigidity and risk management over compassion and common sense

Last week there was  a 92 year lady on the ward who was unable to stand but wanted to go home where she lived alone. I was requested to do a Guardianship application even though she was cognitively sound. I delayed this because I wanted to see how she would process our conversations about her wishes, which I validated and genuinely sympathised with. I was clear with her about the hospital view of ‘duty of care’ (in the context that they wanted to discharge her).

We understood each others positions and developed an amicable relationship. She appreciated my moral support. Over the period of 10 days she began to  participate in physiotherapy. I believe this was a result of my supporting her wish to go home and identifying the need  to at least to be able to transfer from her bed to wheel chair to be even vaguely safe.

She did go home. She had a neighbour literally ‘pick her up’.   Her Aged Care assessment was for high level care and her care providers said they were unable to provide this, and therefore provided nothing. The Community Nurses, since she is no longer ‘unwell’ said they don’t do ‘welfare’ visits.

For me this is was victory of rule rigidity and risk management over compassion and common sense. It is unlikely she will last long at home before the next crisis, but she needs to go through the process of saying good bye to her home and independence her own way. That’s my view. Since the services who are paid to provide for the aged at home wouldn’t call in and keep an eye on her I enlisted a volunteer church group to do that and to call an ambulance when it becomes necessary. I also notified her GP. I should clarify she lives 45 minutes from me in a different town and shire or I would have done it myself.

There was an article in the Sydney Morning Herald this week about a young indigenous man who died because   paramedics wouldn’t attend without police protection. There are times when intelligent flexibility is required; like having the family accompany them and guarantee their safety, or for the Aged Care service to provide  surveillance and support whilst being very clear that they do not consider the elderly woman to be safe.

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Forget your professional ethics – just do it

I have a  woman in her 90s in hospital who I am expected to do a guardianship application for. She is very intelligent and cognitively above average, can actually do that counting backward by 7s thing! She lives in a nearby regional centre and wants to go home there. She is however de-conditioned and can’t stand. She has the idea in her mind that she just needs rest and after that it is mind over matter. I have delayed the Guardianship application – for which I will be challenged, to give us time to talk it through and process it and to see if she can accept that she is no longer capable of living independently (alone) at home, or if we can come up with another option than a  high care facility. To have any chance of going home she would need to go to rehab which she is declining at present. Our physios on the ward don’t have the equipment to work with her  in her present condition so she would need to go to larger facility. It takes 2 or 3 people to move her. She has a lot of pain in her legs. She wants to go home, she doesn’t care if she dies, she says, ‘ I’m 92′. She is not worried about being unsafe she says’ I’m unsafe here’ (she had a heart incident on the ward).
I have informed her about the hospital ‘duty of care’ attitude and the fact that they will take it to the tribunal if necessary. But of course that just upsets her and makes her cross – she says they have no right and I’m inclined to agree, hence my delaying tactics.
The main pressure to process the guardianship is from the Aged Care case manager, an RN, who just sees it as a matter of fact. The lady has no family in Australia and won’t countenance any attempt to contact those she does have, and says her friends have all died. One neighbour has helped but they don’t really like each other. She’s on the aged pension.
My decision so far is to plod along with my relationship with her and see what if any movement we can get, or further information (difficult as she prefers to talk about her life and past – was an alternative healer in Sydney). For me this situation raises issues about the right to self determination, respecting her wishes, the rush and push to move people out of the hospital, and the pressure on workers to be ‘provider driven’ rather than operate within professional values and ethical systems.


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‘System participants’ inform local action on hard to reach services

Equity of access to health services is a key goal for primary health care internationally and in Australia (WHO, 1978). The systems used to gain entry to health services can impede or facilitate access, engagement and health outcomes. Equity of access is a key factor in the social determinants of health (Freeman et al, 2011). Rural people are among those living with disadvantage who have poorer health and are more likely to be dependent on free public services. People who live with disadvantage experience more social exclusion, and stress and have less control in their lives, the social determinants of health.

A rural Australian study (Duncombe 2008) consulted people who were active participants in a service entry system (system participants). The system participants were; people referring in, people seeking a service, and people taking initial inquiries. The study found that the inclusion of system participants in health service planning and delivery, could inform local action to make services more accessible.

Individual interviews were based on the question, “What for you, are the features of a good intake system?”  The themes that came out were: the vulnerability of the people seeking public health counselling; the need for prompt, reliable first contact; the need for clear, consistent information; the preference for direct contact between professionals; the quality of first contact; and problems arising from unfilled positions (Duncombe 2011).

Some of the problems were readily addressed by local management: clearer signs, not using answering machines, using on-site intake and responding on site rather than re-referring. Information about service entry from system participants identified important issues. Research in health can be extended beyond the people using the services to include other people, in this case, referring professionals and reception staff. If primary health counselling services are to be accessible under Australia’s new private and non-government delivery model, it will be important for the Primary Health Networks (PHN) to make their services accessible to the most needy and the most easily deterred.

This study suggests that consulting with system participants can provide information about the impact of health service entry systems on the most vulnerable. Involving system participants in the design of the entry system is inclusive practice. In this instance it alerted the local service to issues, some of which were readily addressed, and in doing so contributed to local action on the social determinants of health.

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Inadvertently locking out the most needy from health services

In 1971 Tudor Hart believed that the people who most needed health services were the least likely to receive them, and that turns out to be true. His ‘Inverse Care Law’ is valid today. Since then Marmot and Wilkinson have identified that health is better at each step up the economic ladder AND that there is an equally direct relationship between health and social status. Soooo, the people who need health services most have the least financial resources and the least social resources. The social resources most implicit are control, stress and inclusion.

What I found in a small local study of people seeking free public counselling services surprised me even though I’ve been working as a counsellor and therapist for many years: the people seeking those services were very vulnerable. They were in social, emotional and psychological crises. One of my respondents had a daughter in her late teens who had memories of sexual abuse triggered and went into crisis. It took six weeks to get access to the sexual assault counsellor. The position was only filled halftime during staff leave and the casual staff member was unable to keep up. The intake/entry system being used relied on a landline answering machine. A period of phone tag ensued during which the young woman descended into self harm and required medical intervention.

It is very easy to exclude vulnerable people – they may be depressed or anxious, they may be conserving their phone credit or have difficulty with transport and they may not be very assertive. From the trauma and domestic violence literature we know that people who have suffered abuse or bullying become poor at valuing their own needs.They lose motivation and assertion. Any system that is not warm, welcoming, well known and pro-active will almost inevitably lock them out.

Services that; use call centres, are limited to cities and regional centres, that have security screens, limited parking, poor public transport, formal staff manners, and  intake interviews, assessments , and waiting periods before an engaged response are problematic. The research and evidence for this is well documented. Services with flexible entry, multi-disciplinary staff, co-located services, respectful, warm and non-hierarchical relationships and that are genuinely inclusive, are better at engaging those with the highest needs and vulnerabilities.

This needs consideration in the restructuring of primary health services and the entry systems that are to be used, for counselling services, but also for child and family, addictions, mental health and aged care. In the first instance how are we going to ensure that the complex jigsaw of non-government and private practitioner services are as visible and local as the Community Health Centres have been since the 1970s in towns and suburbs across the nation? Will this ever be a public discussion?

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The bottom and the top in health and education

The view from the top is different from the view at the bottom. As with binocular vision it can be helpful to have access to both. Unfortunately this often doesn’t happen.

In my research on health service entry I found that people referring in, people seeking services and people working at reception tended to share perceptions of what happens at the entry to services and what the issues and opportunities are. Their views are quite different from those of the senior managers.

Executive staff are trying to address KPIs that include, if not focus on, economic and political imperatives. People referring in, people seekng service and reception staff are trying to facilitate entry, access to and engagement in services. Immediately we see the goals at the bottom amd top of the organisation diverge.

As with vision, this divergence can be powerfully informative, if you use both eyes. Executives however have an understandable tendency to privilege their own view and not actually be familiar with the views of those at the service interface.

In my research on access to primary health services the view at the bottom was concerned about the vulnerability of people when they were looking for services. They noted how impersonal and unresponsive systems could lock people out whereas personable and welcoming systems helped people engage.

Executive staff by contrast were concerned with system efficiency and consistency. They preferred systems that were automated, treated everyone the same and prioritised entry according to category of service required. In my view they mistakenly conflated consistency with quality.

The most resourced and least vulnerable people are the most likely to be able to negotiate impersonal mechanistic systems. The most needy are the least likely. Executives could learn a lot from their front of house staff.

Interestingly I am now observing a similar phenomenon in tertiary education. Restructures arising from the perceptions at executive level that are not informed by engagement with staff who interface with students, nor with the student experience itself.

At the School office level and in academic-student relationships
personal and flexible responses are obvious imperatives for engagement and retention especially for vulnerable students.

At executive level, centralising and mechanising responses to student enquires in the pursuit of efficiency and consistency are privileged inadvertently breaking down the very relationships – school office and academic- that bind and support students to their provider through identification and belonging at the school level.
This is particularly ironic given tertiary institutions are well endowed with researchers who are producing the evidence that can tell them this.

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Privatisation and falling standards of care

Instead of access to an experienced public service gero-psychologist who was available for assessing behaviour issues in ageing people in hospital, we now have to use an NGO. The NGO in this case has a lesser qualified, less experienced staff member whose 2 1/2 page report told us what we already knew.

The move by government to divest services to NGOs is happening at a rapid pace and without evidence for its efficacy or public discussion. Is this just about the philosophical belief in small government?

Is it going to be efficacious in the long term? If we can’t get a proper behaviour plan our person either stays in hospital at great public expense, or returns to living on the street and his circumstances will deteriorate until he’s readmitted.

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Homelessness as a lifestyle choice

Interesting conversation with a Housing Department Officer yesterday. I  asked two questions:

  • Is the department aware that many homeless people cannot complete their application forms? (The forms are intimidating , many people who live homeless are not fully literate and they often don’t have documentation).  Answer  – yes
  • Is the department doing anything about that?                                                               Answer – It’s more complicated than that. My interpretation, ‘no’.

This exchange was followed by further conversation, the upshot of which was  that the officer said that the people living homeless in this area needed to make a choice between ‘lifestyle’ and relocation. So, now apparently, like living in an unserviced remote aboriginal community on your traditional homelands, living in your own town homeless and in grinding poverty, is a ‘lifestyle choice’.




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Homeless health

A third of our small hospital’s patients are homeless and thus can’t be discharged. It is costing $700 per day to keep them on the ward. One has been here over 6 months, that’s  over $100,000. It would be so much cheaper to put them up in a unit and have services coming in, and that’s what they want too.

Homeless peope have similar morbidity and mortality to aboriginal Australians. They tend to have mental disorders especially anxiety and post traumatic stress disorder, and closed head injuries. They have extremely high stress levels and are subject to predators, increasingly people using ice, on the streets.

In our town we have no access to accommodation for palliative or chronically ill homeless people and apparently ‘upstairs’ Health doesn’t talk to Housing. If they did we could house these people and provide services and Health could pay and come out streets in front. Any other rural areas , or anyone else at all actually, having this problem?

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Inclusivity and the ethics committee

How is your ethics committee dealing with inclusive research?

Social work is a social justice project and in our teaching we alert our students to structural factors in our cultures and societies when they have limiting implications for the opportunities of particular groups. This is inherently linked to the empowerment project. Whether for homeless young men, women affected by domestic violence or people with a mental illness we are committed to advocating for their access to services, supporting their development of their own confidence to speak up and working for social change that validates their right to be heard.

In the study of disability researchers have made important progress in the inclusion of these excluded voices. As a social work researcher this is really exciting stuff. The voices of children, the intellectually disabled and other ‘vulnerable’ people will increasingly be heard and included in the knowledge base of western social research.

Historically ethics committees have been inclined to protect these people from research on the basis that they may not have the capacity to give consent (children, intellectually and mentally disabled) and that they require protection.

There is a power disparity, at least potentially between any researcher and their participants. The researcher establishes the parameters of the research including its conceptualisation, how that conceptualisation will be operationalised and what and how it will be measured or characterised. This is equally true for quantitative research where values are embedded in statistical processes, choice of variables and measures, prior research and research procedures. It is more obviously true of qualitative research though more acknowledged.

Managing this power disparity is of concern to ethics committees. In research with aboriginal Australians these can be referred to aboriginal ethics committees. If those other voices are going to be included in research and thus our knowledge base, our ethics committees will need to be able approve research in which they can be included and their safety to do so ensured.

One of the issues that arises from this is that of consent. Typically we have a participant information statement and and a participant consent form. While ethics committees encourage us to use accessible language they still tend to be formal, they require a signature and of course literacy.

Some alternative ways of giving consent have emerged including: if the person turns up to participate in a research activity, they are deemed to have consented. This would be predicated on them knowing what they were getting themselves in for. This can be done by verbal explanation and consent collected by voice recording. This recording can include any discussion or clarification that takes place.

Instead of expecting people to hold onto their participant information statement, the purpose of the research can be re-stated at each contact and commitment to not affecting any service, and freedom to withdraw at any time also re-iterated at each contact.

What strategies for inclusion have been approved by your ethics committee?

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Practising Social Inclusion

A Book Review

Ann Taket, Beth R. Crisp, Melissa Graham, Lisa Hanna, Sophie Goldingay, Linda Wilson

Routledge, New York, 2014

311 pp., ISBN 978-0-415-53107 $48.75 (paperback)

This is where the left right divide often pivots. Should we bother with the wellbeing of people who are affected by disadvantage or should we leave it up to them. Ergo, is social disadvantage the fault of the individual or a structural issue. Pretty obviously both but we’ll tend to cluster around ‘yes, a humane sophisticated and wealthy society should attempt to ameliorate the worst of structural disadvantage’ and ‘no, we can’t afford to help people who don’t help themselves and shouldn’t be indulging in a ‘nanny state’.

This book is for people who observe the structural issues that trap some people, families and communities and believe that reducing these impediments is an essential social and economic investment.

Taket et al’s (2009) previous volume Theorising Social Inclusion looked at the dynamics of structural and cultural inclusion and exclusion. In this new volume they make a worthy contribution to the task of  providing signposts to action.

The 20 chapters are grouped in seven parts: Introduction (Scoping social inclusion practice), Practising inclusion in policy, Practising inclusion in service design, Practising inclusion in service delivery, Practising inclusion in community life, Practising inclusion in research and the Conclusion (Implementing the social inclusion agenda).

In Part 5, Inclusive service development the chapter by Pollock and Taket,  Exploring a whole-of-organisation approach in the community service sector there is a detailed indication of the type of methodology required to address disadvantage at the organisational level. This is rather lovely in how it brings into focus the paternalistic and disrespectful way many of our human services are delivered. Not that the chapter critiques others but it does specify the processes and challenges of being mindful and purposeful in the attempt to be inclusive across three programmes in a large non-government organisation. Six months to build the required relationships and engagement alone. Straight up it is clear the impediments to being inclusive; the expense of the time required alone, it is so much easier to just dump a programme on top of those in need and then if it doesn’t work blame them.

The challenges of using ‘experts by experience’ in a service development or research team are shared and grappled with here and in Wilson and Campain’s, chapter 16 Recognising the value of social relationships as a process of inclusive research. In this latter they describe how inclusion could be somewhat marginal according to the ability of some of the people involved, but that marginal  involvement itself was valuable.

I was also taken by Foster and Freeman’s chapter 17  Examining the notion of informed consent and lessons learned for increasing inclusion among marginalised research groups. In particular the observation that formal Participant Information Statements and Participant Consent Forms ‘can stifle participant recruitment’ in the wider population, quite aside from any desire to include ‘minority or socially excluded groups  (who) are underrepresented in Western research’. They make a case for further training for ethics committees to understand alternative forms of consent especially in non-invasive social science research.

Practising Social Inclusion is a singularly useful volume for those genuinely interested in the lived experience of people who are affected by disadvantages of all types, and actually want to involve them in the process of collecting and using that knowledge.

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